Lyme Disease Research Database Independent reporting on all aspects of Lyme Disease

borrelia bacteria

Lyme Success Story! Treating every angle

Not too long ago, Jerry was preoccupied with his professional responsibilities and other commitments. Resolutely running the treadmill, he pursued his multiple roles as a husband, father and self-described Type A quite unconsciously.  But around May of 2010, he began “to feel really crummy.”  Not merely tired from work, he was exhausted. He ached all over, his glands were swollen and painful, he suffered headaches and disturbing muscle twitches.

At first he brushed it off as a bad flu and continued on his daily routines. He did not have a bull’s eye rash.  But then his symptoms took a turn for the worse, the muscle twitches increased and he felt he was losing control. He decided it was time to get tested for Lyme. The result was negative. However, test results were positive for an infection that typically accompanies Lyme: Ehrlichia. Antibiotic treatment began but he continued to feel worse, even taking Doxycycline. At that point, he took the initiative to search out a doctor in Minnesota who specialized in Lyme and could really help him.

Jerry found Dr. Karen Vrchota. She sent his blood to be tested by IGenEx, in Palo Alto, California. In addition to three co-infections, Ehrlichia, Bartonella and Babesia, Jerry was positively diagnosed with Lyme.  She recommended further treatment including some of Dr. Cowden’s protocol, such as Samento, Burbur and Parsley tinctures.

As Jerry worked with Dr. Vrchota, he branched out to discover many more proactive methods that would allow him to feel in charge of his own therapy. He realized that truly healing from Lyme disease demanded coming at it from every angle, not simply by taking antibiotics and herbal medicines. At the suggestion of Dr. Cowden, he focused on getting rid of the mercury, aluminum and other heavy metal poisons and toxins in his system. He adopted a new approach to exercise and nutrition. Following the advice of Dr. Burrascano, he began cardio as well as strength training exercises. He talks about the difference he began to feel as he focused on heating up the blood and getting it flowing. Spirochetes hate heat and cannot survive it. Therefore, physical exercise is super important to include in a Lyme disease protocol.

In his search for wellness, he has been seeking advice from experts in many fields, psychological as well as physical, spiritual as well as emotional. He feels confident that he’s now about 95% healed, and is eager to reach out and help others facing similar health challenges.

Over the past couple years, Lyme disease has become one of Jerry’s greatest teachers. He has rediscovered the simple joys -- tossing a ball with his kids, slowing down each day to practice mindfulness meditation and noticing life’s small blessings.

Hearing him tell his story, it’s easy to see that this once-Type-A person has a loving and generous heart.  You can sense that something in his nature has softened and profoundly changed and evolved.  He talked movingly about how he is now deeply committed to “giving something back,” and I’m really pleased to be able to share our recent conversation in our Lyme Success Stories series. You’ll hear him discuss the challenges he faced in getting properly diagnosed, his treatments, protocols, exercise routines, and the doctors and other experts who are guiding him as he turns his life around.  

Jerry has redefined the meaning of success in his life and feels endless gratitude for the things we tend to take too easily for granted. By approaching Lyme disease comprehensively and from every angle, his healing is happening on many levels of his life. Yours can too.

For additional information on healing Lyme from every angle, see Beat Lyme!

Join to listen to the interview.
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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.

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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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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.

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Samento & Banderol found significantly effective in Lyme treatment

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

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

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

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

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



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Trust your doctor. Or not?

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

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

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

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

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

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

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

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

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

Inflammation is an immune system response to stress and toxins. Our bodies deal with Lyme infection by sending more blood to the irritated areas. The main features of inflammation are redness, swelling and pain.

It's difficult to eliminate the borrelia bacteria, so inflammation results, causing pain and wrecking all sorts of other havoc. On top of that, we must deal with the psychological or physical stress caused by the pain. And aside from the toxins that accompany and make up the borrelia bacterial complex, dealing with environmental toxins is generally a daily effort.

Antibiotics and herbal protocols are excellent help, but what else can be done about inflammation? This is where some people with chronic illnesses turn a critical eye on their diet and nutrition. And many claim that an anti-inflammatory diet can be a huge help in maximizing their healing protocols and helping to alleviate the intensity of Lyme symptoms and flaring herxes.

So, you're starting to feel a little normal after such a long fight with Lyme. Don't surrender to that deep dish cheese pizza! (Of course, a little treat now and then does the body good.) Steam delicious veggies instead, such as Swiss chard, kale, or mustard greens. Fix organic brown rice or rice noodles to go with them. If you can tolerate it, a bite of organic dark chocolate can make a yummy dessert.

Watch this blog for interviews with nutritionists and herbalists who work with Lyme patients, and delectable recipes for an anti-inflammatory diet. Remember, you don't have to change the way you eat forever -- you just have to give your body a break for a while, so your immune system response can strengthen. Eliminating foods made with wheat and dairy -- or at least, limiting them -- may boost your energy and reduce inflammation and pain.
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Treatment of Lyme and CFS with Samento

Medical research reveals Lyme disease and Chronic Fatigue Syndrome to share not only similar symptoms, but in some cases identical gene expression as well. In my conversation with Dr. Andrew Wright of the UK, he said he thinks that CFS is caused by a bacterial infection, and in many cases it seems to be the same bacteria, Borrelia, that is at the root of Lyme disease. He discussed the success of Samento, his preferred treatment of both illnesses, and his desire for more medical studies to be conducted on the long-term treatment of Lyme and CFS with herbal antimicrobials. As Samento has no effects, is safe and more well-tolerated than antibiotics, he says it's his first choice for treatment. Read more here.
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