Bulletin Board: Legal and Medical

Mycoplasma: An Unsuspected Intruder

A great deal of attention is currently focused on the role of Mycoplasma in GWS, CFS and FM. What is Mycoplasma? It is the smallest, most primitive class of bacteria. While it is not new, scientists have recently discovered altered forms that are much more invasive and difficult to find. Because Mycoplasma does not have cell walls, it can invade tissues and penetrate deep inside the white blood cells, allowing it to hide from the immune system. The various species of Mycoplasma are systemic, meaning they can invade all the tissues and organs of the body, causing a variety of complex symptoms. Mycoplasma species are considered important emerging pathogens in CFS, FM, GWS, HIV, Rheumatoid Arthritis, and other chronic illnesses.

What role does Mycoplasma play in CFS, FM, and GWS? In a few people, Mycoplasma may be the cause of all symptoms, and treatment may lead to full recovery. However, most researchers believe that the various Mycoplasma species are either a cofactor (not causative but important), or an opportunistic infection that flourishes in immune-compromised patients.

How can it be detected? Because Mycoplasma species can't be easily cultivated in vitro, conventional antibody testing can't identify them. A new, very sensitive testing method known as forensic polymerase chain reaction (PCR) has been developed by Immunosciences Lab (http://www.immuno-sci-lab.com/). The Department of Veterans Affairs has recently awarded a government contract to this lab to conduct a study on the treatment of Gulf War Veterans who are positive for Mycoplasma. Garth Nicholson, Ph.D., who pioneered the research on Mycoplasma in GWS, has opened his own lab, International Molecular Diagnostics (http://www.immed.org/). Dr. Cheney uses Nicholson's lab to test for Mycoplasma and Chlamydia Pnuemoniae. Nicholson's lab uses PCR and nucleoprotein gene tracking, and now accepts insurance. Our group leader was tested for 4 species of Mycoplasma by Nicholson's lab, which cost $250. Her insurance excluded none of the charges. (She was negative, by the way.)

How prevalent is it? Mycoplasma bacterial infections occur in less than 10% of healthy controls, but the numbers vary for patient populations. Dr. Cheney states that 35% of CFS patients are positive for some form of Mycoplasma. One study found that 52% of CFS patients had Mycoplasma. Nicholson states that Mycoplasma occurs in about 60% of CFS patients, 70% of FM, and 50% of GWS. Interestingly, none of the healthy controls had multiple infections, but the majority of CFS and FM patients who had Mycoplasma had more than one species. Double infections were found in 30.8% and triple infections in 22%.

How is it treated? The traditional approach involves long-term antibiotic therapy. Because of the intracellular locations of these microorganisms, an extensive and rigorous course is recommended. The protocol used by Nicholson calls for six-week cycles of doxycycline (200-300 mg/day), ciprofloxacin or Cipro (1,500 mg/day), azithromycin or Zithromac (500 mg/day), or clarithromycin or Biamax (750-1000 mg/day). Multiple cycles are required, often for an 18-month period. Initially, patients usually feel worse due to the release of toxins from the damaged microorganisms. Then they gradually stabilize and slowly begin to recover. Nicholson comments that patients are likely to have nutritional deficiencies and have absorption problems, requiring the use of significant vitamin and mineral supplementation. Such supplements cannot be taken with the antibiotics because they inhibit antibiotic uptake. He also states that antibiotics deplete normal bacteria in the gastrointestinal system, and probiotic replacement is essential. Your doctor can contact Dr. Nicolson at 714 903-2900 or 714 379-2082 (fax).

What is the prognosis? Nicholson states that a majority of patients benefit from antibiotic therapy and experience some alleviation of symptoms, but do not fully recover. Other doctors, such as Cheney, have concerns about the effects of long-term antibiotics on those whose gastrointestinal flora is already compromised. See the "whey article" (Lini is not currently active) for an alternative treatment approach.

A great deal of information and links to many other sites can be found at http://www.cfsinform.dk/ (Link is not currently active), and at the lab sites mentioned above.

Sources: http://www.cfsinform.dk/ (Link is not curently active), Co-cure posts, and the Sept/Oct 1999 issue of The CFIDS Chronicle published by The CFIDS Association, of America, 800-442-3437, PO Box 220398, Charlotte NC 28222-0398, http://www.cfids.org/.

Outraged At The NIH

The National Institutes of Health (NIH) held an internal State of the Science Consultation on CFIDS February 6 & 7. In the weeks prior to the meeting a storm of controversy arose. Why all the fury?

Several years ago Congress chartered the CFS Coordinating Committee (CFSCC) to oversee all CFS government programs. Its members include patients, advocates, researchers, and representatives of various health agencies. Last April this committee asked the NIH to hold a State of the Science meeting on CFS, which would influence policy and determine research priorities for years. The NIH scheduled one for the fall. It was later canceled.

To the shock of the CFSCC and the CFS community, in January it came out that officials at the NIH had scheduled a virtually secret State of the Science meeting. The CFSCC was not involved in the planning, no CFS clinicians were invited, and no one from the CFS community would be allowed to observe! Even the researchers on the CFSCC were excluded. The four CFS experts selected by the NIH (three psychiatrists, two from the UK) all believe CFS is a form of psychiatric illness. One advocate (Jon Sterling) said the meeting would have set us back to 1991 in terms of policy and research.

Due to the outcry from the CFSCC and the CFS community, more experts were invited, a few patients allowed to speak, observers were permitted, and it was considered a consultation. A full NIH State of the Science meeting is now being planned with CFSCC and patient input.

Opinions vary on the outcome of the meeting. Some feel it was fairly successful, others less so. The scientists identified the following as research priorities: a biological test; associated pathogens; endocrine, antiviral, immune, HPA, and brain abnormalities; sleep and exercise problems; & testing of treatments.

Sources: Co-Cure posts, and the Winter 2000 issue of The CFIDS Chronicle, published by the CFIDS Assoc. of America, 800-442-3437, PO Box 220398, Charlotte NC 28222-0398. OI: Genetic Defect Found

Researchers have identified the first genetic defect in Orthostatic Intolerance - a mutation that cripples the norepinephrine transporter. This may lead to new understanding of blood pressure control and how extreme fluctuations in blood pressure can cause irregular heart rhythms. Ortho-static Intolerance and NMH are forms of dysautonomia that can cause the heart to race, nausea, headache, dizziness, even fainting. (New England Journal of Medicine, February 24th) (A Co-cure post.)

Connective Tissue Massage For FMS

Researchers evaluated the effectiveness of connective tissue massage in the treatment of fibromyalgia. A series of 15 treatments were given over 10 weeks to 23 out of 48 FMS patients. The treatment group experienced 37% less pain, reduced the amount of analgesics needed, and experienced less depression. Six months after treatment ceased, 90% of the pain had returned. The authors stated that individuals with FMS ought to be offered connective tissue massage treatment. (Eur J Pain 1999 Jun;3(3):235-244) Co-cure post.

FMS Compared To Lupus

Researchers found that FMS patients reported more impairment in physical function, bodily pain, and vitality than systemic lupus erythematosus patients. The authors concluded that health related quality of life is impaired among women with FMS and SLE, with FMS patients reporting greater impairment. (J of Rheumatology 2000 Feb;27(2):365-72) Thanks to Co-Cure Is Lyme Disease A Factor?

Many CFIDS/FMS patients are testing positive for Lyme with the LUAT test. Lyme could be the cause of some or all of your symptoms, or a perpetuating factor. See http://www.centurytel.net/tjs11/bug/l2.htm for more information. (Co-cure post.)

Breaking Through The Pain

A new pump delivers pain medication directly into the spinal fluid. Dr. Robert Fisher states this is roughly 100-times more effective than oral medications. He believes the future lies in using substances other than narcotics as painkillers. An interview with him is available at http://www.co-cure.org. Click on archives, click on Feb week 3, then click on the seventh article in the Notice section.

New Parasite Found In CFIDS Patients

Dr. Larry Klapow is finding a round-worm called "Cryptostrongylus pulmoniÓ in many CFIDS patients, and has determined that it causes immunological dysfunctions. A transcript of an interview with him can be found at http://www.co-cure.org/. Click on archives, click on Jan week 3, then click on the fourth article listed.

Unrecognized Polio Infection May Cause CFS

Dr. Richard Bruno states that half of all baby-boomers with CFS may in fact have had undiagnosed non-paralytic polio as children. Even a mild poliovirus infection can injure the brain, setting the stage for fatigue to develop later in life. Between 1934 and 1954, the year the polio vaccine was developed, nine outbreaks of CFS occurred at the same time as polio epidemics, or affected the staff at polio hospitals. For the full story go to http://www.co-cure.org. Further down the page click on Co-op archives, click on Jan week 2, then click on the first RES article.

CFS ICD Code to Change

The CDC announced that in 2002 the US diagnostic code for CFS will finally change from General symptoms, malaise and fatigue (780.71) to Other disorders of the brain (G93.3). The World Health Organization has used this designation for CFS since 1992.

Gammaguard Lawsuit

If you or a deceased relative received intravenous Gammagard between Jan 1, 1993 and Feb 24,1994, you may become part of a class action law settlement of claims alleging exposure to and/or infection with Hepatitis C Virus. You may be entitled to free HCV Testing and settlement payments. For information: call tollfree 1-888-921-4776, or write: Settlement Administrator, Gammagard IVIG Settlement, PO Box 131620 Dallas, TX 75313, or visit http://www.hcv-claims.com/. Deadlines: April 24 to receive a free test kit; June 30 to file a claim. Thanks to the National CFIDS Foundation for this info.

Metlife Lawsuit

If you have CFS and Metlife insurance, and have been denied benefits because were told you had mental illness or did not meet the CDC criteria, please contact Carter & Coleman, Attn: Civil Case NO. 99-1528, 602 Cameron Street, Alexandria, VA 22314.

Huge FMS Jury Award

Seattle attorneys Steven Krafchick and Robert Kraft won a $2.372 million verdict against the state of Washington on behalf of a ferry worker disabled with Fibromyalgia after being hurt while working four years ago. It is believed to be the largest jury verdict ever on behalf of a victim inflicted with post-traumatic Fibromyalgia. The story can be found at http://www.geocities.com/HotSprings/Spa/3579/DisabilitynLegalHelp.htm.

Onset After Transfusion?

The National CFIDS Foundation is interested in learning of patients diagnosed with CFS who had an onset after a blood transfusion from 1986 on. If you qualify for this, please e-mail gailronda@aol.com for further information.

Pajama Party Plus

This is a weekend retreat for young women with CFIDS between 15 and 22. It will be held July 21-23 in Saratoga Springs, NY. Expect art, yoga, music, lots of naps and hanging out. Contact dpalmate@empireone.net for more information.

CFIDS Research Info For Your Doctor!

With each quarterly issue of The CFIDS Chronicle, members of The CFIDS Association now receive The CFS Research Review, a separate smaller, newsletter with information on research, diagnosis and treatment of CFS. Each member can select two health care professionals to receive The CFS Research Review at no charge. If you are not already a member, subscribe by calling 704-365-2343. It's $35 annually, and free subscriptions are available to those facing financial hardship.

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Bulletin Board: Legal and Medical

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