CISRA’s Synergy Health Newsletter

Issue 8. Lyme Disease and its Relation to Chronic Fatigue Syndrome, Fibromyalgia, Psychiatric and Rheumatic Diseases (2002)

by J. C. Waterhouse, Ph.D.

Lyme Disease (LD) is a bacterial infection carried by ticks that has been receiving increasing attention among CFS and FMS patients in recent years. It has recently become quite relevant to my own case. I had two tick bites in 1981, and according to a new urine test done by Igenex Laboratory, it appears that Lyme Disease is at least part of the cause of my illness. The standard tests didn’t detect LD and I don’t fit the “classic” case description (e.g. arthritis, a special EM “bullseye” rash, or a facial palsy), which is why it took so long for me to find out that I had it.Many other CFS and fibromyalgia patients from all around the country are apparently also finding out they have LD. It turns out that the classic case description of Lyme Disease was too exclusive and that chronic LD is often indistinguishable from CFS and FM (there is heated debate on Lyme Disease–see below). The other things that have helped me (e.g., guaifenesin and dietary changes/allergen avoidance) are still valid, but I believe LD was a missing piece of the puzzle in my case. Unfortunately, when really entrenched, it can take quite a long time to kill it off entirely. The LD organism is a bacteria (a spirochete called Borrelia burgdorferi) and can affect almost any part of the body, though it particularly affects the nervous system and connective tissue. Sometimes one can feel worse for quite a while before feeling better during the treatment period. But I am hoping that combined with the other treatments that have helped me, I will do better than many who have had it so long.

So far, I have taken doxycycline (400 mg daily) for a month. Then I changed to amoxicillin (1750 mg per day) together with 750 mg flagyl (to kill off the cyst or L-form of the bacteria). I did have some problems with diarrhea, but supplements with Lactobacillus and Bifidobacteria seem to correct this by replacing the normal bacteria in the gut which are killed off as a side effect of the treatment (Nutrition Now’s product PB8 worked for me, whereas two other products with larger amounts of inulin and/or FOS actually made things worse–perhaps because the FOS encouraged the growth of pathogenic bacteria such as Klebsiella). I have recently found out that the base used in PB8, rice maltodextrin, is not as allergenic as whole rice. This means that when I rotate off of rice, I can still take the PB8, and this discovery has been very helpful.

I also have had some greatly increased effects of the guaifenesin at times during antibiotic treatment, which may mean that treating the Lyme Disease will allow the guaifenesin to work better (and perhaps vice versa–the guaifenesin may help the Lyme treatment to work better, by getting rid of lesions with low oxygen levels where the organism might evade antibiotics and the immune system–see past issues of newsletter on the home page on the proper way to use Dr. St. Amand’s fibromyalgia protocol using guaifenesin). Reducing allergies has also correlated with greater guaifenesin activity as measured by the specks and cloudiness in my urine and reversal symptoms.

The Lyme Disease Controversy

There is quite a lot of controversy surrounding Lyme Disease (LD) , which may surprise some who aren’t familiar with it. There are two camps. The mainstream camp, endorsed by insurance companies, some academics and the CDC, claims that LD is mainly found in the Northeast , Midwest and Northern California, is fairly easy to diagnose, and only requires 2 to 4 weeks of antibiotics to treat in most cases.

The other LD camp is comprised of patient support groups, researchers and doctors who contend that LD is about 10 times more common than currently estimated by the CDC. This underestimation is said to be due to the inadequacy of the commonly used blood tests and symptom criteria that are too restrictive. Due to this problem in diagnosing the disease, many people go for years and even decades without diagnosis. Some who are diagnosed and treated do not recover with short term antibiotics. Many patients and doctors with direct experience have found that long term treatment with antibiotics, use of combinations of antibiotics and/or use of intravenous antibiotics bring recovery or improvement to patients who were previously written off. Another complicating factor is that there are several hundred strains of the bacteria, which probably accounts for some of the failures to diagnose and differing treatment responses. Some believe several autoimmune illnesses and some cases of panic disorder and other neurological and psychiatric diseases may be connected to LD. There have clearly been some treatable LD cases with severe psychiatric symptoms. The rest of what I write is from the viewpoint of this latter camp, mixed with my own views.

Apparently, many people with bad allergies and MCS find that their food and chemical sensitivities improved greatly after being treated for Lyme (I have heard from others that this is also true with regard to Mycoplasma infection treatment). I have also read that sometimes a chronic viral infection may follow an initial Lyme infection. Thus, the progression may go from Lyme or Mycoplasma to worse allergy/sensitivity to immune imbalance and then maybe a viral infection. And, I believe the first thing in many people, even before the LD, may be an initial pre-fibromyalgia due to excess dietary phosphate perhaps combined with chemicals and other unnatural modern additions to our diet that cause immune sensitivities and vulnerability to infection (perhaps including foods that our particular ancestors had never been exposed to previously because they were from a different continent– which points to many of the most common allergens, like peanuts, cola, corn, coffee, soy, potatoes, garlic from the perspective of a European–see Issue 4 on pre fibromyalgia). I think this was the case for myself.

Lyme Disease Testing

If you decide to do a Lyme test, I would suggest the Igenex urine LDA (you and your doctor may want to consider trying the test after 5 days of antibiotics, as described in an Igenex handout that Dr. Burrascano wrote). I believe this test to be the most sensitive. Of course, a good serum Western blot for LD might be best to try first, since it is more widely accepted and insurance may be more likely to cover it. They may insist on doing a Lyme ELISA test first, but many think this test is not very sensitive and is not really worthwhile. But if the ELISA and Western blot serum tests are negative, as mine were, I would suggest proceeding to the Igenex urine LDA test. If this test is negative, you may still have Lyme, since even this test does not catch all cases. If the test results are positive for Lyme, then antibiotics, such as doxycycline or amoxicillin are the drugs usually tried first (if you suspect you may also have Mycoplasma, doxycycline is the better choice since it also kills Mycoplasma, as well as Ehrlichea, another tick-borne disease).

Though not yet widely accepted by mainstream doctors, I have a positive view of Igenex tests, especially the newer LDA, which is usually confirmed with another test, either PCR or RWB. For more information, see www.Igenex.com or call them for a free information packet (800/832-3200). I also like the Lyme Times newsletter (to subscribe, send $30.00 to CALDA at P.O. Box 707, Weaverville, CA 96093, or see www.lymetimes.org). Quite a bit of research is being done, both here and in Europe, and hopefully some of the controversy will be resolved in the coming years. For more information on research, treatment and support groups, a good place to start is the list of links at the Igenex.com web site. The Lyme Disease Association and its associated regional affiliates can help you find a doctor who is more knowledgeable about Igenex lab tests and long term treatment for chronic LD (888-366-6611). You might also be interested in a related site, www.chronicneurotoxins.com, for a visual contrast sensitivity test (VCS) and information on treatment with cholestyramine to remove a suspected neurotoxin thought to be produced by the LD organism.

Apparently people are getting Lyme all around the country, including in Southern California, particularly in the foothills and mountains and other natural areas (even near Malibu). Apparently many CFIDS and FMS patients have been testing positive and never knew they were bitten by a tick. The CFIDS Chronicle has done articles on Lyme and other infections, so that is another sign of the new attention being paid to this disease. Apparently, many are bitten by very young ticks (the nymph stage), which are the size of poppy seeds. The bites do not typically produce pain or itch and may never be seen.

For people who have negative reactions to antibiotics, they still might want to consider Lyme Disease as a factor. It may be their reaction to the antibiotics is actually a Lyme die-off reaction (Herxheimer reaction). If it is a true antibiotic allergy, it may be that allergy desensitization or another antibiotic can work. One can also try a test for delayed sensitivities (non-IgE) to antibiotics by doing the ALCAT test (see www.alcat.com, phone: 800-881-AMTL). If you must pay for antibiotics yourself, better prices can be obtained from Consumers Discount Drug, 888-272-9834. Even better prices can be obtained from a Canadian Internet web site (as low as 1/3 of U.S. prices for brand name Minocin, see www.canadianmedsusa.com), but it requires some additional paperwork and a 2-3 week initial delay.

Other Infectious Causes of Chronic Diseases

There is a growing trend toward finding roles for infectious agents in various diseases. For instance, I just heard on National Public Radio’s program “Talk of the Nation Science Friday” (Aug. 2, 2002) a discussion of the new book, Secret Agents: The Menace of Emerging Infections , by Madeline Drexler. The author mentioned that in one chapter she discusses the increasing evidence for infectious causes for heart disease, autoimmune conditions, like diabetes and multiple sclerosis and even mental disorders like schizophrenia. The Road Back Foundation (www.roadback.org, phone: 614-227-1556– their antibiotic protocol will be sent to you free on request, and there is a suggested donation of $12 for a subscription to their newsletter) and another group at www.rheumatic.org have information on the growing published scientific research on the treatment of many autoimmune conditions with antibiotics. You can also consult the book, The New Arthritis Breakthrough by Henry Scammell, which discusses the antibiotic approach and lists many studies. Mycoplasma, as well as other organisms are thought to play important roles and antibiotics are being found to cure or greatly reduce symptoms over time. In fact, the head of Harvard’s Rheumatology department, Dr. D.E. Trentham has already published NIH funded research in this area and is starting a new study using the antibiotic Minocin to treat rheumatoid arthritis. Studies show antibiotics have also effectively treated scleroderma. 

Editorial Note (2005) Although the above information is still largely accurate, I did not improve significantly after 2 years of the type of approach discussed in this 2002 article, including using tinidazole and high doses of combinations of orals drugs, like Zithromax and minocycline. Therefore, I have written a 2005 update, to discuss what has helped me more recently: Some Promising New Approaches to Lyme Disease and Other Related Chronic Illnesses.

Editorial Note (2008):  Also see, Issue 9. Marshall Protocol for Laymen (2006) for information on an effective treatment for Lyme and many other inflammatory and autoimmune diseases and Issue 10. MP NewsIssue 10. Improvement Rates on the Marshall Protocol: Data and Case Histories, as well as http://bacteriality.com.

Written by synergyhn

October 29, 2008 at 1:36 am

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