Chronic Lyme Disease

Chronic Lyme, a persistent problem

Chronic Lyme disease is the controversial third stage of this multi-stage illness. While medical experts agree that for some, problems and symptoms persist after the standard protocol has been administered. What they don’t agree on is whether these persistent problems should be treated with antibiotics, and for how long. Also in question is the use of the term “chronic.”

According to the
CDC, what many call "chronic Lyme disease," is properly known as "Post-treatment Lyme Disease Syndrome" (PTLDS). Doctors can follow protocol and treat patients who have been diagnosed with early-stage Lyme.

The fact that there is no insurance code for chronic Lyme, or PTLDS, means that many doctors will not treat chronic Lyme with long-term antibiotics.

Dr Lee Cowden, whose Lyme protocol has helped many, including me, agrees about the debilitating effects of long-term antibiotics. Dr Cowden would rather the patient detox and kill the Borrelia bacteria with herbal tinctures such as Cumanda, Samento, Banderol and others which will not punch holes in the gut lining and create problems in addition to the Lyme infection.

Stephen Buhner’s core herbal protocol for Lyme includes Cat’s Claw, Sarsaparilla, Japanese Knotweed and Eleuthero. Stephen is also devoted to helping Lyme patients and his alternative treatments are soundly researched. Many people opt to self-treat with these or other herbal protocols while also still on the doctor-prescribed antibiotics. Stephen has told me that his core protocol will not interfere with standard antibiotic treatment.

My personal approach to treating chronic Lyme, or “late-stage” Lyme as my doctor called it, did include treatment with long-term antibiotics (six months). After that, I embarked on the
Cowden protocol for a couple of years. During that time, I would never have had the stamina to work full-time outside my home. My work as a freelance writer allowed me to keep hours that fit with my quirky schedule of daily napping, frequent breaks, and staying in bed all day when I simply had zippo energy. Talking to sources over the phone, writing propped up on pillows, and a supportive, compassionate partner smoothed the brutal lows and quickened the recovery time.

However, my long healing journey has been successful for one main reason, and it isn’t just afternoon naps or diet or exercise, or love, or even the expensive
Resveratrol that makes the difference -- but all of those do definitely have their place. The real key is a continual re-commitment to healthy living every day, through several daily practices that address and acknowledge these four fundamental areas: my intentions, behaviors, my culture and shared values, and the social systems that play a major, yet somewhat invisible, role in life. I go into further detail about this approach over at 100 Perspectives.

Chronic Lyme or PTLDS will continue to dampen and depress our spirits if left untreated. And long-term antibiotics may not be the answer.




Comments

Chronic Lyme and Antibiotics

Q. Hello,

I am new to Lyme Disease... come from a very holistic background, eat a whole food
organic diet, etc. Will not bore you with details and get to my point.

Any idea on the current train of thought on IV antibiotic treatment for people with
chronic
lyme
? I will also be taking a holistic approach, but am also trying to get the latest info on
antibiotic treatment before my visit with the infectious disease md.

Thank you!

A. Thanks so much for your question. I get where you're coming from, as I've always
been a health-foodie myself. Lyme blindsided me too. Through diligent attention to
my
cross-training approach -- including body, mind, spirit and shadow practices daily
-- I am completely well. And I was almost dead. Sounds dramatic, but it's true.

Your question is specifically about IV treatment for chronic Lyme, and I'll tell you,
it's a complicated answer. For one thing, the term "
chronic Lyme" is not a condition
widely agreed upon in the medical world. Whether or not a chronic state of Lyme
disease exists seems to completely depend on whom you ask. Doctors are people
and people have their biases. I noticed recently that the
CDC has changed their
information on their website to reflect that there is a condition which they say is more
properly called “Post-Lyme disease Syndrome,” or PTLDS. The article states that the
cause of PTLDS is as yet unknown.

My bias is to go with a cross-training approach, which I have laid out on our website.
This is what we call "
100 Perspectives," which is the way I think about my practices,
the body, mind, spirit and shadow practices that I mentioned. Please read about it
and see what you think.

The notion of long-term
antibiotics (IV and/or oral) is hotly debated. Although I
know that some are grateful for antibiotics long-term, I am also a huge proponent of
attacking the bacteria from every angle. The daily practices are not simply tacked on
to my life, they’re central to it. This is what has worked for me.

Dr. Lee Cowden, whom I've interviewed several times, is a worldwide expert on Lyme
treatment. He's not pro-antibiotics for the long-term. He sees that they can cause
worse problems than the Lyme bacteria can for the intestines. He is in favor of long-
term herbal tinctures, which do not damage the intestines when used as directed in
his protocol. His protocol worked for me as well. We need to bear in mind that the
intestines play a major role in our immune system, so Dr. Cowden’s message is a
significant note of caution, in my opinion.

I suggest that you listen to the
audio interviews on our website that feature Dr.
Cowden. (Many are free for the public to access - go to our blog and do a search.)
He will teach you so much and give you a lot of food for thought, all very positive.


All my very best to you on your healing journey,
Suzanne

Here's more information about Dr. Cowden and the
Cowden protocol.


Comments

Diet as medicine. Go gluten-free or not?

Lyme Disease and the autoimmune condition which is refer to as Chronic, or Post- Lyme share some symptoms with Celiac Disease (CD), which is at the heart of the current shift in the US towards gluten-free foods. In about one percent of the population worldwide, gluten causes damage to the walls of the small intestine, resulting in gastrointestinal problems, malnutrition, and manifesting in various symptoms, including skin rashes, serious fatigue and weight loss.

Very little is known about CD, however but there is a growing awareness, which is why, over the past five years, we are seeing more gluten-free (GF) choices in the grocery stores. To a person with Lyme disease, this scenario, an autoimmune disease with vast, murky symptoms and not a lot of clarity about
treatment, probably seems vaguely familiar.

The leading US specialist in CD, Peter Green, MD at Columbia University, recommends that people suspected of having gluten-sensitivities not quit eating foods containing gluten until they are properly tested and diagnosed. This is because withdrawing from foods with gluten will change the test results. However, as there is currently no other treatment available for people with CD or non-Celiac gluten sensitivity, the
treatment consists of eliminating all sources of gluten-containing foods from the diet.

But there's a catch-22 in that logic. Do you feel better when you don't eat foods containing gluten? I do, I don't feel as puffy, which I guess is the way inflammation in the gut feels. Would you go back to including gluten in your diet just so your intestinal biopsy proves that you have a definite sensitivity to it? I'm not sure I'd do that. And if you did go back to eating it, and you were diagnosed with CD, then you'd be put on a treatment that consists of not eating gluten.

Evidently, the US is behind the UK and Italy and other countries in its knowledge of CD.  According to a 2011 interview with Dr. Green published on
Delight Gluten Free Magazine online, in England, people with CD are part of a program that enables them to have gluten-free foods delivered to their home. This “food as medicine” is also a tax write-off because it is part of a subscribed treatment for their illness.

I write about nutrition and a healthy, whole foods, Lyme disease diet, and whenever I pay for my fresh organic groceries I often think how nice it would be if I could write off a meaty percentage of that food, since it is a central element of my ongoing treatment.

What do you think? Let's talk about it.

Comments

Detox diet and chronic Lyme

The trick with any Lyme treatment is that detoxing will almost certainly bring on a Herxheimer reaction, referred to quite generously by some as a healing crisis. As anyone who’s experienced a Herx knows, it can be as bad as or worse than the Lyme symptoms themselves. Personally, I find it impossible to tell the difference.

What is a Herx? The Herx occurs when the Lyme bacterial complex dies from an attack by antibiotics or other means, and releases toxins that signal reactions from the body’s immune system. Herxing can be triggered at a number of points throughout the healing process.

Detoxification, once the catch-word of glitzy drug rehab centers, is now more or less a Hollywood cliche. Almost every health & beauty magazine or website promotes a different detox diet that in theory will cleanse your body of toxins that assault it every day: smog, sugar, alcohol, pesticides and artificial sweeteners. If you suffer from a chronic condition such as post-Lyme syndrome or chronic Lyme, proponents of detox diets say you’ll benefit from periodic cleansing.

Current, popular ways to cleanse include the ‘Master Cleanse’ which consists primarily of drinking lemon, water and maple syrup. Many consider fresh raw vegetable juices a healthy basis for a good detox diet that can help people slim down while infusing the body with necessary enzymes and other rich nutrients. These types of diets are believed by some to boost the body’s elimination mechanisms through internal cleaning.

However, there may be no scientific basis for cleansing diets. Dr. Peter Pressman of Cedars-Sinai Medical Center in Los Angeles states that the body’s multiple systems, such as the liver, kidneys, and GI tract, already do a perfectly good job of cleansing the body and eliminating toxins. He claims there is no evidence to suggest that detox diets improve the body’s natural mechanisms.

Lyme patients must be vigilant about popular trends. Changing your diet or engaging in something radical such as a juice fast might even be a bad idea, especially if you are on antibiotics or some other Lyme treatment. Always discuss with your Lyme doctor or medical team before changing your diet. Cleansing can be dicey for people with active Lyme disease symptoms. The cleanse may trigger a Herxheimer reaction which would affect the body’s immune system.

Whether you think colon cleansing is good and necessary or not, we can all agree that keeping things moving is best. By drinking lots of filtered water and eating foods that help prevent or relieve constipation, we can do our best to ensure that our body is able to eliminate the toxins from the Lyme bacteria as well as the meds, while undergoing Lyme treatment and post treatment. Be sure to drink about 8 glasses of water daily, as it helps digest the fiber, as well as softens and adds bulk to the stool. When I am experiencing a Herx, I drink extra water and it always seems to give me relief, almost immediately.

What are the best foods for preventing or relieving constipation?

High-fiber foods such as barley, quinoa, brown rice are helpful. So are flaxseeds, beans, lentils, artichokes, sweet potatoes, pears and green peas. If you’re avoiding gluten, don’t eat wheats, barley or rye. Quinoa makes a great breakfast cereal.  I add a little coconut oil, stevia and cinnamon, and toss on a teaspoon of flaxseed for good measure. And of course steel cut oats that are gluten free are highly recommended in a healthy Lyme diet, because they’re so good for our skin in addition to their fiber-rich content. We should be eating about 20 - 35 grams of fiber per day, according to the NIH.

Additionally, people with a magnesium deficiency are found to be at greater risk for constipation, so include plenty of magnesium-rich sources in your healing Lyme diet. Nuts such as almonds and cashews are high in magnesium, as are baked potatoes in their “jackets” as my mom used to say.

Refined or processed foods such as white bread, white rice, and white pasta are not your friends if you want to promote pooping. In addition, ice cream, cheeses and meats are high in fat and will work against you in your quest for a good bowel movement. Cut these processed and sugary foods out of your diet and replace them with high quality, high fiber foods. You’ll begin to see and feel the difference.

For now, we may not have the answer to healing chronic Lyme, but in my experience, my quality of life -- and the amount of energy I have for living -- increases immensely the more I shift my diet into the healthy zone. Over the years, each and every person I’ve interviewed for our Lyme Success Stories series has also told a remarkable tale of having healed more quickly after making healthy changes to their diet.

Comments

Diagnosis and treatment of Babesia & other coinfections

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

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

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

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

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

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

Comments

More good reasons to go wheat-free

More good reasons to go wheat-free

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

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

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

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

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

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

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

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


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Genomes of 13 strains Lyme bugs mapped

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

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

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

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

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

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

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

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

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

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

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

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

This year, change your mind.
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I'm Dreaming of a Healthy Christmas...

Just like the ones I used to know.

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

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

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

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

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

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

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

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

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

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

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

Dr. Burrascano's bullet list for chronic Lyme:

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

* This post was modified by the editor on 11.24.10.

Comments

Have Lyme? Have patience.

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

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

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

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

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

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

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

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

4.  SLEEP: There's no such thing as too much. Quality deep sleep is a vital part of healing. Lyme causes fractured sleep. Auto CPAP is my all-natural sleep-aid of choice.
 
5.  SUPPLEMENTS/HERBS: Daily support is required to assist the body with balancing nutrients, detoxifying and boosting your immune system.
 
6.  EXERCISE: Thick blood harbors infections and toxins. Daily exercise will keep the blood flowing. Keep it basic for 10-15 mins twice a day (calisthenics, walk, cycling, swim, stair climbs or yoga.)
 

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

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

What is your attitude about winter? How do you stay warm enough and protect your skin? Lyme treatment, especially treating for chronic Lyme disease, is different for for everyone, but there is so much we can learn from each other.
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Wanted: YOU to live a healthy post-Lyme life

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

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

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

When I had Lyme.
When I HAD Lyme
.

Such a lovely phrase! I could sing.

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

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

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

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

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

And maybe you'll plan a trip too!




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Lyme doctor punished for helping children

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

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

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

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

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

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


Please listen to a brief interview with Dr Charles Ray Jones.
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Biotoxins test and chronic Lyme

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

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

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

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

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

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




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Chronic Lyme or not - Get educated



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

The PFCD mission:

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



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

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

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

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

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

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

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

* Truth #6: Many Americans are unaware of the extent to which chronic diseases could be better prevented or managed.



If you consider yourself ill with chronic Lyme disease, one "healthy truth" to embrace is to get better educated about how to manage your illness. I realize that it's the toughest job you can take on, especially while you're sick. Believe me, I know because I've been there. Although the status of "chronic" or "Post-Lyme Syndrome" may not be easily or quickly determined by the policy makers, your health is what counts here.

Get educated about ways to manage your health, such as eating foods that will nurture (organic greens and proteins), not harm you (refined sugar).

LDRD members, login to listen to Lyme experts.
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Chronic Lyme disease is just a name

When I was very sick with chronic Lyme, the scariest thing was not the agonizing pain in my skin and muscles, not that my shin skin had deteriorated into raw meat, and not even that I had trouble walking and could barely talk without stammering.

The scariest thing, the thing that blew my mind was that the infectious disease doctor I turned to for help REFUSED to treat me for Lyme. I had tested positive, yet she stood there shaking her head, insisting that I must have MS instead. She basically blew off the positive Western Blot and ELISA tests.

The doctor breezily observed my skin rash, which had become so severe that I had developed a staph infection that put me in ER, and told me, "You are too late."

Huh? I couldn't think very clearly because of the brain fog, but this response just sounded utterly wrong to me. I was speechless.

She then dashed off a prescription for corticosteroids, which she said was my last hope. I took them, and the Lyme bacteria multiplied rapidly. Needless to say, my condition went from bad to worse.

I was in terrible shape when I staggered up to the window in her clinic and requested my medical files. My legs could barely hold me, and my hands and voice were just as shaky and weak. I had begun seeing a naturopath who advised me to retrieve my records from the ID doctor's office and take them with me. He treated me for Lyme with antibiotics and a host of supplements to support my liver, kidneys, my whole body. He also informed me as gently as he could that Prednisone, the steroids I'd been prescribed, are contra-indicated when the Lyme bacteria is underlying. I must have seemed to him like the walking zombie that I felt like. Looking back, I wonder if he ever thought that I was too late as well.

As it turned out, I was not "too late." I was at the wrong doctor. An ignorant doctor -- one who needs to be educated about Lyme and doesn't even know it. I got better. Lyme symptoms are still a part of my life, and I still watch my health like a hawk. It has been a lot of work, but I'm stubborn and lucky and willing to work hard. I have no doubt that today I'd be very ill, confined to a wheelchair and on permanent disability, if I had listened to that ID doctor. Instead, every day is a miracle. I've achieved some of my wildest dreams, and I share my life with friends and family who are more precious than gold.

Now, of course, I also realize that my story is unfortunately not unusual among people with Lyme.

People who get better, even if it's only 90% better, often turn their heads and never look back. Who can blame them? But I don't want to forget. If it could happen to me, it could happen to anyone I love, my brilliant nieces and nephews, my mother, my life partner, my favorite teachers. More people need to be educated about Lyme, and controversies over what to call it -- whether it's chronic Lyme disease (CDL), or Post Lyme Disease Syndrome (PLDS), stand in the way of the badly-needed education about Lyme. Stephanie, whom I interviewed last week for the LDRD Success Stories series, mentioned she had just completed her degree as a registered nurse one month before she discovered she had Lyme. In her years in medical school, not one course instructor had even mentioned it.

I hope that as more doctors are educated, more will recognize that Lyme is a multi-stage disease, like syphilis (over which there is no controversy), and the controversy over late-stage or chronic Lyme disease will fade. By whatever name you call it.
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$25,000 for Lyme research

I'm pleased to pass along a bright spot of news for chronic Lyme disease sufferers. According to an article in today's MarketWatch, researchers at a biotechnology company were gifted by an anonymous donor with $25,000 towards a new study to try to unlock the mystery of Lyme disease. Why do antibiotics only cure some cases of Lyme?

Researchers at Viral Genetics, Inc., are hoping to answer that question and more.

The article continues:
Research on chronic Lyme Disease, including symptoms related to the central nervous system and arthritis, has generated inconclusive and controversial results. Some researchers contend Lyme is driven by chronic infection and recommend patients be treated with antibiotics for the long term. Others support the hypothesis that the disease is the result of autoimmune T-cell activation that occurs subsequent to the initial infection or after the infection has cleared.

"Our hopes are that the information acquired from this very important study, may act as a bridge between those who contend that Lyme Disease is an active chronic infection and those who feel it is an autoimmune trigger. The answer to this question is of great importance for all those suffering in the Lyme community. Only through this information can we begin to formulate more successful treatment regimens for the chronically ill," said Dr. Steven Harris, co-investigator, Associate Professor Stanford University.
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Chronic Lyme Disease

Chronic Lyme disease is controversial. It is what appears to affect those of us who still suffer from Lyme symptoms after finishing a standard IDSA recommended dosage of antibiotics. In some cases, chronic Lyme manifests in Lyme patients who received antibiotics for treatment, but weren't given a strong enough dose for a long enough time.

Some Lyme symptoms seem almost livable. Tinnitus, for example. Talking from personal experience only, I can live with it. This is not to say that I like it. On the contrary. I'm a classically trained musician, peculiarly sensitive to noise. You know those people who wince at the out-of-tune piano at the community concert? That would be me. I'm not exactly proud of that, just sayin'. So, losing my hearing partially to tinnitus has really sliced into my enjoyment of natural sounds. The tinnitus might go away some day. For now, it sure seems chronic. There are metallic crickets playing at varying volumes inside my head, 24/7.

Other chronic Lyme symptoms are far more serious. For example, medical evidence suggests that rheumatoid arthritis is one result of untreated, or undertreated Lyme disease. As many as 60% of people with untreated Lyme may develop chronic arthritis.

Central nervous problems, such as facial paralysis and meningitis are said to occur in 10 to 20% of people who are undertreated or never treated for Lyme.

Heart symptoms occur in a small percentage of Lyme patients. A jumpy, pounding irregular heart can vary the gamut from being not at all bothersome, to very scary. The jumpiness can occur either because of an infection in the heart, or an electrical conduction that requires the patient have a pacemaker implanted.

Chronic Lyme is controversial because doctors don't all agree that these long-term symptoms of Lyme are indeed still considered Lyme. Whatever you call them, they need to be tended to.

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