Lyme Disease News Blog

Rethinking Lyme disease treatments

Lyme Disease Research Database — 2012-01-29T13:52:31-05:00

Whenever somebody else talks about their battle with Lyme, whether it’s about the symptoms, diagnosis, or treatment itself, I get a deep sense of validation. It’s a mixture of relief that I’m not crazy and empathy for the person who went through a hell-realm that I know intimately. My dad’s generation called these foxhole tales, shared experiences while hiding from a hostile enemy.

Celebrities’ stories have a potent affect on our collective notions about disease. When someone famous for car racing or acting or novel writing, or when the President of the US (GW Bush) has fought and defeated the same powerful foe as we have, we want to know their stories. We may not be equal in status but we’re equally brought to our knees by the Lyme bacteria. Hearing their stories about dealing with Lyme might trigger an idea that works, or give us strength to try a new approach.

Parker Posey was diagnosed with Lyme disease in February 2009 and received the standard IDSA Lyme treatment of antibiotics. After completing the round of antibiotics and experiencing a return of her symptoms, she decided not to continue on a second round and instead turned to a holistic approach involving detoxification, diet and supplements. Her experience led to her involvement with a documentary film by rethinkingcancer.org, the story of five cancer patients and one person with Lyme disease who all made the decision to treat their diseases through alternative means, and who have all lived years beyond the time their doctors predicted.

Posey asks: “How can a natural approach to healing oneself be considered so unconventional? Why do we think we can't play an active role in getting healthy? Why do we give ourselves away so easily to pharmaceuticals that deplete our system and confuse the natural healing process?”

Lyme patient David Walant has been free of Lyme for 20 years. Listen to him in this brief clip from the webpage of rethinkingcancer.org.

Karen Allen, who played opposite Jeff Bridges in Starman, was interviewed in 2010 on the blog, Macrobiotic Adventures, about her difficult journey through Lyme disease and back to health. Her story is familiar to almost everyone with Lyme, it’s a series of tortuous misdiagnoses and failed cures, and then finally a way through the pain and confusion and back to a normal, creative life. The interview is fairly long, but very intriguing. Karen talks about her dynamic healing experience with the parasite zapper invented by Canadian Dr. Hulda Clark.

I hope you find these clips inspiring, as I have. Remember you are not alone and you’re not crazy. Change your diet if you think it will benefit you. Change your sedentary life and exercise every single day. Stay limber, stretch and relax daily, and surround yourself with loving friends. It’s your life and it’s worth every precious moment you have to get well.

Cleansing for health post-Lyme Disease

Lyme Disease Research Database — 2012-01-15T14:02:43-05:00

January invites fresh starts. So it’s no surprise that cleansing, colon cleansing to be specific, is on the minds of many. A lot of us abandon our usually healthy diets as we travel or feast with friends and families over Thanksgiving and Christmas. Now that we’ve decked the hallways, it’s time to clear them out.

In my life BL (before Lyme,) I had embarked on dietary healing cleanses such as juice fasts quite a few times. Bear in mind, I grew up in California and one of my first jobs after high school was at a health food store, so my behavior wasn’t out of sync. But health food stores were new and not quite popular yet. Even in SoCal in the 70s - 80s you might be dubbed a little weird if you shopped in one, especially wearing your Birkenstocks and tye-died t-shirts.

Pre-internet days now seem like ancient history, but these stores always had an intriguing books section which I gravitated to. I sipped many a smoothie while reading about the virtues of sprouts, organic veggies, the healing power of vegetable juices, herbal formulas and even (ahem), enemas. Since learning about the function and importance of the colon, it’s always made sense to me that an occasional cleansing could be very helpful. Keep things moving on out. Now of course the internet is a rich source of research on, and recipes for such cleansings, including full-color images of the dreadful gunk that people have dredged from their lowlands.

Having been through Lyme’s crucible, I would never suggest that someone still healing from Lyme Disease try a colon cleanse. I haven’t yet asked, but I doubt that many Lyme doctors would advise it, based on my own experience with frequent and painful Herxheimer reactions and the Lyme symptoms themselves.

However, I’m currently on Day 6 of experimenting with an herbal intestinal cleanse. I decided to go for it because I’ve been feeling so incredibly normal for more than a year now. This is my first time since healing from LD and going through many years of both traditional and alternative Lyme Disease treatment. I’ve got a good feeling about it. Over the holidays, I did experience a few skin-breakouts and some sort of shingle pain that I attribute to chronic Lyme symptoms. It seems to happen every winter as the weather grows chilly & dry and I spend more time indoors with the heater on. It’s too early to come to any real conclusions, but since Day 1 I’ve noticed a distinct reduction in swelling in my tummy, and my skin breakouts have almost completely faded. The skin isn’t itchy or red as it has been for over a month. I haven’t had any negative effects from the herbs, no Herxing (thank goodness!), no brain-fog, no skin rash and no fatigue. In fact I’m super energized and I’m off to a dance class as soon as I finish this post!

Drinking more water (one doctor mentions that we should all be drinking nearly a gallon per day) is so important. And you know how I feel about exercise - it’s the miracle cure when you can possibly swing it. But on top of these two things, it seems to be helping me to focus, at least for a week or two, on cleansing my colon again. Remember, I’m no doctor and I’m certainly not doling out recommendations here. But I know sometimes it’s helpful to hear someone else’s experience.

I can’t remember where I copied this quote from so apologize for the lack of acknowledgement. But in the spirit of the new year and its power & potential for healing, I want to include it here:

"The future is just the past catching up with us. Today is the preview of tomorrow's reality. In the future we will say one of two things. ‘I wish I had’ or ‘I'm glad I did,’ but we make that choice today."

If you’ve cleansed lately please tell me what your experience was. I’d love to hear from you, especially if you’ve had Lyme.

How to recognize Lyme symptoms in your child

Lyme Disease Research Database — 2011-12-06T10:44:48-05:00

Probably the most frightening thing, aside from contracting a Lyme infection yourself, is discovering that your child has Lyme. Parents number one role is to protect, after all. We are the first line of defense between our kids and the big, bad world. We’re hardwired to keep broken glass, vampires and werewolves at bay, to say nothing of the lions, tigers and bears. But some adversaries come in small sizes. Sometimes they’re even invisible to the naked eye.

Lyme shares a long list of symptoms with a number of other illnesses. So what sort of treatment do you give if you don’t know the difference between one disease and another? How can you tell whether your kid has the flu or he’s suffering with Lyme? You find your mind racing to find answers, to fill in the blanks. But, you may reason, you never saw a tick so therefore it can’t be Lyme.

One thing we have to bear in mind is that it’s possible to get a tick bite that nobody notices. You may not have seen any ticks on your child, but if he or she was playing in an area where ticks are prone to live, it is possible that your child was exposed.

I’ve heard some medical doctors say that Lyme disease cannot be transmitted from a tick who hasn’t been attached to a person’s skin for less than 24 hours. I’ve heard them say 36 and 48 hours as well. But according to noted researcher and former Yale post doctoral-operative fellow in therapeutic radiology, Dr. Eva Sapi, there is no evidence to suggest that Lyme can’t be contracted in less time than that. She and her research students in Lyme treatment regularly go on tick-gathering forays in the forest near their New Haven, CT research lab. She has seen people contract Lyme disease when a known-to-be infectious tick has only been attached to their skin for an hour or two, no longer.

People often make a mistake in thinking that if the bull’s-eye rash that is so closely associated with Lyme isn’t present, than it just can’t be a Lyme infection. However, that simply doesn’t seem to be the case. Although a Lyme infection can be the most likely suspect if that rash is present, the absence of the rash does not indicated that it isn’t a Lyme infection. So if you haven’t seen a tick, and you don’t detect a skin rash, what do you look for?

Lyme symptoms in your child may include the following:

flu-like body aches that don’t improve with sleep
fever
headache
rash
crushing fatigue that is not relieved with rest
joint pain
sensitivity to florescent lights
night sweats
nausea and vomiting
insomnia
forgetfulness and confusion

If you suspect that your child may have Lyme, please try to find a good Lyme literate doctor. Call ILADS and ask them to give you the name and contact info for the doctor or pediatrician nearest you. Don’t be surprised if a knowledgeable Lyme doctor, who suspects that your child may have a Lyme infection, starts treatment with antibiotics before test results are in. An untreated infection can involve the brain, heart, joints and all the systems of your child’s body. Early treatment for Lyme is so very important, as the disease has three stages. Treatment during stage one is the most reliable way to prevent further progression of the disease.

Diagnosis and treatment of Babesia & other coinfections

Lyme Disease Research Database — 2011-11-29T14:47:13-05:00

If you have been treated for Lyme Disease but you’re still in pain, you may have MCIDS, or Multiple Chronic Infectious Disease Syndrome. Dr Richard Horowitz coined this term for patients presenting with symptoms of multiple chronic infections, many that don’t test positive with the standard tests. Challenges to the immune system include chronic inflammation, problems detoxifying heavy metals, sleep disorders which in turn exacerbate inflammation, and mitochondrial infections. Patients with multiple coinfections may have a suppressed immune system, and ultimately it is the inflammation that causes the problems.

Dr. Horowitz has treated almost 12,000 patients with Lyme Disease over the past twenty years. He has observed that most of his patients have had multiple infections, viruses and parasites and that for this reason, the standard of care recommended by the IDSA has been less than effective. Patients may have one or more coinfections such as Babesia, Erlichia, Bartonella, additional piroplasms which don’t test well with the standard testing. Some have hormonal disorders, nutritional and enzyme deficiencies, GI problems, autonomic nervous system disfunction and other symptom complexes.

To describe the challenge of treating a patient with MCIDS, Dr Horowitz uses the following analogy. “It’s like the patient has ten nails in their foot, and you pull out only one. They still have pain.” Doctors need to address all of the factors and overlapping symptoms.

Also, there are evidently different strains of Borrelia and Babesia that may not be detected with the ELISA or the Western Blot tests. Recent evidence suggests that new species of tick borne coinfections may be arising and may occur in regions of the US and worldwide. One tick bite can transmit a cesspool of multiple infections.

Here is an intriguing paper by Dr. Horowitz illustrating the interest in investigating Alternative Medicine to treat Lyme and coinfections that elude conventional Western medicine. Herbs, Hormones & Heavy Metals. (.pdf)

Dr. Richard Horowitz is the President of the International Lyme and Associated Disease Educational Foundation. He serves the Lyme community in multiple ways, primarily as an internist at the Hudson Valley Healing Arts Center, in Hyde Park, New York. In 2007, the Turn the Corner Foundation named him the Humanitarian of the Year for his ongoing work with chronic Lyme disease.

Alternative treatment for Lyme - Cowden Condensed Protocol

Lyme Disease Research Database — 2011-11-21T11:42:58-05:00

The latest Cowden protocol -- Cowden Condensed Support Program -- was featured last summer (2010) in an article in The Townsend Letter by the Lyme Disease Research Group. Personally, I had brilliant results from the original Cowden protocol and it’s gratifying to see Dr. Richard Horowitz’s very positive results as well. Alternatives to conventional antibiotic treatment for Lyme often seem difficult to track and trust, however there is no lack of scientific methodology from this medical group in Connecticut and the University of New Haven.

There is also good news in that the condensed protocol is more affordable than the original version. The protocol is available through Nutramedix or through your LLMD.

In Vitro Effectiveness of Samento and Banderol Herbal Extracts on the Different Morphological Forms of Borrelia Burgdorferi

by Akshita Datar, Navroop Kaur, Seema Patel, David F. Luecke, and Eva Sapi, PhD
Lyme Disease Research Group
University of New Haven

There is an alternative clinical treatment option gaining wide use, called Cowden Condensed Support Program, that utilizes several herbal extracts designed to eliminate microbes in Lyme disease patients. Richard Horowitz, MD, president of the International Lyme and Associated Diseases Educational Foundation (ILADEF), has prescribed this protocol for over 2000 of his patient and reports that it has been effective for more than 70% of them. The two herbal agents from the Cowden Condensed Support Program selected for this study are Samento (a pentacyclic chemotype of Cat's Claw [Uncaria tomentosa] that does not contain tetracyclic oxindole alkaloids), with reported antibacterial and antiviral properties, and Banderol (Otoba sp.), known to have antibacterial, antiprotozoal and anti-inflammatory effects.10-12 Both herbal agents are used during the first two months of Cowden Condensed Support Program, then in rotation with other antimicrobials for the duration of this 6-month protocol.

For further information about the Lyme Disease Research Group’s work, please listen to Dr. Eva Sapi in our Interviews with Experts series.

Reduce Lyme Symptoms by Nurturing Yourself

Lyme Disease Research Database — 2011-11-12T13:07:39-05:00

Along the streets in my neighborhood, colorful leaves lie jumbled in piles, trees are half empty or illuminated by unexpected shafts of sunlight to reveal tones of red, yellow and amber. The wind has a wicked bite, and suddenly the holidays are right around the corner.

Making plans to gather with family can be a source of joy or nervousness, or a raw combination of all sorts of emotions. Stress is a part of everyday life, but add in a spate of bad weather or a run of obligatory social events and it can be a recipe for real exhaustion, especially if you’re struggling with Lyme symptoms.

Naturally, during the fall & winter we tend to spend more time indoors, where we’re less likely to exercise or be exposed to natural light, and more likely to eat a little more. Most Lyme patients are familiar with symptoms of mild to moderate depression, and heading into the cooler seasons can trigger feelings of sadness or loss.

What are some simple ways to be good to yourself during this time?

One way to be proactive is to pay closer attention to what you eat. Dr. Andrew Weil’s food pyramid is a helpful visual chart. At the bottom are foods to eat more of. Start with a solid foundation of a variety of vegetables, which are rich in flavonoids and caratenoids that can help keep inflammation in check. Fruits and veggies both contain antioxidant and anti-inflammatory activity.

When the wind whips around our house and the nights are long, I gravitate to the kitchen for comfort and creativity. Chopping vegetables for a pot of savory soup creates a rhythm and gives me a sense of order, which is something I seem to have developed a stronger need for throughout the process of healing from Lyme. Hot soup always tastes good and fills the house with delicious smells. I always try to buy organic when possible, and I’m blessed with a sister who lives nearby, grows amazing greens and keeps us freshly supplied.

Here is a list of ingredients that went into the pot last night:

1 yellow onion
3 cloves of garlic
2 carrots
6 large leaves of fresh chard
3 potatoes
baked, leftover salmon pieces
3 cups of vegetable broth
Italian herbs to taste
3 drops of cayenne-based hot sauce
salt & pepper

Chop onions & garlic and quick-fry in a generous puddle of olive oil. Meantime, bring the broth to a boil and turn down to a simmer. Drop in chopped veggies, seasonings, hot sauce, and put the fish in last, since it’s already cooked and just needs to heat up.

Serve with a thickly sliced piece of bread, gluten free. Enjoy!

Lithium as treatment for Lyme-related depression

Lyme Disease Research Database — 2011-10-15T13:06:04-04:00

Tracy writes:

I would like to find research on lithium as a supplement for Lyme disease. I noticed in one of your posts that you took this your first year.

Both my LLMD and naturopath are in support of supplementing with it. It's helped me personally. I wonder if you have any research to suggest? I would like to share it with others to consider as an alternative to discuss with their medical professionals, but it seems without the research proof people are questioning it. (Perhaps as an alternative say, to Xanathx and Klonopin which cause detox stress on the body while we need instead to focus on clearing the Lyme bugs and neurotoxins.)

I hope you can provide info or suggestion where to further my research.

Dear Tracy, Thank you for your question.

I remember sitting in my naturopath’s office in agonizing pain, trying to follow his advice through my brain-fog. When he suggested lithium, my naturally cautious nature kicked in. “What is it?” I asked. He said, “it’s a mineral.”

In my miserable state though, lithium sounded to me vaguely sinister, like something out of an old Dracula flick, the mug of steaming potion given to the victims to keep them docile. Even worse, I knew that lithium was somehow associated with psychotic episodes and depression. Did this nice doctor simply think I was just losing it?

I’d told him about the phone that wouldn’t stop ringing, about hearing my dead father saying my name. I had told him that I couldn’t make heads or tails of any paragraph I tried to read, and that recently, I had remained in the same position in the same chair from sun up to sundown, because I could not decide what to do. (I confided that I thought maybe I’d died, and just hadn’t figured that out yet.) Depressed? I think any formerly healthy person who wakes up to find they can’t walk, talk, or think is entitled to a little depression. But I wasn’t sure whether taking lithium would firmly secure my insanity, or help me get through it.

With considerable relief, I can report that it helped me through the toughest time in my life. It is also inexpensive as I recall, and I didn’t find it at all addicting. I’m glad it’s also helped you.

Your point is well-taken that without the supporting research, there is reason to doubt claims. Fortunately for those who want more information about the use of lithium, there is plenty of science behind it. In my opinion it is not without risks and benefits, like other drugs, and should only be prescribed by a doctor. In future posts please watch for an interview with my naturopath, whom I have asked to share what he knows and point to further research. Here, for starters:

From an article in the Harvard Review of Psychiatry, 2002:

The special usefulness of lithium lies in long-term prevention of recurrences of mania and bipolar depression and in reducing risk of suicidal behavior. Lithium also may be beneficial in recurrent unipolar depression and is an effective adjunct for treatment-resistant depression.

Reference:
Harvard Review of Psychiatry, 2002, Vol. 10, No. 2 : Pages 59-75

Is Lithium Still Worth Using? An Update of Selected Recent Research
Ross J. Baldessarini, Leonardo Tondo, John Hennen and ,Adele C. Viguera
(doi: 10.1080/hrp.10.2.59.75)

And here are three articles from the British Journal of Psychiatry:

Lithium in Bipolar Mood Disorder

Monitoring Patients on Lithium

Use of antipsychotic drugs and lithium in mania

Learn more about Lyme disease treatments.

Educate & legislate: Sen. Charles Schumer on Lyme disease

Lyme Disease Research Database — 2011-10-02T14:37:00-04:00

Senator Charles Schumer in August, talking to the press about Lyme disease. His message is that we need to educate and legislate, and teach each other how to identify the symptoms early, before a treatable condition becomes a horrendous nightmare: chronic Lyme disease.

Schumer states that he is personally aware of the dangers of not treating Lyme disease immediately after contracting an infection. He says he was bit by a tick in the Hudson Valley, while inspecting a dam in the area. He sought medical treatment immediately, and says he was cured because it was caught early enough.

Senator Schumer’s comments, quoted from the Hudson Valley Insider, Aug 13, 2011:

“We need to bring Lyme disease and Babesiosis out of the weeds and better educate the public about how to keep themselves and their families’ safe,” said Schumer. “Lyme disease is a problem we’ve seen for decades, and Babesiosis is a recently growing issue in New York, but we haven’t done nearly enough at the federal level to tackle it. Tick-borne illnesses often go unnoticed for months, yet can be devastating for many victims and their families. The summertime brings about warm weather and school vacation, causing higher rates of infection in Ulster County and beyond. The tick is a little pest that can pose a big problem, and this legislation would boost research of Lyme disease and Babesiosis and increase education and awareness in the community to better fight these diseases.”

Just for the record, Senator Schumer states that “20,000 Americans are infected with Lyme,” which is a misleading statement, and probably also a grossly underestimated number. Lyme experts estimate the number of infections to be approximately 10 times higher, more like 200,000 annual cases. Mangled facts aside, it’s always good to hear and see an influential politician speaking out for Lyme awareness.

Educate and legislate!

More good reasons to go wheat-free

Lyme Disease Research Database — 2011-08-28T12:22:59-04:00

More good reasons to go wheat-free

Not only our physical health, but our mental health originates in our guts. People dealing with chronic Lyme disease symptoms have good reason to guard both of these states. I’ve been exploring why it’s so important to eat a healthy diet, and that means paying as much attention to what we don’t eat as to what we do. I’ve flirted with a gluten-free diet for months now, but something tells me that it’s time to give it up for good. At least for a month, and see how it goes from there. Want to plunge in and go gluten free for a month with me? Read on and think it over.

First of all, have you ever have a ‘gut feeling’ about something? Most people have. In fact we rely on those feelings to inform us in crucial ways. Our guts can warn us to get out of harm’s way, keep us from getting involved with business deals of a questionable nature, and alert us when a distant loved one needs our help.

When I ignore those feelings, I always wind up thinking I “should have listened to my gut.” You too?

Lately, my gut has been saying to cut out wheat. I’ve cut back on it, but haven’t ever gone without it for long. So I’m going to start tomorrow, as I’ve already blown it this morning with lox and bagels. I feel bloated. This is a disappointment, because I’ve been telling myself that I love lox on an everything bagel with vegan cream cheese, red onion, tomato and capers. However, this morning’s breakfast is still sitting in my gut, calling attention to the fact that it just isn’t getting digested right.

What can we expect to happen when we cut out wheat and gluten from our daily diet? Well, for one thing I expect my mood to lift. It’s fall, and I am in the school business. Every fall I get excited about new schedules, new people, new notebooks, you name it. I love school. But with the newness comes anxiety. And with the anxiety comes a sort of spirit-clenching mental habit of worry. Did this get done? Did that get done? You know what I’m talking about. Some things are under our control, some aren’t. So anxiety is usually generated out of what I cannot control. This stuff makes me moody. So perhaps a gluten-free diet will help me accept the things (and people) that I cannot change.

Another change I can expect from eating no wheat is a loss of puffiness. I have to say, that is something to look forward to. Chronic Lyme symptoms have kept me aware of the importance of taking anti-inflammatory supplements, such as liquid cod liver oil, and turmeric capsules. But still I often feel a little puffy around the waist and in my arms and face. Exercise helps, but the puffiness returns when I eat bread.

The biggest benefit that I can expect is an improvement in my mental clarity. Now that’s really exciting, considering that I deal with college students. When it comes to the information age, you can never quite keep up with the generation below you! They’re intensely savvy with computers and everything that I need to be. So, maybe I’ll be better equipped to keep up. I’m definitely looking forward to that.

If this works as well as I think it may, I might just go another month. Anybody game to try it with me?

Start where you are. Fight chronic inflammation.

Lyme Disease Research Database — 2011-08-21T12:29:45-04:00

Lyme disease is a thief. Chronic lyme disease symptoms can go on affecting a person’s life for many years. Given the complexity of receiving a correct diagnosis, a person with an undetected, underlying Lyme infection may instead be labeled with RA, fibromyalgia, Chronic Fatigue Syndrome, MS, ALS, or almost anything from a truckload of other conditions.

Meantime, life goes on. Friends and siblings get jobs, travel, go to grad school, fall in love. They get married, have babies, and not in any particular order. But for the person with Lyme those fundamental pathways, common fruits of life we for granted, may simply not be an option. Lyme has stolen years.

But enough of spilled tears, right? The wisest thing anyone can do is to start where you are. If you’ve had it with chronic lyme disease symptoms, take heart. Many others have been in your shoes. And they’ve gotten through it. Regardless of the time and opportunities missed because of Lyme, there are many people living happy, loving, productive lives again.

Exactly how the stealthy Lyme bacterial complex works is still under scrutiny. Scientists and doctors, some who are also personally infected with Lyme disease, such as Dr. Eva Sapi and veterinarian, Lyme and immunology expert Dr. Scott Taylor, toil to understand and find a cure for Lyme. One thing we know for certain is that Lyme is an inflammatory disease, and chronic inflammation is the root cause of many life threatening conditions, including Lyme.

Cortico-steroids are commonly given to Lyme patients by doctors without any knowledge or clinical experience in diagnosing chronic Lyme disease symptoms. The faulty logic goes something like this: the patient is experiencing distress, inflammation is causing the distress, steroids (usually Prednisone) will reduce the inflammation and thus reduce the patient’s distress. Not! Predinose will supress the patient’s immune system, causing it to tolerate the Borrelia bacteria instead of attacking and killing it. The Lyme infection is almost guaranteed to get worse, not better.

What can be done about chronic inflammation? Are there safe prescription drugs available, and does your LLMD know about them? What about natural alternatives? Aside from fish oil, are there other products we can take to reduce this silent killer? Does physical exercise really help people dealing with chronic inflammation? Or can it hurt? In my next post, we’ll delve into the various ways to treat chronic inflammation.

Healing from Lyme - Part 3

Lyme Disease Research Database — 2011-08-13T10:02:02-04:00

For several years, although I had worked my way to the point where I was well enough to work and follow a somewhat normal routine, I still doubted that I’d ever live a life of my own choosing again, where I wouldn’t wake up feeling like I had lead in my veins and my head wasn’t stuffed with cotton candy. Eating nutritious foods and exercising regularly are two important keys for maintaining my healthy state.

If you want to know how not to lie to yourself about your diet, try keeping a journal where you chart everything you eat. In one column write down the food you ate, and make a column next to it where you note how it made you feel. This is a very basic way to figure out exactly what you’re eating, not what you tell yourself you’re eating. Some doctors tell me that they have their patients keep a similar type of journal when they’re trying to identify food allergies.

My diet is made up of mainly vegetables, some tuna and wild Alaskan salmon, raw and stir-fried or steamed veggies & curry, some fruit, legumes, and breads or tortillas. Some of the bread I buy is gluten free and I like the pasta made from brown rice, but I am not particularly bothered by digestive issues, and regular bread works for me too. In general, if it’s wholesome food with not too many ingredients that I can’t pronounce or recognize, it works.

My current favorite food is a wrap. I love wraps because instead of bread, you’re using a thin tortilla, and you can pack them with all sorts of veggies and greens. Stir-fry is good for that too. A lot of vegetables taste excellent in a wrap or a stir-fry that aren’t that delectable when eaten raw or steamed. I don’t generally drink alcohol or eat sugar, although I will indulge occasionally in a beer or cookies, but not often. Alcohol and sugar pull the wool over my eyes. Literally. When I drink or pig out on sugary things I get Lymie. It’s awful to experience Lyme brain again. It’s so wonderful and amazing to have a clear head again, why go there?

I know you’ve heard this a million times, but remember to drink enough water! Liquids are needed to assist the lymph system. I drink water or tea all day long. Green, not black. Black makes me jittery. Coffee only as a treat very infrequently. Tea is alkaline, coffee is acidic and drinking it tends to make me feel chilly. Tea doesn’t do that.

Lately I’ve been drinking a lot of tea made from bamboo leaves. The bamboo leaf tea has about 350 mgs of silica per cup, it tastes great and also helps me sleep. This isn’t technically a real tea. It’s a tisane, or an infusion. Bamboo has the highest amount of silica, a basic mineral that our bodies slough off constantly in the form of dead skin cells, hair, and nail trimmings. Silica is the main ingredient in collagen, which is so essential to rebuild as collagen is destroyed by the Lyme bacteria.

Especially as we get older we need to be mindful of getting enough silica to maintain the levels we need for healthy hair, skin, nails and bones. Studies are showing that silica is the body’s delivery system for calcium. So if you have enough silica in your diet, the calcium can be delivered to the organs properly. As an interesting side note, studies are also showing that this tea can pull out the aluminum in the body and brain. Researchers are intrigued by this finding, and it may be quite useful in cases of Alzheimer’s.

Smoothies are a treat and a regular part of my diet. Delicious, fresh smoothies made of rice milk, berries, a banana and green food powder are very satisfying. Sometimes I put in protein powder if I’ve been working out particularly hard.

I’ve made other life style changes. The main one is that now I exercise religiously. I used to just dance and walk for exercise, but I wasn’t doing either with any sort of regularity. If it happened, it happened. Then about two years into my healing, my shoulder started to freeze up. I was so frustrated, because I was working really hard to clear up the nasty neurological, skin and heart problems I was having, and had begun to track some very good progress. Then one day I realized that I couldn’t move my shoulder and it was painful. It was disheartening. My partner suggested that I try some exercises, in particular push-ups. Hated those push-ups at first, but I was determined to fix this without drugs, and I did. It took about two years, but now my shoulder gives me very little trouble and I have full range of movement. That was the beginning of my now-regular exercise phase. I love working out now, but at first it was difficult. I hadn’t realized how out of shape I had gotten from being sick, and from my work life style, which is sitting at a computer all day (can you relate?).

I used an exercise CD at home for about a year before I had the nerve to join the Y and exercise in front of others. Then I decided to join a private gym that had something called a kinesis wall. Essentially, the kinesis wall is an apparatus with several stations that enable the user to get a rigorous, core-strengthening workout. Very much like Pilates. I took a weekly class with a very skilled coach, which got me started off on the right foot. I recommend classes instead of private coaching if you want to save some money. They’re fun, and also you meet other people, great for team spirit and camaraderie.

I’m fortunate in that I work at home. For the past 7 years I’ve been in charge of my own work schedule. That has been extremely helpful. If I’m honestly too tired to work I can take a nap. I can also stay close to the bathroom, which helps when you drink so much water.

My heart goes out to everyone who is suffering with Lyme and has to maintain a job where they have to leave the house every day. This can be a bear of an illness, and that life style can be merciless. If that is your situation, see if you can look into telecommuting, even part of the week. Staggering your work hours so you aren’t dealing with bad traffic patterns, a real stress-inducer, can help a little bit too.

So that’s where I’m at currently. Please tell me if any of this resonates, or helps to hear, or if you have an idea that you think could benefit others healing from Lyme. Do you keep a food journal, or an exercise journal? I’d love to hear about your journey and your results.

Healing from Lyme - Part 2

Lyme Disease Research Database — 2011-08-06T12:08:58-04:00

Before receiving the correct diagnosis for Lyme and coinfections, a dermatologist had put me on Prednisone to try and control my severe skin rashes. This was a nearly fatal mistake on his part. It marked a crisis point in my illness. I also received lectures by this doctor about how I “really should stop scratching myself raw while I was sleeping.” I wasn’t sleeping, and I knew he was wrong. The skin on my body wasn’t opening up due to scratching it. It was infuriating not to be heard.

He considered me a nuisance, because at each appointment I’d open my notebook and read another question from my list, which he wouldn’t answer. Bless his heart, as we say in the South. He wouldn’t even look me in the eye or talk to me. When he had something to say he addressed my mother instead, who drove me to these appointments and helped me get through them.

A doctor worth her salt who suspects that a Lyme infection is underlying will be the first to tell you that corticosteroids such as Prednisone are contraindicated. That means they are precisely what you do not want to do. The dermatologist who wouldn’t listen to my questions seemed to have no professional curiosity about my skin rash. If he’d looked into it, he might have saved me several terrible months of pain, and perhaps even several years of cognitive disorientation. Prednisone will replicate the Lyme bacteria. It will drive the bacterial complex further into the body and across the blood-brain barrier. That is what had happened to me.

In spite of the fact that my intuition urged me not to, I continued taking the Prednisone for 16 days (he’d prescribed it for 20). On the 16th day, I made the decision to stop although the dermatologist, and a couple of my dear friends, warned me not to. The doctor must know what he’s doing, they said. You’re seriously ill and you should listen to him. The mental stress and anxiety caused by going through this process, on top of the continuous physical pain, was nearly unbearable.

We’re conditioned to listen to our doctors, take the medicine they prescribe, and to take what they say as the word of God. From my current vantage point, I look back and wonder what on earth I was thinking. How could I have thought that this guy was helping me? He kept me coming back because he wanted to biopsy my skin rashes. But the rashes lingered and didn’t improve. He was ready to perform a punch biopsy on my raw skin. I’m grateful that he kept waiting for the rash to improve before he did. He knew that a biopsy would likely make the rash worse. Partly because I so feared having that punch biopsy and partly because I felt like I was in the enemy’s camp when I went to his office, I simply stopped going.

That’s when I found a naturopath, Tod Thoring, in Arroyo Grande, CA. It was like being introduced to an angel, and it was another turning point in my long battle. This time it was a positive one. This was the beginning my new life. I’d found Dr Thoring and lucked into a situation where he and a very smart group of Lyme experts were putting their heads together to try and help people in dire straits, like me.

Today I consider myself lucky in every way. But that said, I know I’ve also battled my symptoms with every ounce of strength I had. And without the support and love of my partner and my mother, I wouldn’t have made it. I’m ashamed to say this, but when I was in the acute stage, if I’d had a gun, I probably would have pulled the trigger. The pain in my skin and muscles was so severe, so constant and unbearable. Instead of letting me hurt myself, my partner handed me a paintbrush and some tubes of paint. He supported me emotionally as well as he could, and set me on a path to healing.

During the acute stage some of my other symptoms were insomnia, hypersensitivity to light (especially florescent) and to being touched. I couldn’t stand or walk without holding onto a chair or a wall. I was dizzy all the time. My brain wasn’t functioning well enough to work or write, and when reading, comprehending even a simple paragraph was an insurmountable challenge. During this time, in spite of my state, I began interviewing doctors who I thought might have some clue about how to treat Lyme disease. I was determined to help other people like me who I knew were out there, going through this horrible process and needing to hear what the doctors had to say about it.

Navigating the technical equipment and recording the interviews was hugely challenging. Once, I could barely hear the doctor I was speaking to, and couldn’t figure out how to fix it. I strained to hear her through the entire session while her voice came through like a little mouse in my ear. It wasn’t until after I thanked her and hung up that I realized I had put my earphone in backwards.

I ached to be held and comforted, but couldn’t stand to be touched. I felt extremely lonely and isolated. I had horrible mood swings. I hallucinated. Once, while in the bathroom, I heard my father say my name. He died when I was 15 years old, more than 30 years ago, but I instantly recognized his voice. I heard my telephone ringing and a little girl on the other end asking for someone who didn’t live there. That particular hallucination happened a few different times. Each time, the calls upset me enormously, and she always called when I was home alone. I couldn’t understand why this little girl kept calling back, insisting on talking with someone who didn’t live there. Weeks later, I realized that I’d hallucinated her and all the conversations we’d had.

In Part 3 I’ll outline my diet and exercise routine. I’ll also pass along advice and suggestions from some amazing individuals. You’ll hear more about the Lyme success stories I’ve heard along the way.

Healing from Lyme - Part 1

Lyme Disease Research Database — 2011-07-30T10:55:48-04:00

Q. I noticed in the article you said that your symptoms are gone and your health vastly improved. What did you do to get to that point and how long did it take you?

A. My healing journey is still ongoing, and since Lyme changed my perspective on pretty much everything, I’m always vigilant about the consequences of my everyday choices. I’ve learned how critical it is, when dealing with any serious disease, to approach healing from as many directions as possible. This is called an ‘integral’ approach and there are four general life areas that come under consideration. I’ll get into all four areas in this multi-part post.

First, I’ll give you the general picture of the medicines and supplements I took and still take. To begin with, my doctor put me on a treatment protocol of antibiotics including Omnicef and Zithromax. He also started me on a regime of homeopathics and vitamin supplements to support my immune system. Here is a partial list of the supplements that I took everyday for the first year:

probiotics
cod liver oil
bromelain
thymucin
lithium
dermaliq
CoQ10
quercetin/bromelain
copper
garlic
vit E
vit C
MSM
pekana
L lysine
Noni
liquid chlorophyll
zinc
psyllium

After six months, my doctor recommended that I stop the oral antibiotics and begin IV treatment with the antibiotic Rocephin. I had been through a rough time physically and emotionally, and though I felt better, I didn’t feel anywhere near 100%. In addition, I didn’t have health insurance, and I understood the cost of the IV and the new antibiotics would be around $20,000. Financially, my illness had already set me back in two fundamental ways. First, I hadn’t been able to work full time. And second, I had spent a great deal of money on the medicine and supplements needed already. It was a pretty disturbing place to be. My doctor was a naturopath, and typically did not treat illness with antibiotics. I knew my condition must be very serious if he thought I needed the Rocephin.

I had to decide what to do. After agonizing over it for a week or so, I chose not to go with the IV, but decided to start the Cowden protocol. There was no lapse of time between ending my oral antibiotic protocol and beginning the Cowden, an alternative protocol that I had researched, consisting of Samento, Burbur, Banderol and a number of other herbal tinctures that originate in the Amazon. These native plants have been used to treat malaria for a thousand years or more. I felt like I could make it work.

The Cowden routine worked very effectively for me, and although it took a long time (several years) I’m happy with the results. The cost, while not cheap, was a fraction of what the Rocephin IV treatment would have been. Currently I’m on a break from the Cowden protocol. About a year ago I tapered off of it, and began taking a low dose (3 drops 3 times daily) of teasel root tincture which I still take. I made this decision after reading about it and interviewing a couple of herbalist/physicians who had found it to be immensely helpful for their patients.

It took me six years to get to the point where I feel normal again. It wasn’t a quick trip. More like an excruciatingly slow journey. Normal, to me, means that I can enjoy my family and friends and take time for them. I can pursue my personal and professional goals and work long days if I so choose without crashing, I can sleep through the night every night, and I can exercise rigorously every day. I can make plans for the future.

In my opinion, exercise and diet are more important than anybody will tell you. I consider Lance Armstrong and all the athletes I’ve had the honor of interviewing for our Lyme success stories to be my solid gold role models.

Next, I’ll give a bit of backstory and talk about what happened before I found my naturopath. What can happen when the doctors don’t know about Lyme disease and prescribe the wrong medicine?

Gluten free cooking can taste good

Lyme Disease Research Database — 2011-07-23T14:57:49-04:00

Gluten is the protein in grains that makes bread chewy, the glue that makes it rise and holds it together. Increasingly, people dealing with Lyme disease symptoms are adopting a gluten free diet. Some LLMDs recommend it, based on the rise of increased gluten sensitivity seen in Lyme patients.

If you’re in an acute stage, it might be worth a try to eliminate gluten products for awhile. Avoid baked goods made from wheat, spelt, kamut, barley, triticale (a hybrid of barley and wheat) and rye. Especially if your stomach aches after you eat these foods.

However, bread is the staff of life. Changing your bread-eating habits can be an emotional, not simply a nutritional, issue. My partner makes the best french toast this side of the Mississippi. Since we struggled through our Lyme journey, he only makes it as a rare treat, and any resistance is futile. I sweeten it with fresh blueberries or strawberries instead of maple syrup (okay, maybe a dribble of maple syrup). I wouldn’t use sugar or syrup (sorry folks) if you’re experiencing symptoms. But I’ve discovered that if I only eat french toast as a treat, I can get away with it. These days, six years past my acute stage, I’ve returned to an old habit of relying on pasta for a yummy dish that cooks up quick after a long workday. I’m a vegetable fanatic, so my pasta sauce is crowded with fresh organic veggies whenever possible. Even though my symptoms are gone and my health is vastly improved, I’m still very careful when it comes to choosing what to put on my plate. Adopting a largely gluten free diet seems to work well for my whole family. Just takes a bit of adjusting, which is easy these days.

A few years ago, it wasn’t easy to find quick alternatives to gluteny products. Nowadays a lot of name brands offer GF products in the grocery store. Boxed mixes may tempt you because they’re fast and easy, but boxed food tends to contain too much salt, sugar, or other ingredients you may be sensitive to. If you possibly can, buy bulk from your grocery store. Try some of the alternative grains that you used to pass by in favor of the more familiar ones. I know I used to pass them by, simply because I was in a groove (more like a rut) and a little bit lazy when it came to trying new foods.

Recently I’ve been experimenting with more organic whole grains such as millet, amaranth, buckwheat and quinoa in our dinners. Couscous is traditionally made from semolina wheat, so it’s not gluten free. However, there is a brown rice couscous on the market which is indeed GF.

One of my favorites so far is quinoa, which cooks up extraordinarily quickly. I also love cooking in a wok, which takes very little time and transforms the air with the smell of hot, fresh veggies and warm spices. Pairing quinoa with stir-fried vegetables is fast and satisfying. It’s amazing, but lifelong habits actually can be transformed, and we can change our old emotional associations with that piece of buttered rye toast or whole wheat sandwich. It just takes a little doing. But the effort it takes to live a pain free, post-Lyme life where we are finally liberated from symptoms is worth its weight in gold.

Learn more about Lyme disease diet.

What’s your favorite gluten free diet food? If you eat mostly gluten free, have you seen, or felt an improvement in your health? Please feel free to share recipes! I’d love to hear from you.

What's wrong with conventional medicine (and what to do about it)

Lyme Disease Research Database — 2011-07-06T18:01:08-04:00

An insightful article on the Doctor-Patient Relationship written by Dr Lissa Rankin points out some of the specific problems created and intensified by our orthodox medical system. Rankin is searching for a more vital and meaningful way to relate to her profession, her patients and her role. In her post, she perceptively describes an enormous & paradoxical problem with what she calls Old Medicine. Lyme disease patients get to be unwilling experts in Old Medicine. Picture the doctor with his/her hand on the doorknob, nodding in your direction as you wait in your underwear on a cold table under florescent lights that are driving you mad.

From the patients’ perspective, you can boil it down to this: You want to be treated like a whole person, not a slab of meat.

From the doctors’ perspective, you want to practice medicine without losing your own health and/or being forced to put your soul on hold.

Dr Rankin shows how the rules of Old Medicine are intolerable, imposing unsustainable stresses on doctors and patients alike. She accurately describes the ways in which ways doctors get shafted in this system. Then she turns the tables, articulating how our current cold-as-a-spectrum ‘managed care’ feels from the patients’ perspective.

What’s wrong with conventional medicine and what can be done about it

Our medical system is flawed. The question is not how bad is it, or how thoroughly can we condemn it. The question is, can it be fixed, and if so, how?

Most people are aware that there are 2 types of medicine:
1. Conventional, which treats the illness.
2. Alternative, complementary, holistic, or integrative, which treats the whole patient.

However, there is also an emerging 3rd category: Integral, which includes the first two types and treats the physician as well. I’m old enough to remember when ‘health food’ stores were totally square. Now, Whole Foods, just one example, is a billion dollar business. Our collective consciousness around health issues is constantly expanding, although not as quickly as some of us would like. There is evidence that Integral medicine is being quickly adopted by health-care practitioners around the world.

Here’s why:

Using an Integral framework is like putting on a new pair of specs. It gives us a good look at the big picture without excluding the details. The Integral model recognizes that every event has at least four dimensions. They represent the perspectives: I, we, it and its. How does this apply in analyzing our medical system? Here’s how: Factors in all four dimensions affect both the cause and the cure of an illness. The all-too-often murky process of diagnosing and treating Lyme disease provides a classic example of why an integral medicine is necessary.

Four dimensions of medicine and why all four are important

1. Conventional medicine tends to strictly abide in only one of those four dimensions. It deals almost entirely with the physical organism using physical interventions: surgery, drugs, medication, and behavioral modification. Orthodox medicine believes essentially in the physical causes of physical illness, and therefore prescribes mostly physical interventions. Lyme disease, if caught early enough, can be greatly cured and controlled with antibiotics. The integral model doesn’t claim that this objective dimension is unimportant, only that it is just telling one-fourth of the story. (The Integral Vision, by Ken Wilber. p 92) Which leads us to the next quadrant:

2. Unprecedented interest in Alternative care makes it clear that many people (doctors included) recognize that our interior states, i.e. our emotions, psychological attitudes, imagery, and intentions, play a crucial role in both the cause and the cure of even physical illness. Conscious use of imagery, visualization, and affirmation have been scientifically proven to affect the management of most illnesses, and including these practices is increasingly more accepted in comprehensive medical care. (p. 92) Affirmations were extremely important to me while Lyme was in an acute stage. Repeating bits of positive phrases helped me focus my Lyme-addled brain and gave me a reason to believe I was eventually going to be alright, even though more than one doctor had advised me to go on disability, climb into a wheelchair and settle in for life. For me that wouldn’t have been life, but death.

3. However, this subjective dimension is still only one-fourth of the whole picture. Nothing exists in a vacuum, least of all human consciousness. We are embedded in shared cultural values and intersubjective factors that affect our state of health and our journey through illness. Cultural views and judgements affect us. In my interviews with Lyme patients over the years, I’ve noticed a significantly common thread, which is that we’ve all been told, at one time or another, that “it’s all in your head.” We may not give much credence to the dimension of cultural views, and yet our spouses’, friends’ and doctors’ subjective opinions about our health affects us (sometimes dramatically) whether we like it or not.

4. The material and economic dimension, causative factors in both disease and cure are rarely acknowledged. Yet, these factors are central to the issue, not besides-the-point. This is the Social system that delivers your medicine, sets the limits on your managed care, and accepts or declines your access to insurance. Are you wealthy? You may be fortunate enough to afford concierge medical care. Or are you in the economic class that is relegated to using the ER when things get bad enough? The Social system dimension or quadrant also includes your access to clinics and nurses and their availability in your region. In other words, if you can’t reach the clinic you need because you are too sick to drive or it is too far away, it cannot help you.

Integral medicine includes all four of the above dimensions. I’m inspired by doctors like Lissa Rankin, who intuit that Old Medicine only tells one-quarter of the story, and that in order to improve we must acknowledge the other 3 quadrants or dimensions. In the 100 perspectives we categorize our interviews, articles, and other info into all four quadrants. Integral medicine is gaining popularity around the globe, and Lyme literate doctors, because they have to deal with us Lymies on so many different dimensions of health, may be on the leading edge.

Dr. Peter Muran, Lyme Disease Management

Lyme Disease Research Database — 2011-06-12T12:49:39-04:00

I had the opportunity to interview Dr. Peter Muran this week about his approach to Lyme disease management, which he refers to as functional medicine. Dr. Muran practices Holistic Integrative Medicine in San Luis Obispo, CA, and specializes in diagnosing and treating immune system disorders and diseases such as Lyme. Functional medicine is about treating the whole person, body, mind, and spirit. To those of us who are aware of the role we must play in our own healing, this might seem like a no-brainer, but in Western medicine it is still quite revolutionary and new.

There’s a profound sense of relief that resonates deep inside when a trained and experienced medical doctor tells you, “there’s nothing stronger than what goes on in your own body.” It felt like music to my ears to hear this. Yes, we need medicine -- sometimes very powerful medicine indeed -- but our own miraculous bodies are often resilient and strong and capable of healing themselves, if only we let them.

The main point I came away with after our talk was that immune disorders can be managed if we take a whole person, whole life, approach. Healing from Lyme is literally a life-changing experience. I’ve said in the past that I’d almost rather have something easily diagnosable, such as cancer, instead of this mysterious condition that is so difficult to treat. Dr. Muran set me straight. Cancer is much harder to get over, he told me, more devastating overall to health. Lyme is treatable. We just might not want to make the effort to change in the radical ways it seems to insist on, but if we do, we can get better.

Have you ever had a doctor tell you that “diet has nothing to do with it”? I’m pretty sure I’m not the only Lyme patient who has ever heard that from a conventional doctor. I’m no expert, but I know a line of bull when I hear it. As it turns out, diet does have something to do with it. When I asked him to say a few words about our eating habits, and about the role of sugar, Dr. Muran offered some basic widsom: don’t live to eat, eat to live. Diet should always be nutritional. Become aware of how the foods you eat affect you. In other words, instead of ignoring that bloated sensation, recognize that your body is giving you feedback. When beginning to work with a new patient, Dr. Muran conducts food allergy tests to help distinguish food sensitivities from a reaction to bacterial infection.

During our hour-long conversation, he touched on subjects that are close to our hearts, including of course the astounding immune system and GI tract, diet and nutrition, exercise, the function and role of the body’s secondary responders: the hormones, cortisol, insulin, and adrenal. He doesn’t go into detail, but intriguingly also mentions the importance of the role of meditation.

We also talked about his approach to handling herxes. The Herxheimer reaction is a double-edged sword for Lyme patients, because we know it is generally a sign that the Lyme bacteria are dying -- good. But with that die-off, more symptoms or more severe symptoms may also emerge -- not good. Instead of pushing the patient and risking more stress to their system, his recommendation is to back off the newly introduced antibiotic or treatment causing the herx. Reduce it to a point where the patient can stabilize and continue to heal without additional stress.

On a personal note, I was surprised and gratified to discover during our talk that Dr. Muran actually played a central role in my own healing although I never knew his name. I lived in San Luis Obispo at the time I discovered I had Lyme, and the naturopathic doctor who treated me was new to the field at the time. I was aware that he was given guidance every step of the way by a group of Lyme experts in California. That group included Dr. Muran and Dr. Steve Harris, who incidentally are both featured in Connie Strasheim’s excellent book: Insights into Lyme Disease Treatment. Also included in the book are Dr. Lee Cowden and master herbalist Stephen Buhner, both of whom are featured guests in our own interview with experts’ series.

Listen to my conversation with Dr. Muran on managing Lyme disease.

Please read Dr. Muran’s 3-part article on Lyme Disease Management.
Part 1
Part 2
Part 3

For further information about Dr. Muran’s approach, please visit his website page on Lyme disease: http://www.alternativemedicinehealthcare.com/immune-health/lyme-disease.www.longevityhealthcare.com
Tel: (888) 315-4777

Safe mosquito & tick repellent

Lyme Disease Research Database — 2011-06-06T16:25:02-04:00

A friend dropped by with her 8-month-old baby the other day. We sat at the picnic table, enjoying the deep shade of the bamboo. She set the little guy down on the ground, buck naked, where he proceeded to crawl around and gleefully do what babies do best -- put everything into his mouth. As he sampled the bamboo leaves, I flashed on how much my relationship with nature has changed since having Lyme. In the past, I never would have worried about an occasional bug bite. I was like my friend in that respect, assuming that nature, in small doses, mostly can’t, or won’t, cause harm. Now I’m older, wiser, or perhaps just merely unluckier, but one thing’s for sure, I’m definitely much more cautious when interacting with the Great Outdoors.

Typically, I take any recommendation for tick and mosquito repellent with a grain. Either they’re full of poison or they don’t work because they’re ‘natural.’ However, I’ve been experimenting with a safe mosquito & tick spray repellent in my yard and around my house. It’s made of garlic juice. As an honorary Italian, I love the smell, but it does fade after a few hours. This stuff, Mosquito Barrier, is safe to use around people, fish, butterflies and birds, but it supposedly disturbs ticks and kills mosquitoes.

So far, I like the results but I’ve only been using it for a few weeks, so can’t tell if it’s made a huge difference. The baby didn’t get bit, so you can breathe a sigh of relief now. I live on a creek near a lake, so we’re no strangers to bugs. They’re part and parcel of our community, which is actually a certified wildlife habitat. We see no evidence of deer, but there are plenty of resident birds, geese, ducks, frogs, fish, squirrels and other critters (even reportedly a black bear) which means that ticks are probably here as well.

I’m aware that some people discourage deer with certain deer-repelling plants. Others put up fencing to keep deer out, which is a much more complicated and expensive proposition, but worthwhile, if it works. I picked up a citronella-scented geranium at the nursery and placed it by the front door, and I’ve got a truckload of garlic juice ready to spray in another week.

What are you using to repel ticks from your yard? Please share. I’d love to hear.

Debbie's success story in dealing with lyme.

Lyme Disease Research Database — 2011-05-07T13:52:57-04:00

Debbie Bassett reminds me of a friend I had in college, also named Debbie, who faced life’s twists and turns with a resiliency and sense of humor that welled up from some eternal energy source.
“At one point, all I could eat was baby food,” laughs Debbie. “I lost 25 pounds.” Neither of these statements are the least bit funny, but somehow throughout our entire conversation I found myself laughing right along with her. Gallows humor: a big relief when you’re dealing with something as serious as Lyme disease.

But it wasn’t this 40-something, mother of two’s ability to find the humor in the situation, so much as her strong intuition and intense need to know, that guided her to ultimately find the Holtorf Medical Center, in Torrance, CA, where she began treatment for Lyme.

The basic trajectory of her story line is familiar to many Lyme patients. Sickness, misdiagnosis, searching, then finding a doctor or medical professional who finally leads to a correct diagnosis and treatment. But treatment is often less of an ending point, and more of a start. I know it’s a terrible thing to say, but sometimes I have envied that people can get a clear diagnosis of cancer, and begin treatment for it, while Lyme patients may suffer for months and years without any definitive diagnosis. On the contrary, Lyme patients are often told they have to get a handle on their stress, take a chill pill, or seek a psychologist’s help for mental trouble.

In Debbie’s case, after landing in the ER twice due to headaches, being told by neurologists that nothing wrong could be found, she was handed subscriptions for Prozac. But she knew something was wrong. She told the doctors she suspected she had an underlying virus that they weren’t locating. It seemed unbelievable to her that “nobody’s taking the time to analyze the situation.”

Frustrated, sick, Debbie wound up in Scripps Hospital in San Diego, where she spent 3 days as doctors examined her, determining what they thought was the problem. They scheduled her for gall bladder surgery. It was then that she experienced an interesting turning point. I won’t tell you the whole story -- listen to her tell it.

Debbie’s warmth, generosity and sweetness is a balm capable of soothing the bruised souls of anybody who has suffered through Lyme. She says it is important to share her story so that other people know they are not alone, and that it is possible to pull through in one piece again, as she is doing. Currently on five different antibiotics, Debbie’s in full throttle on her healing path. Please feel free to contact her, as she wants to give her support to others who are going down the same road, dealing with Lyme. Her email address is:dbassett@earthlink.net

“It’s not an overnight journey,” she says. But with smart medical attention, patience and a sense of humor, we can heal.

Click on the podcast link to listen.

Podcast Part 1 of 6. Please log in or join to listen to all 6 parts.

Self-treatment for Lyme: Understanding your immune system

Lyme Disease Research Database — 2011-03-19T11:39:47-04:00

Do you self treat for Lyme? Many of us do, taking our cues from others who have found ways to regain their health and build their immune systems. Self treatment is necessary, I believe, even while under a doctor’s care. Diet and exercise routines, for example, may not be in your doctor’s radar. However, both play an important role in recovery. Speaking from my own experience, I advocate taking an integrative and many-faceted approach in treating Lyme.

But where do you start? I guess it’s always made sense to me to begin with the basics. When I was very ill with Lyme, I kept notebooks and schedules of my daily routines. I was so loopy that I was afraid I’d forget to take my meds or supplements without keeping track. Plus, I think the act of doing so made me feel useful and proactive in my own recovery, at a time when I really thought I was doomed.

What are your routines? What goes into your mouth at every meal? How much exercise do you get? Especially if you plan to treat yourself, it’s prudent to track yourself. Write it down. Not the food you say you eat, or the exercise you say you get, but in actuality.

Food sensitivities and allergies may show up as skin rashes and other problems, but the major concern when dealing with Lyme is chronic inflammation. Persistent inflammation caused by the Lyme bacterial complex can create long-term problems, but there may be ways to discourage inflammation through diet and exercise. The seat of the immune system lies in the GI tract. Besides keeping track of your daily routines, understanding the link between your gut and your health is a good place to start.

Here is an excerpt from the first in a series of articles by Dr Peter J Muran, MD, who practices Integrative Medicine in San Luis Obispo, CA, specializing in immune conditions such as Lyme disease.

There are approximately 100 Trillion bacteria in the human gut. Astoundingly, this represents 10 times more cells then what makes up the body. The presence of these bacteria has an immunological effect on the rest of the body. Under most circumstances, this immunological effect is greatly beneficial. However, disruption of this normal flora, if not tolerated, is inflammatory and can be significantly harmful.

Continue reading

Link between Chronic Lyme and CFIDS

Lyme Disease Research Database — 2011-02-26T14:19:22-05:00

Even well into my so-called ‘normal’ post-Lyme life, there are days, such as this, when regular routine tasks -- preparing and cleaning up after a meal, writing an email, grocery shopping, seem unbearably exhausting. Friends I confide in say they have the same feelings and that it comes and goes. We attribute this to a variety of causes, hormones, diet, children, our jobs and just plain ol’ getting older. Illness is also suspect, especially for those of us who have battled with fatigue due to Chronic Lyme (aka neurologic post-Lyme), and/or the syndrome we call Chronic fatigue.

More studies are needed to examine the relationship between these two potentially devastating diseases. A dear friend and neighbor of mine, an aging Southern writer appeared astonishingly frail and weak, but whose wicked sense of humor never rested, died last year after struggling for many years with CFIDS. In spite of her failing health it always seemed that her role in our friendship was to make me laugh. She succeeded. Mine was to give her news about the steps being taken to find a cure to what ailed us. If I could get her updated address, I’d email this article to her this morning:

Possible links between Chronic Lyme and Chronic Fatigue Syndrome, are under scrutiny of experts including Steven E Schutzer, MD, and Brian Fallon, MD, the Director of the Lyme and Tick-Borne Diseases Research Center at Columbia University.

Scientists have discovered proteins in spinal fluid that can distinguish people with two mysterious illnesses that mimic each other — chronic fatigue syndrome and a kind of chronic Lyme disease.

Wednesday's study is small and needs verification. But specialists called it a promising start at clearing some of the confusion surrounding two illnesses with similar symptoms and no good means of diagnosis.

"It's a very important first step," said Dr. Suzanne Vernon of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America.

Lyme disease usually is cured with antibiotics, but some patients report pain, fatigue and memory or other neurologic problems that linger for months or years after treatment ends. This post-treatment Lyme disease shares symptoms that characterize chronic fatigue syndrome.

The new study analyzed spinal fluid from 25 of those chronic Lyme patients, 43 people diagnosed with chronic fatigue syndrome and 11 healthy people. Using a special high-powered technology, researchers detected more than 2,500 proteins in each group.

Read the abstract of the study here.

Following up with Samento & Banderol

Lyme Disease Research Database — 2011-02-05T13:44:47-05:00

A reader commented that he has tried Samento and Banderol and didn’t get results. Another reader mentioned that ‘diet is everything.’ I feel so strongly about this and want to put in another pitch for taking personal responsibility in our own healing. I wholeheartedly agree that Samento and Banderol alone won't cut it. I wonder if antibiotics alone can heal us, and personally doubt they can do it all (unless the Lyme disease is caught early enough). I believe that in order to be effective healing agents, antibiotics, as well as herbal and other complementary therapeutics, should be positioned as part of a whole approach. That approach includes diet and exercise and a host of other factors that I’ve written about in ‘100 Perspectives.

My own history of healing from Lyme seems similar to that of the person who responded, LymeAngl, although I followed the Cowden protocol for four years (after treating for six months with powerful antibiotics), taking 30 drops 3x daily, alternating between Samento and Banderol.

LymeAngl’s point about diet being everything is critical in my opinion. I have had a healthy diet my entire life, but then went gonzo with healthy food, fresh organic juices daily, fresh sprouts and fresh dark green everything, such as spirulina, chlorella, and leafy greens when I learned I had Lyme. I maintained that frenzy of healthy food consumption long after my horrid symptoms and the ‘daily dizzies’ began to slowly fade. Today, 6 years after my diagnosis, I am a devotee of a clean diet and exercise and believe they are two very important branches of a healing path.

I have written here about slipping off the health food wagon, the results of which have been disastrous for me. Beer and wine don’t work. Sugar is the worst. Coffee I can handle very infrequently, but I stay healthy now because I pay close attention to my daily habits. I exercise MORE, not less, as I get older; I consume no sugar or alcohol, and I have never been a soda drinker. I drink more water than most people are probably able to (because I'm fortunate to work at home, near the loo). I hardly ever drink coffee but I do drink green tea. I don't have a sensitivity to gluten which is fortunate. My diet includes a fair amount of dairy but I stay away from cow milk, which has never worked for me. Goat cheeses, lots of herbs and spices, and as much fresh organic produce as I can swing. I read labels voraciously and have learned to attend pot lucks and dinner parties without caving in to peer pressure, while at the same time not devolving into a buzz-killing 'health food lecturer' about the evils of sugar. Everyone is aware of the dangers by now & they need to wake up and make their own choice. It does, however, never cease to amaze me how much actual junk food people can consume, all while fervently believing that their diet is perfectly healthy. I’m a people person, always have been, so people’s quirks and imperfections tickle me to no end, but sometimes it's just too surreal to witness how strong the disconnect can be between somebody’s words and their actions.

For example, the other day I sat and watched someone woof down a sugary maple scone and a cup of coffee with sugar & cream, while describing to me her newly found enthusiasm for ‘cleansing.’ When I pointed out that scones are probably not the best cleanse-food she pouted, saying she had to have SOME fun. Ridiculous. What's “fun” is living life the way you choose to every day, not strangling in the grip of your own unconscious habits, not being held prisoner by disease.

I'm convinced that the key to healing from serious disease is to approach it from as many angles as you can discover. Never give up.

Please read about my "100 Perspectives."

A Holistic Approach To Treating Lyme

Lyme Disease Research Database — 2011-01-29T17:55:24-05:00

Q. I was diagnosed with Lyme last July (2010) after several neurologists told me I had a motor neuron disease - ALS (Lou Gehrig's Disease). My family and I were thrilled to find out it was Lyme as at least it wasn't a death sentence. But after nearly 6 months on IV Rocephin and other antibiotics and many supplements and 5 IVIg treatments to modulate my immune system - I am still not feeling much better. I do have more energy than before the antibiotics but my speech is poorer, my body twitches when I'm still and I feel a sense of vibration in my hands and feet. I have some joint pain in my elbow and fingers, but it’s not too bad.

I really love my Lyme doctor she listens and adjust my doses at my monthly visit. I fill out a symptom list every day ranking my symptoms from 1 to 10. I go weekly to her office for my PICC line to be checked by a nurse and they draw blood at that time to check things. I feel taken care of -- but I never thought it would take as long as it’s taking.

I had read at some point that you beat Lyme with a more holistic approach - can you elaborate on that for me? I know there are alternative medicine doctors and I went to one once - and she told me to use certain Essential Oils by Young Living - I used them for a while.

A. Your letter brings to mind that aphorism: What doesn’t kill us makes us stronger. Many of the strongest people I know are dealing with Lyme.

Yes, I take what I consider an integral approach to treating Lyme. An integral approach requires more than just treating with medicines and supplements. It also includes getting regular physical exercise, eating right, tending to your psychological/spiritual needs through a regular practice of meditation, prayer, affirmations (whichever practice suits you best), and finally, seriously considering your network of support including your close loved ones on out to the social systems that are available to you: your clinic, nurse practitioner, doctor, as well as the money you must generate, and/or the insurance forms you must navigate, in order to access all of the above.

I started my treatment with antibiotics because I felt (and my doctor observed) that I had quickly devolved into a very low-functioning state. Every one of my systems was affected and going haywire. After 6 months of antibiotics, a period that I honestly find very difficult to remember, I came to a crossroads. I had reached a point where I could no longer financially afford to continue on the antibiotics. I was feeling better, but not spectacularly so. My doctor was not enthusiastic about my decision but he sympathized with my dilemma, and going on his advice that something would be better than nothing, I then prescribed myself a treatment consisting of herbal medicines and a continuation of the supplements that he had started me on. I embarked on the beginning of my second phase of treatment with some real moments of fear. However, I felt deep inside that I had no choice but to get well and although I was still unbearably fatigued after a full nights’ sleep and had many other Lyme symptoms that could have depressed me, I never, ever lost the willpower to fight and get well. I didn’t want to die, and I’m stubborn.

As the months wore on, I was finally able to put two sentences together again and resumed my work as a professional writer. I was fortunate in that way. If I’d had to go to work outside my home, I probably wouldn’t have been able to stick with the routines I had developed in order to stay on the wellness path. I required lots of sleep, little or no interaction with people outside my inner circle, long naps mid-morning, daily walks, blankets piled on my lap. I had to remember to take the supplements at their correct doses and times. And most critically, I had to have the luxury of being able to take my time on assignments. If the editors I worked for at that time had been able to see me at my computer, they would have wondered about my frequent pauses to stare at nothing, my complete spaciness and inability to stay on task! If they hadn’t been utterly disgusted by the ugly rashes on my hands and fingers, they definitely would have been put off by the stammers and slur in my speech. Luckily for me, they never knew, they were usually too busy to talk on the phone, and I was somehow always able to meet my deadlines.

I think many of us get to a point in our healing where we look into alternatives because conventional therapies either haven’t worked, they aren’t enough, or they’re simply not affordable or available. I’ve often thought that hey, if there’s something, anything, I can do to speed up this healing process, let me at it. My 100 Perspectives approach is the integral approach that I’m on.

I’ve also read about the essential oils by Young Living and looked into them a little. At one point, someone gave me several tiny bottles of elixirs that I tried. Alternative doctors, alternative medicines, and holistic or complementary therapies are familiar terms, even to those of us who prefer Western medicine. But we often read about or hear these terms referred to without knowing or really understanding what is meant by them. We’ll explore and define these terms in subsequent posts.

All good wishes to you my friend.

Eat foods that warm you up

Lyme Disease Research Database — 2011-01-15T12:14:28-05:00

When the wind chill kicks in, snow falls and temperatures drop, warm up with good old fashioned thermogenesis. Some foods, when eaten, can help generate body heat. Depending on your palate, your preferences, and your ability to tolerate spices, for example, black and red pepper may appeal to you. Pepper stimulates the nervous system and your circulation.

A hot cup of ginger tea is comforting, and along with a pair of thick wool socks, can even help thaw your popsicle toes. Peel fresh ginger and slice it thin, add hot water and a drop or two of stevia. Curl up on your couch with a good book, and savor the moment. Read this article about 5 foods that warm you up.

In winter, it feels as though we’re purposefully being slowed down by external forces, such as bad weather and shorter daylight hours. Don’t fight the urge to stay indoors, sleep in and take naps if you can. Hibernate. You are not alone if you’re feeling antsy or a little blue. This is the ‘dead of winter’ after all, the time of year when average temperatures in the northern hemisphere plunge to their lowest. Be kind to yourself while you’re healing. Call your best friend and laugh. Watch a great movie. (Or a chick flick!) Make a handmade card for a child. Doing something -- even a small something -- for someone else is also a powerful healing act.

I like to remember one of my grandmother’s favorite sayings: When winter comes, can spring be far behind?

Genomes of 13 strains Lyme bugs mapped

Lyme Disease Research Database — 2011-01-09T12:22:07-05:00

Lyme can sure be a complicated puzzle. For example, knowing that Lyme is an inflammatory disease is one thing. But knowing what to do about that is quite another. My personal approach often feels scattershot: add turmeric to my supplemental arsenal. Take daily doses of quercetin. Drink water, exercise, avoid sugar. But doctors are far from being in agreement about therapies, and health websites and magazines are stuffed with pop advice. Some is helpful, some is contradictory or otherwise confusing.

But what can medical science tell us about dealing with chronic inflammation? There is actually good news in this area from a recent study.

Researchers have mapped the genomes of the 13 strains of bacterium that play the most prominent role in causing Lyme disease. This project may help us understand why a significant number of Lyme patients suffer with a chronic inflammatory response. The study may yield some answers to the problem of inflammation, an auto-immune response. More importantly, it may give us clues about what to do about it.
Apparently the discovery is exciting Lyme researchers because they have found that proteins on the surface of the Borrelia bacterium can signal the immune system by attaching to receptors on the surface of white blood cells. The white blood cells are the ones responsible for fighting off infection.
That tiny attachment triggers production of an external protein that traps and stops other white blood cells from controlling the production of antibodies. When this occurs, antibodies are churned out in large numbers, often non-specifically, which results in inflammation throughout the body.
Researchers conclude that through therapeutic intervention they may be able to detach that external protein, and thereby suppress the inflammatory response.
Here is the abstract of the article, online in the Journal of Bacteriology:

Borrelia burgdorferi is a causative agent of Lyme disease in North America and Eurasia. The first complete genome sequence of B. burgdorferi strain 31, available for more than a decade, has assisted research on the pathogenesis of Lyme disease. Because a single genome sequence is not sufficient to understand the relationship between genotypic and geographic variation and disease phenotype, we determined the whole genome sequences of 13 additional B. burgdorferi isolates that span the range of natural variation. These sequences should allow improved understanding of pathogenesis and provide a foundation for novel detection, diagnosis, and prevention strategies.

Consider the spirochete: a minute, ancient creature. And yet it can cause so much distress. Something so tiny and simple can wreck such collosol havoc. Now perhaps the discovery of this microscopic external protein, only recently become visible to scientists, can help bring about healing.

Has Lyme changed your mind?

Lyme Disease Research Database — 2011-01-01T13:05:53-05:00

Every New Year's Eve I write down my goals for the New Year. Written lists have an uncanny way of materializing -- perhaps not as soon as we would like, or in the way we imagined, but all in all the act of writing down your goals for the coming year does seem to influence your ability to achieve them.

I also write down my goals for each month, putting them in a journal dedicated for that purpose only. I got my journal out today and looked it over, scanning to see the trajectory of the last five years since I've been dealing with Lyme.

My goals were strikingly immediate in the beginning, and health naturally became my number one priority. In the past they'd had everything to do with professional, financial, and relationship aims. But starting in 2005 my written goals became narrow and specifically focused on getting healthy. Common actions and abilities I once took completely for granted -- thinking clearly, talking without stammering, walking around the block, putting in a good day's work, sleeping peacefully, or waking up rested -- it all seemed very hard to imagine.

From the perspective of today, I look back at that time with more than a little fear. 'What if' questions start gathering in my head like storm clouds. What if I ever get that sick again? No matter how far behind you the illness gets, once a powerful antagonist like Lyme has twisted you like a rag and hung you out to dry, one is never the same. Revisiting my deepest wishes I'm amazed at how much faith I had managed to express. I kept my focus on positive affirmations. One month is a simple list of 10 goals, each a variation on the same theme of trust in my body's innate wisdom, in its ability to heal.

Please do not misunderstand. I'm not saying that I believe I healed from Lyme because I wrote down my goals. The point is, writing them down strengthened my resolve to work hard at healing. Going through the long dark passage of disease and emerging on the other side is one heck of a life changing experience.

The brain and all the systems of the body can be affected by the Lyme bacterial complex. But even when the brain has been affected there is hope. Further, there is the miracle of transcending brain changes and tackling new studies, such as learning a new language, an instrument or sport.

For proof and a shot of inspiration, read this New York Times article by Oliver Sacks:

This year, change your mind.

Merry Christmas

Lyme Disease Research Database — 2010-12-24T17:15:28-05:00

Dear Reader,

May your neighbors respect you, trouble neglect you, the angels protect you and heaven accept you!

May you have a peaceful holiday.

Good wishes for your full recovery,
Suzanne

I'm Dreaming of a Healthy Christmas...

Lyme Disease Research Database — 2010-12-18T14:23:40-05:00

Just like the ones I used to know.

Holidays are a mixed bag, aren't they? On one hand, they offer a break from routine workday (or sick-day) stress. On the other, they can cause even more stress. First, there's the family get-togethers, which wouldn't be so bad except it means putting up with Uncle Fred or cousin Irma, who want to engage you in an intense conversation about your Lyme disease symptoms (which you're trying unsuccessfully to put out of your mind for one evening), or they are insisting that you immediately make an appointment to see this really amazing doctor they found because (although they have done no research themselves) they don't believe your doctor is treating you correctly.

Or, and this is the more likely scenario, your friends and family are thrilled to see you looking pretty good, walking upright, tracking conversation with ease, so they totally ignore the fact that you are indeed sick. They proceed to put the whole year (or three, or five, etc.) out of their minds completely. Like a bad marriage, your illness gets pushed into the past so everybody in the room can feel more comfortable. Your mother or your dearest friend then proceeds to pour you a glass of wine, pass the See's chocolate, and swoon over little Chloe's sugar cookies which are decorated with more candy than you've seen all year.

You may be able to politely resist the alcohol and pass on the cookie tray, but with a sigh you glance over the traditional holiday foods piled high on the plate your dear ones have placed in front of you. And it smells so good. If you've been making a sincere effort to heal, you have been good for months. No sugar, no wine, no Girl Scout cookies for goodness sake. Why not indulge a little, you tell yourself. However, as anybody with Lyme can tell you, one night of sweet indulgence on sugar or alcohol can zap your strength for many days, bring on a dismal case of brain fog and trigger chronic symptoms such as skin rashes, headaches, and more.

As strict as I am with myself, even I find it difficult to resist holiday temptations. A colleague wanted to meet downtown at a local brewery the other day. I had my last beer on Halloween and it brought about a skin rash on my fingers and hands, my weakest spot and most pernicious symptom. I am not drinking beer anymore. And wine, which is said to be good for you, is still alcohol, it's still sugar, and although it's a lovely thing to share a toast with your dear ones over the holidays it can be done with mineral water. Discipline? Yes, you need it in spades. Determination too. But tell me, what more motivating factor do you need than your own recent experience with Lyme symptoms?

My life is no less joyful or rich because I am not sipping wine, ordering a slice of heavenly Tiramisu, or dipping into the candy bowl after dinner. In fact it's just the opposite. The quality and beauty of my life intensifies the more I tend to my health. This Christmas I'll lift my glass and toast to my loved ones' health. Perhaps it's a cliche that if you have your health you have everything, but it's true.

Happy holidays, everybody. May you have fulfilling work, understanding relatives, true friends, and a clear mind and healthy heart so you may enjoy them all. "Wisdom is to the soul what health is to the body."

New Lyme test for neuro symptoms

Lyme Disease Research Database — 2010-12-03T16:24:05-05:00

Like you, I've devoted a lot of my time and energy to figuring out how on earth to get better. "Be well" is my mantra, and I'm sure I'm not alone here. So when someone points me in the direction of research that's being done in the name of Lyme testing, I'm all ears. Here is something you might be interested in hearing more about as well: a new test for Lyme disease.

As we know, many people sick with a Lyme infection are routinely dismissed by medical doctors who aren't trained in diagnosing or treating Lyme as "crazy," or at best, "exaggerating." This type of reductive response from medical professionals can really sting. Nothing like being kicked while you're down, and from the very people you have turned to for help. I know how it hurts, and I've experienced firsthand the fearsome mental disorientation that this disease can cause.

I remember hearing my (deceased) father clearly saying my name. I jerked my head in the direction of his voice, fully expecting to see him standing next to me. I remember hearing the phone ringing, ringing, ringing, and each time I picked up, a little girl on the other end pleading to talk with someone whose name I did not know, someone who she swore lived there. I recall sitting in a chair all day for one entire day, afraid to move, practically afraid to breathe, for fear that movement would make the utter despair I felt inside even worse. It felt like standing, during an earthquake, on the brink of insanity, where even one small tremor would send me tumbling into the chasm below.

But I wasn't crazy. I had Lyme. I had an infection that was affecting my brain, and that's all. And I have gotten better. I continue to heal, and of course that is also my deepest desire for you. So what about this new test?

Evidently, there are neurological manifestations that have non-neurological root causes. It is important that doctors understand this when dealing with patients who present with neurological difficulties and challenges. The new Lyme test is capable of assessing whether someone has had "an immune response to the Lyme disease bacterium Borrelia burgdorferi and whether the infection is currently active."

The test has been developed by Pharmasan Labs, Inc. in collaboration with NeuroScience, Inc.

From their website:

NeuroScience, Inc., by virtue of its name, has its foundations built on understanding the nervous system. Our understanding of the nervous system has led us to a point where, from a biochemical point of view, we must further consider the role hormones, cytokines, and neurotransmitters play, not as the messengers of individual systems, but rather as parts of a much larger picture. Our goal is to embrace a more global perspective on health that incorporates facets of neurology, immunology, and endocrinology. This newly emerging field has been defined as “neuroimmunology” and it forces us to rethink our approach to health and disease. Our adoption of the principles of neuroimmunology have resulted in an expanded menu of laboratory services that now include a wide spectrum of neurological, endocrinological, and immunological markers.

There are a lot of big words in that paragraph. Don't let them put you off. I think this test, this lab, may be onto something very important here. I'm looking forward to talking with their scientists very soon. Stay tuned for an interview, and meantime read up about their new Lyme test (and how you might use it), on their website.

Be well.
Think positively.
We can get better.

Managing chronic Lyme symptoms

Lyme Disease Research Database — 2010-11-12T17:41:44-05:00

If you have chronic Lyme, or post-Lyme symptoms, like I do, it's up to you to raise your awareness and change your behavior if you need to. You can't depend on your doctor to tell you to start an exercise program, give up sugar, stop drinking pop, and never touch a glass a wine. You have to make those decisions yourself. Okay, some doctors may counsel you to exercise, but speaking generally, they won't bother. It's not their job. It is their job to find the pathology and fix it, not to counsel you in preventing chronic illness.

Most chronic disease (perhaps including chronic Lyme) is a result of long-term behaviors, including diet, exercise, and other lifestyle factors. This should come as no surprise. Habits may be hard to break, but if getting healthy is our goal, we do ourselves a disservice when we don't recognize the problems caused by our own repeated behavior. Complementary and Alternative medical practitioners, such as nutritionists, acupuncturists and nurse practitioners are generally aware of this. Many perhaps most, Western doctors are not.

My own experience has taught me this. Eating sugary food or drinking alcohol is one example. I've been living with so-called chronic Lyme for 6 years now. When I make the choice to eat those cookies, knock back that beer, stress out from overworking, or skip the gym for days on end, my body reacts. I can ignore the obvious cause and effect. I can attribute the flare-ups and Lyme-brain to the capricious Borrelia infection, or I can take responsibility for giving the infection an advantage. I can choose to recognize my own culpability, and next time the cookies are passed around or my friend wants to pour me a glass of wine, I can simply say no thanks. What may have begun with a Borrelia infection from a tick bite can be exacerbated by habitual behaviors that continue unchecked for years or even many decades. Nothing about chronic Lyme is simple. There is even controversy over calling it 'chronic Lyme.' But one thing seems clear. Medicine alone cannot cure a person suffering with long-term Lyme symptoms. We need to approach healing from multiple levels.

Success stories are published here for many reasons. We need the inspiration, the 'atta girl/boy' pat on the back, for one thing. For another, we want a recipe. 'How did that person do it? What protocol did she or he follow? If they can do it, maybe there is hope for me.'

Managing chronic Lyme disease is dicey, no question about it. But there are many ways to prevent the problems we know are lurking, by making intelligent choices and stopping behavior known to increase the problems. One way to begin raising your awareness around habits that may be hurting you is to see what the Lyme experts say about it. If you think for one minute that drinking alcohol is okay when you have a Lyme infection, just check out what Dr. Burrascano has to say about it.

Dr. Burrascano's bullet list for chronic Lyme:

CHRONIC LYME- Treatment Issues
• In chronic Lyme Disease, active infection may persist despite prior antibiotic therapy
• Relapses do occur and retreatment is often needed
• Repeated or prolonged antibiotic therapy usually is necessary
• High doses of antibiotics are needed, and blood levels should be confirmed wherever possible
• Antibiotic combinations usually are necessary
• Check for co-infections and immune status, and treat appropriately
• May need to rotate through different regimens based on response
• If the CD-57 count is not normal at the end of treatment, then continued illness or a relapse is likely
• May not cure the infection, and may need repeated or open-ended maintenance therapy
• Signs of persistence of infection:
– continued fevers, synovitis
– four week cycles, migrating symptoms
– PCR positivity and low CD-57 counts
• As symptoms wind down, I DO NOT cut the dose, for resistance may develop
• Aggressive supportive therapy is required- and search for any other possible cause of a weakened host:
– Toxin exposure, heavy metal poisoning, malnutrition, endocrine dysfunction, other illnesses, severe or ongoing stress
• Progressively increase exercise program as the symptoms of Lyme decrease
– Exercise is vital and required, or a full recovery will not occur
– Not exercising will increase risk of a relapse

* This post was modified by the editor on 11.24.10.

Have Lyme? Have patience.

Lyme Disease Research Database — 2010-11-07T09:32:06-05:00

Treating for post-Lyme or chronic Lyme infection may be highly controversial in the medical industry, but down here in real life it seems quite clear-cut: You have Lyme. You go to a doctor who treats your Lyme infection. You get better. After a time, you stop taking the antibiotics. You go back to work, to caring for your kids, to everyday life. You may or may not change your diet, your lifestyle, your stress levels. And then sometimes, not always, but sometimes years after the fact, the Lyme infection returns. Is further treatment necessary? Sometimes yes, sometimes no. Sometimes the flare-ups continue and increase in intensity, driving you back to the doctor. Chronic or not, the label is not the essential thing. Treating the flare-up, or the return of the symptoms, is.

My mother raised five rambunctious kids. She tells me she often prayed for guidance. Her favorite prayer was: God, grant me patience, and give it to me RIGHT NOW! Patience is certainly a virtue in healing chronic or post-Lyme disease. But cognitively knowing it and embodying patience in everyday life are two different things.

Here in the mountains of NC, we've just received our first snow. Although I welcome the changing seasons, I find myself getting a tad anxious about the coming winter. It's hard to be patient when you have no control. And of course, who has control over the weather? Last winter was no picnic for people with Lyme. The cold weather poses many more challenges to people who struggle to keep their body temperature at an even keel. Plus, skin conditions that are common with Lyme and co-infections are exacerbated by winter weather, little sun exposure, and snug clothing.

Seeking personal inspiration and practical advice about treating Lyme, I looked back through our posts and conversations with healthy post-Lyme survivors. How do these people remain strong? Are they just made of different stuff? Do they worry, like I do, about tiny signs of Lyme's return, a sore that won't go away, a persistent itchiness. The occasional Lymie surge of dizziness that fades almost as quickly as it comes on.

Then I found Darryl Crews' advice about treating Lyme disease, which I want to share with you. I so appreciate his level-headed approach to treatment. Also, not surprised to see 'patience' right there at the top of the list:

1. PATIENCE, DETERMINATION, WILL POWER, DEDICATION, DISCIPLINE: Your chances of recovery are good if you happen to possess these qualities.

2. MEDICATION: Treat all known infections thoroughly with specific antibiotics. Treat aggressively until infection load is reduced to a point where the immune system can take over. Consider IV if you have neuro symptoms or fail to respond to orals. Learn to embrace herxes and avoid under treating at all costs.

3. DETOX: Address die-off daily to decrease toxins and reduce herx intensity. Consider using supps/herbs, sauna, Epsom salt baths, coffee enema, colonics, etc.

4. SLEEP: There's no such thing as too much. Quality deep sleep is a vital part of healing. Lyme causes fractured sleep. Auto CPAP is my all-natural sleep-aid of choice.

5. SUPPLEMENTS/HERBS: Daily support is required to assist the body with balancing nutrients, detoxifying and boosting your immune system.

6. EXERCISE: Thick blood harbors infections and toxins. Daily exercise will keep the blood flowing. Keep it basic for 10-15 mins twice a day (calisthenics, walk, cycling, swim, stair climbs or yoga.)

I especially like #4. My treatment routine includes meditation and deep breathing at night and again in the morning. Sleep is indeed essential, and these little habits help create the space for a good night's sleep.

I've come to accept that my approach to treating Lyme is unique, and if it's working, it's the right thing to do. But those dark clouds outside the window, that nippy breeze lifting leaves off the trees. What Lyme treatment approach can fend off cold weather? I'm still treating with teasel tincture and hoping it will help keep my body warm, as it has been doing for several months now. And come to think of it, it's lunchtime. A nice pot of carrot-ginger soup sounds perfect. Ginger is a warming food.

What is your attitude about winter? How do you stay warm enough and protect your skin? Lyme treatment, especially treating for chronic Lyme disease, is different for for everyone, but there is so much we can learn from each other.

The Best Lyme Treatment

Lyme Disease Research Database — 2010-10-30T16:46:20-04:00

You've just been diagnosed. Now what? The best course of treatment for Lyme may be the one your doctor prescribes. And it may be a combination of treatments that you devise or discover for yourself.

In another post, I asked readers if they had ever reached a crossroads in Lyme treatment. In comments and emails, the response was a resounding yes, people are doing quite a bit of experimenting with herbal and non-pharmaceutical remedies. Some work, some don't. What doesn't seem to change is the urgency that drives us to keep searching. A woman wrote me to say that she read about teasel on our blog. She decided to try it. A half a year later, she says that including a low dose of the herbal tincture of teasel is the single best move she's ever made in treating herself. She says it keeps her warm, which is a very good thing. An insidious side effect of Lyme infection is a lowering of the body's core temperature. The Big Lyme Chill. It's what makes some Lymies apprehensive about winter. We are already cold enough.

I'm trying teasel too. I began taking it in May 2010, a very low dose, which I had learned about through interviewing with Master Herbalist Matthew Wood. It is, so far, having a positive affect. But I'm a skeptic. I believe that it's not just one herbal tincture that is affecting my health, but a combination of factors. When I ask other people who have cured themselves of serious diseases to talk about how they did it, they seem to have a similar approach. I call it cross-training, and others have called it an Integral approach to healing. In a nutshell, my cross-training approach covers these four areas: experience, behavior, community, and the social systems where my resources can be found. Cross-training is a sports analogy. Getting healthy again after a terrible brush with death and a long illness takes the kind of commitment that pro athletes apply to achieving self-mastery, to winning, to beating the competition against all odds. It takes courage, and work. Not just teasel.

You may feel that you're not in charge of your own Lyme disease treatment. The medical community is certainly divided on the topic, as you probably are well aware. Just for the moment, let's turn away from the limitations of the government standards as we perceive them. Let's focus on the possible. Put it this way: What can you do to make yourself feel more in control of your progress? What small step can you take today? Maybe make a decision that you've been putting off, such as quitting sugar, or getting a second opinion from a nurse practitioner or a nutritionist, or starting a walking routine. Whatever it is, don't put it off. The best Lyme treatment is the one you can stick to, and ultimately of course, it's the one that works to restore your energy, your vitality, and your one precious human life.

Wanted: YOU to live a healthy post-Lyme life

Lyme Disease Research Database — 2010-10-13T17:04:09-04:00

"You know you don't have chronic Lyme disease anymore when you're ready to plan a trip."

I honestly can't remember (Lyme-brain) who said it to me, but that casual remark has been rolling around in my head a lot lately. I'm not exactly planning a trip, but my professional workload has increased exponentially this fall, and I am multi-tasking like a brand-new BlackBerry. I feel I actually COULD plan a trip, and that is almost just as good, if you know what I'm saying.

Chronic Lyme disease has been a way of life for five years, however, I got a wake-up call yesterday when I caught myself saying out loud, "I could never have multi-tasked like this when I had Lyme."

When I had Lyme.
When I HAD Lyme.

Such a lovely phrase! I could sing.

Let me back up for a second though and tell you: I have no medical proof of this statement. In fact, in all the years I've been looking into the problem of Lyme disease treatment and diagnoses, what I have discovered is evidence to suggest that a healthy post-Lyme survivor will probably continue to play host to the Lyme bacterial complex throughout their life.

So the question is, why do some people, regardless of their duration or methods of Lyme disease treatment, develop into healthy post-Lyme survivors -- and why do some people develop symptoms of chronic Lyme disease? It's a maddening situation.

I talk to many people involved in the medical and healing professions. When I first began conducting these interviews five years ago, I observed that many doctors had differing opinions about every aspect of Lyme, particularly when it came to Lyme disease treatment. I assumed that I would soon begin to hear the same approach being used by the doctors I interviewed. But instead, over the years I have noticed that all the experts have their own perspectives, their own opinions, their own approaches to healing Lyme. And Lyme isn't simple. Nothing about it seems to be simple, though much about it has certainly been oversimplified.

The answer to that question, of why do some suffer from chronic Lyme symptoms, while others seem to drift back into a post-Lyme level of relatively good health, is a mystery to me. I will keep asking the questions, and knock on wood in the meantime.

I receive a lot of letters from readers of this blog, and you are all in my heart every single day. My wish is for all of you to experience that unique and buzzing wonder that is a healthy mind and body: ready, willing, and able, to work, love, and live a normal life again. To surprise yourself one day soon by hearing these words come out of your own mouth: When I HAD Lyme...

And maybe you'll plan a trip too!

Battling Lyme Disease – The Warrior’s Journey

Lyme Disease Research Database — 2010-09-29T10:25:21-04:00

This is a guest article from Triza Schultz.

Just recently, I sat in one of the tranquil rooms at the Longevity Healthcare Center in San Luis Obispo, California, talking with owners Peter J. Muran, MD, and Sandy Muran, PhD, about their mission in partnering with patients on the fairly new concept in the western medical community of addressing the “whole” person in the doctor’s office throughout the healing process – the body, the mind, and the spirit.

I’ve been winning the battle over Lyme disease for over 10 years. I was accurately diagnosed in 2005 at the age of 52, by Internist and Lyme Specialist Daniel K. Kinderlehrer, while living in New Mexico. My case took the slower, hidden route of thyroid and adrenal breakdown which caused several previous doctors to diagnose mild Benign Essential Tremor, Fibromyalgia, and Chronic Fatigue. Then as the disease progressed untreated, the symptoms morphed into significant neuro-muscular malfunctions and heart fluctuations, which mimicked MS and Parkinson’s diseases, resulting in the inability to walk, being bedridden.

Lyme and its comrades of co-infections are brilliant at mimicking other conditions and diseases. Left untreated Lyme kills! Read full story

MDs aren't educated in nutrition - Drink water and drop sugar

Lyme Disease Research Database — 2010-09-08T15:27:24-04:00

She is a large, tall woman, obese, yet she's always there, running on the treadmill, stretching and sweating with the rest of us. Over the past year I'd noticed her, because our gym routines seemed to coincide. But she seemed shy and kept to herself, so I had never talked with her until one day last week. We made eye contact, smiled and said hello. I wanted to tell her that I'd noticed she was dropping the pounds. I realized that she was a lot younger than I had assumed. Probably still in her early 20s.

I told her that she was looking great, and she stopped pumping iron and grinned, blue eyes clear and sparkling. She thanked me for the encouragement, and I learned her name, Amy. As we talked, she told me that not too long ago, she'd been just about ready to quit the gym. Then a woman where she works (at the local hospital) started mentoring her about nutrition.

She laughed and told me that until recently, "I didn't know anything about food. I just ate what I ate."

I asked if she felt better. She praised her current state of health, saying that when she dropped the junk food and soda habit, and kept on working out, her energy increased and her moods improved, almost overnight. "I couldn't believe that what I was eating had so much to do with how I was feeling," she said. "Now I know," she said, flashing her beautiful smile.

I know that Amy's story isn't directly relevant to us Lymies. But her story is important because a lot of us simply "eat what we eat," without thinking about it, and don't even notice that nutrition has any bearing on our health, or on Lyme disease. We just don't know, until we know. Bad eating habits can depress our immune systems, damage our kidneys, clog our arteries and make us feel generally awful.

One thing that I learned from having been so ill, was that my body is a precious thing. I remember vowing to myself as I lay in bed for all those terrible months of acute Lyme pain, that if I ever got well again I would do everything in my power to stay healthy. In my mind, that meant vibrant, organically grown foods, exercise, laughter, continuing to develop my knowledge of nutrition and health, and loving myself as much as I care for my family and friends.

Doctors (MDs) do not get any training or education in nutrition. They do not get any training in preventative approaches. Their training is in treating us after they have diagnosed us as sick. We need to keep this in mind, and seek researched information on foods and drink that may harm us, or help us.

Junk food is a crime. We have a nation of obese, sick adults and children, and junk food is still legal. Please take a cue from Amy, friend and hospital worker, and "push the water," as she says. I had asked her what one thing she thought was making the biggest difference in her overall health improvement, and she had said "water." She drank sodas all day long before. Now she pushes the water, and it's making a big difference.

Are you drinking enough water? Have you dropped that addiction to sweets and junk? I wish it were different, but I believe that unless we take more control of our own diets and get smarter about our habits, we won't be getting better anytime soon.

On my reading list for the month: The Sugar Fix: High-Fructose Fallout That is Making You Fat & Sick

Nutrition & diet are essential - Interview with Ginger Savely

Lyme Disease Research Database — 2010-08-07T12:15:25-04:00

I had a very uplifting conversation with Ginger Savely the other day.

Ginger R. Savely, RN, FNP-C is a primary care provider who specializes in treating Lyme disease symptoms.

She has bachelors degrees in both Psychology and Nursing and graduated summa cum laude in her nursing class at the University of Texas where she was named Outstanding Graduating Senior. She has masters degrees in both education and nursing, and recently earned a doctorate degree in research.

Ginger is a member of ILADS, a prestigious group of world experts on the treatment of Lyme and other tick-borne diseases. She was honored by her peers by being selected to receive the 2004 Texas Nurse Practitioner of the Year Award. Ginger's clinic is called TBD Medical Associates and she is located at Union Square Medical Associates, in San Francisco. She can be reached at Ginger Savely.com.

It's great to get Ginger's perspective on nutrition, and as we talked about what Lyme patients can do to include diet and nutrition in their protocol, she mentions Dr. Royal Lee, who first recognized that processed foods cause many health problems. She points out that MDs are not trained in nutrition, and that in general, most interested citizens know more than their doctors about food and its effect on their health. MDs are trained to fix the current problem, not to counsel patients about eating a healing diet.

Patients looking for guidance in diet and nutrition generally cannot get it from their LLMD. Although there are exceptions, and many doctors do go on to study diet and nutrition as part of a healing approach, in general, MDs are just not trained to think in that way.

So, what's a Lyme patient to do?

To help her patients educate themselves about healing from Lyme disease, Ginger recommends that they read a book called The Fourfold Path to Healing, by Thomas Cowan. She says it's a must-read for Lyme patients. The 100 Perspectives that is available on this website is also a "cross-training" approach that I've taken for recovering from Lyme. Getting better requires looking at the bigger picture of health, and not simply taking the antibiotics prescribed by a doctor, even an LLMD.

Attitude is another part of the big picture that Ginger spoke with me about. Lyme symptoms often manifest in our emotions and mental states, and it is well-known that holding onto anger can be very damaging to the immune system. She discusses how she has observed that patients who hang on to anger or have bitterness toward the world can throw a wrench into their own healing process.

Listen to my conversation with Ginger Savely.

How many vitamins are too many?

Lyme Disease Research Database — 2010-07-31T11:03:59-04:00

We all know that suffering with Lyme symptoms can really push you to the edge. So when an expert says, "do this thing, e.g., take a handful of vitamins, and you'll feel better," we will go to just about any length to do that thing.

If you take upwards of 30 different supplements per day (or if it just feels like you do), and you are a bit depressed by the amount of time, money and energy you spend on them, then Ginger Savely, FNP, is on your side. She is on the hunt for products that give us "the most bang for our buck." Instead of taking 30 pills, you can get the same amount of supplements in just a couple of products such as Green Vibrance, which includes many of the vitamins we want in our healing diets, and fish oil.

Ginger is a nurse practitioner with a doctorate degree in research, who owns the SF clinic where she primarily sees patients with Lyme and Morgellons disease, of whom a high percentage also have Lyme. But Ginger's work does not stop there. She is a lifelong learner (and a former Lyme patient herself), who is currently enrolled in advanced courses in clinical nutrition and diet.

She began treating Lyme patients over a decade ago, and over the years gathered her recommendations into a pamphlet that she provides new patients. One patient, after looking over the material, told Ginger that she "sat down and cried," after reading it. She simply felt overwhelmed by the amount of things to take. She felt she would never be able to take all the supplements she needed to take.

Her patient's response made an impression, and Ginger then began to listen to her own gut instinct, and change the way she views diet and food. She says that instead of putting the emphasis on vitamin supplements in isolation, she now sees diet and food choices as a central component in healing Lyme disease.

Ginger has long suspected that the isolated vitamins we consume may not be the most efficient way to supplement our diets. And she readily admits she has been guilty of it herself, advising her patients to include vitamins recommended by popular research studies. Yet in her gut, she's always been curious as to just how effective these vitamin pills are.

Asking her patients didn't clear up the matter much. They would often say they took a long list of supplements, not because the vitamins made a difference in the way they felt, but because they were afraid to stop, just in case they might feel worse.

But Ginger's instinct has pointed her in a different direction. In terms of eating well to support a healing diet, she might say it's back to the future.

What does she advise her Lyme patients to do now? Get your healing supplements directly from the food you eat. Eat the old-fashioned way, by which she means the way we ate 100 years ago. Don't shy away from a little bit of animal fat, she says. The chronic illnesses that are currently such a problem in the western world, such as heart disease and diabetes, have come about since we started cutting "healthy" fats from our diet and replacing them with refined carbohydrates and refined sugar.

Eat the way your grandparents (or your great-grandparents) did. Whole foods, meat with a little fat on it (preferably grass-fed and organic), organic veggies. Above all, no refined carbs or sugar, which have absolutely no place in a healing diet.

On the occasions when Ginger does indulge in sugar, she feels "foggy" the very next day. She is a self-described sugar-holic, so she understands how difficult it is for some people to give it up. Yet after a few initial suggestions, she says, patients who agree to drop sugar from their diets seem to need no reminding. The body knows it will heal faster without it. After a couple of weeks of going without, it simply doesn't appeal to them anymore.

If you do eat sugar, keep it to the whole foods variety which at least includes a little nutritional value. Blackstrap molasses, unrefined honey may be tolerated by some people. Agave sweetener is processed in the exact same way that refined sugar is, and we have been "sold a bill of goods on that," she says.

If you don't eat sugar, antibiotics will have a better chance of working, and you may heal more quickly. Ginger observes that her patients who indulge in refined sweets do seem to take a slower route back to living a vibrantly healthy, post-Lyme life.

Ginger is featured in our Expert Audio Series. You can hear her interview for free by signing up for our LDRD newsletter.

Lyme doctor punished for helping children

Lyme Disease Research Database — 2010-07-24T12:11:23-04:00

Pediatrician and hero to many moms and kids with Lyme disease, Dr Charles Ray Jones is being "harassed" by the medical community for treating Lyme disease, says state Rep. Jason Bartlett (D-Bethel).

Bartlett sponsored a bill that was passed unanimously by Connecticut State Legislature in 2009 that protects doctors who treat chronic Lyme with antibiotics over extended periods. But although it may protect doctors in the future, it's not doing anything to protect Dr Jones right now.

"The law 'allow[s] a licensed physician to prescribe, administer or dispense long-term antibiotics for a therapeutic purpose to a patient clinically diagnosed with Lyme disease.'"

Jones has been ordered to hire a monitor to examine his patients charts every month, given four years of probation and smacked with a $10,000 fine. Jones expects the monitor may cost $2,000 - $10,000 per month. He says "it's hopeless," because he simply cannot afford it. But what really burns up his supporters is that the good doctor appears to be the mouse in a game of legal cat-and-mouse being played out at his expense.

In a New Haven Advocate article from July 13, Time Is Running Out For Controversial Chronic Lyme Disease Doctor Betsy Yalga writes,

"None of Jones’ patients has complained, he’s quick to point out, and none has been harmed by his treatment. He’s never been sued for medical malpractice. The charges against him have been levied by fathers involved in custodial battles over their children. In those cases Mom was in charge of treatment and Dad was in charge of payment and disputed the need for treatment. By complaining, Jones’ supporters say, Dad could get back at Mom and possibly skirt paying a costly medical bill. There were no allegations of harm done to the children."

Please listen to a brief interview with Dr Charles Ray Jones.

Samento & Banderol found significantly effective in Lyme treatment

Lyme Disease Research Database — 2010-07-11T12:02:48-04:00

A tick-borne, multisystemic disease, Lyme borreliosis caused by the spirochete Borrelia burgdorferi has grown into a major public health problem during the last 10 years. The primary treatment for chronic Lyme disease is administration of various antibiotics. However, relapse often occurs when antibiotic treatment is discontinued. One possible explanation for this is that B. burgdorferi become resistant to antibiotic treatment, by converting from their vegetative spirochete form into different round bodies and/or into biofilmlike colonies. There is an urgent need to find novel therapeutic agents that can eliminate all these different morphologies of B. burgdorferi. In this study, two herbal extracts, Samento and Banderol, as well as doxycycline (one of the primary antibiotics for Lyme disease treatment) were tested for their in vitro effectiveness on several of the different morphological forms of B. burgdorferi (spirochetes, round bodies, and biofilmlike colonies) using fluorescent, darkfield microscopic, and BacLight viability staining methods. Our results demonstrated that both herbal agents, but not doxycycline, had very significant effects on all forms of B. burgdorferi, especially when used in combination, suggesting that herbal agents could provide an effective therapeutic approach for Lyme disease patients. -- from article in Townsend Letter, July 2010

Samento and Banderol are found to be important herbal allies, in this study conducted by our friends at the Lyme Disease Research Group of the University of New Haven. In our interview with Eva Sapi, PhD, director of the graduate program in Lyme disease research, she promised that she was quite determined to find an effective agent that would "kill the bug -- and soon." So, this study is proof that Dr Sapi is following through with her promise. It is a hopeful note in the battle against the nasty bacterial complex we know as Borrelia burgdorferi.

Personally, I am very excited about these findings. Samento and Banderol have been my medicine of choice for several years. These herbal extracts have certainly been effective, helping me pull myself out of a painful, groggy nightmare and get my life back on track. Those two herbal tinctures daily, plus a host of other supportive supplements, a regular exercise routine, and a sugar-free, whole-foods diet, have made all the difference. Samento and Banderol have truly been my allies in this cross-training approach to healing.

Please read the entire article reporting on the study, which you can find on the website of the Townsend Letter, the Examiner of Alternative Medicine. The article is titled: In Vitro Effectiveness of Samento and Banderol Herbal Extracts on the Different Morphological Forms of Borrelia Burgdorferi by Akshita Datar, Navroop Kaur, Seema Patel, David F. Luecke, and Eva Sapi, PhD -- Lyme Disease Research Group, University of New Haven

Members, to learn more about the work of the University of New Haven Lyme research program, please listen to our interview with Dr Eva Sapi. You will also find more information about Lee Cowden, MD, and his herbal protocol.

Jessica Wojenski, teen on a mission to educate people about Lyme

Lyme Disease Research Database — 2010-07-03T11:54:18-04:00

As reported in the Hollis Brookline Journal, teenager Jessica Wojenski, who recently graduated from New Hampshire's Bedford High School, has struggled to recover from Lyme symptoms severe enough to keep her out of school much of her junior and senior years.

“There’s such a lack of awareness out there about this that unless you scare people into realizing, they’re never going to get it, even though I hate doing that,” Jessica told the reporter.

I know just how she feels, and you probably do as well, if you have suffered with debilitating Lyme symptoms. Jessica is dedicated to raising awareness of the complications the disease can cause. Evidently she did not show symptoms in the early stages, which is a problem that many of us deal with -- not even suspecting Lyme disease as a cause of our painful and disorienting symptoms until the disease has progressed beyond the early stages. Kudos to her, and we hope she continues to find support in her New Hampshire community, which is located in the hot zone for ticks and Lyme infections.

When you are first diagnosed, you can easily be overwhelmed by information about what to do. What will work, what won't? Who should you consult and who can you trust as a reliable resource?

I agree with Jessica, there is not enough awareness of the serious nature of Lyme disease out there. Like her, I contracted Lyme about 5 or 6 years ago, and my painful symptoms and treatment quickly made it impossible for me to live my life in a normal way. Since then, my mission has also been to help educate people about this disease through sharing my interviews with Lyme disease experts and people who are living normal, healthy lives again, post-Lyme.

My life is now back to normal, thankfully, and my hope is that yours will soon be too. This is a good place to start educating yourself and clear up any confusion. Our list of "10 things you need to know about Lyme," is available immediately, when you sign up for our free newsletter.

NIH develops more sensitive test for Lyme disease

Lyme Disease Research Database — 2010-06-26T11:17:55-04:00

Reported in the June, 2010 issue of Clinical and Vaccine Immunology:

New Test May Simply and Rapidly Detect Lyme Disease

Researchers from the National Institutes of Health have developed a more sensitive test for Lyme disease that may offer earlier detection and lower cost. The details are reported in the June 2010 issue of the journal Clinical and Vaccine Immunology.

Lyme disease is a bacterial infection transmitted to animals and humans by deer ticks. A skin lesion at the site of the bite is one of the first signs of infection followed by potential neurological, cardiac, and rheumatological complications upon entering the bloodstream. The Centers for Disease Control and Prevention currently recommends a two-step blood test for diagnosing the disease, however, several limitations include low sensitivity during the early stages of infection, significant time and expense, and an inability to distinguish between active and prior infection.
In prior studies the luciferase immunoprecipitation system (LIPS) test showed promise at detecting a variety of infectious agents including viral and fungal pathogens. Here, LIPS was evaluated for its ability to detect antibody responses to Borrelia burgdorferi proteins in blood samples taken from a patient group (some healthy and some with Lyme disease) as well as a control group. Results showed that diagnostic levels of 98% to 100% were achieved using LIPS in conjunction with the synthetic protein VOVO.

"These results suggest that screening by the LIPS test with VOVO and other B. burgdorferi antigens offers an efficient quantitative approach for evaluation of the antibody responses in patients with Lyme disease," say the researchers.

(P.D. Burbelo, A.T. Issa, K.H. Ching, J.I. Cohen, M.J. Iadarola, A. Marques. 2010. Rapid, simple, quantitative, and highly sensitive antibody detection for Lyme disease. Clinical and Vaccine Immunology, 17. 6: 904-909.)

Biotoxins test and chronic Lyme

Lyme Disease Research Database — 2010-06-20T16:43:26-04:00

Biotoxins created by the Lyme bacterial complex and released into the body can cause chronic illness, even when antibiotics are killing the spirochetes. You will recognize these illnesses by their other names: Chronic Fatigue Syndrome, Fibromyalgia, Sick Building Syndrome, irritable bowel syndrome, and depression.

People who cannot naturally eliminate biotoxins develop chronic illness. About 20% of patients with Lyme disease, due to their hepa-type, are susceptible to biotoxin illnesses. However, according to Dr Richie Shoemaker and other biotoxin experts, the toxins can be eliminated and good health can be restored.

From biotoxin.info: "Many physicians feel that diagnostic tests for Lyme are unreliable, due to differences between strains of the bacteria, and the potential for co-infections with Bartonella, Babesia and/or Ehrlichia. A team of researchers at Boston University Medical Center (Cartwright, Martin Donta) discovered and patented (US Patent No. 6,667,038) the Bbtox1 neurotoxin. They reported that the effects of Bbtox1 were consistent with that of botulinium and other cytoskeletal toxins. Even so, there are no chemical tests for the disease-causing toxin B. burgdorferi produces and releases into human body, even as antibiotics are killing the bacteria. Without such tests, the medical debate over whether or not Lyme can be quickly cured has surged in recent years, provoking frequent battles in which physicians have attacked each other's credibility and integrity (and in a few cases, even their medical licenses). All too often, suffering patients have been left in the middle, essentially ignored by doctors who contend that their long-term symptoms aren't the result of Chronic Lyme, but of 'Fibromyalgia,' 'Chronic Fatigue Syndrome', 'depression,' or 'irritable bowel syndrome.'"

Testing for nervous system dysfunction can be done online. The Visual Contrast Sensitivity (VCS) test is a pattern recognition test that Dr Shoemaker uses to help determine how the nervous system is functioning. According to Dr Joseph Burrascano, at least 70 - 90% of patients whose VCS test is abnormal feel better with treatment, while 30% of patients who test normal from the VCS test feel better with neurotoxin treatment.

When testing for Lyme infection, coinfections are often culprits that go undetected. Be sure to look for Bartonella or Babesia, which destroys red blood cells.

Dr Shoemaker and other Lyme experts agree that if you find elevated C4-A markers, and if symptoms are persistent beyond the initial antibiotic protocol that may indicate that a longer antibiotic treatment, possibly including intravenous antibiotic therapy, is needed. As he makes it clear in this video, you and your doctor will be the judge in whether or not you should use long-term antibiotics.

Interview with Lyme Dr David Jernigan

Lyme Disease Research Database — 2010-06-12T10:27:01-04:00

If you were a Lyme literate doctor writing a new book on Lyme treatment, where would you turn to find the most urgent questions being asked by people who are suffering with Lyme? The online forums. Now imagine reading a book that addresses your most pressing questions about Lyme diagnosis, treatment, and symptoms. Dr David Jernigan wisely consulted the forums online to find out what the patients he cares for most need to know.

When I was diagnosed with late-stage Lyme in 2005 a dear friend sent me Dr Jernigan's book, Beating Lyme Disease. Since my diagnosis I had been in a state of shell-shock, weak and sick, and barely knowing anything about the disease or its cause beyond the very basics.

Beating Lyme Disease was the beginning of my turnaround. This comprehensive book helped me begin to understand what was happening, and how the body responds to Lyme bacteria. I particularly remember how helpful it was to learn about the lower core body temperatures that Lyme patients develop. While reading, I became steadfastly determined to beat Lyme, despite the grim prognosis of my infectious disease doctor. In fact I dropped that doctor like a hot potato and found a naturopath who also believed I would be healthy again one day.

Now the new, second edition of Dr Jernigan's enlightening and useful book is available, sporting the inspiring subtitle: Living the Good Life in Spite of Lyme.

Recently, I had an opportunity to talk with Dr Jernigan and learn about his unique approach to Lyme treatment. He has witnessed the positive turnaround of thousands of Lyme patients at the Hansa Center for Optimum Health, his clinic in Wichita, KS. One of the first things he clarified was that many people come to see him and his colleagues after already having seen an average of 20 - 30 other doctors or more, without finding relief.

Chances are you've experienced that fruitless search yourself. Dr Jernigan says he hears it from his patients every day. People who have been dismissed and their terrible pain reduced to imagination with, "it's all in your head," or "you need a psychiatrist," or even, as one of his patients was told by a previous doctor, "you need a new husband." I like to remember when my infectious disease doctor told me bluntly, "you are too late." (Wrong!)

Clearly, one big problem in Lyme diagnosis is that our medical industry depends on doctors who specialize. A cardiologist specializes in finding heart problems and fixing them. A dermatologist specializes in finding skin problems and fixing them, and so on. But we are not mechanistic parts and pieces, welded together like the engine of a Toyota. And Lyme is not a problem that can always be located in one particular spot. It affects all the systems of our body, including the brain and so also the mind.

If you have ever felt that a specialist has given you lousy and limited information about your illness and how to treat it, you know what it's like to be treated like a piece of machinery.

In contrast, the Hansa Center for Optimum Health has a whole person approach. Their motto is: "Healing From Within, Treating the Whole Person, Body, Mind & Spirit."

Soon I'll be reviewing the 2nd edition of Dr Jernigan's book, Beating Lyme Disease: Living the Good Life in Spite of Lyme.

Contact him through the Hansa Center's website. Listen to "The Bridge," the Hansa Center's "New Healing Radio Station," located on the website's home page.

LDRD members please login and listen to our interview with Dr Jernigan. Hear him describe his unique, whole person approach to beating Lyme, and living the good life in spite of it. Become a member

Tennis star beats Lyme disease

Lyme Disease Research Database — 2010-06-09T16:23:45-04:00

Beautiful and powerful tennis star Samantha Stosur faced her formidable opponent squarely. In 2007, she was struck down with Lyme disease, battling severe fatigue, skin rash, and other symptoms that ripped her off the path to stardom. Since that time, she has not only beat Lyme disease, but also proved herself as a force to be reckoned with on the tennis courts.

Why do athletes seem to have a superb ability to beat Lyme and other serious diseases? There are probably many reasons. We believe it has something to do with maintaining a positive mental focus on winning (putting mind over matter), and regular exercise, which warms up the body's core temperature. Although Sam was unable to exercise (or indeed, even take care of herself) while the disease was in an acute phase, she did return to training and competing as soon as she could muster the strength.

Athletes engage in a program of regular vigorous exercise which raises their body temperatures on a consistent basis, which induces sweat. The raised temperature heats up the body's environment, keeps the lymph flowing at a healthy rate, and kills off toxins and bacteria so they can be carried away in the sweat and washed off.

This is a recent story that probably didn't escape your attention if you are a tennis fan and you have Lyme.

Watch a brief interview with Sam.

Trust your doctor. Or not?

Lyme Disease Research Database — 2010-05-20T17:13:54-04:00

Anyone in the medical profession deserves heartfelt respect. Most of us honor these men and women for serving humanity in the most fundamental way: Caring for the sick. But what do you do when your own doctor, the saint with a compassionate heart, won't listen, and you know something is wrong? This frustrating experience is common among people with Lyme disease.

Many people, doctors included, believe that a bull's eye rash is the definitive Lyme symptom. In fact, up to two-thirds of people infected with Lyme never develop a rash. When I say doctors I mean doctors from all fields. That includes GPs, Infectious Disease specialists, Neurologists, Dermatologists, Hematologists, Cardiologists, you name it.

It is a mistake to assume that your family doctor (or your dentist, for that matter) knows anything about Lyme disease or common Lyme co-infections, such as Babesia, Bartonella, or Ehrlichia. They will most likely tell you with some degree of confidence that Lyme is rare, hard to get, easy to cure, or that it simply doesn't exist where you live. This is old thinking, but you may be surprised how many people (doctors too) are not educated about Lyme, yet possess strong opinions about it.

Tick bites can occur without anyone noticing. They do not hurt. You may have never seen a tick on your skin, or you might have been told the ticks in your region don't carry Lyme. You might remember a tick bite, but you never developed the bull's eye rash, and wrote off the other symptoms as a bad flu, a touch of arthritis, or a passing case of tachycardia.

If you are symptomatic, and have been told that you don't have Lyme but you strongly suspect it, have your blood tested through the IGeneX laboratory. Obtain a second, third, or fourth opinion. Most people who are now successfully overcoming Lyme will tell you they saw 10, 20, 30 doctors or more before they found help.

In my own case, several Infectious Disease doctors I consulted with were quickly convincing themselves that I must have multiple sclerosis. Every cell in body and mind knew with absolute certainty that they were wrong. During that period, I had my blood tested at IGeneX, so I knew that they were wrong. These doctors saw the test results with their own eyes and did not trust them. However, I was in no shape to refute them. At the time I was extremely weak, unable to articulate my thoughts, speak clearly, and was essentially wasted from a horrible full-body rash (not the bull's eye, which actually might have been helpful in terms of their diagnoses).

Prior to my IGeneX test, the expensive dermatologist I consulted had prescribed Prednisone, and taking it (I later learned) was possibly the worst thing I could have done. The steroids explosively multiplied the spirochetes and drove them deeper into my body and brain. Finally I found a naturopath who believed my test results and had treated several patients who had Lyme and co-infections. He was my saving grace. He was hard to find, because I entered this illness naively, believing that all doctors knew best. I had no clue that I'd have to fight them for my life.

You may love and trust your family doc. And indeed, he or she may be saintly and have a heart of gold. But it's your life we're talking about. If your intuition is nagging you to get another opinion, listen to that inner voice. Your intuition is a highly sensitive and intelligent guide, designed to nag for purposes such as this.

The good news is there are educated Lyme doctors who can help you. However, you might have to make an effort to find them. In addition to IGeneX, check out these two new tests, the DNA test and the antigen test.

Healing Lyme Naturally

Lyme Disease Research Database — 2010-05-08T12:43:06-04:00

Healing Lyme Disease Naturally: History, Analysis, and Treatments
by Wolf D. Storl
Foreword by Matthew Wood
North Atlantic Books

In our interview with herbalist and teacher Matthew Wood, you may recall his mentioning a new book, Healing Lyme Disease Naturally, by Wolf Storl. Matthew wrote the foreword to this book, and talked to us about the role of the herb teasel (Dipsacus sylvestris) in healing Lyme. Dr Storl is an anthropologist and herbalist, as well as an engaging and prolific writer. He has published twenty-eight books, and his work has been translated into numerous different languages. He has also taught university courses in medical anthropology. As a result of a superinfection that resisted antibiotic treatment in an earlier illness he suffered, he was unable to take antibiotics when he discovered he had Lyme. For this reason, he was forced to turn to older methods of treating a serious disease. Dr Storl healed himself using teasel and supportive therapies, such as a light diet, exercise and hyperthermia.

This new book is not going to appeal to everyone. However, if you are interested in herbal medicine and lore, or if you're investigating alternatives to antibiotics, you may find it a captivating read, as I did. It will give you a comprehensive picture of Lyme and another spirochetal illness that resembles Lyme, and that is syphilis. (Matthew Wood and others have called Lyme "deer syphilis".) Through the wide lens of medical history, and illustrated with his own personal story, he shows us how these diseases have been viewed and treated in different cultures through time.

If you've become paranoid of picnicking by the lake, or you panic at the sight of a weird-looking spider on the wall, this book may help restore your sense of wonder about nature, and lose a little of the fear. After all, as he points out in a provocative examination of the advent of antibiotics after WWII, microbes are not the enemy. They are an integral part of us.

Early in the book there is a fascinating chapter about the stealthy make-up of the Borrelia spirochete. Research scientists have told me that the Borrelia bacteria is capable of dormancy, changing forms, and hiding from the immune system. I just never really understood quite how until I read this chapter, which explains the Borrelia bergdorferi and its "astonishing typical characteristics." Among them:

Depending on the conditions of their environment, borrelia can take on different forms. Besides the normal spiral or corkscrew spirochete form, they can cast off their cell wall and, held together by a thin pliable membrane, take on globular form. In this way, cell-wall-inhibiting antibiotics are rendered useless. In this spheric form (also called L-form) they are not recognizable for the immune cells; they have, so to say, no "features," no antigens, by which they could be recognized.
Borrelia can also encapsulate and go into dormancy within minutes. They seem to do this when their environment is polluted by antibiotics, for example. Until the environment improves for them, they can remain dormant for at least ten months without carrying on basic life functions such as metabolism or dividing. As long as they are metabolically inactive, antibiotics have no effect of them. The patient believes he has been finally cured, but then the symptoms rebound anew.
Borrelia can attach to host cell walls (mainly scar-tissue cells and even defense cells) and induce the cell to release its own digestive enzymes, which eat a hole in the cell wall. The spirochete then enters the cell, kills the nucleus, and wears the cell wall as a disguising cloak or mask. This is another way in which these terrorists of the microscopic world evade recognition by the immune cells.

Included in his telling of herbal lore and histories are intriguing ethno-medical stories. For example, did you know that at one point in the 19th century, doctors injected syphilitic patients with malaria? It seemed to help. About a third of the patients would get healed. Another third weren't affected at all, and the other third entered a long remission. Years later, in the 1930s, the medical establishment discovered why it helped: the malaria caused spiking fevers of 107 degrees, which killed the Borrelia bacteria. Hyperthermia has long been used by many different cultures to kill bacteria of all kinds.

Dr Storl raises and explores important questions, such as whether Lyme is a new illness, or an old disease that was diagnosed as other conditions. Aside from an examination of teasel and how it works in healing Lyme, dosages, preparation methods, and more, there are many practical tips included here, such as measures to take to protect against tick bites (essential oils such as cedar milk, clove oil, tea tree oil, peppermint oil and others may be effective when rubbed onto exposed skin areas), and an explanation of the way antibiotics such as doxycycline work.

Want a Lyme test that looks for antigens?

Lyme Disease Research Database — 2010-04-28T17:14:40-04:00

"We have to go on," says Tom. "We can't change yesterday, but the thing that keeps us going is that sooner or later we're going to catch that bug in time, and save someone from going through this pain."

Tom was sick and suffering with mysterious symptoms for nine years before a test finally convinced one of his doctors that he did indeed have Lyme disease. At that point, he began taking antibiotics. In the first month, severe Herxheimer reactions made him even more ill than he had been without treatment, but he continued for five months. Three years later, he now feels better in most ways. Occasionally, he has bad days that he attributes to the Lyme bug, but feels that for the most part, it is suppressed.

"I thought I was dying," he says. Hit by a massive anxiety attack while driving through Kansas, he experienced such debilitating vertigo that he had to pull the car over to the side of the road. "Everything was spinning wildly around me."

"I had lost track of the number of doctors I went to for help over those nine years. One doctor in Massachusetts, who I knew thought I was crazy finally told me that he thought I was crazy. He told me there was nothing wrong with me, and recommended psychiatric help."

"He told me that he thought I was an 'attention-seeker'."

I said to him, "Look, doc. I'm a concert pianist and a concert organist. If I want attention, all I have to do is book a recital. I don't need attention from you."

The test that finally clinched the correct diagnosis for Tom is a special kind of technique called Flow Cytometry. It is available at the Central Florida Research Laboratory, located in Winter Haven, FL. Instead of looking for the antibodies that build up in response to a Lyme Borreliosis infection, the Flow Cytometry technique finds the Borreliosis antigens directly.

Since Spring 2007, the CFR lab has tested several thousand people for Lyme disease. Blood samples arrive from locations all over the globe, including all over Europe, where Lyme disease is known simply as Borreliosis.

In addition to testing people, CFR also tests animals for Lyme. Please refer to the CFR website for more information about the Flow Cytometric Lyme test for pets and people.

Central Florida Research Laboratory
Winter Haven, FL
Medical Director: Clifford H Threlkeld, DO, FCAP
Phone Number: (863) 299-3232
Fax Number: (863) 299-3355

Beautiful weather brings tick danger

Lyme Disease Research Database — 2010-04-20T11:34:28-04:00

"Go outside and play!" Sound familiar?

I grew up in a time and place where the accepted norm was to spend every possible moment out-of-doors. My mother gently objected to my lounging on the couch for hours, absorbing books by the stackful, whenever it was sunny and warm outside. But since I grew up in SoCal, it was ALWAYS sunny and warm. I did ruin my eyesight, so she was probably right about that. And although I read voraciously in the summer (and every other time of the year), I still managed to make it outside to swim and hike with friends pretty much every day as a kid.

So when spring comes tumbling in, bringing beautiful outdoorsy weather, should you still be sending your kids outside to play? Have things changed now that you are aware of the dangers of Lyme? Now that you know you and your loved ones are only one tick-bite away from it?

This spring, reports are already piling up in regional news, warning that this is likely to be a heavy tick season. The ticks are early and plentiful.

One suggestion for preventing Lyme is to advise your kids not to sit on the ground. Now, how realistic is that? For kids, part of the allure of playing outside is the opportunity to investigate the bugs and other critters crawling on the ground. And when you're little, how else can you eat your snacks, play tic-tac-toe in the dirt, examine the fluttering moth you just caught in your hands, if not sitting on the ground? And what about toddlers who are still getting their sea-legs, and end up sitting more than walking?

One thing that really bugs me is when I read, over and over in various articles, that ticks must be embedded for 24 hours or so in order to infect the person they bite. While that may be a comfort to read, there is no scientific evidence to support it. Prevention is the very best medicine, not wishful thinking.

Aside from prevention, early detection is still the most important thing when it comes to having been exposed to ticks. Bear in mind, tick bites don't hurt. This is because the tick injects a sort of anaesthetic with the bite that will numb the area, so you won't feel it. Perform regular tick checks on yourself and your kids, especially after time spent playing outside. Take the time to be careful and diligent. Remove ticks before they have a chance to get embedded.

And please tell everybody you know that tick checks are vitally important.

New Lyme test for early detection

Lyme Disease Research Database — 2010-04-10T12:02:22-04:00

Here's a piece of good news. If you live in the Lyme-endemic region of Milford, CT, you have a new option for testing. And -- unless you have Aetna -- your insurance plan should cover it.

Pathologist Sin Hang Lee, MD, and his team have developed a DNA test for early Lyme detection. Details are available in the American Journal of Clinical Pathology. The test is the first of its kind. I recently talked with Dr Lee about the new test, which has been in use at the Milford Hospital for about one year. Click to listen to our conversation.

Early detection is extremely important. People who are diagnosed with Lyme in the early stage have a good chance of receiving treatment that will cure them, and they will have no further complications from the disease. The DNA test eliminates the false positives that are problematic in the traditional Lyme tests, specifically the Western Blot and the ELISA.

The test is good news for people in the Milford area who suspect they've been bitten by a tick. Reports from other regions in the NE, such as Portland, Maine, are already warning of an increase in tick bites this year.

And it's only April.

According to the announcement of the new DNA Lyme test, "physicians at the Milford Hospital Emergency Center and Walk-in Urgent Care Center, who see about 40,000 patients a year, usually order the traditional antibody testing and the new DNA test for patients presenting with Lyme disease-like symptoms. Most insurance companies except Aetna will pay for the test."

Patients and physicians interested in information on this DNA test may call George Poole, manager of Milford Medical Laboratory, at 203-876-4496.

Listen to our interview with Dr. Sin Hang Lee about the Lyme DNA test.

Staying Lyme-free in an endemic region

Lyme Disease Research Database — 2010-04-03T16:00:02-04:00

"Almost everybody I know either has Lyme disease, or they know someone who is undergoing Lyme treatment," said my friend Dee, who moved to the Hudson Valley, NY just a few years ago.

She'd been telling me about her favorite pastime, walking with her dog, Daisy, through the woods near her small house.

"Knock on wood, I haven't gotten it yet. It's kind of shocking how many people have, but honestly, I don't think I've ever even seen a tick out there," she added. I could tell she was amazed at her good luck. "But the fact that I haven't gotten sick doesn't seem to make me more cautious," she went on. "In fact, I feel sort of immune to it." She paused, considering this idea for a moment.

"Are some people just more susceptible than others?" she asked.

While silently giving thanks (and feeling relieved) that my friend remains happy and healthy, I explained what I've learned from Lyme experts regarding our susceptibility.

Ginger Savely, RN, tells us that in her experience observing and treating Lyme patients, it's true that some people tend to attract ticks, just as some of us are mosquito magnets, and some never get bit. Other medical professionals, such as Dr Cowden and the late Dr Joanne Whitaker, who have studied Lyme, its testing and treatment for a lifetime, claim that the Lyme bacteria can be found in body fluids, such as tears, sweat and semen. Pediatrician Dr Charles Ray Jones, who is nothing short of a hero in many of his colleagues and his Lyme patients' estimation, says he has treated very young children who were infected by their mother while in vitro.

"The problem with being Lyme-free while living in a place such as the Hudson Valley," explained Dee, "is that you lose your fear. You don't take the precautions you know you should because it just hasn't happened yet."

Here are some precautions to take, if you plan to venture outdoors in this beautiful spring weather. Be sure to check your dog, too.

To reduce the risk of Lyme disease:

• Wear light-colored clothing and preferably long pants and long sleeves when in places where ticks may be present. This helps in spotting ticks that may be on clothes. Tucking pants into socks is also a very good idea.
• Perform a tick check every day so ticks can be removed before they have a chance to feed and transmit pathogens they might be carrying. Research indicates that a tick has to feed for at least 36 hours before it can transmit pathogens such as the bacteria that causes Lyme disease.
• Consider the use of repellents if spending considerable time outdoors.

Source: New York State Health Department

PS: I asked Dr Eva Sapi, Director of Lyme Research at the University of New Haven, Connecticut, whether it was true, in her estimation, that a tick must be attached "for at least 36 hours before it can transmit pathogens," and she assured me there was no evidence to support that assertion.

Ever reached a crossroads in treatment?

Lyme Disease Research Database — 2010-03-30T16:02:07-04:00

Have you or your Lyme doctor chosen to supplement or substitute your treatment using herbal therapies, homeopathic remedies, or other alternative treatments? Over the years, I've noticed that a fair number of people who are undergoing Lyme treatment at some point decide to switch to, or at least try, herbal remedies, traditional Chinese medicine, rifing, super-oxygenation, or other alternatives to conventional antibiotic treatments. It seems that a lot of us reach a crossroads at some point in our healing journey, and have to make an important decision.

In my case, I treated with heavy doses of antibiotics for six months, and over that time period I slowly emerged from the hell of the symptoms I was experiencing. I'd been diagnosed in a late stage of Lyme, and the treatment had been as hard on my body as the original symptoms, or even worse. Actually it was impossible to tell which was worse, the treatment, which made me re-experience the original symptoms, or the sickness itself. After six months of treatment I had returned to work and was feeling generally better, but was unable to continue antibiotics for financial reasons. I reached the end of that six-month period and although I was relieved to get off the antibiotics, my doc was clearly worried about a relapse. I kept up my herbal and vitamin supplements, which were super-expensive but proving to be well worth the cost. I was curious about Samento, so I started Dr Cowden's herbal antibiotic protocol as soon as possible after I took my last conventional pill. I've always been proactive regarding staying healthy, so getting enough sleep, regular exercise and eating a good quality Mediterranean diet are my staples.

For many reasons (not only financial), Lyme patients decide to try herbs, or many other types of treatment such as HBOT (hyperbaric oxygen treatment), rife machines, Vitamin C and salt, or other compelling treatments. For example, Matthew Wood, the renowned herbalist I spoke with a couple weeks ago, tells us he's treating Lyme successfully with the common herb, teasel, and that instead of killing the bacteria, teasel warms up the body's environment and lures the bacteria out from its hiding places to be killed off by the body's own immune defense system.

In some cases, people I've talked to say they simply had an inner compulsion to switch up treatments. Evidence exists to support changing types of antibiotics because the Lyme bacteria will grow accustomed to one type of treatment, and just stop responding to it.

How did you or your doctor respond when you reached such a crossroads in your Lyme treatment? If you made changes in your treatment along the way, how did your switch effect you? Has it been positive, challenging, or pushed you into a new level of healing?

Your Lyme treatment & supplement safety

Lyme Disease Research Database — 2010-03-23T17:57:00-04:00

Health insurance may be directly affecting your ability to get the medical treatment you need. A fair number of people who leave comments on this blog tell about the confounding experience of being rejected by their insurance companies. When a door slams in your face, whether you are in the middle of treatment or just beginning, your treatment choices are reduced or eliminated entirely. What then?

So now that the dust on the Congressional floor is settling, and the historic health care reform bill has passed, how will it affect your treatment? If your insurance company has refused to cover you for pre-existing conditions, will you now be able to reapply for coverage? During the coming weeks, we will be interviewing medical insurance experts who can help us understand the fallout from this historic passage.

Meantime, I want to call your attention to another bill under consideration, one that might also affect your treatment. I know I'm not alone in supplementing my treatment with vitamins and herbs. There is currently a bill in congress that, if passed, could change our ability to buy vitamins and supplements as common as CO-Q10, Vitamins D, C, and others.

The Dietary Supplement Safety Act of 2010 (S.3002), would amend The Federal Food, Drug, and Cosmetic Act so the FDA would have absolute discretion to decide market availability of, as well as mandatory recall authority over, supplements. Some are calling this proposed act a prohibition of supplements.

We believe that consumer safety is of the utmost importance, and S.3002 has targeted products containing steroids and other illegal substances. However, the entire vitamin and supplements industry could as well be effected, with devastating results to small-company suppliers of herbal supplements, vitamins and to the people who buy those items to supplement their treatment.

As health advocate Stephen Sinatra, M.D., F.A.C.C., F.A.C.N. puts it, "The problem with this bill is that its provisions are too broad, and don't specifically target the problems at hand.

We need the FDA to protect consumers against harmful products without smothering an industry that lacks the resources to comply with over-regulation. Coupled with greater FDA authority to decide which supplements are suitable for market, the new regulations create the potential for pharmaceutical companies to indirectly strong-arm smaller supplement companies out of business.

A more realistic balance between consumer safety and freedom in health care is possible through a more streamlined and carefully structured bill. S.3002 should not be passed as is, and public opposition could set the stage for closer scrutiny of any related supplement regulation."

Concerned about the future availability of supplements in your Lyme treatment protocol? Let your Senator know your opinion. Send an email or a place a quick phone call. Want to read the bill? Google the Dietary Supplement Safety Act of 2010 (S.3002) to view the .pdf.

Learn how to approach Lyme through holistic cross-training.

What's stressing you?

Lyme Disease Research Database — 2010-03-20T17:04:00-04:00

Stress is believed by many to be a huge contributor of illness. Struggling with Lyme disease symptoms is stressful not only on your physical and mental bodies, but also on your emotions. And to top it off, even your own awareness of the stresses in your life can be a source of anxiety.

I remember when I was told that my Lyme-induced skin rash was nothing but a bad case of eczema. The nurse practitioner I'd gone to for help asked me in-depth questions about my rash, my diet, and my health history. She seemed puzzled that I was not the type who might suffer from eczema. I had never overused antibiotics, my Mediterranean-type diet included fresh greens and did not include sugar or alcohol. I was very much in love with my life-partner and running a small business that satisfied my financial needs, and which gave me time to spend with family and friends.

As I stood to leave, she peered pensively over her glasses at me and tapped her pen against her chin for a second. "You really must do something about whatever is stressing you out so badly," she said.

When I returned a blank look, she threw me a doctorly look and added, "think about it."

On the drive home, I soul-searched, but still couldn't locate a source of stress along the magnitude she was referring to. It wasn't as if I was living in a bubble, I had certainly had my challenges and bumps on the road of life. But at the time, things were going well. As a naturally self-reflective person, I felt a little embarrassed. Out of touch with myself. Was I making myself sick? By the time I pulled into my driveway, I had concluded that there must be something really wrong with me -- mentally and emotionally, not physically.

Months later, when a different doctor had my blood tested at IGeneX and I received a positive diagnosis for the Lyme infection, I felt that odd sense of relief familiar to many people with this disease. The illness, the mysterious symptoms, the long journey to a positive diagnosis, and the diagnosis itself is so hard-fought and hard-won. And finally, the physical and mental stress of treatment itself. It was a little like that old joke about the tombstone engraved with "I TOLD you I was sick!"

If you think stress might be a contributing factor to your illness (or like me, even if you don't), here are 7 things to do to eliminate or reduce tension and anxiety every day.

1. Set strong boundaries.

2. Take time for yourself.

3. Find areas of your life to maintain control.

4. Learn when to say "no, thanks."

5. Surround yourself with supportive and proactive people.

6. Ask for help when you need it.

7. Love yourself.

How do you deal best with the everyday stresses in your life, as you heal from Lyme? Please let me know in the comments. I'd love to hear from you!

Reduce stress with the 100 Perspectives on Lyme Disease.

Matthew Wood tells how teasel works

Lyme Disease Research Database — 2010-03-06T12:21:10-05:00

I feel great! It could be the sunshiny weather, or the fact that I am not Lymie anymore, having survived a recent herx. But I think what really lifted my spirits was talking with herbalist Matthew Wood, about the effectiveness of the herb teasel on Lyme and co-infections. I got a major energy boost from listening to him describe the way teasel works. After our conversation I immediately went to Amazon and ordered his book, The Book of Herbal Wisdom: Using Plants as Medicines which has a comprehensive chapter all about this strong herbal medicine. I can't wait to learn more about it.

Teasel is considered a common weed that can frequently be found growing alongside highways. It is not an herbal antibiotic. Matthew explains that instead of killing the bacteria itself, it actually changes the environment in the body in order to engage the body's own capabilities to kill off Lyme bacteria. By warming the cells and muscles, it invites the Lyme bacteria into the bloodstream, where the body can then detox.

The detox or herx reaction from teasel is apparently a force to be reckoned with. In Matthew's experience, people using it as a part of Lyme treatment notice this reaction starting in about the second week of use. Only a very few drops of this powerful herbal tincture can cause reactions. He is well-known in herbalist circles for recommending low dosages, and tells about a woman who called him after treatment with the happy news that she could tell the teasel was working at a very deep level of healing.

Matthew's latest book was co-written with Wolf D. Storl. Wolf is a German man who writes about healing himself of Lyme disease using teasel, in Healing Lyme Disease Naturally: History, Analysis, and Treatments. It is due out from Amazon in April and can be pre-ordered.

Matthew lives and practices in Minnesota, and teaches about herbal wisdom all around the world. He is a Registered Herbalist and holds a Master of Science degree from the Scottish School of Medicine at the University of Wales.

LDRD members, please login to access interview.

Darryl Crews' Olympic Gold-style healing tips

Lyme Disease Research Database — 2010-02-20T10:30:02-05:00

Darryl's interviews are among our very favorite stories here at the LDRD. This guy walks his talk. When it comes to beating Lyme, he is as inspiring to me as any Olympic Gold medalist. Please click here to listen to his updated story, if you haven't already heard it.

Some of you asked him to comment a little more about what it takes to get well. Here's what Coach Darryl has to say.

To me, getting well is a compilation of the following things:

1. PATIENCE, DETERMINATION, WILL POWER, DEDICATION, DISCIPLINE: Your chances of recovery are good if you happen to possess these qualities.

2. MEDICATION: Treat all known infections thoroughly with specific antibiotics. Treat aggressively until infection load is reduced to a point where the immune system can take over. Consider IV if you have neuro symptoms or fail to respond to orals. Learn to embrace herxes and avoid under treating at all costs.

3. DETOX: Address die-off daily to decrease toxins and reduce herx intensity. Consider using supps/herbs, sauna, Epsom salt baths, coffee enema, colonics, etc.

4. SLEEP: There's no such thing as too much. Quality deep sleep is a vital part of healing. Lyme causes fractured sleep. Auto CPAP is my all-natural sleep-aid of choice.

5. SUPPLEMENTS/HERBS: Daily support is required to assist the body with balancing nutrients, detoxifying and boosting your immune system.

6. EXERCISE: Thick blood harbors infections and toxins. Daily exercise will keep the blood flowing. Keep it basic for 10-15 mins twice a day (calisthenics, walk, cycling, swim, stair climbs or yoga.)

On another note…Be sure to tune into the Olympics for a bit of Visual Sports Therapy. Olympic athletes have overcome so much to get where they are and their stories are very motivating and inspiring. Beating Lyme requires the same drive.

Thanks for the kind wishes…all the best and full recoveries to everyone!

Darryl

Please also note: For further info about Darryl: WrongDiagnosis.com: Read about Darryl's misdiagnosis

And in addition, here's where Darryl goes for VO2 Exercise testing on his bike: Useful info throughout site.

Sweet seduction: Valentine's Day temptations

Lyme Disease Research Database — 2010-02-12T16:34:56-05:00

Whether you're snuggling close with your sweetie at the movies, or you doubt the merits of all this Valentine's Day mush, the challenges of a Hallmark holiday can strain the discipline of even the most determined person. When boxes of chocolates appear in every store window, and someone hands you a dish of Candy Hearts bearing messages such as "Be Mine" and "Tweet Me," how easy is it for you to just say no?

The emotional link between good times and sweet treats begins early in life. For some, candy or soda pop was the reward offered for being "good," quiet or out-of-the-way. For others, a piece of cake is sheer comfort. And heaven is a plate-full of freshly baked chocolate chip cookies. Later in life the pattern continues, reflected in the sensual language used to describe our desire for instant gratification. That gooey chocolate cake looks quite tempting. The box of See's isn't simply sitting on the table. It's trying to seduce you into peeling off the cellophane and lifting the cover.

Under certain circumstances, our resistance to sugary enticements can take on mythic dimensions. You don't want to hurt your lover's (or your friend's or your mother's) feelings, which seem to pivot on whether or not you accept their sweet offering. For some this is a willpower test of Biblical proportions.

Except when you have Lyme disease, and you know that indulging comes with a price. Remember how much it hurts to herx? That's all it takes. Just think back to the brain fog and headaches, or the last time your knees ached non-stop, or when even the satin sheets felt like sandpaper on your hypersensitive skin.

If you have an urge for some sweetness in your life, instead of splurging on a dessert try this: give yourself a present. A little luxury doesn't have to cost a lot, and it's a powerful way to help break a pattern you might have established in childhood. Sugar doesn't equal happiness. Buy tickets to a movie you've been wanting to see. Curl up with a new mystery novel and a cup of ginger tea sweetened with stevia. Call a friend. Rent a comedy. Pop some popcorn and pass it around, but when it comes to Valentine's candy, think about how really great you'll continue to feel if you simply say no thanks. And that will be the icing on the cake.

Wake up call: Lyme symptoms return

Lyme Disease Research Database — 2010-02-01T13:12:05-05:00

About six weeks ago I got a nasty wake-up call. My Lyme symptoms began to return. To cut to the chase, I am getting things under control again slowly, but it's been a trial.

Has that ever happened to you?

"It's a rotten deal" to quote my dear old auntie, but it's more than that. I'm trying to keep the perspective that most of all it's a powerful reminder about the importance of staying firmly rooted in my healthy routine.

I forget that I share my body and mind with a bunch of Lyme bugs. When I've got the situation under control, I kill them off slowly and without too much herxing, they don't act out, and I feel good. I can think and talk and walk and work and live and love, just like I was designed to do. The problems start when I forget (as I did six months ago) about the delicate balance I've got going on. Last year I was feeling so incredibly good, so Lyme-free, that I slowly let little things slip. I re-introduced some sugar into my diet. I let myself indulge in a beer now and again -- figuring it's got protein, B vitamins, minerals, magnesium, selenium, iron and it's a stress-buster in reasonable quantities. After all, I rationalized, it was surely not a recipe for disaster, right?

But then, following a few months of slippage, the perfect storm hit.

Literally. Our region was hit by snow-pocalypse in mid-December, leaving us without power for several days. It was cold. I was cold the whole time. We were snowed-in for over three days. My partner was dealing with a health concern of his own, which stressed us both out as we could not get out to get what we needed. In addition, I'd been sick with a flu prior to the storm, so my exercise routine was interrupted. I'd stopped taking a few of my mainstay supplements, and other stuff...you get the picture. When the snow melted and the power came back on I began to make up for lost time (or so I thought) by exercising twice as much, even introducing African dance classes into the mix, which, if you've ever done, is quite the workout!

Anyway, the symptoms have had a hay-day with me, the bugs have been partying, and I'm finally, but ever-so-slowly returning from the brink of a really painful six-week herx. My worst since I was first diagnosed in 2005.

The point is, we each have to determine what the right healing path is for us. For me, the two biggies are keeping up with my supplements and herbal therapies and not slacking on a sane amount of exercise. Also, it's about staying warm, as my body temp runs low, which is typical of people with a Lyme infection. Through trial and error I've also figured out which other things contribute to my personal homeostasis.

And I'm freshly vigilant for the Lyme bugs, who have somehow not quite managed yet to eat my common sense (completely). I'm not going to slip again.

Darryl is back--Listen to his success story

Lyme Disease Research Database — 2010-01-09T20:17:56-05:00

Pro bike racer Darryl is counting the days to an upcoming race in April. Twenty-one months of hardcore antibiotic treatment are now behind him, including IV Rocephin, Zithromax and a go-round of Flagyl and Mepron last summer.

Since this new chapter of life began, Darryl counts among his athletic successes the "Beach and Back" fun bike race, a twenty-six mile, grueling uphill bike course that kept him "in the saddle" for four-and-a-half hours. I don't know about you, but I can hardly stay seated for more than one hour, and that's without peddling of course, without having to stretch and take water breaks. You can hear the surprise in his voice, and the satisfaction at his accomplishment as he describes the effort it took to finish that ride.

Darryl's impressive athletic achievements are no accident. A self-described "numbers guy," he has long been a devout record keeper, tracking his heart rate and other bodily systems with the eagle eye of a master coach. In fact, he is a coach, and takes his role seriously. A handful of Lyme patients have been lucky enough to come into Darryl's orbit, and he helps keep them on track with their Lyme-related needs. Knowing the hell that awaits someone with a positive diagnosis of Lyme disease, he aims to mitigate the bureaucratic and other various challenges that await them.

Some of Darryl's key points for beating Lyme:

Be a warrior. Don't allow anything to stop you from seeking treatment. Darryl saw 35 doctors before receiving a positive diagnosis for Lyme. He is passionate about standing up for yourself in the face of stubborn insurance company policies. His advice when your insurance company refuses to pay for tests and/or treatment that you and your doctor know are necessary? Appeal, and stay with it. Do not give up the fight. If you can't do the fighting, get someone who can fight for you until you can.

Be organized and monitor your progress. Keep your medical files together in one place. Statistics such as test results, enzyme counts, heart rate, weight and the dates of measurement are important, and so are their fluctuations. I love this--Darryl uses spreadsheets to track his numbers. Why didn't I think of that? Carefully monitor your progress. Keeping track of meds, supplements and foods on a spreadsheet is a great idea too.

Put yourself first. We hardly even need to mention this one. While it seems like such an obvious point, it is nevertheless quite difficult for a lot of people to pull this one off. Are you the main caretaker for a busy family? Find a way to take time for yourself every single day. Get enough sleep. It takes whatever it takes to get well. Your family might have to adjust, but rest assured they'll be overwhelmed with relief when you get better.

And finally, exercise, exercise, exercise. That's a direct quote. Even Darryl's mom (who also has Lyme) rides the bike he gave her indoors, in front of the telly. Do what you can to sweat out the toxins every day. Build muscle, which will help your immune system build strength. Darryl addresses this whole issue of exercise with compassion for those of us who suffer with crushing fatigue. He's been there too.

The really, really great news? Darryl's better!

Get your water bottle, jump on your stationary bike, hop onto your mini-trampoline and put on your headphones. Listen to Darryl's interview here.

Listen to the entire interview with Darryl for free!

Podcast - This is a long interview, so it may take awhile to load, please be patient.

Warm up with hot vegetarian chili

Lyme Disease Research Database — 2009-12-21T15:15:40-05:00

Lyme is an inflammatory disease. Following an anti-inflammatory diet can help reduce pain from many Lyme symptoms, such as rheumatoid arthritis and skin rashes.

In some stages of Lyme, you may not feel much like eating, or you may not know what to eat at all. Everything is so different, even your taste for certain old favorites. If you've altered your diet because of Lyme, sometimes you really just crave "normal" food.

Chili is hearty and healthy. It's nice and normal, and one of our favorite comfort foods around here. Here's the basic recipe. Trust me - it's simple and won't make you think too hard. Plus, it'll make your house smell great. Sometimes I switch out the peppers for carrots, or skimp on the chili powder. The herbs are the key to making this dish really scrumptious and satisfying. Add some simple corn bread and you've made a wonderful winter dinner.

Vegetarian chili

Ingredients

2-3 cans dark red kidney beans (drained)
2 stalks celery, chopped
2 onions, chopped
2 green peppers, chopped
2-3 T olive oil
1 28-oz can whole tomatoes
3-4 cloves garlic
3-4 T chili powder
2-3 T cumin
1-2 T fresh parsley
2-3 T oregano
1 1/2 cups of water
1 cup cashews
1/2 cup raisins (optional)

Heat oil in large pot; saute onions until clear, then add celery, green pepper, and garlic; cook for 5 minutes or so. Add tomatoes (with juice; break the tomatoes into small chunks) and kidney beans; reduce to simmer. Add chili powder, cumin, parsley, oregano, water, cashews, and raisins (opt.) Simmer as long as you want. Garnish with fresh parsley or grated cheddar cheese (if you like cheese, try goat, which is easier to digest).

Happy Winter Solstice to everybody.

Here's to your health!

Tick saliva may hold key to Lyme vaccine

Lyme Disease Research Database — 2009-12-14T16:41:07-05:00

Erol Fikrig, MD, and other researchers at the Yale School of Medicine may be hot on the trail of creating a new Lyme vaccine.

What makes this Lyme vaccine different from the one that was taken off the market in 2002?

From a recent post on Science Blog:

"Traditionally, vaccines have directly targeted specific pathogens. This is the first time that antibodies against a protein in the saliva of a pathogen's transmitting agent (in this case, the tick) has been shown to confer immunity when administered protectively as a vaccine."

Apparently the old Lyme vaccine "utilized just the outer surface proteins of the bacteria."

"The authors [of this study] believe this new strategy of targeting the saliva - the 'vector molecule' that a microbe requires to infect a host - may be applicable not just to Lyme disease but to other insect-borne pathogens that also cause human illness."

"We believe that it is likely that many arthropod-borne infection agents of medical importance use vector proteins as they move to the mammalian host," Fikrig explained.

If their scientific hunch proves correct, this study may also have positive implications for treatment of other illnesses that are spread by insects.

"Currently, we are working to determine if this strategy is likely to be important for West Nile virus infection, dengue fever, and malaria, among other diseases."

Treatment issues for children with Lyme

Lyme Disease Research Database — 2009-11-27T11:38:02-05:00

Dr Charles Ray Jones is a man with three ordinary names - yet he couldn't be any more extraordinary in his service to chronically ill patients, the children he treats every single day.

A reader sent a note last week that brought tears to my eyes -- the joyful kind.

Here is part of her note:

"My 11 year old is now under the care of Dr. Jones and is making incredible progress in his path to wellness. I appreciate what you are doing. Thank you for being willing to get the word out. What a frustrating journey this has been but I finally have my medical support system in place. It took a while. I was told by an infectious disease specialist in Maine that I was crazy and that my son was perfectly healthy. Dr. Jones is a saint and he has given my little boy his life back. He is again running and climbing trees and happy and bubbly...a far cry from last year at this time. I wish all of you the best and again, thank you. Have a wonderful Thanksgiving."

Unfortunately, too many moms can relate to being told by a medical professional that there is nothing wrong with their kid, when the reality is that if Lyme bacteria is present, treatment could restore the child's health (and the mother's sanity).

Dr Jones has been called (by a colleague of his), "an international treasure - a courageous, selfless, inspirational, and outstandingly gifted clinician who has helped thousands of the most severely ill children with Lyme disease from around the world to regain their health and their lives."

Dr Jones talked with me a few weeks ago, about Connecticut Governor Rell's June 2009 decision to allow doctors to treat Lyme disease. He also talked about the significance of the recent IDSA Lyme treatment guidelines hearing in Washington, DC, and the future of Lyme disease treatment.

Listen to our brief conversation.

Readers write about Lyme brain

Lyme Disease Research Database — 2009-11-21T08:55:01-05:00

"Kmart" sent these comments in response to last week's post:

1 - I once lost my truck key on the job (gardener). I had three people (customers), for thirty five minutes, looking all over their house and property for it. I must have checked my pockets thirty times and even flipped out my front pockets like a rabbit. Yes (you all have done this) while just standing in confusion & embarrassment my stomach fluttered & face grew red as I had to suddenly admit that I found my key in my right front pocket while casually just standing there. Oops, my bad. There is still no way to explain lyme brain to others.

2 - Having read through the protocol, how in the heck is someone with stage 3 suppose to remember all that? I believe any attempt (at a protocol) is a good one for fighting Lyme. Seriously, there is no way I could stay on this as I am still looking for my keys!

***

Success stories usually, if not always, follow failure. The classic example is learning to ride a bike. If it took falling over nine or ten times before you finally got the balance thing down, than those nine or ten times were more about succeeding than failing.

Healing from Lyme has been sort of like that for me. Starting with getting a diagnosis, which doctors kept getting wrong. I've talked to people for the success stories who said that they went to more than 30, or in some cases more than 40 different doctors before getting a correct diagnosis!

It still makes me shiver to think about the dermatologist who wouldn't even look me in the eye while he was examining my skin rash. I'd brought in a notebook with questions I had jotted down, because I knew I wouldn't be able to remember them unless I wrote them down. The minute I opened it and read my first question, he stopped making eye contact with me! It felt as though he saw me as some sort of weirdo to protect himself against. I absolutely did not feel like I was in the supportive hands of a healer. Of course, it didn't help that I stuttered terribly whenever I tried to talk. He was one of the docs who had prescribed prednisone for my "excema." He was sure he was right. I was sure I was getting worse, not better. At that time I had no clue that the medicine itself was making my disease spread inside my body and brain, quickly rendering me unable to think, talk or keep my balance while walking.

Lyme brain can definitely be funny in retrospect, but I know it's absolutely terrifying when you've got it.

Whether your stories are humorous or scary (or both!), I invite you to share one of yours here. You can either email me directly: ldrd.support@gmail.com or put it in the comments.

All good wishes for healing to every one of you,
Suzanne

P.S. Kmart, I know what you mean about remembering the protocol. I kept notebooks full of schedules for when to take which antibiotic or supplement, to take it before meals, between, whether to take it with water or juice, or put it under my tongue, and how many drops of this and that, when to increase or decrease...It got to where I was either taking a medicine or writing about having taken it. Having Lyme is hard -- but healing from Lyme can be just as tough!

Working with Lyme brain - Under Our Skin

Lyme Disease Research Database — 2009-11-14T10:21:11-05:00

Under Our Skin filmmaker Andy Abrahams Wilson discussing his film on The Wrap.

I have to laugh now, because in retrospect it's funny, but at the time it was embarrassing. It's a memory of my interview with Andy, which I conducted a few years back before the Turn the Corner Foundation stepped in to help fund his film. I'm sure he didn't think much of the incident.

In our conversation, Andy was very gracious. He spoke eloquently about his sister's trouble with Lyme disease, and later, his feeling of helplessness when a close friend of his then discovered she also was suffering from late-stage Lyme. He'd been so moved to do something about the misunderstandings around Lyme symptoms and Lyme treatment, that he entered into the long process of making Under Our Skin, which is still gaining ground and helping the Lyme community to get the word out.

The embarrassing part was that in interviewing him, I couldn't get my phone recording equipment to start correctly. Lyme brain was so intense at the time for me, that I couldn't fix the problem. I had to hang up and call him back. I was too proud to admit that I was having a hard time that day. I couldn't tell whether it was the equipment or me who was glitching. However, Andy was incredibly kind and generous, and allowed me to reschedule our talk for later that day.

It wasn't the first time that had happened. A month earlier, I'd gotten through an interview with Dr Christine Horner, but I could barely hear her the entire time. My tinnitus was roaring, but that wasn't it. It was that awful, foggy Lyme brain again. It took away my ability to multi-task and hold two thoughts at a time. Normally I'm a fairly good troubleshooter, but there was no way I could troubleshoot and conduct an interview at the same time. It didn't even occur to me to ask if we could reschedule. When the interview was complete I hung up, and discovered that I'd put my earphone in backwards. No wonder she'd sounded faint the whole time.

These are not pretty memories.

However, remembering the bad times allow me to measure how far I've come back into balance. Using my brain is one of my favorite hobbies. I guess I'm grateful for all my Lyme experiences now, since I've come out on the other side, and can actually work my recording equipment pretty smoothly again...usually.

What about you? Care to share a Lymie memory? Please share your story in the comments!

Veteran's Day

Lyme Disease Research Database — 2009-11-11T12:38:41-05:00

This is Veteran's Day. Let's take a moment of silence and give thanks to all the veterans who serve our amazing country. In the UK, November 11 is known as Remembrance Day, and in other countries this is Armistice Day.

This post is dedicated to my dad, who served in WWII in the US Navy. Dad was a radio operator and spent many months undersea, working inside Navy submarines. He and mom raised five kids, and he never lost his love for the ocean. Miss you still, dad!

Harold "Bud" William Arthur (1923 - 1974)

Dr Cowden's updated Lyme protocol

Lyme Disease Research Database — 2009-11-06T17:20:31-05:00

Are you treating Lyme disease symptoms after having received a late-stage diagnosis? The problem for many of us who are healing from Lyme is that we know antibiotics are tough on our systems. While I have no doubt that longer term antibiotic protocols are key in killing the Lyme bacterial complex, I've talked to a lot of people who are either severely allergic to antibiotics, simply can't tolerate them after a long period, or have no health insurance coverage and can't pay out of pocket.

Which leaves us with what alternatives? It's very scary to hear your doctor tell you that in order to treat you for Lyme you must have antibiotics, when you a) can't tolerate them physically, or b), you can't afford them financially.

A friend of mine asked me about Lyme the other day. She'd heard that I'd been very sick and wondered if I was feeling better. It was such a huge pleasure to realize that I hadn't mentioned Lyme once to her, since we met a year or so ago. Speaking from my own experience only, I have found that treatment with a combination of methods, including behavioral changes, nutrition and diet and rigorous exercise has worked really well. Not as quickly as I'd like, that's for sure! But these days I consider myself to be living a healthy, Lyme-free life. In part, I achieved that goal with the help of Dr Cowden's protocol, using Samento and Cumanda and a host of other supplements.

Dr. Wm Lee Cowden says that he has discovered that “antibiotics do seem to work fairly well in a lot of patients. But, if they've had the illness for longer than six weeks, the chance of antibiotics getting rid of the infection, in my experience, is pretty unlikely, pretty remote. So, they're basically just guaranteeing that they'll stay on antibiotics for the rest of their life."

“The problem with staying on the standard pharmaceutical antibiotics long term," he says, "is that you kill off the friendly bacteria in your gut, and you cause an overgrowth of fungus in your gut, so then you trade one problem for another."

(The above quote is from my article on the effectiveness of Dr Cowden's Lyme protocol, in the Townsend Letter - The Examiner of Alternative Medicine, April 2007.)

PROTOCOL FOR LYME BORRELIOSIS From Wm. Lee Cowden, MD

Please also note Dr Cowden's condensed support program, updated February 17, 2009.

North Carolina recognizes risk of Lyme

Lyme Disease Research Database — 2009-10-25T17:41:57-04:00

Are you living in a state where the medical board--or worse, your own doctor--won't acknowledge Lyme disease?

Until recently, many North Carolina residents and physicians have presumed that the risk of getting Lyme within state borders was nonexistent. Casualties have included not only residents who contracted the disease, but also Dr Joseph Jemsek's Charlotte, NC medical practice. (Please note: Dr Jemsek moved his clinic to Fort Mill, SC in 2008.)

Dr Carl Williams performs disease surveillance for the North Carolina State epidemiology department. His office is in the tick-counting business. He says that unfortunately, the risk of contracting a tick-borne illness is nothing new in NC.

"Rocky Mountain Spotted Fever (RMSF) is still a greater risk than Lyme in North Carolina, and you can catch both of them here," says Dr Williams.

Risk of Lyme disease in NC has now been officially acknowledged. "However," he adds, "skepticism is high because counts are low." That is, the numbers of confirmed cases of Lyme are still lower than cases of RMSF. There has been one fatality due to RMSF in North Carolina this year.

"As far as prevention goes," says Dr Williams, "there is nothing new to recommend. The same old tried and true methods are still the most effective."

Cooler weather is no deterrent to ticks, so he recommends that we stay tick-aware at all times of the year. "Just because it's January, for example, don't think you can't take precautions or don't need to. We want people to recognize that there are a variety of ticks here in NC, and that it's important to take care and adhere to preventative measures."

What are those tried and true methods?

"Use DEET on areas of exposed skin, and Permethrin on clothes. Perform tick checks when you come in from an area where you may have been exposed to ticks, and realize that even though you can significantly reduce your chances of getting bitten by a tick, taking these safety measures is really not a guarantee. There is no failsafe mechanism to guarantee that a tick will not get onto your skin, or attach to it."

Interview with Functional Movement Specialist Katherine Dowdney

Lyme Disease Research Database — 2009-10-18T18:03:54-04:00

I'm pro exercise! I never had a regular exercise program until I was healing from Lyme, and its perks and positive effects have been countless. It is one of those amazing gifts that's come from dealing with Lyme and chronic problems.

And, I'm so inspired by CJ Jaffe, Perry Fields, and all of the other athletes and exercise enthusiasts we've interviewed here, who have kicked Lyme and continue to integrate a rigorous exercise program into their schedule of healing.

But when we're talking exercise, just how much is enough? How much is too much? Should you start an exercise program without consulting your doctor or medical adviser? After all, getting stronger and getting well are the goals, not wearing ourselves out.

Recently, I had an opportunity to talk about these issues with Katherine Dowdney, a Functional Movement Specialist with a private practice as an exercise and rehabilitation coach. She describes her experience in working with people who suffer with conditions brought about by chronic illness. She talks about the problems and concerns we all face, such as how to choose a good exercise coach and just how far to push ourselves when we're really sick or feeling out of balance.

Here is her bio and website:

Katherine Dowdney’s passion for anatomy and movement is evident in her teaching. She enjoys empowering clients to meet their personal fitness and wellness goals. Utilizing a combination of the Pilates method, yoga, traditional weight training, and additional corrective exercise modalities Katherine has a special interest in working with individuals with chronic conditions and pre or post rehabilitation. Katherine is a certified ACE personal trainer, a dual certified Pilates instructor through Peak Pilates and Balanced Body, an E-RYT 200 hour yoga instructor, an NASM Corrective Exercise Specialist, and an AFPA Post Rehab Specialist. She has received training in experiential anatomy, pre/post natal Fusion Pilates, Sadhana Chi yoga, Children’s yoga, and Structural Yoga Therapy. She recently attended an 8-day training in Therapeutic Yoga for Seniors at Duke Integrative Medicine. Her interests are in mindful movement, pain management, and corrective exercise.

Katherine is a founding member of Moving Women Dance Performance Ensemble in Asheville, NC where she choreographs and performs as a modern dancer. Along with dancing and teaching movement science, she enjoys spending time with her husband, Sam, and their dog, Ranger.

Her website is www.blissful-body.com
LDRD members, please listen to the conversation with Katherine here.

Vote for CJ! Our Lyme Hero

Lyme Disease Research Database — 2009-10-16T13:12:52-04:00

Need a shot of encouragement?

Some days we all do, and I'm glad to bring you an exciting piece of news about a young athlete and registered nurse whose story is chronicled on our Lyme Success Stories series.

Here is an update on CJ Jaffe, who remains a bubbling fountain of energy despite continued trials with Chronic Lyme symptoms. CJ is a triathlon competitor and one of our favorite success stories (read more about CJ's Lyme success story here).

We in the Lyme community don't have too many opportunities to get psyched about something fun. So, don't miss this chance to put a bit of excitement on your healing path. On November 22, 2009, CJ will be competing in her 2nd Ironman Triathlon with Chronic Lyme. More importantly, she will be raising money for the Turn the Corner Foundation to help fund further research.

Here's the fun part: You are invited to follow CJ online on the day of the race. Simply go to ironmanlive.com and click on "Athlete Tracker." Type in "JAFFE" and her stats will come up. So tune in, watch, cheer on CJ and get engaged.

Vote for CJ!

In addition, CJ has been nominated for the Ford Everyday Ironman Hero award, to be presented in front of a crowd of more than 5,000 people. If she wins, the prestigious award will help her build Lyme awareness. Plus, she would receive an extra $1,000 for her charity, the TTC foundation. Please cast your vote for CJ Jaffe for the Ford Everyday Ironman Hero award by emailing helen@nasports.com The more nominations the better!

"I have been feeling okay, considering being treated for the symptoms I have," says CJ. "But, I'm still focused on athletics and I am convinced that between athletics and keeping a positive outlook, it's saving my life. I think I'm going to continue on this road for a while."

There's more!

Stay tuned to the LDRD blog for further information about CJ's plans to launch CTJ, "Create The Journey," an athletic team -- local and national -- of athletes like her. People who are passionate about giving Lyme patients a reason to survive, while positively impacting society.

Call for Lyme success stories

Lyme Disease Research Database — 2009-10-10T12:21:53-04:00

I know from experience that when you're in the thick of an acute illness such as Lyme, all your energy is spent on getting better. The pain can be so constant and overwhelming that you lose sight of what being healthy is. You might not think you can get there ever again. Sadly, we know that this disease can sometimes take an irreversible tact. You don't have to search far to encounter grim stories of people suffering with Lyme.

However, many people do recover from this profound illness. I recently took a road trip with my significant other, attended a family reunion, and reconnected with friends I cherish. Life is so astonishing sometimes, so precious, that now I have complete days when I totally forget how sick I've been, and what a long, slow climb it was back to a state of health.

I've been collecting Lyme success stories almost from the time I was diagnosed, because I felt strongly that if someone else out there had healed from Lyme, then I could too. My parents brought me up to share good news, so I'm still gathering success stories that others can learn from and be inspired.

Have you recovered from Lyme disease? Are you well on your way to a healthy, post-Lyme life?

People take so many different paths back to living a productive life. Many are able to follow a Lyme-literate doctor's protocol until they're Lyme-free. Many aren't able to afford that luxury, and so they use a combination of protocols and techniques that seem to help. Some are on a strict diet, and they claim that it has helped them walk away from Lyme. Some use herbal therapies and devices such as the rife machine. And considering how bone-crushingly weary Lyme can make us, I'm always impressed by the numbers of people who swear that rigorous physical exercise played a central role in their healing. Many of the people we've interviewed in our Lyme success stories, such as Darryl, who races bikes and works as a professional Hollywood stuntman, talk about applying the mental rigor, discipline and intense focus they honed as a competing athlete, to the path of healing.

Walking away from Lyme is something we all desire to do one day. If you've been successful in doing so, please consider sharing your success story with others. You never know when something you say might trigger an idea in someone's head and help them turn their health situation around for good. You won't be telling other people what to do. You'll simply be relating your own experience, which is in itself, a powerful sort of medicine.

Contact me directly for further information about sharing your Lyme success story.

Thank you.

Video--how to repel ticks

Lyme Disease Research Database — 2009-10-03T20:09:24-04:00

The harvest moon is rising outside my office window at this moment. It's full and bright and lovely. I noticed our neighbor's garden is burgeoning with ripe green peppers and orange squashes that need to be picked and enjoyed. Gardening and me don't exactly fit very well anymore -- not since Lyme revised my priorities. I leave it up to braver folks than I, who aren't as paranoid of tiny ticks. However, I still love the idea of gardening, and I'm always interested in discovering ways to do it safely.

How to Repel Ticks -- powered by eHow.com

This eHow video, posted by a gardener, explains the basics about how to protect yourself and your kids from ticks. She recommends the usual precautions, such as covering up head to toe with multiple layers of clothing. Then she mentions something I hadn't heard before. She suggests that on your hands and face, and any other body parts that aren't covered by clothing, you put on oil.

Her reasoning is that although the ticks are nearly impossible to repel once they've gotten onto your skin, they don't like oil because it causes them to slip, or reduces their success at sinking their sharp teeth into your skin. She says any kind of oil will do -- olive oil, lavender oil, baby oil, etc. She mentions DEET, as well, for its effectiveness as a tick repellent.

She also recommends putting your clothing into a hot dryer as soon as you come in from the garden, woods, forest, or wherever you may have been exposed to ticks. She claims that if you put your clothes into the washing machine, you risk setting them loose in the house. However, the hot temperature of the dryer should kill them.

I think I need to ask Dr Eva Sapi or some of our other Lyme experts about these claims before I believe them wholeheartedly. In our last interview, Dr Sapi told us that the biology graduate students in her University of New Haven Lyme research program couldn't even keep the ticks away using DEET, as they went hiking in the forest for a tick-gathering field trip.

What do you think? Have you ever used this oil trick? Is it effective?

Lymelife--see it on DVD now

Lyme Disease Research Database — 2009-09-30T18:18:51-04:00

Lymelife has just been released on DVD. If you missed it in the theaters, buy it or rent it this weekend. First and foremost, it's a heartbreaking story about falling in love and growing up, funny and powerful and poignant. But it's also a story about someone with Lyme. Through the character of Charlie, the movie reveals the unflinching pain--both physical and psychological--that people suffering with Lyme disease experienced in that era.

Even in the Lyme epicenter of Long Island, NY, in the 70s and 80s, Lyme disease was generally considered a made-up thing. Pain pills were subscribed to people who were suffering. Their struggle with sanity and physical debilitation was sad and frightful for their loved ones to witness, but if you were sick and there was no clear reason for it, you were basically left to fend for yourself. The disease was suspected to be psychosomatic, which meant that you somehow brought it on yourself.

Actor and director Steven Martini talked openly with me about the personal nature of his film, which is largely autobiographical. Sparked from the depths of his first experience with true love, the film turns on his character's recognition that life unfolds in tenuous, often dangerous ways. His girlfriend's father is inflicted with this mysterious illness, and the young man is confronted with complexities he is barely prepared to comprehend.

Listen to my conversation with Steven Martini about his latest film, Lymelife.

3 keys to better sleep

Lyme Disease Research Database — 2009-09-26T15:25:55-04:00

When was the last time you got a really good night of deep sleep? Sleep is a soothing tonic for anyone suffering with Lyme symptoms, yet peaceful snoozing can be elusive when you're in pain.

3 keys to better sleep:

1 - Therapeutic massage. Gentle, healing touch can help you relax and get a better night's sleep. Massage is helpful in lowering the anxiety which naturally arises when you have Lyme symptoms. Just the simple act of being touched with compassionate intention can be healing in and of itself. Before you make an appointment with a professional massage therapist, talk over your situation with them. Be certain you can communicate your needs clearly. She or he should be made aware of your illness and your threshold for pressure.

The Bowen Technique, developed by Dr JoAnne Whitaker, is similar in principle to acupuncture. It is a type of gentle massage designed to unblock energy and help the body maintain equilibrium so that healing can take place. Many people struggling with Fibromyalgia and CFS/ME report that this technique has accelerated their healing. (Incidentally, Dr Whitaker is one of the experts I interviewed for the LDRD Interviews with Experts series.)

2 - Maintain a regular schedule. Go to bed and rise at the same time every night and day. Even on the weekends. This is a good health-habit to cultivate even for people who aren't sick. Former surgeon Dr Christine Horner, author of Waking the Warrior Goddess: Harnessing the Power of Nature & Natural Medicines to Achieve Extraordinary Health, which received the “Best Book of the Year” for 2005 award from the Independent Book Publishers association in the category of health, medicine and nutrition, strongly believes in the body's innate ability to heal from any disease. Dr Horner recommends going to bed no later than 10 pm and rising at 6 am each day. (Note: LDRD members, please read the transcript of my interview with her, or listen to the audio version.)

Keeping a regular sleeping schedule helps your body to regulate its other autonomic functions, eating and making bowel movements. All of this can lead to more effective healing therapy. In addition, I'm a big fan of afternoon snoozing, and I usually get in about 20 minutes to one hour, daily. I'm convinced that my napping habit saved me during the worst of my illness. However, if you struggle with insomnia, you might get better results at night by limiting your naptime during the day.

3 - Allow yourself time to wind down before bedtime. This is a personal challenge for me. I'm either online with work or friends, or deep in conversation with my favorite person in the world, my partner Evan. I'm also a natural night owl, so if you are too, I'm sure you can relate. It can be tough to find the discipline to slow down at night, especially if you aren't in the thick of the disease and your mind is back to working order.

Cultivating a meditation practice, simply using breathing techniques from your yoga class, or relaxing in bed with an inspiring book can do wonders. Don't exercise for up to three hours before bedtime. Avoid stimulating drinks--especially during the afternoon and evening. No alcohol. Take a warm bath, and listen to soothing music. Let your loved ones know that they can help by gently rubbing your shoulders or neck. Stretching your arms and legs slowly and methodically before you get into bed can signal your body that it's time to drop off into dreamland.

Making your own herbal tonics

Lyme Disease Research Database — 2009-09-23T17:03:45-04:00

Like any serious disease, Lyme has gifts hidden in its pockets.

For me, Lyme's gift has been its power to teach. I've often thought that since dealing with this pernicious disease, I've learned more about my own particular healing patterns than I ever wanted to know. I doubt if I would have learned so much about keeping myself healthy if I hadn't gotten so sick in the first place.

Since Lyme has become my teacher, I've gotten really interested in making my own tinctures and teas. If this is something you're into as well, I recommend watching the short videos on Youtube by mountainroseherbs.com. These instructional videos are clear presentations that can help take the mystery out of the process. By making your own herbal concoctions you can save money as well.

And while we're on the subject, please check out this recipe for arthritis massage oils by author and master herbalist Stephen Harrod Buhner. In addition, see herbalist Leslie Tierra's wonderful massage oil recipes here.

ILADS training new Lyme docs Oct 24-25

Lyme Disease Research Database — 2009-09-20T15:04:49-04:00

Is your doctor Lyme literate? If not, suggest they get educated by the world's top physicians and researchers. Please tell them about this important upcoming gathering.

The annual 2009 Lyme Disease Professional Conference will be held on October 24 - 25 at the Gaylord National Resort in Washington, DC. The conference is an opportunity for Lyme-educated doctors and scientists to train the next generation of medical professionals interested in helping to improve the quality of care for people with Lyme.

ILADS recognizes that the growing numbers of people suffering with Lyme and other tick-borne related diseases can be helped immensely by educating health care professionals in every field. Last year's San Francisco conference was hugely successful, and this fall's lineup promises to be even better.

ILADS president, Dr Daniel Cameron, writes, "This ILADS conference also provides a forum for researchers to present their results in the emerging topic workshops setting or in the research workshop. Together the conference will provide the basis for the evidence-based treatment of Lyme disease."

Write lymedocs@aol.com or call 301 263 1080 if you have any questions.

Dr Burrascano's Lyme treatment guidelines

Lyme Disease Research Database — 2009-09-08T16:10:50-04:00

Looking for diagnostic hints and treatment guidelines? I want to call your attention to Dr Burrascano's Treatment Guidelines. Click on this link:

Advanced Topics in Lyme Disease

If you're struggling with Lyme, this no-nonsense PDF will give you a reference and perhaps even a place to start. Among other things, you'll find a list of supplements that may be very helpful, along with a reminder to exercise if at all possible. Gentle strength training is necessary to rebuild your muscles and help restore your energy level. In addition, exercise can raise the core body temperature and oxygenate the blood. The Lyme bacteria may be a tough bug to kill, but two things that can do the job for sure are heat and oxygen.

Dr Burrascano writes:

Despite antibiotic treatments, patients will NOT return to normal unless they exercise! This is because in most cases the chronic Lyme patient is deconditioned. More importantly, a properly executed exercise program becomes part of the treatment, as it can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.

What to eat on the weekend

Lyme Disease Research Database — 2009-09-05T13:40:01-04:00

I hope you're feeling well enough to join the fun this Labor Day weekend.

When everyone else reaches for chips & dip, reach into your picnic basket instead for these yummy snacks recommended for people on an anti-inflammatory diet:

Celery and carrot sticks, or radishes with hummus. Raw veggies are better for you at room temperature, and not cold straight from the fridge.
For a delicious protein snack, spread tahini or almond butter on rice crackers.

For breakfast, cook steel cut oatmeal. A generous dollop of coconut oil keeps it from sticking to the pan, and imparts a delicate sweetness to the oats. Try fresh spinach in the morning along with scrambled eggs. Greens are fresh and tasty, and will satisfy without giving you that over-stuffed feeling.

For lunch or dinner, soup and sandwiches are quick and casual.

Rye bread can be a tasty substitute for wheat bread, but read the ingredients to make sure there is no wheat flour. Good sandwich fixings include sliced turkey (or tofurky, my fave), avocado, tomato, ground mustard and goat cheese or feta. Feta is reportedly much easier to digest than cow cheeses. Add fresh chopped greens from your garden, or layer on the sprouts - use mung bean for a delectable crunchiness, clover, or broccoli sprouts.

If you're a soup nut like me, make a delicate butternut squash soup, or a fragrant tomato bisque. Fresh corn soup is also delicious paired with a spinach, beet, walnut and goat cheese salad.

Mexican food is fast and festive. Make fish tostadas, using tilapia or salmon, piled onto corn tortillas, with dark green leafy lettuce, ripe slices of tomato, black beans, fresh salsa and guacamole, if you like.

Lyme sufferers in need of help

Lyme Disease Research Database — 2009-09-02T14:33:30-04:00

I receive heartrending letters like these every week. Lymenet.org has a good forum, and I have urged these two to go there. If you have some sound advice for these predicaments, we welcome supportive comments.

Note: If you have thoughts of suicide, please call the Lyme Disease Hotline: 1-800-886-LYME (1-800-886-5963)

Hi,
My husband has Lyme disease, and we have health insurance with Blue cross/Blue shield through my job. My husband has been on IV for the past 3 months & is just starting to show some recovery. Now yesterday, 9/1/09, insurance says it will no longer pay, because this treatment is called "experimental IV". Has anyone else had this problem, if so what did you do? I am at a loss.

Hello,
I know I have Lyme, I was bit by a tick at age 4, and I am now 40. It has affected my brain, I have no sense of direction, I cannot remember anything anymore. My left arm feels like it has been cut off at my wrist making if difficult because I am left handed. I have boils on my face the size of golf balls, I can't go into public which being in sales isn't possible so I lost my job. The doctor has tested me for everything under the sun and I told him to test for Lyme. He did a IgG/ImG, something like that, and the blood test came back negative, so he said I do not have Lyme. I can't get out of bed. I now am having problems walking because of my left hip. Several years ago I was semi-diagnosed with MS because I had a case of Bell's Palsy. The tick that bit me in Maryland wasn't found for over 2 days. I was severely ill. My insurance has been canceled and I am losing control. I don't know what to do anymore. I have been thinking suicidal thoughts and am very scared. Please if someone could give me some advice on what to do next. I need some guidance in a really bad way.

Lymelife filmmaker turns pain into art

Lyme Disease Research Database — 2009-08-28T14:40:47-04:00

Actor, writer, producer, editor and composer Steven Martini's latest film is Lymelife. As one reviewer wrote, "Lymelife is a unique take on the dangers of the American Dream."

Steven and his brother Derick learned the craft of filmmaking while making Goat on Fire and Smiling Fish (1999), and wanted to "dig deeper" for their next film. The material they mined for Lymelife is largely autobiographical. Taking place in the late 70s, the story chronicles their childhood in the NE, a first searing adolescent love affair, and the dissolution of their family unit. Scott, 15, begins to see that nothing is quite like he thought it was.

In the story, Scott's girlfriend's father, Charlie, is inflicted with Lyme. In real life, Steven's girlfriend's father had Lyme as well. He watched her family try to deal with illness and found it terrifying. As Steven says, Lyme back then was considered mysterious, even psychosomatic. Sound familiar?

I got a chance to speak with Steven last week. He described the intensity of writing and producing this autobiographical tale. He talks about his creative process and his experience of making the film, and even tells what became of the real life character of Charlie.

Please listen to our conversation by clicking on the Podcast link below.
Podcast

Ted Kennedy dies. Will insurance reform survive?

Lyme Disease Research Database — 2009-08-26T17:10:18-04:00

Health insurance in the US is in the floodlights, especially with the news of Senator Ted Kennedy's passing. He carried the issue of health care insurance reform over the course of his long career in congress. Speaking up once again for this issue was, he said, his primary reason for fighting his illness last year. How will his passing affect the fierce fight for change?

Health care reform may end with passing of its torchbearer: Ted Kennedy
by Bob Graham, Insurance & Financial Advisor

From the article: Congress needs a Ted Kennedy to pull things together in the fall. Kennedy had the ability to cross aisles, to get Republicans and Democrats to join forces on key reform efforts. No one else had the power of Ted Kennedy to get Congress to act on these big-ticket items like No Child Left Behind, the American with Disabilities Act, voters and civil rights legislation, and the Children’s Health Insurance Program.

Please share your thoughts on health insurance reform, as it relates to your experience with Lyme disease.

Listen to Tina Garcia's experience at the IDSA hearing

Lyme Disease Research Database — 2009-08-21T11:30:59-04:00

Patient advocate Tina Garcia is passionate about justice and fairness.

Disabled by Lyme in 2004, she soon discovered the injustices in Lyme treatment. Particularly, she was outraged to learn that patients in her position were frequently turned down for medical insurance coverage for the treatment of Lyme disease. Her own insurance requests for coverage were rejected as well, and like so many Lyme patients she had to pay for treatment out of pocket.

When Connecticut Attorney General Richard Blumenthal began the investigation into the IDSA standard of Lyme treatment, Tina submitted her rejected insurance claims to his office. However, her concern wasn't simply about her own welfare. Desire to help others inspired her to found the organization, LEAP Arizona, a Lyme Education Awareness Program. She began a dialog with the Assistant AG, which lead to her invitation to testify on July 30 at the historical IDSA hearing in Washington, DC.

Tina, who is still healing from Lyme, traveled to DC where she delivered her eloquent testimony to the hearing panel. On her website, you will find a link to listen to the IDSA hearing, and a copy of her testimony.

Tina spoke with me on Thursday, August 20, about her experience at the hearing. She describes the day's emotional highlights, in particular the presentations of Drs Ken Liegner and Steven Phillips. She also talks about her faith in the IDSA panel, who, in a matter of months, will be deciding whether or not to recommend changing the standard Lyme protocol.

I invite you to listen to our conversation by clicking on the podcast link.
Podcast

Anti-inflammatory diet for Lyme

Lyme Disease Research Database — 2009-08-17T12:26:17-04:00

I've been under the impression that medical practitioners, such as GP doctors and nutritionists, were familiar with the notion that inflammation is at the core of many diseases. However, it looks like the study of inflammation, and what to do about it, is newer than I thought. According to an Aug 17, 2009 article in the LA Times, Battling inflammation, disease through food, by Shara Yurkiewicz, medical practitioners are just beginning to put two and two together when it comes to inflammation and chronic disease.

"[Chronic inflammation] is an emerging field," says Dr. David Heber, a UCLA professor of medicine and director of the university's Center for Human Nutrition. "It's a new concept for medicine."

The article continues: "The theory goes that long after the invading bacteria or viruses from some infection [such as Lyme bacteria] are gone, the body's defenses remain active. The activated immune cells and hormones then turn on the body itself, damaging tissues. The process continues indefinitely, occurring at low enough levels that a person doesn't feel pain or realize anything is wrong. Years later, proponents say, the damage contributes to illnesses such as heart disease, neurological disorders like Alzheimer's disease or cancer." LA Times article, 8/16/09

When you get a splinter, or a mosquito bite, or suffer an injury such as a broken bone, your body's immune system instantly responds to the pain and offense by sending more blood to the wounded area. The tissue swells and reddens while the healing work gets underway. While it's fairly easy to see a mosquito bite or detect a broken bone, chronic silent inflammation inside the body, which is what Lyme disease may cause, may go unnoticed for years because, as the article states, it occurs at a low level and doesn't hurt. The immune system doesn't switch off.

What can be done? Although more studies are necessary to determine the results scientifically, many people (including me) believe that their eating habits affect their health and can even help bring down chronic inflammation. Choosing foods rich in antioxidants is probably smart, and may even help you feel better while healing from Lyme infection. Antioxidants may slow down or inhibit the tissue damage caused by free radicals at the sites of inflammation.

The Mediterranean diet, for example, is high in antioxidants, including dark green leafy veggies, whole grains such as steel cut oats, nuts, oily fish such as salmon, and bright-colored fruits such as blueberries, pomegranates, dark cherries and raspberries.

Following an anti-inflammatory diet also means eliminating, or at least reducing food that can cause inflammation. Such foods include those with saturated fats, trans fats, corn and soybean oil, refined carbohydrates such as white sugars, red meat and dairy.

Neem oil and ticks

Lyme Disease Research Database — 2009-08-15T12:36:29-04:00

Q: Will neem oil spray kill the ticks on my dog?

A: No, it's not likely. Mature ticks are not usually affected by neem. However, neem oil has been reported to cause female ticks to lay sterile eggs. In addition, neem oil repels ticks. Use it to reduce Sparky's chances of being bitten in the future. Regularly grooming, shampooing and then spraying your dog with neem oil may greatly improve the problem of ticks.

Clean and spray your pet's bedding with neem oil too. Protecting you and your family from tick bites means thinking about all the opportunities the little critters have to encroach on your living space. Clean and spray all the spaces where your pets hang out.

Think of this as a long-term solution, however, and not an immediate fix. Be wary of ads that promise results. Neem oil has been shown to be effective only with certain types of ticks, and cattle and other livestock have been tested more than dogs and cats.

Dogs and kitties (parrots and ferrets) add immeasurable love to our lives. Unavoidably, we take our chances with the dangers they may carry when they run freely outdoors and in, sleep in our beds and lounge on our sofas. Keep an eye on your outdoor pet, making regular tick checks a part of routine grooming. If you've found ticks on your pet, please take them to see your vet right away. Our cats and dogs are vulnerable to Lyme and related tick-borne diseases. The vets I've consulted with say there is often a good chance for recovery, especially if the animal is treated with antibiotics as soon after infection as possible.

Educate yourself about ticks

Lyme Disease Research Database — 2009-08-08T14:58:54-04:00

Summertime is so inviting, the trails around my house are shady, green and cool. Summer is also time to pay close attention to the small dangers in the woods and grassy fields. If you hike, camp or hang out in the great outdoors, or know anyone who does, please pass on to this information about ticks and tick-borne diseases.

Everything you always wanted to know about ticks (but were too chicken to ask) is included in this handbook, the new revised edition prepared by Kirby C. Stafford III, PhD Vice Director, Chief Entomologist of the Connecticut Agricultural Experiment Station in New Haven. It's an 84-page booklet that you can download as a PDF.

Tick Management Handbook

Clashing views at the IDSA hearing

Lyme Disease Research Database — 2009-08-01T13:44:17-04:00

Thursday's day-long IDSA hearing in Washington DC offered a fascinating glimpse into the opposing perspectives on Lyme disease treatment. Scattered into the testimony were flashes of tension and emotion. If you crave power point presentations, it was right up your alley. It was also an exercise in stamina for the participants. The entire hearing will be archived online for one year at idsociety.org.

As the hearing proceeded, I was most interested in the tension developing between the presenters' testimonies. For example, Eugene Shapiro, MD, a Lyme disease specialist at Yale University, stated that he thinks it is very important to engage in additional research about how to help persons suffering from medically unexplained symptoms. He also stated that in his view, there is "no scientific justification for changing current IDSA recommendations related to duration of antibiotic treatment of Lyme disease."

Then came Brian Fallon, MD, of Columbia Medical School. Notably, Dr Fallon began his presentation by stating that he is not a member of either IDSA or ILADS. He's a psychiatrist belonging to the American Psychiatric Association. In direct opposition to Dr Shapiro's statement, Dr Fallon referred to a blind study in which repeated antibiotic treatment has been found to be effective, yet is not recommended due to the risks. He also made it clear that repeated antibotics have been shown to be effective for the fatigue associated with Lyme disease. However, not for pain or any of the other symptoms related to Lyme.

Dr Fallon suggested that doctors could approach this risk factor by talking to patients about the risks. Discussing the risks of medications is something, he says, doctors do every day. He also mentioned that the testing has only been done on two specific antibiotics, and added that it might be a mistake to make recommendations based on those tests about antibiotics in general.

The most emotional moment of the hearing (that I saw) occurred when Dr Ken Liegner, ILADS member, showed a video clip of his patient Vicki Logan from June 22, 2001. Vicki had sought all kinds of treatment, according to Dr Liegner, in trying to deal with what he reminded the panel is still to be considered a "formidable pathogen." As the result of a misdiagnoses, she had been given coricosteroids early in her treatment. After all her treatment, spirochetes were found in her pericardium (the thin membrane that surrounds the heart).

The video was evidently recorded as Vicki lay dying in a hospital bed. She is so weak with advanced Lyme disease that you can barely make out the words as she says, "I hope that what happened to me will benefit others who wind up in the same situation." She also had words of praise for Dr Liegner, telling him on-camera that without his help she wouldn't even have lived as long as she did. It was a tearful moment for me.

I'm curious about your opinion. Does your doctor (or doctors) talk to you about the risks involved in the treatment options for Lyme disease?

IDSA hearing - message from Tina Garcia of L.E.A.P.

Lyme Disease Research Database — 2009-07-29T18:13:31-04:00

On the eve of the hearing in DC, patient advocate and panel member Tina Garcia sends us this message. I will be interviewing Tina very soon, so watch this blog - it will be posted for free to anyone who wants to hear directly from her what the hearing was like. Please feel free to forward the following note to any other Lyme groups who might be interested:

I just wanted to send out a huge thank you to all on Eurolyme and other groups who have shown me so much support! I am here in DC anxious to attend the Hearing!

I thought I'd write to let everyone know that the lime green ribbon campaign is being done in conjunction with media coverage of the Hearing and it is not a demonstration of any sort.

It is a way to get more media attention at the Marriott across from the Ronald Reagan Building, where the Hearing will be held. I am here and watching it all unfold and I assure you that it is an awareness campaign and not a demonstration. It is defintely not a campaign that will negatively effect the Hearing or offend the Review Panel in any way.

This is a very critical moment for the Lyme community, patients and docs. I would ask everyone to please focus strongly on the bond that we all share in this community and muster all the strength and courage we can to unite as a community. We must rise above the disagreements and conflicts that occur between advocacy groups and form a cohesive community of patients and doctors.

We must not allow our actions to be dictated by reactions to efforts that might make us stray from the path we are on. Let's unite and work together, for there is strength in numbers. United we stand -- divided we fall. We can stll hold on to the uniqueness of each of our advocacy groups, but at this crucial hour, we must be willing to work together and appreciate each other's uniqueness and admire each other's strengths and efforts to make a difference for all.

PLEASE FORWARD THIS TO ALL GROUPS AND LISTS AND DISCUSSIONS ASAP.
I AM PRESSED FOR TIME, SO IF YOU CAN ALL FORWARD THIS MESSAGE FAR AND WIDE, I WOULD TRULY APPRECIATE IT! THANK YOU!

In Solidarity,

Tina J. Garcia
Lyme Education Awareness Program
L.E.A.P. Arizona
www.leaparizona. com
P.O. Box 2654
Mesa, Arizona USA
480-219-6869 Phone
480-830-2788 Fax

Interview with the extraordinary Dr Jones

Lyme Disease Research Database — 2009-07-28T13:40:27-04:00

Dr Charles Ray Jones is a man with three ordinary names - yet he couldn't be any more extraordinary in his service to chronically ill patients.

To quote Sandy Berenbaum's introduction at a 2008 University of New Haven celebration to honor Dr Jones, a colleague of his has observed that he is "an international treasure - a courageous, selfless, inspirational, and outstandingly gifted clinician who has helped thousands of the most severely ill children with Lyme disease from around the world to regain their health and their lives."

Dr Jones spoke with me about Connecticut Governor Rell's recent decision to allow doctors to treat Lyme disease, the significance of this week's IDSA hearing in Washington, DC, and about the future of Lyme disease treatment.

Listen to the free Podcast of the interview with Dr Charles Ray Jones.

Watch the IDSA hearing live online

Lyme Disease Research Database — 2009-07-26T16:52:40-04:00

If you have ever had trouble getting treated for Lyme disease, or you are interested in long-term antibiotic treatment of Lyme, you probably already know about this Thursday's hearing. If you don't, then you may want to tune in.

The long-awaited IDSA hearing on Lyme treatment is finally happening, Thursday, July 30, '09. You can follow the entire broadcast live online.

Panel member Raphael Stricker, MD, an ILADS physician, is one of the doctors included in our experts interview series. Several of the healthy Lyme survivors included in our Success Stories series have included his patients. Tune in to listen to what Dr Stricker has to say.

We plan to interview many more members of the panel soon, starting with Tina Garcia, a dedicated Lyme patient advocate.

Click the link below for important information about the IDSA hearing:
http://www.idsociety.org/WorkArea/showcontent.aspx?id=14974

Eat your (fresh organic) veggies!

Lyme Disease Research Database — 2009-07-24T21:10:50-04:00

Summertime means fresh, organic veggies and fruits. I'm a sprouts fanatic. They're easy to eat and digest. I've always liked them, but even more so since I've been fighting Lyme. Sprouts are just so delicious and appealing.

On a sunny day it's nice to come home from the grocery store or farmer's market and toss together a mouth-watering salad of greens. You might add in fresh ripe tomatoes, peas, shredded carrots and/or beets, and top it with a handful of broccoli or clover sprouts and drizzle on your favorite dressing. I like to crumble bits of organic goat cheese on top too. Raw foods can be beautiful to behold, and so full of zest and prana. The nicest part is that afterwards, you don't feel sluggish. Just clean and energized.

Fresh, raw food diets have been used with success to ease the pain of many chronic diseases. But your body must be at a stage where eating raw foods can help boost your vitality, and not simply give it more work to do. During an acute stage of Lyme disease, raw foods may be too harsh to digest. Before you become a raw foodie, talk with your Lyme doc. If possible, consult a nutritionist who is educated about Lyme disease.

During early or acute stages of Lyme disease, your body might not be able to handle many raw foods. However, since raw veggies are rich in enzymes, they can be very beneficial in later stages of Lyme.

Sprouts, though, are a helpful food to eat during any stage of Lyme. You don't even have to go to the store or the market for these - grow your own!

Given the right conditions, teeny-weeny vegetable seeds grow into flavorful veggies. Sprouted broccoli, clover and radish seeds can contain many times the nutrients of the mature vegetable. Broccoli sprouts are one of my favorites because they contain sulforaphane, a long-lasting antioxidant that has powerful anti-bacterial qualities.

Going raw is a personal choice, up to you and your doctors. You can always add more leafy green vegetables to your diet without going totally raw.

Veggies with sulforaphane:

Bok choy
Brussels sprouts
Cabbage
Cauliflower
Collard greens
Kale
Kohlrabi
Mustard greens
Turnips
Radish
Watercress

Find a Lyme doctor near you

Lyme Disease Research Database — 2009-07-21T14:34:19-04:00

Q: What should I do? I've had Lyme disease symptoms, but the time for early treatment has elapsed.

A: Contact a Lyme literate medical doctor near you. Please go to the Lyme Disease Association doctor referrals page.

Once you're on the LDA website, click on the link for "doctor referrals." Register using your email address. Once you've done so, follow the simple directions to find a doctor near you. The process doesn't take long and the directions are easy to follow. If you need a Lyme doctor, I urge you to find one as soon as possible.

You'll be asked whether you'd prefer a doctor who belongs to the International Lyme and Associated Diseases Society (ILADS). Keep in mind that Infectious disease doctors (IDSA) may not have the knowledge it takes to treat Lyme disease, especially when it has gone beyond the early stages. Infectious disease doctors may also lack the experience that ILADS specialists can offer in diagnosing and treating Lyme.

ILADS member and Registered Nurse, Ginger Savely, has diagnosed and treated over one thousand patients with Lyme symptoms. She is confident that with treatment, you can recover from Lyme disease.

Many experts agree that if Lyme is left untreated, or if it goes under-treated, the disease can be debilitating and even cause serious threats to health and well-being.

If you need help, please use the link above to find a doctor who knows how to diagnose and treat Lyme now.

And meantime, please take advantage of the work we've been doing over the past few years, collecting Lyme Success Stories. Listen to the Success Stories here on our website. Many of them are available for free. All we ask is that you sign up for our newsletter in order to hear them. LDRD members, who help make our work here possible, have access to many more stories, and we're adding new ones all the time. These people are so strong and enthusiastic, I love listening to them. They hail from all walks of life -- young, not-so-young, men, women and children. They will help you find the inner strength and confidence you need at this point. Some of them have specific information about how they healed from Lyme. They talk about how they found their Lyme doctors, they tell which medicines they took, and some describe their nutritional plans, exercise routines, and more.

When we're sick, we need encouragement. We need to hear from other people who've been down the same road. Nurse Ginger Savely told me, during our interview, that she fully believes that people can get better, when given the right treatment, even if they've suffered with Lyme symptoms for many, many years. She sees it happening every day in her San Francisco clinic.

"My year in HELL"

Lyme Disease Research Database — 2009-07-20T12:40:20-04:00

It's Friday, and I wanted to share this with you all. One our readers, Kim Jones, gave us permission to post this happy note. If you're sick, take heart and know that there are many, many people who are beating Lyme:

It has been a year since a nasty little tick gave me the disease from HELL. But I am back among the living. And living well. Feeling better than ever! Something I did not think was possible a year ago. Some days were so hopeless and I was too tired to read in bed or walk down my driveway to get the mail let alone work or go out with friends.

I dreaded the full moon and nights of restless sleep and days of endless exhaustion. The joint pain was incredible and I could not think through the brain fog to function in any normal sort of way. I will forever look back on May 2008 as the beginning of my year in HELL.

Nevermind the swirl of doctors and pills and tests that we have all gone through and the endless researching and reading to find an answer. I absolutely was consumed with finding a cure - I was not going to let this ruin my life. I was absolutely glued to my computer screen searching every LD site I could find.

Then later, when Under Our Skin came out (I bought an advance copy), I watched it over and over while I cried seemingly endless tears. But I refused to allow this to happen to me. Mine is a story of strength and perserverance and just plain stubborness on my part. Even from the beginning I made my mind up that this THING was NOT going to get me. I was going to beat it.

And I have beat it. Thanks to self-determination, excellent nutrition, LOTS of exercise, and meditative positive thinking. Also, with support from my husband and an excellent local LPN, the only one in the medical community who would listen and help me with meds and support, and a team of online supporters.

I have WON this battle. I am symptom free now for over 3 months. No meds, no brain fog, no fatigue, no rash, nothing. I really am free of this dreaded disease. I now have my life back - whoooooooppppppeeeee!

Speak up for Lyme survey

Lyme Disease Research Database — 2009-07-20T12:39:42-04:00

Patient survey

Patient advocate Lorraine Johnson, JD, MBA, of the California Lyme Disease Association (CALDA) will be testifying before the IDSA review panel on July 30. This survey, which takes about 5 minutes to complete, will be used to support her speech. Your identity will remain anonymous.

Lorraine writes:
You can get more information on what is happening with the hearing by visiting the CALDA website at www.lymedisease.org and visiting my blog there by clicking news and blogs and then Lyme Policy Wonk. You can also visit my blog by going to www.lymepolicywonk.org.

Please support the good work that CALDA does by becoming a member and helping us advocate for Lyme patient rights.

If you wish, you can watch the July 30 hearing live on the internet at the IDSA website (idsociety.org).

Dr Charles Ray Jones: upcoming interview

Lyme Disease Research Database — 2009-07-20T12:38:56-04:00

Coming soon: a very special interview with renowned Lyme expert Dr Charles Jones of Connecticut. Dr Jones celebrated his 80th birthday last month, and he continues to treat chronically ill patients. His life and work is a testament to caring and courage.

Here are a couple of links to help you read up on Dr Jones:

Dr Charles Ray Jones homepage
The State of Connecticut vs. Dr Charles Ray Jones - A Hangin' In Hartford - article by Rick Vassar, April 17, 2007

Please note: This interview will be posted for free access to everyone - not just LDRD members. As always, we thank our members for your support, which enables us to keep conducting and posting these interviews.

IDSA submits letter to Waxman

Lyme Disease Research Database — 2009-07-08T17:17:31-04:00

Things are heating up in Washington DC as the July 30 hearing approaches.

Below is an excerpt from a letter written on June 25, 2009 and sent by the IDSA to US Representative Henry Waxman, Chairman of the House Energy & Commerce Committee. In it, the IDSA makes clear that it opposes the bill regarding Lyme disease treatment (H.R. 1179), which was recently reintroduced in the House of Representatives.

Here is a partial excerpt:
We believe it is important that Members of Congress who are considering co-sponsorship of H.R. 1179 be fully apprised of IDSA’s view, which is aligned with the broader medical and scientific communities’ view, that the long-term use of antibiotics for the treatment of Lyme disease is unproven and potentially harmful to the patients being treated and to the public’s health (due to the potential creation of drug-resistant organisms).

Further, it is IDSA’s position that no reliable evidence exists that supports the designation of Lyme disease as a chronic disease. Two recent reviews -- one published in the New England Journal of Medicine (N Engl J Med 357:14; October 4, 2007) and the other in the American Journal of Medicine (2008) 121, 562-564 -- give evidence-based assessments of Lyme disease diagnoses and the recommended treatments which substantiate our position.

Where are the articles on Lyme disease?

Lyme Disease Research Database — 2009-07-06T16:13:42-04:00

Dr David L Katz, a medical doctor and blogger for Prevention Magazine, wrote this reductive "preview" of Under Our Skin last year. On the Prevention site, I posted my response to his claim that there is no such thing as chronic Lyme. In his article, Dr Katz admits that he hadn't yet the movie, yet he already had strong opinions about it. I went searching for his post this morning, but it has since been removed. There is very little trace of Lyme disease mentioned in his health blog. I am not singling out Dr Katz for criticism here. However, I find it curious that a popular magazine on integrative medicine doesn't seem to be concerned with Lyme disease anymore.

Here is an excerpt of his 4/25/2008 blog post, which he titled "From the (sub)Lyme to the ridiculous":

A Yale colleague and leading authority on Lyme Disease, Dr. Durland Fish, brought to my attention a documentary film, to be shown at the Tribeca Film Festival in New York, highlighting the devastation wrought by chronic Lyme infection.

The only problem with that is...there is no such thing.

The best available science indicates that chronic infection with Lyme does not occur. There certainly can be, and are, chronic symptoms after Lyme infection- but that is very different from chronic infection. Consider, for instance, that after a bout of polio, some people have a permanent disability. That does not mean they are permanently infected with poliomyelitis- we know for a fact they are not.

There is, unfortunately, a cottage industry in treating "chronic Lyme." That treatment often involves lengthy courses of antibiotics, long after evidence of active infection is gone. Some clinicians are probably engaged in this practice in a genuine, if apparently misguided, effort to help. Others- a far more serious transgression- may be exploiting patient desperation for profit.

As far as I can tell, the documentary on chronic Lyme will be in equal parts compelling, and misleading. The terrible plight of the patients profiled will, and should, tug at your heart strings. But the implication that these are cases of chronic Lyme infection is at odds with the scientific evidence.

Here is my response:

Unfortunately, the vast and often seemingly disconnected array of symptoms, which can include rheumatoid arthritis, arrhythmia, memory loss and crushing fatigue, often lead patients from specialist to specialist, who never choose to investigate whether an underlying bacteria, treatable with antibiotics, could be at the root of their patients' problems. These clinicians could as well be "exploiting patient desperation for profit." Countless people have been misdiagnosed and under-diagnosed with Lyme disease, subscribed medicines that replicate the Lyme bacteria, causing the patient further, and even permanent, harm.

Comparison of the Lyme bacteria, Borrelia burgdorferi, with poliomyelitis proves very little. The spirochetal bacteria that causes Lyme disease is able to evade the body's immune system, and it is scientifically well-documented that tests for Lyme infection are often inaccurate.

Perhaps a "cottage industry," as you call it, has developed for a good reason. People are suffering. Many doctors are unwilling to consider Lyme infection as a cause of their pain. Numerous medical researchers and physicians recognize that gaps exist in our current understanding of the Lyme bacteria. More scientific studies and more medical research is necessary.

IDSA announces presenters for hearing

Lyme Disease Research Database — 2009-06-29T11:07:46-04:00

IDSA Announces presenters for its July 30, 2009 Hearing of the Lyme Disease Review Panel
Posted June 22, 2009 on the IDSA website

On July 30, 2009 (8:00 AM – 5:00 PM EASTERN), IDSA will hold an all-day hearing of its Lyme Disease Review Panel to hear testimony from patients, physicians and scientists on its 2006 Lyme Disease Guidelines. Individuals presenting and the order in which they will present follows:

* Tina Garcia, Lyme Education Awareness Program Arizona (L.E.A.P. Arizona, Inc.), Mesa, Arizona
* Lorraine Johnson, California Lyme Disease Association (CALDA), Ukiah, California
* Daniel Cameron, MD, International Lyme and Assoiciated Diseases Society (ILADS), California
* Phillip Baker, PhD, American Lyme Disease Foundation (ALDF), Bethesda, MD
* Ben Luft, MD, The State University of New York, Stony Brook, NY
* Allison Delong, ILADS, Providence, RI
* Barbara Johnson, PhD, Centers for Disease Control and Prevention, Fort Collins, CO
* David Volkman, MD, Nissequogue, NY
* Sam Donta, MD, Falmouth, MA
* Eugene Shapiro, MD, IDSA & Yale University School of Medicine, New Haven CT
* Brian Fallon, MD, Columbia University Medical Center, New York, NY
* Sunil Sood, MD, Schneider Children's Hospital at North Shore, Manhasset, NY
* Ken Liegner, MD, ILADS, Armonk, NY
* Allen Steere, MD, Massachusetts General Hospital & Harvard Medical School, Boston, MA
* Steven Phillips, MD, ILADS, Wilton, CT
* Art Weinstein, MD, Washington Hospital Center, Washington, DC
* Raphael Stricker, MD, ILADS, San Francisco, CA
* Gary Wormser, MD, IDSA & New York Medical College, Valhalla, NY

In-person attendance at the hearing is by invitation only. However, the Hearing will be broadcast live, in real-time via webcast from the IDSA Website (www.idsociety.org/lymedisease.htm) and will be archived on the web for viewing at your convenience. Information on how to attend via webcast will be posted on the IDSA website no later than one week prior to the hearing.

Alternative Lyme treatments

Lyme Disease Research Database — 2009-06-28T11:32:35-04:00

A friend asked for some advice about her Lyme protocol. She doesn't want to take antibiotics and would like to attempt an all-natural Lyme protocol.

I reminded her that I don't give advice. I'm an editor, not a doctor, and besides, it seems to me that depending on what stage of the disease you have, the symptoms of Lyme and the specific quirks of our immune systems truly complicate the challenge. The more people I interview about their experience with Lyme and its co-infections, the more I find out that I don't know. You've heard that old saying about the moment you recognize that you don't know anything is the beginning of wisdom? It's like that.

Although many of the Lyme-aware doctors we've interviewed for the "Interviews with Experts" series prescribe antibiotics for Lyme disease treatment, many people dealing with this multistage illness have incorporated other protocols into their routine at one point or another. Herbal tinctures, nutritional supplements and oxygen therapy are good examples of alternative or additional treatments, and I've had reports of excellent results with various combinations of these. Rife therapy has reportedly helped a lot of Lyme patients as well.

I've written about Dr Lee Cowden's herbal protocol in a special issue about Lyme protocols in the Townsend Letter, and he's featured in our Experts series. I'm interested in hearing more about the results of Dr Richard Horowitz's protocol, because he incorporates some of the Cowden herbs, and we're looking forward to adding his voice to our series.

I told my friend that the best advice I could offer is to tune in to the experts, and also listen to a catalog of stories about people from all walks of life, rich and poor, old and young, who have battled the tiger and now live vital, post-Lyme lives. I believe everyone has something to teach us, and that everyone is at least partially right. It's our job to decipher what's right, and what works, for us on our individual healing journeys.

I have had profound results from Dr Cowden's protocol. However, when I was first diagnosed my doctor insisted that I take antibiotics, which I remained on for six months.

I'm moved by my friend's sincere quest to heal from Lyme without going the pharmaceutical route. So, I thought I'd post this question to you: Have you had significant and long-lasting results from purely herbal protocols, such as the treatments recommended by Dr Lee Cowden, or Herbalist Stephen Buhner?

Lyme docs OK'd to treat with long-term antibiotics

Lyme Disease Research Database — 2009-06-22T12:43:33-04:00

Governor signs bill, shielding doctors in treatment of Lyme disease

It's Monday, and I've got good news. Let's all acknowledge this nod of compassion in Lyme disease treatment and send thank you notes in support of this decision made by the governor of Connecticut.

The following is an excerpt of a June 21, 2009 article by Jack Sanders in the Ridgefield Press.com:

Governor M. Jodi Rell said Sunday she has signed a bill allowing doctors to prescribe long-term antibiotics in the treatment of persistent Lyme disease – outside of standard guidelines – without fear of sanctions from state health regulators if the patient’s clinical diagnosis of the tick-borne disease and treatment have been documented by a licensed physician.

“Doctors in Connecticut – the absolute epicenter of Lyme disease – can continue to do what is best for their patients suffering from this complex illness. I think most people know someone who has been infected,” Governor Rell said. “The bill also recognizes that Lyme disease patients must have the freedom to choose which remedy or regimen best meets their needs.”

House Bill 6200, which gained broad bipartisan support in the Legislature, was prompted by an ongoing debate in the medical community. Some health organizations have questioned the existence of chronic Lyme disease and the Infectious Diseases Society of America (IDSA) has cautioned against the long-term use of antibiotics. Some physicians were hesitant to treat patients outside the IDSA guidelines because of potential reprimands from medical boards and insurance companies.

“Doctors will have the right to use treatment guidelines based on their clinical experience and best medical judgment,” Governor Rell said. “This bill does not, however, shield any physician who provides substandard care.”

Lymelife

Lyme Disease Research Database — 2009-06-15T13:43:44-04:00

A ragged-looking deer roams through Charlie Bragg's backyard on densely forested Long Island. Charlie (superbly portrayed by Timothy Hutton) suffers from mysterious symptoms that prevent him from working, and torture him perhaps even as much as knowing his wife is dallying with her machismo boss.

It's the late 70s. Lyme disease is beginning to grab the attention of NE residents. Some of them observed a correlation between a tick-bite and a litany of disturbing symptoms ranging from rheumatoid arthritis to mental derangement. In Charlie's house, prescription bottles crowd the bedside table. He's taking penicillin, but we aren't clear how effective it is on his illness. Sometimes he seems almost normal, stringing up Christmas lights. Sometimes when he's alone, he writhes in pain.

He's not the same man I married, rants his desperate wife. His teenage daughter feels compassion, but she's powerless to help. Her own inner conflicts and the pulls and stabs of young adulthood are more than enough for her to handle. A hint of rot underlies the nice suburban constructs, which are coming to a head most visibly in the character of Charlie.

Some of Charlie's scenes made me shudder. As bad as Lyme disease is, and as frustrating as the controversies around it have become, at least we're not still living in the 1970s, when it was new. Some headway has been achieved since then.

Have you seen the movie? What do you think?

(Members, watch for my upcoming interview with Lymelife producer, writer and director, Steven Martini.)

Tell your Lyme story to Obama

Lyme Disease Research Database — 2009-06-09T12:58:28-04:00

We were asked to post the following message about telling our Lyme stories to President Obama:

One of our San Diego support group members has made contact with a Barack Obama volunteer who is also partly responsible for getting the movie UNDER OUR SKIN shown in San Diego. This is an excerpt from their email:

"Hearing your story yesterday when we talked, helped me to be even more inspired to bring the message of Lyme Disease and Health Care Reform to as many people will listen. I encourage you to help bring to light the plight of Lyme patients. This is a once in a lifetime moment when we can share our health care stories. The Obama administration is listening and they want to help. Please visit
http://my.barackobama.com/page/content/healthcarestory to share your story and take the time to encourage all Lyme suffers in your association to do the same and then forward this message on to more Lyme sufferers. The more Lyme stories received the more likely they will get recognition at the federal level. Lyme disease so poignantly illustrates all that is wrong with health care in America."

Regardless of your political opinions, this is an opportunity to get extensive media coverage about LYME Disease, which can only be a benefit to those currently suffering, and hopefully prevent the future suffering of others.

Effects of Cumanda & Samento in treatment of Lyme disease

Lyme Disease Research Database — 2009-06-03T13:10:46-04:00

This is a really useful report, especially for those of us who are using herbal therapies to complement antibiotic treatment. It is Dr Richard Horowitz's findings on his use of herbs, such as Samento and Cumanda, among others, in treating patients who have Lyme disease and co-infections.

Herbs, Hormones & Heavy Metals: A study of CAM therapies in the treatment of Chronic Lyme Disease.

This tidbit is from the opening of his paper. Gave me a chuckle:

The History of Medicine
• 2000 BC Here, eat this root
• 1000 AD That root is heathen. Here, say this prayer
• 1850 AD That prayer is superstition. Here, drink this potion.
• 1940 AD That potion is snake oil. Here, swallow this pill.
• 1985 AD That pill is ineffective. Here, take this antibiotic.
• 2007 AD That antibiotic does not work anymore. Here, eat this root.

Dr Richard Horowitz
4232 Albany Post Road
Hyde Park, NY 12538
845-229-8977

Chronic Lyme or not - Get educated

Lyme Disease Research Database — 2009-06-01T10:59:54-04:00

A national coalition of health care workers, policy makers and others, the Partnership to Fight Chronic Disease (PFCD), is attempting to educate Americans about the significance of the crisis in our current overall state of health.

The PFCD mission:

* The PFCD believes that rising rates of chronic health problems pose a significant and unsustainable burden on the U.S. health care system, and that the viability and strength of the system presently and in the future relies on a willingness to enact policies that help Americans better prevent and manage chronic illnesses.

The PFCD and the Centers for Disease Control (CDC) do not categorize Lyme as a chronic disease. Therefore, it seems unlikely that this organization will help Lyme patients who continue to suffer with Lyme symptoms even though they've already been treated according to the CDC guidelines--a 30-day course of antibiotics.

However, if you suffer with chronic Lyme you may be interested in these six "unhealthy truths" about chronic disease in the United States, which I copied from the PFCD website:

* Truth #1: Chronic diseases are the No. 1 cause of death and disability in the U.S.

* Truth #2: Treating patients with chronic diseases accounts for 75 percent of the nation's health care spending.

* Truth #3: Two-thirds of the increase in health care spending is due to increased prevalence of treated chronic disease.

* Truth #4: The doubling of obesity between 1987 and today accounts for 20 to 30 percent of the rise in health care spending.

* Truth #5: The vast majority of cases of chronic disease could be better prevented or managed.

* Truth #6: Many Americans are unaware of the extent to which chronic diseases could be better prevented or managed.

If you consider yourself ill with chronic Lyme disease, one "healthy truth" to embrace is to get better educated about how to manage your illness. I realize that it's the toughest job you can take on, especially while you're sick. Believe me, I know because I've been there. Although the status of "chronic" or "Post-Lyme Syndrome" may not be easily or quickly determined by the policy makers, your health is what counts here.

Get educated about ways to manage your health, such as eating foods that will nurture (organic greens and proteins), not harm you (refined sugar).

LDRD members, login to listen to Lyme experts.

Chronic Lyme disease is just a name

Lyme Disease Research Database — 2009-05-29T16:43:27-04:00

When I was very sick with chronic Lyme, the scariest thing was not the agonizing pain in my skin and muscles, not that my shin skin had deteriorated into raw meat, and not even that I had trouble walking and could barely talk without stammering.

The scariest thing, the thing that blew my mind was that the infectious disease doctor I turned to for help REFUSED to treat me for Lyme. I had tested positive, yet she stood there shaking her head, insisting that I must have MS instead. She basically blew off the positive Western Blot and ELISA tests.

The doctor breezily observed my skin rash, which had become so severe that I had developed a staph infection that put me in ER, and told me, "You are too late."

Huh? I couldn't think very clearly because of the brain fog, but this response just sounded utterly wrong to me. I was speechless.

She then dashed off a prescription for corticosteroids, which she said was my last hope. I took them, and the Lyme bacteria multiplied rapidly. Needless to say, my condition went from bad to worse.

I was in terrible shape when I staggered up to the window in her clinic and requested my medical files. My legs could barely hold me, and my hands and voice were just as shaky and weak. I had begun seeing a naturopath who advised me to retrieve my records from the ID doctor's office and take them with me. He treated me for Lyme with antibiotics and a host of supplements to support my liver, kidneys, my whole body. He also informed me as gently as he could that Prednisone, the steroids I'd been prescribed, are contra-indicated when the Lyme bacteria is underlying. I must have seemed to him like the walking zombie that I felt like. Looking back, I wonder if he ever thought that I was too late as well.

As it turned out, I was not "too late." I was at the wrong doctor. An ignorant doctor -- one who needs to be educated about Lyme and doesn't even know it. I got better. Lyme symptoms are still a part of my life, and I still watch my health like a hawk. It has been a lot of work, but I'm stubborn and lucky and willing to work hard. I have no doubt that today I'd be very ill, confined to a wheelchair and on permanent disability, if I had listened to that ID doctor. Instead, every day is a miracle. I've achieved some of my wildest dreams, and I share my life with friends and family who are more precious than gold.

Now, of course, I also realize that my story is unfortunately not unusual among people with Lyme.

People who get better, even if it's only 90% better, often turn their heads and never look back. Who can blame them? But I don't want to forget. If it could happen to me, it could happen to anyone I love, my brilliant nieces and nephews, my mother, my life partner, my favorite teachers. More people need to be educated about Lyme, and controversies over what to call it -- whether it's chronic Lyme disease (CDL), or Post Lyme Disease Syndrome (PLDS), stand in the way of the badly-needed education about Lyme. Stephanie, whom I interviewed last week for the LDRD Success Stories series, mentioned she had just completed her degree as a registered nurse one month before she discovered she had Lyme. In her years in medical school, not one course instructor had even mentioned it.

I hope that as more doctors are educated, more will recognize that Lyme is a multi-stage disease, like syphilis (over which there is no controversy), and the controversy over late-stage or chronic Lyme disease will fade. By whatever name you call it.

Add spice, reduce inflammation

Lyme Disease Research Database — 2009-05-27T14:13:43-04:00

Do you have an appropriate Lyme disease diet?

Low-grade or chronic inflammation accompanies a bacterial infection such as Lyme disease. Chronic fatigue and lethargy are produced when the body is busy fighting infection. Reducing inflammation is key in regaining vitality and healing. It's smart to include foods in your diet to help achieve those goals.

Help your body reduce damaging inflammation with the following:

* Eliminate refined sugar and processed foods
* Reduce stress in your daily life
* Get enough early morning sunshine

Add some spice to your life -- specifically, turmeric and ginger -- to help reduce inflammation. They are both part of the same family of plants.

Turmeric is used to lend mustard its yellow color. It is used frequently, though sparingly, in Indian food. The active substance, curcumin, is a powerful, yellow dye that will stain countertops and plastic food containers. It's also a well-known anti-inflammatory. Turmeric can be taken in capsule form or you can sprinkle it onto your food. I like it on my eggs for breakfast, or added to the stir-fry veggies we often cook for dinner. A general rule of thumb is to use about a teaspoonful or less in cooking. More than that will make your food taste bitter.

Ginger root is the underground stem of the ginger plant. The powder and the grated root are often used in cooking and baking. Ginger has medicinal qualities, and due to its anti-inflammatory element has long been used to aid in arthritis and ulcerative colitis. Among other uses, ginger is antibacterial, and effective as a digestive aid.

Nearly all of the people we've interviewed for our Lyme success stories have said that modifying their diet has improved their health significantly.

* What changes to your lifestyle and diet are helping you heal from Lyme?

Stephanie's Lyme Story

Lyme Disease Research Database — 2009-05-21T15:21:20-04:00

You would never detect disabling pain in Stephanie's calm, cheerful voice. She sounds energized and prepared to face the future, confident that the protocol she's on will help her fully recover from Lyme. Although she feels better now, the 39 year-old has endured many years of suffering and misdiagnoses, including two years when she was confined to bed. She had recently graduated as a registered nurse when she discovered that her mysterious symptoms indicated that she had Lyme.

Her course instructors in medical school "never even mentioned Lyme disease," she says. "You'd think they would know something."

Stephanie and her husband want to have a couple of kids, but wish to wait until she gets the all-clear signal from her Lyme doctor. The illness has been tough on the couple financially. She lost her medical coverage because she could not continue to work outside her home, and she estimates that their total out-of-pocket expenses have topped $100,000. As a newlywed when she first discovered how sick she was, she's definitely looking forward to leading a fuller life with her husband.

"He's still looking forward to the 'in health' part of the marriage vow," she laughs. "He's done the 'in sickness' part."

She is optimistic about the future, now that she has been in treatment for six months with Dr. Daniel J. Cameron, MD , of Mount Kisco, New York. Dr. Cameron is the current president of the International Lyme and Associated Diseases Society (ILADS).

Initially, doctors explained Stephanie's symptoms as being caused by a Brown Recluse spider. They told her that nothing could be done except bed rest. However, as she slowly began to put together the pieces of the Lyme puzzle, she eventually recognized that she had most of the classic Lyme symptoms, including rheumatoid arthritis and unbearable fatigue. Fortunately, her research led her to Dr. Cameron.

LDRD members, please log in to listen to Stephanie's story, and hear details of her antibiotic protocol and other supplements she has found helpful.

Reduce your chance of tick bite

Lyme Disease Research Database — 2009-05-20T11:12:42-04:00

Learn about tick bites.

• Avoid likely tick-infested areas such as wooded, bushy areas or places with high grass and leaf litter - especially from May through the fall, when ticks are most active.

• When in likely tick areas, wear insect repellent with 20 percent DEET or more.

• Light-colored clothing helps you spot ticks more easily. Also, wear long sleeves and pants, tucking your shirt into your pants and you pant legs into your shoes.

• Before going indoors, perform a tick check on yourself.

• If you find any, use a fine-tipped tweezer to remove. Grab the tick close to the skin, and do not twist or jerk.

Source: U.S. Centers for Disease Control and Prevention

MSNBC prints story of Lyme suicide

Lyme Disease Research Database — 2009-05-19T10:51:18-04:00

MSNBC has posted a heartrending story by NBC news producer John Baiata about the suicide of his beloved sister Sue, who could no longer bear the pain she suffered from chronic Lyme Disease. Our thanks goes out to the Baiata family and to MSNBC for sharing this painful story. I urge our readers to drop them an email thanking and supporting them for helping us bring this issue to the greater public.

I know I'm not the only one of us who was moved (to tears) also by the overwhelming number of intense responses to the story. Among them was a statement by Pat Smith, reminding readers that children are at the greatest risk for Lyme, and that a valuable bill in support of Lyme disease research is still mired in political muck. Here is a partial quote of her comment:

"Another Congressman, Christopher Smith (NJ), who introduced the bill, HR 1179, said last year on the floor of the House, regarding Lyme disease, there is a "cover-up.” We echo that 1000 times over. MSNBC, I hope you will put all the power and resources you possess behind exposing that cover-up soon, as children ages 5-9 and 10-14 are at the greatest risk of acquiring Lyme disease, and the prevailing attitude is allowing government agencies to remove children from mothers who are having them treated with ANTIBIOTICS for Lyme disease by LICENSED physicians.

Meanwhile, our heartfelt sympathy goes out to the Baiata family. Many of us have experienced preventable suffering and tragedy due to this disease. However, the tragedy is usually not due to Lyme disease itself but to politics, cover-up, vested interests, and bias, often a much bigger threat than the Borrelia burgdorferi organism causing Lyme disease, which we could overcome if the cover-up were exposed fully in the light of day."

- Quoted from MSNBC.com article by John Baiata, All she lost: My sister's battle with Lyme disease, from a comment made by Pat Smith, President, Lyme Disease Association

Salt and chronic Lyme

Lyme Disease Research Database — 2009-05-15T20:04:19-04:00

Are you getting enough salt in your diet? Salt is essential for all animal life (except land plants). Too much or too little can cause havoc in the body. Studies report that as much as 80% of dietary salt comes from packaged and can foods, and from eating out. It's easy to take in an excess of salt by consuming fast foods, as restaurant dishes are often overloaded with salt.

A lack of salt can be just as harmful as too much, as this elementary mineral is necessary for maintaining the balance of bodily fluids, helping transmit nerve signals, keeping muscles functioning properly and creating healthy blood and lymph.

Many chronic Lyme patients don't eat out due to their illness, and most of us go through at least a short period feeling absolutely yucky enough to keep us out of the public and away from restaurants. A lot of us stay away from packaged foods as well, eating fresh veggies and organic foods as much as possible.

If you eat a diet that is deliberately salt-free, how do you know you're getting enough of the stuff?

Be wary of misinformation

Lyme Disease Research Database — 2009-05-11T17:40:25-04:00

Aside from ticks and tick-carrying deer in our front yards there is something else we must be vigilant about: Misinformation.

For example, one piece of advice I've read in a number of places says that you won't get Lyme disease if you pull a tick out of your skin before it's been there for 24 hours. These articles usually do not name their source of information, instead saying, "latest medical research indicates that..."

I wouldn't be so sure. I asked Eva Sapi, Ph.D., who directs the graduate studies in Lyme disease research at the University of New Haven, about this claim. She said there was no evidence to support the "24 hour" rule. She added that personally, she knew field researchers who had contracted Lyme from a tick that had only been embedded for a couple of hours.

Lyme Disease Pictures

Lyme Disease Research Database — 2009-05-08T14:33:12-04:00

I can now stand to look - objectively view a photo of a tick, or glance at pictures of a bad rash on someone's leg or neck. However, the last thing I could stomach when I was very sick with Lyme were Lyme disease pictures.

My universe consisted of my bed and my computer. Both were necessary for survival and healing. I slept. When I was not trying to sleep or in too much pain or too dizzy, I sat at the computer and researched Lyme disease. Can you relate?

A large percentage of the skin on my hands, arms and shins was hamburger. I quickly learned not to search for "Lyme rash" or "bull's-eye rash." I couldn't bear looking at the images on the screen. Way too close for comfort.

Sleep. High-quality food. Antibiotics. Supplements. Physical exercise. Time. Love. Liberal doses of these ingredients have miraculously repaired my body and brain, and now I can look (when I must) at a picture of a tiny tick, even though I still squirm at the sight.

Support while detoxing

Lyme Disease Research Database — 2009-05-02T16:47:56-04:00

With all the talk about Swine Flu, there's an abundance of common sense about how to stay healthy making the rounds on the Internet, such as washing your hands regularly and supporting the immune system. Immune support is as central to keeping the flu bug away as it is in healing from Lyme disease. And one important step in keeping healthy is detoxification. Detox is part of the one-two punch in Lyme management (along with antibiotics) that RN Ginger Savely describes in our experts interview series. But what happens when you try to detox too quickly?

Anyone dealing with Lyme is painfully familiar with stressful "Herxheimer Reactions," which occurs when toxins - Lyme bacteria - in the body die off faster than the organs of elimination can handle. Learning how to manage Herxes is important yet tricky business. Essentially experienced as an increase in symptoms, Herxes can include nausea, headaches, brain fog, vertigo or mood swings, bringing more stress to an already stress-loaded system.

Some experts and patients say the Herx just comes with the territory, that it's unfortunately one of the crummy things that Lyme patients must endure in order to get better. However, others claim that painful Herxes are more likely to occur when the organs of elimination lack sufficient support. For example, Jean Reist, RN, claims that the intensity of a Herx can be reduced and in some cases eliminated altogether. How? By supporting the lymph system, an important part of the immune system and a major player in elimination. The lymph must be maintained in order to carry toxins away from the cells. An act as simple as drinking plenty of water each day and routinely jumping on a mini-trampoline can help move the lymph, and reduce the effects of a Herx.

The organs of elimination include the liver, the bowel, kidneys, skin and lungs. Yes, deep breathing, which is used in meditation and yoga practice, is a way to remove toxins from your lungs, so remember to support your body in healing by taking a deep relaxing breath.

Vegetarians with Lyme disease

Lyme Disease Research Database — 2009-04-27T18:22:48-04:00

When I interviewed Jean Reist, RN, for our Lyme experts' series, I could hear the angst in her voice. She worries that her vegetarian patients do not get enough protein. As she explains, the lymph system doubles as a grocery delivery-person and trash collector in our immune system. The lymph carries the nutrients to each cell, then turns around and carries the trash away. Without sufficient amounts of protein, the lymph cannot do its job and the system gets slogged down.

Reist's Pennsylvania clinic is located in the heart of what many consider a Lyme epidemic, and a significant number of the patients she treats for Lyme disease are vegetarians. Her chief concern is that many patients calling themselves vegetarian don't actually eat many vegetables. According to NAVS , the North American Vegetarian Society, a vegetarian diet can factor into radiant good health. However, getting enough iron and protein takes some knowledge and a little mealtime planning. It's easy for people to make the mistake of assuming that the absence of meat in the diet equals a healthier diet. Not true--especially if it means they've stopped eating meat and simply replaced it with pasta, potatoes and bread.

Generally speaking, vegetarians seem to benefit from an impressive amount of health advantages, such as lowered risk of heart disease, fewer cases of chronic disease and Diabetes Type 2, and on average, they live longer. However, eating a vegetarian diet doesn't automatically guarantee better health. Reist strongly suggests that her patients add eggs, cheese or fish to their diet as they struggle to heal from Lyme.

If you're a vegetarian or vegan with Lyme, how do you know you're getting enough protein? Do you include a wide array of veggies in your diet, and do you include legumes, which are rich in iron?

Why should you share your success story?

Lyme Disease Research Database — 2009-04-14T19:35:15-04:00

Not too long ago, I was unable to think, walk, talk or write due to the Lyme bacteria attacking my brain and speech centers. When I think about how hopeless and helpless I felt then, I can hardly believe it. So thoroughly has my life turned around for the better that it's hard to conjure even a wisp of memory of the dread and fear that enveloped me. I wasn't myself.

I've recovered, fortunately, and now find that my experience is very typical of people who've recovered from Lyme. We don't want to think about the dark days, don't care to recall them. Living an engaged and vibrant life again is an experience more precious than gold. Who wants to remember a brush with death from a Lyme infection, when there is still a lot of living to do? However, those of us who have recovered (or are in the process) can do more good by sharing our success stories than by slamming the lid down on that sick, shadowy time in our lives.

Lyme is the fastest growing vector-borne illness in the US. Each day, more kids and more adults -- from every walk of life -- are experiencing the harrowing mental confusion and searing pain that can accompany this multi-stage disease. Lyme disease-educated doctors are in short supply, and even amid increasing numbers of people diagnosed with Lyme, a cloak of mystery and misunderstanding still surrounds this illness and its treatment.

Lyme has proved to be a very personal disease, affecting each of us differently and to varying degrees. However, sharing our personal experiences is a valuable way to help. What works for you may not work for another person diagnosed with Lyme. Yet hearing about your struggles and listening to the elation in your voice can work a world of wonder for someone who is hurting.

We collect Lyme success stories and share them with the people who need them most. If you're beating Lyme and you want to tell others, please feel free to contact us.

How to hike & garden: Tick-free

Lyme Disease Research Database — 2009-04-11T12:05:54-04:00

Ticks are incredibly resilient critters. They have lasted for millenia due to their wily survival tactics. We're not required to admire them for this, however, we should be as determined in our efforts to avoid them as they are persistent in going after their goals--namely, a warm meal and a ride.

How do you avoid ticks? In particular, how do you avoid them in tick havens such as the US NE region, and pretty much anywhere that constitutes wilderness (including the parking lot at work, if there are hedges, grasses, trees or bushes nearby).

Are you like me? Since being struck down by Lyme and making the long, slow climb back to health, I've really lost my taste for hiking and gardening, activities that were a constant of my pre-Lyme life. However, I don't want to be afraid of the outdoors, and I know you don't either, especially this time of the year when the air smells like flowers and tulips are blooming in the colors of little girls' Easter dresses.

Taking precautions on a hike can be as simple or as elaborate as you like. You may want to stop short of duct-taping yourself head to toe, as the mother does to her son in the new movie, Lymelife. Wear white or light colors so ticks can be seen easily and eliminated a.s.a.p. Use a strong repellent. Tuck your socks into your pant, and check yourself (and the kids) when you get home.

Gardening, for me, has moved indoors. Growing plants is just too fun to give up altogether. On walks through my neighborhood I admire the results of other people's green thumbs, but here at home I get great satisfaction from growing sprouts. Not only do you get quick results, you can save money on the store-bought varieties, and guarantee freshness. Broccoli and clover are the house favorites.

So here are the main points: Wear white. Tuck your pants into your socks. Perform tick checks thoroughly after you've spent time outdoors. Grow sprouts. Don't be afraid of the big bad tick. Just outsmart it with your own wiles and tactics.

Happy spring!

Review of Lymelife

Lyme Disease Research Database — 2009-04-06T12:20:30-04:00

Lymelife is categorized as a comedy, however, it's the sort of black humor that scorches because it strikes a chord. Charlie (Timothy Hutton) is depressed and on antibiotics for Lyme disease. Here's an excerpt of film reviewer Rob Nelson's critique of the movie, which previewed at the Sundance Film Festival last fall:

The film centers on thin, 15-year-old bully magnet Scott (Rory Culkin), whose older, bulkier brother, Jim (Kieran Culkin), prepares to ship off to military duty, and whose longtime crush, Adrianna (Emma Roberts), reluctantly begins to return his timid gaze.

Adrianna's pill-popping father, Charlie (Timothy Hutton), shoots self-made targets in the woods with a rifle, dressed in suit and tie.

Alec Baldwin plays Mickey, Scott's father, whose underappreciated wife, Brenda (Jill Hennessy), duct-tapes her youngest son from head to toe to protect him from Lyme disease. Periodic cutaways to wandering deer and the real or imagined threat of wood ticks -- not to mention scenes of believably harsh marital bickering -- serve the pic's point that these frightened, emotionally starved people, kids included, are animals at best.

Read the entire review of Lymelife from Variety online.

Lyme goes to the movies

Lyme Disease Research Database — 2009-04-04T11:56:51-04:00

Can it be a good thing when characters in movies and soap operas have Lyme disease? Yes. Getting the word out to movie fans and soap opera devotees can help shape and inform public opinion. Martin Scorsese produced Lymelife , starring Alec Baldwin, Cynthia Nixon and Timothy Hutton. The film will be available on Netflix, and is scheduled to be released on April 17, 2009. The story takes place in the NE in the 1970s:

15-year old Scott Bartlett's family life is turned upside-down after an outbreak of Lyme disease hits the community spreading illness and paranoia. Scott's parents -- a workaholic father, Mickey, and an overprotective mother, Brenda -- are on the verge of a divorce as his older brother Jim is about to ship off for war. Complicating matters, Scott has fallen in love with his next door neighbor, Adrianna...

Stories are powerful conductors of information. They portray genuine emotion and can move people to action. Of course, the appearance of Lyme on TV and in the movies may give some false information as well. We can almost count on a certain degree of misinformation being transmitted through fiction regarding Lyme disease, which is confusing enough to understand in real life. I had to laugh at the recap notes for TV's long-running soap, The Young and the Restless, as Kay was suspected of having Lyme disease on Wednesday and received a diagnosis on Thursday. This is particularly funny since I think of soaps as a medium where characters can remain pregnant for at least a year.

What are your thoughts on these stories? Are they doing a service, or adding to the misinformation about Lyme disease? Tell us what you think.

Top US Athlete beats Lyme

Lyme Disease Research Database — 2009-03-21T10:04:48-04:00

From the time she was three years old, Perry Louis Fields has wanted to be the world's fastest runner. Now 30, the US Track and Field competitor says she's training at the top of her game. What makes her athletic success so sublime? Perry's torturous encounter with Lyme disease in 2003, which she says she has now beat.

"I’m not only healthy," says Perry. "I’m healthier than I was before I was bitten (no kidding!). My training and racing proves that. I’m the fastest and strongest I’ve ever been."

Beneath Perry's easygoing persona and her honey-toned Southern accent, she has a fiercely competitive nature. After enduring a miserable four or five month period of powerful antibiotics, she decided to quit the conventional route and devote what little energy she had to researching and finding "the cure," as she calls it. Although her symptoms "made every day a nightmare," she willed herself to begin taking baby steps toward getting back to her goal of running again.

With the dedication and steel determination of a true winner, Perry achieved her dream of not only running, but training as a pro once again.

"What Lance Armstrong did for cancer, I hope to do for Lyme disease. I have sometimes told myself that I wish I had cancer rather than Lyme. Someone with terminal cancer may feel otherwise, but I’m truly upset that the research on this disease is so inconclusive. The treatment for Lyme is inconclusive. It’s like nobody has had any experience with it at all, yet hundreds of thousands of people get it every year (I think that number is more like millions.)"

LDRD members can login and listen to Perry tell her inspiring story about beating Lyme. For Perry's website, please go to beatlyme.com.

Become a LDRD member and listen to dozens of interviews with both Lyme experts and ordinary people like you that struggle with Lyme disease.

New Lyme book by PJ Langhoff

Lyme Disease Research Database — 2009-03-11T20:01:20-04:00

“The scientific community is not listening to patients, and these books offer a chance for our voices to be heard,” says PJ Langhoff. The latest book was written after studying thousands of documents, mostly accessible via the Internet — an information resource often used by patients when seeking answers for health issues, for which they are heavily criticized. “We are not a hysterical bunch inventing illness by way of electronics, we seek answers. The idea that Lyme disease is not serious or chronic, that it is easily curable in all patients after antibiotics, or even that current diagnostics are accurate, is ridiculous,” says the author. “The book illustrates that current research easily refutes those holding a restrictive, minimalist viewpoint, and any guidelines that may help to promote that mindset.”

Read the full press release here.

Lyme epidemic causing healthcare crisis

Lyme Disease Research Database — 2009-02-26T13:07:27-05:00

CHARLOTTE, N.C., Feb 24, 2009 (BUSINESS WIRE) -- An ongoing battle over the diagnosis and treatment of Lyme disease, a tick-borne illness, is pitting doctors against doctors, prompting health insurance companies to deny medical claims at an alarming rate, and leaving suffering patients stuck in the middle.
Read the full press release here.

Legislative Forum Announcement

Lyme Disease Research Database — 2009-02-20T23:07:34-05:00

This Lyme legislative forum will provide education about the various ways Congress works and an opportunity to share your ideas and concerns. Meet other leaders from across the country and create a national dialogue on Lyme and tick-borne disease. This is a forum and everyone is encouraged to participate. This event is for anyone who wants to represent their Lyme community. What you will learn about the legislative process will be useful in your state activities, as well as our national efforts.

Please respond to the survey with YOUR ideas. We want to include everyone’s concerns and suggestions in the discussion. Also, please respond as quickly as you can. We can keep the preferential Holiday Inn rate only until the 27th of February.

Date: March 28, 2009

Keynote: Congressman Frank Wolf

A ONE DAY SEMINAR FOR LYME LEADERS: PLANNING AN EFFECTIVE LEGISLATIVE PROGRAM FOR LYME & TICK-BORNE DISEASE RELIEF

Sessions include:

- Experienced former Congressional aides and Lyme Leaders

- Understanding the Legislative Process and the Need for Hearings

- Appropriate Goals and Objectives in the U.S. Congress

- Substantive Issues in Lyme Legislation and Congressional Solutions

- IDSA Guidelines Review Panel Input Process & April 27th Hearing

- Presenting a United Front Sessions will be facilitated by20faculty of the

George Mason University, Institute for Conflict Analysis and Resolution

(ICAR)

Your ideas on what we need from Congress and how to achieve it are welcome. Submit your suggestions at http://www.NatCapLyme.org/LegForum
or call NatCapLyme at (703) 821-8833; (301) 980-6788 or (703) 435-2080.

A block of rooms has been reserved at the Holiday Inn, Ballston

http://www.hiarlington.com/

4610 N Fairfax Drive, Arlington VA 22203, 1-800-HOLIDAY (1-800-465-4329)

Reserve by February 27 for the NatCapLyme Special Promotional Rate of $85.

Anti-inflammatory diet can help

Lyme Disease Research Database — 2009-02-14T16:50:15-05:00

Inflammation is an immune system response to stress and toxins. Our bodies deal with Lyme infection by sending more blood to the irritated areas. The main features of inflammation are redness, swelling and pain.

It's difficult to eliminate the borrelia bacteria, so inflammation results, causing pain and wrecking all sorts of other havoc. On top of that, we must deal with the psychological or physical stress caused by the pain. And aside from the toxins that accompany and make up the borrelia bacterial complex, dealing with environmental toxins is generally a daily effort.

Antibiotics and herbal protocols are excellent help, but what else can be done about inflammation? This is where some people with chronic illnesses turn a critical eye on their diet and nutrition. And many claim that an anti-inflammatory diet can be a huge help in maximizing their healing protocols and helping to alleviate the intensity of Lyme symptoms and flaring herxes.

So, you're starting to feel a little normal after such a long fight with Lyme. Don't surrender to that deep dish cheese pizza! (Of course, a little treat now and then does the body good.) Steam delicious veggies instead, such as Swiss chard, kale, or mustard greens. Fix organic brown rice or rice noodles to go with them. If you can tolerate it, a bite of organic dark chocolate can make a yummy dessert.

Watch this blog for interviews with nutritionists and herbalists who work with Lyme patients, and delectable recipes for an anti-inflammatory diet. Remember, you don't have to change the way you eat forever -- you just have to give your body a break for a while, so your immune system response can strengthen. Eliminating foods made with wheat and dairy -- or at least, limiting them -- may boost your energy and reduce inflammation and pain.

Bring testing into the 21st century

Lyme Disease Research Database — 2009-02-06T13:44:22-05:00

How many times have you wondered why the flawed technology of the Western blot and the ELISA are still the standard test for Lyme? Hasn't anyone figured out a better, more sensitive test by now? New research is being done with twenty-first century technology, such as genomics and proteomics. More sensitive tests mean that greater numbers of people infected with borrelia would have a chance to begin treatment before Lyme enters the later stages. A person who tested negative for Lyme with the Western blot may actually test positive when tested for certain protein markers.

Pamela Weintraub, author of Cure Unknown: Inside the Lyme Epidemic, and senior editor at Discover Magazine, pulls no punches in a recent post about the IDSA's choice of panelists. The panel that has been assembled seems likely to merely reaffirm the old guard, and not consider new University-based scientific research.

"As someone who has traveled the country for six years interviewing these scientists to write my book, Cure Unknown, I can tell you unequivocally that many of the top researchers at the top institutions in the world do not think the original IDSA panel got it right," writes Pamela.

"Are recommended treatment protocols truly curing most of those with early, invasive borreliosis, as IDSA contends?"

"The answers won’t be found in the twentieth-century technology of the Western blot, by today’s standards crude yet still trotted out by IDSA as evidence absolute that they are right. (The Western blot for Lyme is so flawed that even its major manufacturer says he has found numerous "band" patterns more accurate than the one in use today.) Instead of relying on flawed 20th century technology, we must look to the science of the twenty-first century, including state-of-the-art genomics and proteomics that allows for the sequencing of every gene and protein involved in every stage of Lyme. With evidence of this calibre we won't have to fight over the truth: We will know what's going on."

Stay tuned for more LDRD interviews with top researchers, such as Dr. Eva Sapi of the University of New Haven. Dr. Sapi directs the graduate studies program for research into Lyme and other tick-borne diseases.

Lyme review panel members stir concern

Lyme Disease Research Database — 2009-01-29T18:39:35-05:00

At last, the IDSA (Infectious Diseases Society of America) has selected members to review the guidelines for the treatment of Lyme disease. Lyme awareness groups are alarmed at the placement of Carol J. Baker, MD, as the committee chairperson. Notably, there are also no ILADS (International Lyme and Associated Diseases Society) members on the review panel.

Lynn Shepler, MDJD, shares her concerns:

CAROL J. BAKER, MD, head of the new committee formed as a result of AG Richard Blumenthal's investigation, is Past-President of IDSA, and lists her chief interests as "VACCINOLOGY," "CLINICAL TRIALS," AND "VACCINE POLICY." She has published "more than 100 articles on vaccine research."

Dr. Baker is also a member of the Advisory Committee for Immunization Practices of the Centers for Disease Control and Prevention.

Was Dr. Baker a member of the Advisory Committee for Immunization Practices of the CDC at any point when past or future Lyme disease vaccines have been discussed --- formally, or informally?

The team she is part of at "The Center of Vaccine Awareness and Research" in Houston, Texas describes itself as "dedicated to improving the health of children from infancy through adulthood by promoting vaccinations and educating families and health care providers on all available vaccines."

Uh, does this include the Lyme vaccine(s)? Dr. Wormser's principal conflict of interest was that he was consulting to pharmaceutical companies on Lyme disease vaccines --- something he knew about and refused to disclose to IDSA administrators.

Dr. Wormser was head of each of the two IDSA guidelines on Lyme disease that have been issued. In my personal opinion, both versions of the IDSA guidelines have been biased in favor of vaccine commercialization.

By my reasoning, the need to deny the existence of persistent infection is part of the drive to commercialize Lyme disease vaccines that are not otherwise ready for market. Persistent infection is an important scientific problem that needs to be solved before any vaccine trials can be done. Instead, Wormser et al simply lie, and maintain the patients are sick with "something else."

So, instead of Dr. Wormser, we have a prominent vaccinologist, and former President of IDSA as the head of the committee? On the face of it, I find this very alarming!

(Please post this information to any Lyme disease discussion board to educate patients about the possible biases on the part of members of this new committee).

Following is a list of Lyme review panel members:

Carol J. Baker, MD,
Chair Baylor College of Medicine
Houston, TX

William A. Charini, MD
Peabody, MA

Paul H. Duray, MD (retired)
Westwood, MA

Paul M. Lantos, MD
Duke University Medical Center
Durham, NC

Gerald Medoff, MD
Washington University School of Medicine
St. Louis, MO

Manuel H. Moro, DVM, MPH, PhD
National Institutes of Health
Bethesda, MD

David M. Mushatt, MD, MPH & TM
Tulane University School of Medicine
New Orleans, LA

Jeffrey Parsonnet, MD
Dartmouth‐Hitchcock Medical Center
Lebanon, NH

Cmdr. John W. Sanders, MD
U.S. Naval Medical Research Center Detachment, Peru

Stevia poses no health risks

Lyme Disease Research Database — 2009-01-23T21:12:23-05:00

When you have Lyme, you can't do sugar. Some people can't tolerate honey, either. So how do you sweeten your tea? What do you put in your oatmeal? Stay away from Splenda. It's a bad alternative to sugar and may even cause a relapse of your symptoms (see the post on Jean Reist, RN for an example of Splenda's negative effects on Lyme patients).

The answer is stevia, a plant-based sweetener that has been popular in Japan and other countries since the 1970s. Stevia has been available in the US, however, it hasn't been promoted as a sweetener. Its status has recently changed. Watch for products made by Coca-cola and Pepsi to containstevia, which recently been vindicated by the Food and Drug Administration and found to pose no health risks.

"The [FDA] agency has granted the all-natural sweetener status as "generally recognized as safe" (GRAS) after Cargill and Merisant Company achieved a process called "Self-Determination of GRAS Status".

Valentine's day is closing in, and you can't get far from the heart-shaped boxes of sugar candies that are popping up in every store. If you've got a sweet tooth, be strong and ignore that chocolate urge. Be good to yourself while you're healing. Go get somestevia and try a couple of drops in your morning tea or steel cut oats. If you've never used it before, be forewarned: the stuff is strong! Go light. Couple of drops will do.

Expert Interview Series: Carol Fisch Part 2

Lyme Disease Research Database — 2009-01-17T12:56:31-05:00

We've just uploaded Part 2 of the interview with expert Lyme disease researcher, advocate and activist Carol Fisch. Adjunct Professor Emeritus of Laboratory Science, Carol discusses her experiences studying and teaching about the bacterial complex, Borrelia burgdorferi. Her students often ask her to give a simple explanation of Lyme. Below is a bit of her answer. For a more in-depth discussion please login and listen to the entire interview.

A simple explanation of Lyme disease in not possible, as Lyme is not a simple disease. It is not just an infection with Borrelia burgdorferi the causative agent of Lyme disease. We are dealing with an illness complicated by multiple infectious agents; many of them are immune suppressive.

The immune system has difficulty in detecting the organisms that cause Lyme due to multiple factors, not least of all, its ability to change shape in order to survive -- surely one of its best tricks.

From the moment the Borrelia burgdorferi complex enters the body, it has the ability to clock itself into our own DNA proteins. When hit by anything threatening its survival, it can go into cell wall deficient (CWD) stages or into the cyst stage, where it is protected from antibiotics and the immune system. An activated immune system, where the body is trying to find an enemy and can't, leads to reactivation of Herpes Virus 1 - 6, and auto immune issues.

Katy's story: Teens & Lyme

Lyme Disease Research Database — 2009-01-09T14:15:54-05:00

Katy says the hardest thing about having Lyme is that nobody understands.

She has trouble with word recall. She is susceptible to low blood sugar crashes. She is 15, and like so many others Lyme patients, at first her doctors misdiagnosed her condition, believing instead that she had a viral infection such as mononucleosis or Epstein Barr.

For six months Katy struggled against crushing fatigue and a painful skin rash, trying her best to keep up in school. Medications for the ailments doctors thought she had were only making her sicker. Her skin rash became so acute that her parents began to suspect their daughter might have contracted a flesh-eating virus. Fortunately, her grandmother, a registered nurse, listened carefully to her complaints and suspected that it might be Lyme. Her grandmother insisted Katy see a Lyme specialist. Katy's prognosis changed for the better when she received a correct diagnosis and subsequently began treatment with Dr. Chandra Swami, of Heritage, Pennsylvania.

Adults dealing with Lyme find it to be an alienating and frightening experience, but try being a teenager with Lyme -- and on top of that, a high-energy competitor. Katy excels in running and cheerleading and she is avidly honing her journalism skills and other pursuits. Her aim is to be a broadcast journalist, and in fact she is currently the "weather girl" for the local news station, which airs at her high school. Short-term memory loss isn't something that a young person should have to deal with. Imagine trying to survive the rigors of a normal school day!

For example, one day at school after diligently producing a video project and forgoing lunch, Katy experienced a vicious attack of low blood sugar. Recognizing that she'd better eat something immediately, she took out her sack lunch.

A school administrator snapped that she wasn't allowed to eat lunch sitting where she was. "Should I let all 900 students eat their lunch in here?"

"All the other 900 students don't have Lyme disease," countered Katy, put in the terrible position of having to defend herself for being ill.

One of the problems, says her mom, is that Katy looks great. She's vibrant and rosy-cheeked, and appears perfectly healthy. There's really no way for her teachers and school administrators to tell, simply by looking, that she struggles with painful symptoms every day.

Members, please login now and listen to Katy tell her story. Just wait until you hear what her lunchtime video project was all about, and why it was so engrossing that she forgot to eat. This young woman is a genuine inspiration.

Become an LDRD member an listen to all of our success stories and interviews with Lyme experts.

LDRD is on Squidoo

Lyme Disease Research Database — 2009-01-06T11:23:08-05:00

The LDRD is now on Squidoo. Please let all of your Squids know!

Lyme Disease Research Database- Squidoo

Happy New Year

Lyme Disease Research Database — 2009-01-05T19:26:23-05:00

Best wishes for 2009! May your health improve!

Give yourself a pain break

Lyme Disease Research Database — 2008-12-23T18:53:31-05:00

Illness doesn't take vacations. You don't get to clock out for long weekends of R & R. There are no breaks, no furloughs, no specific date you can circle on the calendar, flipping the pages and counting the days. Dealing with Lyme is a full time gig, especially when your symptoms are acute or you're in the midst of a flaring herx.

Since nobody at Lyme Headquarters is going to pop their head out the door, shake your hand, and tell you to go home and put your feet up, we need to remind ourselves. Take the opportunity to take a break. The whole world celebrates at this time of the year. Being sick now feels a bit like being the kid at boarding school with no parents coming to pick her up for summer. So even if you feel lousy, you're in pain, you wish you could formulate a complete sentence without forgetting what you were talking about...take time out. I've done it, and you probably have too, so I know it's possible.

When I was in an acute stage, bedridden and miserable, pain-breaks were few and far between. I learned a couple of tricks, a little mental prestidigitation. One was to watch funny movies and laugh. Out loud. Belly laughter is more than physical, it's a state of mind. It takes complete control of your attitude. It's really hard to be miserable and laughing at the same time. And for those few precious moments, I didn't feel the pain. In fact I felt happy, normal, and like everything was going to be alright.

Another trick I discovered, which isn't a trick but really more of a visualization, is to imagine another person, someone you either know or don't know, who is suffering worse than you. Sadly, we don't have to look far. Hold a picture of that person in your mind, take a deep, relaxing breath, and as you breathe out imagine all the pain and sickness draining from them. Whenever I do this, I can vividly imagine that other person smiling and rosy-cheeked, and I instantly (even if only for a moment) feel better too.

A doctor friend of mine tells me these little tricks are very healthy. She says they can even help break the cycles of pain involved in many chronic illnesses, cycles known as the pain cascade.

So take a pain break. Get on the phone to a long-lost friend, or e-mail them if talking is too tiring. Send e-mail notes to all your loved ones wishing them a happy holiday -- e-mail is less expensive and less work. Cut and paste. Watch a comedy on TV or rent a funny movie and let yourself get caught up in the silliness. Find a kid and tell them a knock-knock joke. I bet they'll have one for you, and it just might make you feel better.

We'll be here after your break, to wish you well, as always.

Happy holidays, everybody. Cheerio.

Immune system support

Lyme Disease Research Database — 2008-12-21T19:57:36-05:00

A few subscribers have said they're curious about my own particular healing protocol. We all know that there's no silver bullet where Lyme is concerned (although we wish) and that what works for your cousin or someone on your Lyme forum may not work for you, and vice verse. So keep that in mind. For the record, I feel great these days -- nearly normal (what a concept! Was I ever?). My routine is a blend of Dr. Cowden's and master herbalist Stephen Buhner's Lyme protocols, with a handful of other stuff thrown in for good measure. I get enough sleep, eat organic vegetables and fruits, try to exercise every day, and take probiotics.

One thing that I've learned from my own experience, as well as from talking to Lyme specialists and others who are healing, is that when you take antibiotics you must replace the friendly bacterial flora in your gut. Otherwise, "you can cause problems for yourself that are just as harmful as the Lyme symptoms themselves," says cardiologist and Lyme researcher Dr. Lee Cowden, whose herbal protocol for Lyme disease has helped many people. Even long after you stop taking antibiotics, probiotics can assist in bringing balance to your intestines. The intestines play a central role in the human immune system, and getting better is in many ways dependent on supporting the immune system.

So I want to mention something else I also take daily, a lactobacillus-based supplement that supports my immune system. I take 2 to 4 capsules daily, more if I feel stressed. It's called Del Immune V. A friend of mine sent me some when I first got diagnosed and I haven't been without it since. She takes it religiously too, as part of her protocol for hepatitis C. I have seen its effect on her, and the stuff is good. It seems to banish dark circles under her eyes, and best of all it seems to help lift her back to her natural wise, warm and witty self.

Although I haven't taken pharmaceutical antibiotics for two years, I've continued to take this high quality probiotic from Bulgaria. Although I may run out of other supplements and let them slide from time to time, I try to never go without Del Immune. It's made from a strain of lactic acid bacteria -- lactobacillus -- more precisely known as Lactobacillus rhamnosus, DV strain. The lactobacillus is cultured, then digested with natural enzymes that are an exact match to the enzymes in the human intestine, creating a product that is made of cell wall fragments containing pieces of cell DNA.

No silver bullets, but smart choices. Like eating organic and treating your tummy, and your immune system, with care.

Expert Interview Series: Carol Fisch

Lyme Disease Research Database — 2008-12-19T16:59:05-05:00

Carol Fisch is Adjunct Professor Emeritus of Laboratory Science. She is also a stealth pathogens researcher, teacher, and, as she also suffers from Lyme disease, an advocate and activist for those suffering from stealth pathogens and neuroendocrine disorders. In her outreach education, she explores the possibility that people with a diagnosis of Fibromyalgia and Chronic Fatigue Syndrome are dealing with a bacterial complex that also causes Lyme disease, among other illnesses.

"Most medical professionals, when speaking of Lyme disease, are typically referring to an outdated and over-simplified version of the disease that was once taught and believed that the main causative agent being dealt with was the Borrelia spirochete. We now know there are many agents involved," explains Carol.

"Many patients given a CFIDS or Fibromyalgia diagnosis, or a Gulf War Syndrome or Neuroborreliosis Complex (Lyme disease) diagnosis, are dealing not only with a spirochetal disease that causes multiple damage to the host but a very complex organism that causes multiple damage to the host. It is indeed a very complex organism within itself. Borrelia burgdorferi is one of the players in Neuroborreloiosis Complex."

Carol says she would like to see the medical community work more harmoniously together in an effort to find answers to the complicated challenges of these illnesses. She is hopeful that such unity is possible and imminent. As she says, "we have a long way to go but in working together hopefully we can come up with answers that help all of us to live healthier and more productive lives."

Carol's experience includes having been a medical laboratory advisor for tick borne illness testing. She is well-versed in microbiology, immunology and parasitology and has an excellent understanding of Cell Wall Deficient Organisms (CWD). I spoke with Carol about the significance of her work and research on Dec 11, 2008.

Members can log in and listen to the interview.

Let's Get the Lyme movie on Oprah

Lyme Disease Research Database — 2008-12-14T12:32:52-05:00

Dr. Mehmet Oz of the Oprah & Friends Network aired a 45-minute interview with director Andy Abrahams Wilson and medical correspondent Kathy Fowler on his nationally syndicated talk radio show November 26, 2008. Dr. Oz, a renowned surgeon and health expert, said "I was so moved!" and called Under Our Skin "a beautiful film...a whole different way of thinking about reporting on health."

Moved as he was, Dr. Oz expressed interest in trying to get Under Our Skin on Oprah, where he is a regular guest contributor. But first, in order to gauge viewer interest, Dr. Oz and Oprah need to hear from you. Here's what you can do -- and please remember to praise Dr. Oz's coverage of the issue and the film.

So now we know that we are on Oprah's radar... that is a big deal. But so far, there has not been an impressive enough response to Dr. Oz's show.

We need more. Get your friends, family, co-workers, doctors, nurses, anyone and everyone you know to write Dr. Oz. There are Lyme groups around the world - everyone needs to be passing this info along and getting everyone to email in. Can everyone post it everywhere.. email in. Ask friends and other people who know what you are going through to contact Dr. Oz.

Getting on Oprah would be a very huge deal.

Here is the info again to Email Dr. Oz.

Also, you can leave comments on Oprah's community forum.

Memory games

Lyme Disease Research Database — 2008-12-12T14:25:34-05:00

One Lyme symptom I really hate is the word-finding problem. You know how it is. You're talking to a friend and suddenly the word you're looking for seems to have been sucked into a black hole. It's not merely gone -- it's non-existent. Frustrating, huh? The good news is, you can improve your word recall by playing memory games. It doesn't take long, maybe 10 or 20 minutes a day. As with physical exercise, when you're consistent you see improvement.

Wordjuxtapoz.com, lumosity.com and mybraintrainer.com offer different types of memory games, ranging from easy to very difficult. With practice, you can improve your brain processing speed and other cognitive functions. Games are addictive!

You don't have to go online, of course. Take that puzzle-in-a-box down from the shelf, dump out the zillion little pieces on a card table and pull up a chair. Our family always has at least one puzzle going around the holidays. It's a comfortable way to pass a rainy day together. Improving your concentration and recall by focusing on detail is an active, healthy way to participate in your healing journey. And you won't be thinking about Lyme bugs.

Natural-born killers

Lyme Disease Research Database — 2008-12-11T11:22:50-05:00

There's a spot of good news in Lyme research this week. Scientists trying to ferret out the role of NK (natural killer) T cells in white blood cells know that dysfunctional or deficient NK T cells seem to lead to autoimmune diseases, such as diabetes, cancer and rheumatoid arthritis -- the kind that plagues the knees of many chronic Lyme sufferers. It seems that these natural-born killer T cells play a big part in helping to clear out bacterial infection. Read on:

RESEARCHERS FROM LA JOLLA INSTITUTE AND ALBANY MEDICAL COLLEGE IDENTIFY CELL GROUP KEY TO LYME DISEASE ARTHRITIS

Research Shows Important Role of NK T cells in Fighting Lyme Disease

SAN DIEGO – (December 3, 2008) A research team led by the La Jolla Institute for Allergy & Immunology and Albany Medical College has illuminated the important role of natural killer (NK) T cells in Lyme disease, demonstrating that the once little understood white blood cells are central to clearing the bacterial infection and reducing the intensity and duration of arthritis associated with Lyme disease.

Click here for the full press release.

Getting enough protein

Lyme Disease Research Database — 2008-12-05T15:44:18-05:00

Jean Reist, RN, tells me she is concerned about her vegetarian or vegan Lyme patients. She worries that they aren't getting enough protein, which is crucial in a healing diet. Protein, she says, is required to maintain a fully-functioning immune system. Being one of those people who hasn't eaten red meat since 12th grade when I ditched school to sit and scarf down Macs and fries with my buddies, I listen carefully when I hear Lyme specialists discuss the need for protein.

Protein works through the lymph system to help carry nutrients to your cells, and carry away the waste. Jean says she practically begs her patients who won't touch meat or fish to consider eating an egg or a slice of cheese. Her concern is that many people who call themselves vegans and veggies often fail to educate themselves about alternative sources of protein. Instead of eating a balanced diet, they simply consume more pasta and grains: more carbs.

Carbohydrates increase inflammation, which is exactly what we Lymies are trying to avoid. So although it's very easy to fix up a plate of spaghetti with a quick and tasty marinara sauce when you're cold and tired, it may only exacerbate your Lyme symptoms.

Meat, cheese and fish is all good, if it works for you. However, many health and diet professionals believe it is possible to get enough protein on a high quality vegan or vegetarian diet. You must educate yourself. Protein is available in foods such as phytoplankton, beans and kelp. Mmm, right? I know some of you don't consider phytoplankton food, unless you're a Baleen whale fitted with a special feeding mechanism.

Although I haven't consumed fast food since high school days, I am not a vegetarian. I have a weakness for salmon and goat cheese. I do take supplements, however, like so many people dealing with Lyme, and because I know that protein is a must for keeping my immune system in check, phytoplankton capsules are high on my list of daily requirements.

If you're a vegan or vegetarian, how do you get enough protein? I'd love to hear from you.

Lyme bugs crave sugar

Lyme Disease Research Database — 2008-12-03T14:29:19-05:00

Lyme bugs love sugar. However, Lyme symptoms may flare if you help yourself to the enticing cookie buffet. Cravings for certain foods, such as holiday desserts, are emotional, not physical. A plate of sugar cookies and a steaming mug of hot cocoa goes so perfectly with gray skies and long winter nights, right? Lyme disease, and any chronic disease, re-educates us about our cravings and appetites. Sugar makes the bugs happy and carbohydrates can increase inflammation. Lyme forces us to reconsider what makes us truly feel good. What foods add value to your healing? What foods subtract from it?

Sometimes we think we're choosing a healthy substitute when we're actually only making the problem worse. Tod Thoring, ND, recommends that you work with not just one doctor on your healing journey, but several. If possible, consider consulting a Lyme-literate nutritionist or naturopath.

Jean Reist, RN, who treats Lyme patients at a Pennsylvania clinic, told me that one of her patients decided he'd quit sugar, although he was addicted to Coca-cola. She'd informed him that his daily habit would keep him from healing, and that was enough to help him quit cold turkey. He got well enough to return to work, so he went back to his construction job. However, he missed his daily fix, so he picked up some Diet Coke and swigged it down.

Within days, his energy was totally drained and he was feeling sick again -- too sick to go back to work. His Lyme symptoms returned. He dragged himself back to Jean's office and told her about switching to Diet Coke. She told him that although it didn't contain sugar, it contained an artificial sweetener called aspartame, which is also sold as NutraSweet. The effects of substitute were even worse than regular sugar.

If strings of Christmas lights and gently falling snow make you want to bake a pumpkin pie, think about the Lyme bugs. They want more sugar -- don't let them have it. Although the herbal sugar substitute stevia is not sanctioned by the FDA as an artificial sweetener, many people use it in place of sugar. Try some in a cup of hot green tea, with a thin slice of fresh ginger. Ginger has long been promoted by herbalists for its overall soothing and warming effects. It may not replace the hot chocolate, but it will help take the chill off the cold winter nights.

Members, please visit the Interviews with Experts page for interviews with Tod Thoring, ND, and Jean Reist, RN.

Dr. Oz interviews Under Our Skin filmmaker

Lyme Disease Research Database — 2008-11-24T14:52:33-05:00

We received a flood of comments about Oprah's interest in Lyme disease. She's listening! And now there's someone you'll want to listen to as well.

You can hear Oprah's Dr. Oz this week on XM Radio as he interviews filmmaker Andy Abrahams Wilson, whose Lyme documentary Under Our Skin is helping turn the tide of attention toward this controversial and misunderstood disease.

The show airs Wednesday, November 26th at 1 a.m. 7 a.m. and 6 pm EST. Oprah and Friends producers say people who don’t subscribe to the satellite radio can also listen by going to http://www.oprah.com/radio and clicking on the “Free 30 Day XM Radio Trial.” Register and you can listen online.

Dr. Oz asks for Lyme patients to tell their Lyme stories.

HBOT for Lyme

Lyme Disease Research Database — 2008-11-19T16:57:44-05:00

Like many serious diseases, Lyme disease causes an oxygen deficiency. One very distressing symptom is often called "air hunger," and it can make you feel like a fish out of water. No matter how deeply you breathe, you just can't seem to get enough air.

Increasing the available oxygen is a must for healing. Any sort of exercise that increases your oxygen intake seems to be invaluable for beating Lyme, and most of the people I've interviewed who are healing or healed from Lyme engage regularly in physical exercise, activities ranging from brisk walking, running to swimming and vigorous biking.

Some people use Hyperbaric Oxygen Therapy as an adjunctive Lyme treatment. HBOT administers oxygen at high atmospheric pressure, saturating the body with oxygen and increasing the total available amount. To receive a treatment, you climb into a chamber where pure oxygen is delivered at three times the normal atmospheric pressure.

Among US doctors, HBOT is controversial, although it has been commonly used for many years to treat burns, injuries from car accidents, carbon monoxide poisoning, smoke inhalation and other sorts of trauma. It has also proven valuable in treating people with AIDS and HIV, and others who suffer from opportunistic infections resulting from immuno-suppression.

HBOT is widely used in Europe and other countries to treat people suffering with multiple sclerosis, those who are recovering from strokes, and people suffering from drug and alcohol addiction. Although HBOT is still controversial in the US, it is gaining acceptance and used by conventional and alternative doctors.

Have you used HBOT as an adjunctive Lyme treatment? If so, I'd love to hear about your results. Please drop me a line.

Lyme documentary filmmaker's speech

Lyme Disease Research Database — 2008-11-18T13:31:18-05:00

When filmmaker Andy Abrahams Wilson began making his Lyme documentary, Under Our Skin, he was driven by compassion and curiosity, two potent characteristics that led him to uncover the stories of many people who were struggling in silence. By winning the Vision of Hope Award from the prestigious Turn the Corner Foundation, Andy hopes the film will lend its weight to the collective tipping point needed to bring Lyme disease to the forefront of public awareness.

"My being was changed irrevocably by what I witnessed: suffering, injustice, and deafening silence. And above all: the courage of so many to persevere, to fight for life amidst the eclipse of light: the pain, fear, loneliness, and the mantra ‘It’s all in your head,’ " he says.

Read the full text of Andy Abrahams Wilson's acceptance speech for his Vision of Hope award on the Under Our Skin blog.

Under Our Skin filmmaker honored

Lyme Disease Research Database — 2008-11-07T15:11:18-05:00

Congratulations to filmmaker Andy Abrahams Wilson, who is being honored this week at a Turn the Corner Foundation event in New York City. Andy's heartwrenching and eye-opening documentary film, Under Our Skin, exposes the medical establishment's frequent dismissal of people suffering with Lyme.

From the press release: Turn the Corner will present the Vision of Hope Award to Andy Abrahams Wilson, Producer/Director of Under Our Skin, a film that investigates the shocking human, medical and political dimensions of Lyme disease, for his efforts to raise awareness for chronic Lyme disease. Leading Lyme-literate physician, Bernard D. Raxlen, MD, will receive the Humanitarian Award for his dedication to treating patients with tick-borne diseases, including Lyme.

"TTC is doing important work for the Lyme community, and has been a great force behind Under Our Skin," said Andy Abrahams Wilson. "Thanks to our joint efforts, the mainstream medical establishment can no longer ignore or marginalize chronic Lyme disease and its sufferers."

Andy is a featured expert in the LDRD's interview series.

Joe's Lyme success story

Lyme Disease Research Database — 2008-11-14T14:28:26-05:00

"I beat Lyme. I'd like to share my story," wrote Joe. To someone hurting with Lyme symptoms, could there be any sweeter words than those?

Joe's story filled me with inspiration. "Don't give up hope," he says, and he should know.

Although he now resides in Europe, he grew up in a region of the US where ticks are a part of everyday life, especially for a kid with a dog. Sick during his childhood with mysterious symptoms that he was eventually told he had outgrown, he struggled with chronic pain many years later. After a vacation in Barcelona, he became very ill and dragged himself from doctor to doctor, as one after another refused to treat him for Lyme. He was desperate and suicidal during the roughest period, which lasted six years. At the end of that time he discovered a newly established Lyme treatment clinic in Germany, the Borreliose Centrum Augsburg, and his life took a dramatic turn for the better.

At the clinic, his recovery from Lyme officially began. He was placed on three months of IV antibiotics, but not a "cocktail" blend that some US Lyme doctors use. Immediately, he began feeling better. In addition to antibiotics, doctors at the clinic engaged him in several types of the supporting therapies, including infrared and oxygen treatments. He also uses the powerful herbal therapies from Stephen Buhner's book, Healing Lyme.

Today, Joe has returned to the working world. The terrible six year period now seems surreal to him. "It's an intense pain that doesn't go away, and nobody can understand it," he says. "It's confusing for the person who has it, trying to explain it to their friends and their employers."

Joe feels strongly that people who heal from Lyme should follow up with their doctors, so medical professionals can better track which Lyme treatments are working, and which are not. He has talked to doctors who tell him that often patients leave their care and never update the doctors about their condition. Unfortunately, it's easy to find stories of people suffering from Lyme disease, yet less common to hear about those who are healing and engaged in vital and productive lives again. There's plenty of bad news on the web. This is why we collect and share success stories.

LDRD members, listen to Joe tell his success story here. And please keep your eye out for an upcoming interview with Joe's doctors at the Borreliose Centrum Augsburg.

LDRD members can listen to the interview with Joe by logging in. Learn more about becoming a member.

The Lance Armstrong of Lyme disease

Lyme Disease Research Database — 2008-10-31T15:03:25-04:00

Caryn "CJ" Jaffe is pure bottled sunshine, a powerful and amazing model for those of us who are sick and determined to get better. She calls herself the Lance Armstrong of Lyme disease. Although she is "bombarded with Lyme symptoms every day," she's worked hard and prepared to compete in an ironman event on Saturday, November 1. What's the lesson for the rest of us? We can do it too. Maybe not race in an ironman, however, we can find the inner strength to set a big goal and then work to reach it, no matter what obstacles are in our way.

"I found out my bib number is 81 (no idea how I ended up with such a low number...it doesn't mean anything but it's kinda cool!)," she told us. "People can go to ironmanlive.com and search for me by name or bib number on race day, 11/1/08."

"I am starting to get very emotional about being a part of this race," says CJ. "I honestly never thought I could make it back to being this kind of an athlete. It truly is a miracle of sorts. I cannot wait to race. Just to get to that starting line is leaving me speechless. I am excited to see what the journey holds during and afterwards!"

Please follow CJ's race online, and forward this story to anyone you know who could use a shot of inspiration. I recently interviewed CJ for our Lyme Success Stories, so members can also listen to her tell her remarkable story. This little firecracker is also going to make a huge explosion with the book she's writing about her struggles with Lyme disease and her grit and determination in fighting her way back to an active life, one that even Lance Armstrong would be impressed by!

It's no coincidence that many of the people who are beating Lyme are dedicated to regular physical exercise. Ask your Lyme-aware doctor about starting an exercise program that is appropriate for your condition.

Ready...set...get better!

Beating Lyme takes courage

Lyme Disease Research Database — 2008-10-10T21:56:36-04:00

Advocating for yourself requires courage. For years I've suspected that chronic Lyme patients have got to be some of the gutsiest people around. After listening to the personal success stories of a number of people who are beating Lyme, it appears that courage is an ingredient they have in common.

For example, Darryl tells about his fierce battle with Lyme symptoms, his struggle to find adequate medical help, and ultimately, his success. As he explains, he makes a living as a professional athlete, racing bikes and working for the studios as a stunt man.

Stunt work is dangerous. These guys and gals deal with a gamut of risky activities, such as faked accidents, explosions, and racing away from the scenes of television crime. It's safe to assume that a stunt guy would have guts.

But imagine the courage it took for Darryl to lose the physical ability to work, to have to begin advocating for himself without any help from friends or family members, to fill out form after form of insurance information. To live alone on disability for a period of three years. And all the while, to endure the intense symptoms that we've all experienced in varying degrees, thanks to this pernicious disease.

Of course, you can easily imagine his situation, because yours is probably not so different from his. You may not be a stunt guy (or gal), but your struggle has undoubtedly been just as difficult.

Are you beating Lyme? I would like to hear--and share--your success story. Write to me here.

ILADS to train more doctors

Lyme Disease Research Database — 2008-10-03T19:38:20-04:00

As you are probably all too well-aware, we have a desperate need for more Lyme disease specialists. Driving or flying thousands of miles to see a Lyme literate doctor is not a luxury that most of us can afford.

According to this article in MediLexicon, the International Lyme and Associated Diseases Society (ILADS) has started a new training program to teach more doctors how to diagnose and treat chronic Lyme disease. With financial assistance from the New York-based Turn the Corner Foundation, the program aims to train 100 doctors over the next five years.

"With more than an estimated 200,000 of cases annually, Lyme disease has become the leading epidemic of our time," said Dr. Daniel Cameron, ILADS board president and internal medicine physician. "We need more physician-scientists who will be the future leaders in the treatment of Lyme and associated diseases."

Many physicians are not aware of the complexities of tick-borne diseases, and patients with Lyme symptoms are too often misdiagnosed, under treated or simply dismissed. The disease now known in the medical community as the Great Imitator can be a superb mimic of a hundred other conditions, especially if it hasn't been treated correctly when in the early stage. This is due to the complex nature of the Lyme bacteria, which has the capacity to hide from the body's immune system in order to protect itself. Doctors who are trained to recognize and treat Lyme symptoms will help increase awareness of the disease.

The ninth annual ILADS 2008 conference will be held on October 18-19 in San Francisco. Entomologist Willie Burgdorfer, who discovered the Lyme bacteria we know as Borrelia burgdorferi or Bb, is scheduled to be the keynote speaker. Several hundred physicians from across the globe will be in attendance. For Lyme researchers and medical specialists who treat Lyme patients, the conference offers an opportunity to collaborate and learn about each others' work.

Tell Oprah your Lyme story

Lyme Disease Research Database — 2008-09-30T19:45:42-04:00

UPDATE: The link for Dr. Oz has been removed by Oprah.com.

Oprah is interested in Lyme disease. Apparently the Lyme documentary, Under Our Skin, is getting under hers!

Click on the link below and tell your Lyme story to Oprah's Dr. Oz. If you want somebody to actually read it, keep it short, around 100 words. That's not a lot of room. Just include the date you were diagnosed, how--and if--you found a doctor to treat you, and what you're doing for Lyme treatment.

Dr. Mehmet Oz is professor and vice chairman of surgery at Columbia University in New York City, director of the Cardiovascular Institute and founder and director for the Complementary Medicine Program at New York-Presbyterian Hospital. He is a regular contributor to The Oprah Winfrey Show and Oprah.com.

Darryl's Lyme success story

Lyme Disease Research Database — 2008-09-26T19:24:34-04:00

Darryl is a professional athlete. He races mountain and BMX bikes, and works as a stunt man in Hollywood. When I asked how he would classify his story, he didn't hesitate to call it a success. "I'm 100% better," he says, confidently. You can hear the relief in his voice. Talking about his future, he mentions his work and racing, but it's clear that suffering for so many years with undiagnosed Lyme has influenced his outlook as well. He's now devoted to telling his story wherever he can, and is passionate about helping others.

LDRD members, listen to the interview with Darryl.

Learn about becoming a member and listen to the interviews.

Lyme patients take the fight to DC

Lyme Disease Research Database — 2008-09-25T11:01:33-04:00

A bill that would direct 20 million dollars toward Lyme disease research is being held up by committee. Lyme patients showed up by the dozens this week on Capitol Hill to show Congress that increasingly, people are exposed to serious tick-borne diseases and are in dire need of more doctors who are educated about Lyme disease treatment.

Joe LeBlanc, Director of the Central Virginia Chapter of the National Capital Lyme & Tick-Borne Disease Association emailed an optimistic note yesterday from the Congressional Briefing. Joe reports that there was "standing room only" at the meeting, and despite the focus on the financial crisis, the briefing went very well. Now, we have to keep on top of our congressional representatives to keep up the momentum.

A big thank you to Joe and everyone who traveled to the Hill to speak up on all our behalf!

Watch the news video.

Read the article.

Stephen Buhner's DIY massage oil

Lyme Disease Research Database — 2008-09-19T20:17:57-04:00

For a treat, I asked herbalist, author and teacher Stephen Harrod Buhner to share a simple DIY recipe to help ease arthritis pain. Not only will it help reduce the pain, it smells wonderful! Plus, it's easy to make with simple ingredients you can find in a good healthy grocery store or co-op. And as the weather turns crispy heading into fall, a soothing massage will warm achy joints.

Stephen's book Healing Lyme, is much appreciated by many Lyme patients who can't tolerate antibiotics, or who suffer from chronic Lyme disease, have already reached their limit with standard Lyme treatment, or are simply looking for an alternative to Western medicine. He's a wonderful ally to have as we journey through our various healing paths. These are Stephen's recent books:

The Secret Teachings of Plants:
The Intelligence of the Heart in the Direct Perception of Nature
(Bear and Company, 2004)

Healing Lyme: Natural Healing and Prevention of Lyme Borrelosis and its related Co-infections
(Raven Press, June 2005)

Stephen Harrod Buhner's Arthritis massage oil formula:

Use essential oils and a carrier oil. Stephen says he normally uses olive oil as a carrier, though a lot of people prefer jojoba, which is lighter and less fragrant. The amount of essential oil used in the mix can be adjusted up or down depending on personal preference.

1) 8 ounces olive oil (or jojoba oil)
2) 1/4 tsp each of the following essential oils: juniper, lavender, rosemary, eucalyptus, German or Roman chamomile. (Alternatively, you can use peppermint, ginger, thyme, geranium)
3) Mix well.
4) Put into glass bottle, keep protected from sunlight.
5) When needed just pour a bit into the hand and massage into the affected area.
6) Let it work, takes a little while for it to penetrate the tissues.
7) Do not take internally.
8) Do not get on sensitive areas - i.e. eyes, reproductive organs, etc. or any areas of abraded skin.

Stephen Buhner's website is called Gaian Studies. He's featured in our experts interview series, talking about the challenges to Lyme diagnosis and treatment, and discussing his herbal approach to healing. Join here to listen.

Relief for painful joints

Lyme Disease Research Database — 2008-09-18T13:39:40-04:00

One of the most common Lyme disease symptoms is achey knees, fingers, and other painful joints. If you suffer from rheumatoid arthritis, you may find relief with moxibustion, which you can create with the heat from a lighted, tightly wrapped bunch of dried mugwort. Moxa is mugwort.

Author, Herbalist and acupuncturist Lesley Tierra, whose arthritis massage oil formula I've posted here, says many arthritis sufferers find relief from moxibustion. To use it on your knees or fingers, light one end of the moxa stick by holding it over a candle, or with a lighter. The flame will go out but the stick will still be burning, like hot coal. Hold the cool end and aim the hot end of the moxa over the achey place, close enough to feel the heat. Be careful not to touch the moxa to your skin. I've been using it on my aching knees for about ten minutes at a time, once a day. Sitting quietly for a few minutes and appreciating the soothing warmth flooding my joints has also helped remind me to slow down during a busy work week.

Moxibustion is used in Traditional Chinese Medicine to warm a patient's skin and stimulate qi, the life force. You can obtain a moxibustion bundle from an acupuncturist, which is where I got mine. It's about the same size as a cigar, and while I think it smells a whole lot nicer than most cigars, it does create a fair amount of smoke and incense while burning.

Read more about Lyme disease treatment.

Send your doc to SF

Lyme Disease Research Database — 2008-09-16T21:33:39-04:00

When I was receiving Lyme disease treatment in California, where I lived at the time of my diagnosis, my family doctor was a naturopath who had studied with ILADS physician Dr. Raphael Stricker and others with CALDA. I was extremely fortunate to have his expertise as he helped me battle the fight of a lifetime. In turn, he said he felt lucky to have the expertise, experience, and excellence of these Lyme specialists behind him.

Your doctor doesn't have to live in California to attend. People from all over the country are planning to go. Help us spread the word about the CALDA Lyme conferences coming up in San Francisco. To sweeten the pot, here's a way for him or her to get reimbursed for a portion of the cost:

From the CALDA website:

CALDA will reimburse up to $800.00 out-of-pocket expenses for any actively practicing MD, DO, ND, NP or PA in any state to attend the annual conferences put on by the International Lyme and Associated Diseases Society (ILADS) and the Lyme Disease Association (LDA). CALDA grants are limited and are only available to those qualifying professionals who are attending the conferences for the first time. Preference will be given to persons currently engaged in treating tickborne infections and who plan to attend both conferences.

The 2008 ILADS and LDA conferences will be held on October 17 – 19 at the Cathedral Hill Hotel in San Francisco. Please check the ILADS and LDA websites for details and to register at: www.ilads.org; www.lymediseaseassociation.org.

Jerry's Lyme success story

Lyme Disease Research Database — 2008-09-12T17:27:00-04:00

"Work with your doctors, be your own best advocate. Do research, and get a second, third, tenth opinion," says Jerry. "There is life after Lyme disease."

For Jerry, the difficulties of Lyme are a thing of the past. Although it took its toll on every day life, and his marriage couldn't hold up under the strain of the illness, he now leads a full, happy life. He's active and loves his work as a professional consultant, and proud of his two daughters, both college graduates. However, for several years during the 90s, Lyme was a force to be reckoned with.

In 1994, he and his family went for a weekend at their cabin in upper Lake Michigan. Upon returning home, he spotted a tick buried in the skin on his ankle. Over the next weeks and months, he experienced painful, swollen joints, especially his knees and fingers.

In January, 1995, Jerry was diagnosed with Lyme disease. Aside from joint pain his symptoms included severely bloodshot eyes and blurred vision that came and went. As a well-educated Lyme patient, he got used to toting a large notebook of his own to his doctor visits. A particular combination of antibiotics seemed to finally make the difference, especially when his doctor was willing to give him the winning combo for a whole year, as Jerry requested. He endured the repeated Herxheimer reactions in order to stay on the medicine long enough to fully eradicate the Lyme infection. But his problems weren't over yet. The next year, while Lyme was still active, he was also diagnosed with coronary artery disease.

While Jerry is not overweight, is an avid exerciser and non-smoker, his cardiac problems led to two different bypass operations and several angioplasties. To this day, he and his cardiologist wonder whether the Lyme infection had anything to do with his heart problems. Jerry believes that a lot of his health problems began with the tick bite.

The elements of this story are familiar, although in some ways Jerry's story is quite unusual. For example, over the entire course of his disease, his treatment was covered by a generous health insurance plan through his employer. I told him he was luckier than most. He agrees.

In March, 2007, he got a Golden Retriever to accompany him while pheasant hunting. One day, he took the dog for a run while riding his bike. A half a block from home, the dog bolted...the story continues.

LDRD members can listen to Jerry's interview. Learn about becoming a member.

$25,000 for Lyme research

Lyme Disease Research Database — 2008-09-11T16:51:42-04:00

I'm pleased to pass along a bright spot of news for chronic Lyme disease sufferers. According to an article in today's MarketWatch, researchers at a biotechnology company were gifted by an anonymous donor with $25,000 towards a new study to try to unlock the mystery of Lyme disease. Why do antibiotics only cure some cases of Lyme?

Researchers at Viral Genetics, Inc., are hoping to answer that question and more.

The article continues:
Research on chronic Lyme Disease, including symptoms related to the central nervous system and arthritis, has generated inconclusive and controversial results. Some researchers contend Lyme is driven by chronic infection and recommend patients be treated with antibiotics for the long term. Others support the hypothesis that the disease is the result of autoimmune T-cell activation that occurs subsequent to the initial infection or after the infection has cleared.

"Our hopes are that the information acquired from this very important study, may act as a bridge between those who contend that Lyme Disease is an active chronic infection and those who feel it is an autoimmune trigger. The answer to this question is of great importance for all those suffering in the Lyme community. Only through this information can we begin to formulate more successful treatment regimens for the chronically ill," said Dr. Steven Harris, co-investigator, Associate Professor Stanford University.

Going for Gold in spite of Lyme

Lyme Disease Research Database — 2008-09-08T12:46:53-04:00

23-year-old champion archer Mel Clarke of Great Britain was asked what it meant to be preparing for the Summer Paralympic Games in Bejing, which opened Sunday.

"The honor to represent your country at that level, it's incredible. I didn't think I was going to have the opportunity."

Lack of confidence in her athletic ability was not the reason for Clarke's doubt. Rather, it was a tick bite that had resulted in Lyme disease.

In 2003, Clarke was paralyzed and partially blinded by Lyme disease. She was told she'd never shoot the bow again. Since age 11, she has used a wheelchair due to arthritis. A fearless competitor, she rejected the notion of giving up her dream of gold. Instead she worked hard to heal from Lyme's brutal symptoms and recover movement, sight and agility. Three and a half years ago she began training for the 2008 Paralympic Games.

The Summer Paralympics began in Rome in 1960, for athletes with physical, mental or sensory disabilities. They are held in the same host city as the Olympic Games, and run by the same organization. They begin three weeks after the Olympics closing ceremony. "Para" is from a Greek word for "alongside," and is not related to "paralyzed."

Mel Clarke currently holds 20 county records, 10 national able-bodied records and eight world records. In addition to going for the gold in Bejing over the next few weeks, she is also eagerly anticipating competing in her home turf in the London Olympic Games in 2012.

Chronic Lyme Disease

Lyme Disease Research Database — 2008-09-05T16:49:28-04:00

Chronic Lyme disease is controversial. It is what appears to affect those of us who still suffer from Lyme symptoms after finishing a standard IDSA recommended dosage of antibiotics. In some cases, chronic Lyme manifests in Lyme patients who received antibiotics for treatment, but weren't given a strong enough dose for a long enough time.

Some Lyme symptoms seem almost livable. Tinnitus, for example. Talking from personal experience only, I can live with it. This is not to say that I like it. On the contrary. I'm a classically trained musician, peculiarly sensitive to noise. You know those people who wince at the out-of-tune piano at the community concert? That would be me. I'm not exactly proud of that, just sayin'. So, losing my hearing partially to tinnitus has really sliced into my enjoyment of natural sounds. The tinnitus might go away some day. For now, it sure seems chronic. There are metallic crickets playing at varying volumes inside my head, 24/7.

Other chronic Lyme symptoms are far more serious. For example, medical evidence suggests that rheumatoid arthritis is one result of untreated, or undertreated Lyme disease. As many as 60% of people with untreated Lyme may develop chronic arthritis.

Central nervous problems, such as facial paralysis and meningitis are said to occur in 10 to 20% of people who are undertreated or never treated for Lyme.

Heart symptoms occur in a small percentage of Lyme patients. A jumpy, pounding irregular heart can vary the gamut from being not at all bothersome, to very scary. The jumpiness can occur either because of an infection in the heart, or an electrical conduction that requires the patient have a pacemaker implanted.

Chronic Lyme is controversial because doctors don't all agree that these long-term symptoms of Lyme are indeed still considered Lyme. Whatever you call them, they need to be tended to.

Deer ticks and other critters

Lyme Disease Research Database — 2008-09-01T13:00:23-04:00

"My dog has Lyme. Could I get it from her?"

No. If you are bitten by a tick, you may get Lyme. Your dog cannot give it to you directly. However, you may both get it from the same infected tick. Being bitten by a tick that crawled onto you when you were snuggling or letting her sleep on your bed is more likely. Ticks don't jump, like fleas. They crawl.

These ticks and others can be vectors for Lyme and other bad diseases. Vector means they are animals that can carry disease to humans.

* Deer Tick (Ixodes scapularis)
* Western Blacklegged Tick (Ixodes pacificus)
* Lone Star Tick (Amblyomma americanum)
* Avian Tick (Ixodes auritulus)

Search Term: Lyme disease tick.

According to Eva Sapi, PhD, biologist and director of the Lyme research program at the University of New Haven, Connecticut, the ticks collected in the NE region of the US this year have shown a higher percentage of Lyme infection than in the past. Not only are there greater numbers of ticks than in the past, they're also more likely to be carrying Borrelia burgdorferi, the Lyme bacteria.

Your dog, cat, or horse might inadvertently share a Lyme-infected tick with you. Do be careful and perform regular tick checks all over your body whenever you've spent time with them. If you rarely venture into the woods or onto the seashore without slathering your body with DEET, and make your kids stay in your own yard to play, you may not think you are putting yourself or your loved ones in harm's way. Unfortunately, it's tougher than that to steer clear of tick habitat. Lyme researchers tell me there are plenty of ticks in our own yards, not just in the wild. Where we live in North Carolina, deer regularly walk along the side fence, where they're nicely hidden by the dense woods in the lot next door. I only spot them when I'm spacing out while staring past my computer monitor, out the office windows. One time I thought I saw a whole section of tree branches move away from the tree. On closer inspection, I realized with a start that I had been looking at a beautiful buck with a giant rack. Deer are survivors. They are excellent at adapting to living in urban areas, and they are often covered in ticks.

I'd love to have a yard full of guinea fowl, who find ticks a tasty treat to eat. However, they're super noisy and I'm afraid they'd drive me and the neighbor, who is also a writer and works at home, batty with their cry.

Tell me what you do to avoid (or control) ticks?