Rethinking Lyme disease treatments
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
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.
Diagnosis and treatment of Babesia & other coinfections
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
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
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
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
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!
Start where you are. Fight chronic inflammation.
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
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
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
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?
What's wrong with conventional medicine (and what to do about it)
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
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
Self-treatment for Lyme: Understanding your immune system
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
Following up with Samento & Banderol
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
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.
Has Lyme changed your mind?
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.
Managing chronic Lyme symptoms
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.
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
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
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
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
Nutrition & diet are essential - Interview with Ginger Savely
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?
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
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
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
“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.
Biotoxins test and chronic Lyme
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
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
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.
Healing Lyme Naturally
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.
Ever reached a crossroads in treatment?
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
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.
Darryl Crews' Olympic Gold-style healing tips
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.
Treatment issues for children with Lyme
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.
Dr Cowden's updated Lyme protocol
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.
Making your own herbal tonics
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.
Dr Burrascano's Lyme treatment guidelines
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.
Lyme sufferers in need of help
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.
Alternative Lyme treatments
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
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.”
Effects of Cumanda & Samento in treatment of Lyme disease
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
Give yourself a pain break
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
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.
Memory games
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.
HBOT for Lyme
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.
Stephen Buhner's DIY massage oil
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.
Send your doc to SF
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.
Herbs for Lyme
I recently got the opportunity to talk with Dr. Lee Cowden about using herbs for Lyme. His core Lyme herbal protocol, which he is continuously refining, has helped so many Lyme sufferers, including our editor (that would be me). I'll post the interview soon in our members' area so you can listen to the conversation. Dr. Cowden is one of my heroes in the Lyme wars, particularly because he devotes a great deal of his time teaching other physicians how to diagnose and recognize Lyme in their patients. I told him I would like more information on two of the herbal remedies he uses. In particular, Enula and Serrapeptase.
Enula is used for addressing at least one of several common Lyme co-infections. The powerful antimicrobial defense tincture contains an extract of elecampane. Nasty pathogens such as microfilaria and worms gang up to create the co-infection Babesia, which is, unfortunately, more the rule rather than the exception in many Lyme patients. Many of doctors I talk to refer to ticks as little sewage plants; whatever icky sludge they contain gets dumped into our bloodstreams when we're bitten.
Serrapeptase is a proteolytic enzyme, derived from silkworms, who use it to dissolve their chrysalis. Enzymes dissolve organic matter such as cysts and inflammation. They're often used in treating rheumatoid arthritis, even as an alternative to steroids and ibuprofen. Such a potent anti-inflammatory agent can be very useful in keeping your knees happy, and reducing the stress from arthritis pain. However, with enzymes, timing is everything. Take Serrapeptase between meals, leaving at least an hour on either side of eating. Do this so that the enzymes won't use up their healing power by digesting your food, instead.
Listen to the interviews with Dr. Cowden and other Lyme specialists.
Lyme vaccine in development
On a frigid day in February, this article from the Czech Republic's online newspaper, the Prague Daily Monitor, provides a warm note of hope. All we have to do is hang in there for seven years:
Czech producer may have Lyme vaccine in 7 years
By ČTK / Published 21 February 2008
Olomouc, North Moravia, Feb 20 (CTK) - The development of a vaccine against Lyme disease (borreliosis) will take at least seven years though scientists from the Olomouc-based institute already have its formula, Evzen Weigl, head of the Immunology Institute of Olomouc university, told reporters Wednesday.
The vaccine is being developed by a five-member research team in Olomouc in cooperation with colleagues from the Bioveta pharmaceutical company in Ivanovice, south Moravia.
Bioveta director Libor Bittner told the Ekonom weekly in January that the vaccine is being tested in the Czech Republic and Germany and the results of the tests are expected by July.
"This information has become a media hit, but it has been slightly distorted. So far we have just a prototype of the vaccine, and only on the basis of preclinical trials' results we will seek a strategic partner for the production," said Weigl.
He added that a veterinary version of the vaccine was planned first.
"In the best case, the vaccine might be available in seven years," Weigl said. The vaccine development has continued for 13 years and cost several million crowns. Up to five research teams are working on this task in Europe, Weigl added.
Some 4000 people get annually infected with borreliosis, an infectious disease transmitted by ticks, in the Czech Republic. In 2006, 4370 people caught the disease in the country, which has been the highest figure in the past ten years.
Bioveta, founded in 1951, produces veterinary immunologicals and pharmaceuticals. It exports its products to some 40 countries.
Bioveta has already produced vaccine against Lyme disease for dogs.
The vaccine against encephalitis, another tick-borne disease, has already been developed.
Medical pro explains link between protein and healing
According to Jean Reist, R.N., one good reason to get sufficient amounts of protein in your diet while you're healing from Lyme is to keep your lymph system working effectively. The lymph, or lymphatic system, is a major part of the body's immune system. Protein is necessary for transporting trace minerals through what is known as the extracellular matrix within the lymph system. Imagine the matrix as the white of an egg that's just been cracked open. You don't want it to congeal, as an egg white does in a hot pan, because it would get clogged up with toxins. You want your matrix to stay loose, efficiently transporting nutrients to the cells, and transporting that toxic waste away.
Vegans and vegetarians often eat soy products to boost their protein intake. Yet Reist, who treats Lyme patients in her Pennsylvania clinic, worries that the patients who eat soy may risk getting too much copper in their diets. Soy is high in copper, and evidence suggests that patients trying to heal from Lyme must also get rid of an overload of metals, including copper, mercury, lead and aluminum. She asks her patients to consider eating animal protein such as eggs, fish or whey while fighting Lyme.
Reist observes that vegetarian patients sometimes eat a lot of pasta and grain, which may be easy to prepare, but are high in carbohydrates. She says that for Lyme patients, loading up on pasta and grain instead of protein is not a good idea, for many reasons. For example, the grains wash away magnesium, and she says that Lyme patients tend to have a magnesium deficiency. In addition, carbohydrates drive inflammation, and as you probably are already aware, a big part of overcoming Lyme is fighting the accompanying chronic inflammation.
Jean Reist, R.N., participated in our ongoing expert audio interview series, which is available online for LDRD members.
ILADS advises treatment options
In his speech, Dr. Cameron announced that he is appealing the the CT Department of Public Health to drop the case against Dr. Charles Ray Jones. He advises that the scientific and medical communities need to leave treatment options open in order to better understand controversial issues such as Lyme disease.
Some of the folks I know who are suffering with Lyme disease say they are only equipped to patch their lives together on a daily basis with the help of long-term antibiotics. These people deserve to have treatment options that allow them to gain back a quality of life, and qualified doctors who can advocate for them without fear of disciplinary action.
Arthritis oils for massage
Below are two possible formulas for arthritis oils from renowned herbalist Lesley Tierra's book, The Herbs of Life: Health and Healing Using Western and Chinese Techniques. (The Crossing Press: 1992) Use externally.
* Use equal parts: bay, eucalyptus, mugwort, rosemary, fresh grated ginger and cayenne. Add 1 tbsp medical grade turpentine oil (turpentine is sap from the fir tree) and 1 tbsp rosemary oil for every cup of oil.
* 1 tbsp camphor oil, 1 tbsp peppermint oil, 1 tsp rosemary oil, 1 tbsp juice from fresh grated ginger, 1 tbsp clove oil, 1 tsp eucalyptus oil.
Zeolite and Dr. Cowden's therapy
Zeolite is another substance used as a chelator. What is it? Zeolites are natural minerals formed thousands or even millions of years ago, that work as other chelating agents do, absorbing metals from your system, and drawing them out so your body can eliminate them. When the body's immune system is supported its natural healing mechanisms simply work better.
Dr. Lee Cowden, a renowned physician who treats Lyme patients, and spends much of his time and energy teaching other doctors his method for treating Lyme patients, emphasizes the necessity to detoxify the body of metals in order to thoroughly treat Lyme disease and prevent reinfection. He recommends Zeolite as a chelator. You can now order Zeolite through Nutramedix (http://www.nutramedix.com), the company that offers all of the herbal supplements listed on Dr. Lee Cowden's core protocol for treating Lyme.
Cardamom Treat
For a yummy winter treat that will soothe your tummy and counteract mucus congestion in the lungs and sinuses, core a hard pear, drizzle honey into the opening and sprinkle in a teaspoon of cardamom powder, then bake it at 350 degrees for 25 minutes. Adding cardamom powder to milk and fruit neutralizes the mucus-forming properties.
Ticks carrying lyme disease active in fall
Lyme disease attacks every level of the body, so it makes sense to use a multilevel approach to treatment. While seeking treatment, especially if you are drawn to exercise outside during temperate fall weather, bear in mind that this season is rife with risks for those of us who live in the western US. Adult western ticks are active in the late fall and winter. Many Californians are unaware of the potential for contracting Lyme disease, remaining under the false impression that it doesn't occur on the west coast.
Those who hike, bike and walk in the woods and on the scenic California trails are not the only ones who should be vigilant. Ticks who carry and can transmit Lyme disease can be found in urban and suburban neighborhoods as well as in the mountains and meadows. They are bloodsuckers, dependent on passersby for a living. They aren't picky whether the warm-blooded creature who passes is a dog, a mouse or a human, just as long as they can hop on. Ticks can only move around in about a nine foot circumference on their own. In order to get a warm meal and a ride, the tiny critters -- about the size of the period at the end of this sentence -- climb to the tips of grasses, waving their legs and waiting. You are wise to consider seeking treatment for Lyme disease if you suspect a tick bite, and have any of the common symptoms associated with the illness, such as fever, overwhelming fatigue, skin rash, and joint stiffness. Seeking early treatments for Lyme disease raises your success level in dealing with, and healing from, this serious bacterial infection.
Healing Lyme Disease with Art
I called an artist friend, and she corroborated my suspicion. Art, or to be specific, any creative act, heals. Those few precious pain-free moments saved me. Eventually, the moments stretched out and now I live without pain. Looking back, I recognize that the full-on concentration I poured into that small art project created a break in the pattern of stress and pain that had become part of my moment-to-moment experience of living.
Stress is a big challenge when you're healing any serious or chronic disease, and Lyme patients must learn strategies for coping with it in a positive way. It's not as if stress is going to go away -- as everyone knows, it's a natural part of living. Out of despair at the realization that he could not heal me, and that he must accept the fact that I had to heal myself, my partner brought home paints and paintbrushes. I have a background in art, and yet until it was a life or death situation, I had no clue how the practice of painting -- of focusing on one simple creative act -- could help me begin to heal. So how do you deal with it?
One smart way to get a handle on stress is to cultivate a regular meditation practice. Sitting down, calming your mind, and focusing on your breath is something you can (usually) handle even when you're sick. It is a challenge to meditate when you're scared, or in pain, or when a coherent thought can't easily navigate your brain fog. But meditation needn't be long or grueling. Shoot for short sessions. Even sitting and clearing your mind for one minute is helpful, if that's all you can muster. Try going for five minutes next time, fifteen the next. One or two times a day has been proven to help the mind to learn more quickly, and integrate new information more efficiently. You don't have to follow any specific format in order to benefit from meditation practice. You can paint, like I did. Some people merely focus on their breath moving in and out. When the mind wanders, as minds will do, simply become aware of this fact and gently bring the focus back to the breath. This type of focus can't be underrated in terms of helping you get off of the pain train, even momentarily.
Common mistakes in diagnosing and treatment
Herbal protocols for Lyme
Many people are finding that these herbal tinctures are safer to use and more effective than antibiotics, with the benefit of not having side effects. Dr. Cowden believes that detoxification of the body is just as important in long-term healing as finding and following a protocol that works.
Treatment of Lyme and CFS with Samento
Definitive Lyme test and Samento
Dr. JoAnne Whitaker, Eleanor Fort and Lida Mattmann, PhD, have patented one. The Q-RiBb, which tests for antigens instead of antibodies is definitive because it locates actual Lyme bacteria in the body. Through the Bowen Research Lab in Florida, these physician/researchers have tested hundreds of people and found Lyme bacteria to be the cause of numerous misdiagnoses, among them MS, ALS, Parkinson's disease, fibromyalgia, CFIDS, rheumatoid arthritis and cardiac arrythmias. Dr. Whitaker has reason to suspect that Lyme is a pandemic that is being repressed by the medical-industrial complex.
People who have been misdiagnosed and subsequently treated for Lyme disease are getting well. The Lyme pathogen is hardy, tenacious and difficult to kill, but medical doctors with the courage to help their patients heal are finding holistic protocols that work. Samento, Cumanda and other Peruvian herbs, which have only become available in the US since 2001, are rising in popularity among the Lyme population, many of whom are quite sophisticated in finding ways to heal from a disease that the conventional medical community is too frightened to acknowledge.
For information about Samento and Cumanda, click here
Click here to join the LDRD and listen to our interview with Dr. Joanne Whitaker and many other Lyme literate physicians
Healing lyme with herbs
The spirochetes are scavengers. They're adept at feasting off of their host and creating endless suffering from eating in their "favorite restaurants," as Stephen Harrod Buhner says: our knees, our skin, our hearts. In his book, this master herbalist and psychotherapist who writes about sacred plant medicine gives a keenly intelligent overview on Lyme disease, offers a core protocol for healing Lyme, and goes into detail about the many herbs that have acted as potent healers across time and tradition. His unique protocol is being followed by patients and physicians alike, either in conjunction with antibiotics or alone.
Stephen writes cogent and in-depth explanations about this natural healing protocol. He generously agreed to take part in the unique "Conversations with Experts" special feature on the LDRD website. Do yourself a favor: Listen to my interview with Stephen here.
On the horns of an abx dilemma.
If you're one of those people who never experienced Lyme disease symptoms until the stress of a life-changing event set it off, you may have been given abx long after you caught the bug. Are your chances of healing from Lyme now reduced? What are the alternatives to abx, and why should we give them a chance?
Read entire article here.
Qigong and Lyme Disease
You can practice these gentle exercises by yourself in your living room, or maybe you're the type of person who needs the support and camaraderie of a group. Figure out what feels right to you, then just set your mind to following a routine. Dedicate yourself to healing. Asians have used these exercises for over 5,000 years to maintain health in mind, body and spirit. Qigong is only one form of exercise that you can do to help alleviate stress, increase your blood circulation, and calm your mind. I find that Qigong, like yoga, helps calm my mind. I recognize that I'm dealing with a serious illness that has changed my life, my relationships and my daily routines in every way. Anxiety is a natural result of all these changes. Anxiety arises when I feel my healing going two steps forward, one step back. A daily routine of calm and focused physical exercise helps me release the fears and find balance, literally and metaphorically.
Learn more abour exercise and it's effects on Lyme disease as a member.
Expiration dates count.
When searching online for good information on Lyme, it's crucial to keep in mind that medical research is dynamic and ongoing. This disease is a highly underrated epidemic, and the physicians who test their patients for it and diagnose it are not always able to publish about their results immediately. Old and out-of-date information about this disease seems to be prevalent on the web. Yet cutting edge information is available for those who are careful to critically screen the quality of information they find.
Screening out noisy rubble and finding good information about Lyme is like panning for gold. Many websites are helpful, some more than others. Some websites were once relevant, but now they're outdated. Look for the most updated discoveries to find what you need to know. This evening, I was reading through the site of a popular health advocate I once met and whose products I have used, to my great satisfaction. Her website, however, was stacked with information about Lyme disease that dates back to 1996. Over just the past year or two, the discoveries about new, successful treatments for Lyme are hopeful and deeply encouraging, but a person reading this health advocate's site would never get that impression. So watch the expiration date on the information you take to heart. Lyme patients find out quickly that it is to their advantage to get quality and timely research.