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 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.
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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.
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Lyme Disease and its Relation to Chronic Fatigue Syndrome, Fibromyalgia,
Psychiatric and Rheumatic Disease
September, 2002 (with June 2005 update)
By J.C. Waterhouse, Ph.D.
Reprint from Chronic Illness Support
and Research Association (CISRA) with permission.
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). 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 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, also 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.
June 2005 Update here
(Disclaimer: This material is intended for information only and is not medical advice.
Consult your health professional for all medical conditions. CISRA is volunteer-run, and neither CISRA nor the
author receive funding from any doctor, lab or manufacturer of any medication or associated products.)
For those who wish to receive occasional free email updates and newsletters from CISRA, send your request to the
Editor at jcwat101@aol.com. For past newsletter articles, see http://members.aol.com/SynergyHN. |
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