While it is still not known what causes CFS, FMS, and MCS, we are hearing of reports that a very high number (75-80%) test positive for a pathogenic form of the organism called Mycoplasma. While there are several species of this organism, most of us have been found to have active infections in our bodies of the Mycoplasma fermentans (incognitus), Mycoplasma penetrans, and Mycoplasma pneumoniae types. These organisms are a pathogenic form of Mycoplasma which are very slow-growing, invasive into deeper parts of the body (i.e., brain, central and peripheral nervous system, muscles and joints, bone marrow, gastrointestinal system, lungs and heart, and the immune system, itself), and are very difficult to treat. These are the same organisms that have been found in AIDS patients and Gulf War Syndrome patients. Those who test positive for active infection with a Mycoplasma are realizing a tremendous improvement &/or recovery in their health with appropriate antibiotic treatment. This treatment is long term (1-2 years of continuous antibiotics). The initial segment of the treatment can be difficult and the continuous antibiotic dose is very harsh on the body. Many people with CFIDS are concerned (and some are even frightened) to take antibiotics for prolonged periods of time. However, years of medical experience in the use of antibiotics to treat chronic infectious conditions such as rheumatic fever, acne, recurrent ear infections, Chronic Obstructive Pulmonary Disease, bronchiectasis, and others, have not revealed any consistent dire consequences as a result of such medications. Indeed, the very real consequences of untreated, chronic persistent infection with Mycoplasma can be far worse than the potential consequences of this treatment. If you begin treatment, it is recommended that you be monitored closely by a knowledgeable physician. If your physician is not familiar with long-term antibiotic therapy, or if he/she is unsure of the pathophysiology of the Mycoplasmas, they are invited to call Dr.'s Garth or Nancy Nicolson (see Resource List). Since this form of treatment is so new for CFS, FMS and MCS, we are all involved in research of a sort. Because of that, we need to keep in touch and share triumphs and problems encountered. And, as we get well, we need to spread the word and help others. If you test positive for the organism, please send the enclosed form to the Mycoplasma Registry (see Resource List). The Mycoplasma Registry is a non-profit organization set up to track those who test positive. They have over 800 in the registry thus far, and have compiled some excellent statistics. Approximately 85% of those in the registry listing come from the CFS, FMS and MCS community! Of course, all listings are confidential. Also, feel free to copy and share any of the papers in this Mycoplasma Packet with others. We are all-different, and will undoubtedly respond differently to the treatment. As with any treatment suggestions given, the information in this packet is intended to help you make informed decisions about your care. It is not intended to take the place of medical advice. Please work closely with your physician to tailor any treatment to your individual needs and differences. Enclosed in this packet are the following: 1. Mycoplasma: A Simple Overview, written by Sharon Briggs 2. Antibiotics Recommended When Indicated for Treatment of Gulf War Illness/CFIDS, written by Garth Nicolson, Ph.D. 3. Additional Considerations When Undergoing Treatment For GWI/CFS/FMS, written by Garth Nicholson, Ph. D. 4. Mycoplasma Treatment Suggestions, written by Sharon Briggs 5. An Overview of My Symptoms and Recovery from CFIDS With Antibiotics, written by Sharon Briggs 6. Mycoplasma Resource List 7. Mycoplasma Registry Form 8. Institute for Molecular Medicine, Blood Test Order and Information Form Any donations to offset the cost and postage of this packet would be greatly appreciated. Sharon Briggs Support Group Leader
MYCOPLASMA: A SIMPLE OVERVIEWFor years we in the CFS/FMS/MCS community have been watching the reports of Gulf War Illness (GWI) knowing, instinctively, that we all had something in common. Not only do we all have common symptoms, but we may also be infected with common pathogenic organisms. That pathogen is a Mycoplasma. Various pathogenic strains have been identified including the fermentans (incognitus), penetrans, genitalium, hominis, and pneumoniae. And, we may be infected with several of these strains at one time. Following is a simple overview of the information I have gathered about this Mycoplasma pathogen and how it affects us.
How Was Mycoplasma Infection Identified
What Is Mycoplasma?Mycoplasmas are the smallest and simplest organism known. They are not new. They were discovered over 100 years ago and evolved from bacteria. The "garden variety" mycoplasma is not usually associated with severe diseases. (13) However, sometime over the past 30 years, the organism has been altered to become more lethal. The Mycoplasmas found by the Nicolson's, in their lab, contain unusual gene sequences that were probably inserted into the Mycoplasma by a specific laboratory procedure. This discovery has led them to conclude that the new forms of mycoplasma were specifically engineered for germ warfare. (9) In it's laboratory evolution, the Mycoplasmas have became more invasive, more difficult to find, and capable of causing severe diseases in humans. Diseases, like Gulf War Illness, CFS, FMS, MCS, Rheumatoid Arthritis, and AIDS, for instance. The earlier form of Mycoplasma was studied by Dr. Shyh Lo, formerly of Tanox Biosystems, a spin-off biotechnology company from the Baylor College of Medicine, but now affiliated with the Armed Forces Institute of Pathology in Washington D.C. Dr. Lo has been credited with discovering the new pathogenic form of Mycoplasmas, and he currently holds several patents on methods for special handling of the organisms for study and development. (10) In one of his patents (in 1991), Dr. Lo lists the following diseases that are caused by Mycoplasma: HIV infection, AIDS, Aids Related Complex (ARC), Chronic Fatigue Syndrome, Wegener's Disease, Sarcoidosis, Respiratory Distress Syndrome, Kibuchi's Disease, Alzheimer's Disease, and Lupus. (10) In addition, Baseman and Tully have reviewed the literature on the role of Mycoplasmal infections in human disease and have concluded that they are important factors or co-factors in a variety of chronic illnesses. (11) Unlike bacteria, the Mycoplasma has no cell wall. This enables it to invade tissue cells, incorporating the cell's nutrients, and using the cell to replicate itself (much like a retrovirus). (13) When the Mycoplasma breaks out of the cell, it takes a piece of the host cell membrane with it. When the immune system attacks the Mycoplasma, it also gets "turned on" to attacking the host cell. In this way, an autoimmune condition can begin. Autoimmune conditions associated with Mycoplasmas include arthritis, fibromyalgia, myositis, thyroid dysfunction (Hashimoto's or Grave's Diseases), and adrenal dysfunction, signs and symptoms of Lupus, Multiple Sclerosis, Lou Gehrig's Disease. (12) The Mycoplasma organism has the capacity to invade cells, tissues and blood, producing systemic infections in numerous organ systems. According to Dr. Nicholson, it can penetrate the central and peripheral nervous system. Because it has the ability to damage the immune system by invading the natural killer cells (NK cells) of the lymphocytes, it weakens them, reduces their numbers, and renders them susceptible to viral infections, such as Human Herpes Virus 6 (HHV6). (14) (15) (16) It may also explain some of the environmentally sensitive responses that are seen with CFIDS and MCS. Mycoplasma infection can trigger inflammatory cytokine over-production that is commonly seen in CFS/FMS. With the induction of CD-4+ helper cells of the immune system, an over production of cytokines such as Interleukin-1, Interleukin-6 and Tumor Necrosis Factor-alpha occurs. (15)(16)(17) These elevated cytokines have been implicated in the development of many of the CFS/FMS symptoms, including neurological involvement. (19)(20) They can have specific or nonspecific stimulatory or suppressive effects on lymphocytes, as measured by B and T cell activation. (18) In addition, the Mycoplasma infection has immunomodulating effects, activating the hypothalmic-pituitary-adrenal axis. This can cause a cascade of limbic system symptoms characteristic of CFS/FMS. (19) The Mycoplasma is a slow-growing, stealth-type organism that can cause the patient to be very ill. It activates the immune system, then can successfully hide from it within the host immune cells. It can then circulate throughout the body and go wherever a white blood cell can go. It can cause infection deep within any or all organs. It can even cross the blood/brain barrier and cause brain and spinal infection. It has also been known to cross the placental barrier to an unborn fetus. Unless the white blood cell is split open and examined for the evidence of the live organism, it can go undetected for years. Because the organism resides deep within the cells, conventional antibody tests may be relatively useless. (21) The splitting open (fraction) of leukocytes (white blood cells) from a fresh blood sample, with a forensic PCR test is the most accurate way to detect the presence of active infection with a live pathogen. Further gene-tracking techniques perfected by the Nicolson's are even more accurate. (22)
ContagionAlthough the researchers have not clearly established how contagious the Mycoplasmas are, they have made some inferences from the data they have collected. The Mycoplasma organism has been found in the blood and body fluids, spinal fluid, bone marrow, urine, and in the lungs, nose and mouth. The Mycoplasma is reported to be able to survive for two hours outside the body. Of those with Gulf War Illness, 50% of their spouses have contracted the disease and 100% of their children. Several babies have also been known to be born with the disease. Some sort of chemical exposure or immune distress (i.e., auto accident, surgery, cancer) appears to pre-date the onset of illness. Of those with CFS, FMS, and MCS, numerous friends and spouses have the illness, as well as close relatives. So, from the anecdotal reports, it would appear that Mycoplasma is contagious after both casual and intimate contact. This means that the organism may possibly be passed to another through sputum (coughing droplets that contain the organism), saliva, sexual secretions, blood, and urine. The disease is also developing in family pets. If one test positive for any of the Mycoplasmas, in order to safeguard those with whom you have close contact, it would be prudent to do the following: Wash your hands a lot, never share your food or drink with another, wash eating utensils with extremely hot water, keep your hands away from your face, avoid closed-air spaces where air is re-circulated (i.e., offices, airplanes), and use protective sexual practices.
TreatmentIf detected early, the diseases associated with invasive mycoplasmal infections are treatable with long cycles of high-dose antibiotics. (23)(24)(25) Since the organism is a slow-growing, intracellular type with a long life cycle, several, long term courses of antibiotics may be necessary. The infection may need to be treated for several months or years. (The disease is treated much as Lyme's Disease is treated.) If a person is taking antibiotics, the testing will not detect the presence of Mycoplasma in the blood. And, if a person has been taking antibiotics, they must wait for 2-3 months after stopping the antibiotics for the test to be accurate. As yet, we do not know if antibiotics are a cure for Mycoplasma infections. Mycoplasma fermentans (incognitus) has the ability to enter any cell and alter itself, changing its cellular makeup with every cell division. This may make it impossible for readily available antibiotics to clear the body of this organism. (14) What we are hoping for is to cause the organism to be diminished or go dormant until a cure is discovered. To do that, we need to kill as much of the live organisms from our bodies as possible with the antibiotics. Once our white blood cells are free of the infection, then they can become healthier and can, hopefully, do a better job to keep the Mycoplasma under control. This may take several months/years of antibiotic treatment to accomplish. During this time, it is important to not lower the dose or stop taking the antibiotic too early, for a relapse is certain.
Is Treating Mycoplasma Infection
ConclusionInfection with a Mycoplasma organism appears to cause most of the signs and symptoms of CFS/FMS/MCS. It can also account for most of the dysregulation of the immune system and the abnormal immune tests. It seems prudent to be tested for this organism, and if positive, to be treated with the recommended antibiotics. Many of us have been ill for 10-20 years and have spent thousands of dollars on treatments that did nothing. Wouldn't it be a Godsend to have a treatment that worked? The treatment course is long term and often difficult for many. And, while we may not become completely well, there is preliminary evidence that many of us who are taking the antibiotics are improving! It has certainly been a horrible disease for the Gulf War Vets to contract, but for us, the fact that they did has saved many lives in the CFS/FMS/MCS community! References 1. Nicolson, N.L. and Nicolson, G.L., The Isolation, Purification and Analysis of Specific Gene-containing Nucleoproteins and Nucleoprotein Complexes, Methods of Molecular Genetics, 5:281-298 (1994) 2. Nicolson, Garth L., Antibiotics Recommended When Indicated for Treatment of Gulf War Illness/CFIDS, (1996) 3. Nicolson, G.L., and Nicolson, N.L., Chronic Illness of Operation Desert Storm: The Presence of Stealth Microorganisms in Gulf War Veteran's Blood Suggests that Biological Warfare May Have Been Used In Desert Storm, Extraordinary Science, (1995) 4. Nicolson, G.L., Hyman, E., Korenyi-Both, A., Lopez, D.A., Nicolson, N.L., Rea, W., and Urnovitz, H., Progress on Persian Gulf War Illness-Reality and Hypotheses, International Journal of Occupational Medicine and Toxicology, Vol. 4, No.3, pp. 365-370, (1995) 5. Nicolson, G.L., and Nicolson, N.L., Diagnosis and Treatment of Mycoplasmal Infections in Persian Gulf War Illness-CFIDS Patients, International Journal of Occupational Medical Immunology and Toxicology, 5: 69-78 and 83-86, (1996) 6. Nicolson, Garth L & Nicolson, Nancy L., Mycoplasma Infections In Gulf War Illness: Results of a Preliminary Study on the Prevalence of Mycoplasmal Infections in Desert Storm Veterans with Chronic Fatigue and other Symptoms, Presented to the President's Panel on Gulf War Syndrome, Washington, DC, August 14-16, (1995) 7. Schmidt, P., Blanck, R.M., Gulf War Syndrome and CFS, The CFIDS Chronicle, 8:25-27 (1995) 8. Nicolson, G.L. and Nicolson, N.L., Mycoplasma Infections-Diagnosis and Treatment of Gulf War Illness/CFIDS, CFIDS Chronicle, 9 (3): 66-69, (1996) 9. Nicolson, Garth L., Ph.D. and Nicolson, Nancy L.., Ph.D., Summary Of Persian Gulf War Illness Pilot Study On Mycoplasmal Infections In Veterans and Family Members, 1997
10. Lo, Shyh-Ching, Patent # 5215914: Adherent and Invasive Mycoplasma, Patent # 5534413: Adherent and Invasive Mycoplasma, Patent # 5242820: Pathogenic Mycoplasma, Patent #5532134: Mycoplasma Diagnostic Assay, IBM Patent Server Database 11. Baseman, J. and Tully, J, Mycoplasmas: Sophisticated, Reemerging, and Burdened by their Notoriety, Emerging Infectious Diseases, 1997; 3:21-32 12 Nicolson, Garth L. Chronic Infections In CFS, FMS and Gulf War Illness, 1997 13. "Archives of Pathological Laboratory Medicine", May, (1993) 14. Montagnier, L., HIV, Cofactors and AIDS, Abstract from the International Conference on AIDS, June 6-11 (1993) 15. Rawadi, G., Roman-Roman, S, et.al., Effects of Mycoplasma fermentans on the Myelomonocytic Lineage: Different Molecular Entities with Cytokine-inducing and Cytocidal Potential, Journal of Immunology, Jan. 15 (1996) 16. Gallily, R., Salman, M., Tarshis, M., Rottem, S., Mycoplasma fermentans (incognitus strain) Induces TNF alpha and IL-1 Production by Human Monocytes and Murine Macrophages, Immunological Letters, 34(1):27-30 Sept. (1992) 17. Brenner, T., Yamin, A., Abramsky, O., and Gallily, R., Stimulation of Tumor Necrosis Factor-alpha Production by Mycoplasma and Inhibition by Dexamethasone in Cultured Astrocytes, Brain Research, 608(2):273-79 Apr. 16 (1993) 18. Haier, Joerg, M.D., Nasralla, Marwan, and Nicolson, Garth L., Mycoplasmal Infections in Blood from Patients with Chronic Fatigue Syndrome, Fibromyalgia Syndrome or Gulf War Illness, Abstract from the International CFS Congress, Sydney, Australia, 1998 19. Brenner, T., Yamin, A., and Gallily, R., Mycoplasma Triggering of Nitric Oxide Production by Central Nervous System Glial Cells and its Inhibition by Glucocorticoids, Brain Research, 641(1):51-56 Mar. 28 (1994) 20. Weidenfeld, J., Wohlman, A., and Gallily, R., Neuroreport 6(6):910-12 Apr. 19 (1995) 21. Komaroff, A. L., Bell D.S., Cheney, P.R., Lo, S.C., Absence of Antibody to Mycoplasma fermentans in patients with Chronic Fatigue Syndrome, Clinical Infectious Disease, 17(6):1074-75 Dec. (1993) 22. Nicolson, G.L., and Nicolson, N.L., The Eight Myths of Operation Desert Storm and Gulf War Syndrome, Medicine, Conflict & Survival (1997) 23. Hannan, P.C., Antibiotic Susceptibility of Mycoplasma fermentans Strains From Various Sources and the Development of Resistance to Aminoglycosides in Vitro, Journal of Medical Microbiology, Jun. 42(6):421-28 Jun (1995) 24. Poulin, S.A., Perkins, R.E., Kundsin, R.B., AIDS-Associated Mycoplasmas and Antibiotic Susceptibilities, Abstract of American Society of Microbiology Meeting, (1993) (abstract no. G-21) 25. Poulin, S.A., Perkins, R.E., Kundsin, R.B., Antibiotic Susceptibilities of AIDS-Associated Mycoplasmas, Journal of Clinical Microbiology, Apr. 32(4):1101-03 Apr (1994) 26. Vojdani, Ari, Immunology of Chronic Fatigue Syndrome, pp.36-42 (1997)
Courtesy of Sharon Briggs
&n bsp; &nbs p; __________________
Antibiotics Recommended When Indicated for
(AKA Cipro, Cifox, Cifran, Ciloxan, Ciplox)Ciprofloxacin is a broad spectrum synthetic fluoroquinolone antibiotic with good absorption characteristics. This drug acts on bacterial DNA gyrase to inhibit bacterial DNA synthesis. Ciprofloxacin is secreted rapidly in the urine and has a half-life in the blood of about 4 hours. Food delays the absorption of antibiotic (by 2 hours) but not the total absorption; antacids containing magnesium, aluminum or other salts reduce absorption and should not be taken at the same time of day. For GWI/CFIDS/FMS use, the recommended dose is 1500 mg/day (for oral use, 3x500 mg capsules) for each 6 week cycle of therapy. Ciprofloxacin may or may not be taken with meals. Initially, Ciprofloxacin may exacerbate some symptoms (Herxheimer reactions or adverse antibiotic responses) but these are usually gone within a week or so, and some patients report that doses of 1000 mg/day or lower are not effective in alleviating GWI/CFIDS/FMS symptoms. Patients usually start feeling better with alleviation of most major signs and symptoms within 1-4 weeks, but in some patients major symptoms are not alleviated until the second 6-week course. Ciprofloxacin has been used in patients in which doxycycline cannot be tolerated or in some patients that no longer respond to doxycycline. In a few cases Ciprofloxacin has been used simultaneously with doxycycline, but the usual course is one type of antibiotic alone. Herxheimer reaction, if present, usually passes within a few days to 2 weeks or so; prior damage to the gastrointestinal system may require I.V. administration of 400 mg/day (over one hour per each infusion, rapid I.V. administration is to be avoided) for 2-4 weeks, then the remainder of the 6-week course should be on oral antibiotic (oral doses). Virtually all patients relapse (show the same major signs and symptoms) after the end of the first or second 6-week course of therapy. Additional cycles of antibiotic result in milder relapses after drug is discontinued. Subsequent cycles of antibiotics may require the use of doxycycline or other antibiotics instead of Ciprofloxacin. Ciprofloxacin is effective against the following organisms: gram-negative bacteria (Shigella species, Citrobacter diversus, Citrobacter freundii, Escherichia coli, Klebsiella pneumoniae, Haemophilus influenzae, Enterobacter species, Proteus vulgaris, Psuedomonas aeruginosa, Yersinia pestis, Vibrio cholera); gram-positive bacteria (Streptococcus pneumoniae, Streptococcus pyogenes, Staphylococcus hominis, Staphylococcus saprophytieus); mycoplasmas, moderately active (Mycoplasma species); others (Clostridium species, Chlamydia species, Mycobacterium tuberculosis). Precautions: Direct sunlight is to be avoided, and patients should not take Ciprofloxacin and theophyline concurrently. Ciprofloxacin therapy may result in drug crystals in the urine in rare cases, and patients should be well hydrated to prevent concentration of urine. Pregnant women and children should not use this drug due to reduction in bone and cartilage development. Adverse Reactions: Adverse antibiotic responses resulted in discontinuing drug in 3.5% of patients, and such reactions included nausea (5%), diarrhea (2%), vomiting (2%) abdominal pain (1.7%), headache (1.2%) and rash (1.1%). In rare cases Ciprofloxacin may cause cardiovascular problems (<1%) and central nervous system (dizziness, insomnia, tremor, confusion, convulsions and other reactions (<1%). Small numbers of patients have experienced hypersensitivity (anaphylactic) reactions which have required immediate emergency treatment.
Other [Important] Information
Additional Considerations when Undergoing
The Institute for Molecular Medicine
15162 Triton Lane, Huntington Beach,
California 92649-1041 Tel: (714) 903-2900
Fax: (714) 379-2082
e-mail: There are a number of considerations that should be taken into account when undergoing therapy for Gulf War Illness/Chronic Fatigue Syndrome/Fibromyaligia [GWI/CFS/FMS]. A few are mentioned below, and some product examples are given. The Institute for Molecular Medicine is a nonprofit institution and does not endorse commercial products. The products mentioned below are only examples of the types of substances that could be beneficial to patients. Consult with your physician.
Antibiotic Therapy for Associated Chronic InfectionsPlease consult Antibiotics Recommended When Indicated for Treatment of Gulf War Illness/CFS/ FMS for general information. We are finding that subsets of GWI (45%) and FMS/CFS (60%) patients have chronic mycoplasmal infections, and probably other chronic infections as well. We usually recommend to physicians that antibiotics (doxycycline, ciprofloxacin, Biaxin, minocycline, azithromycin) be given for several 6 week cycles with 2 week cycles of Augmentin in between or concurrently, if needed. To overcome Herxheimer reactions or die-off that cause chills, low grade fever, night sweats, muscle aches, joint pain, short term memory loss and fatigue) or adverse responses, IV antibiotics have been used, and a whole lemon/olive drink is useful (1 blended whole lemon, 1 cup fruit juice, 1 TBS olive oil--strain and drink liquid). This period usually passes within 1-2 weeks. During recovery, which is often slow and can take over a year with ups and downs in your condition, a number of additional nutritional and immune problems must be considered.
General Nutritional ConsiderationsGWI/CFS [or CFIDS]/FMS patients are often immunosuppressed and could be susceptible to a variety of opportunistic infections, so proper nutrition and exercise are important. GWI/CFS/FMS patients should not smoke or drink alcohol or caffeinated products. Drink as much fresh fluids as you can, lots of fruit juices or pure water are best. Try to avoid high sugar and fat foods, such as military (MRE) or other fast foods and acid-forming, allergen-prone and stressing foods or junk foods. Increase your intake of fresh vegetables, fruits and grains, and decrease your intake of fats and eliminate simple or refined sugars that can suppress your immune system. To build up your immune system cruciferous vegetables, soluble fiber foods, such as prunes and bran, wheat germ, yogurt, fish and whole grains are useful. In some patient's exclusive use of 'organic' foods have been beneficial.
Vitamins and MineralsGWI/CFS/FM patients are often depleted in vitamins (especially B, C and E) and certain minerals. Unfortunately, illnesses like GWI result in poor absorption. Therefore, high doses of some vitamins must be used, and the gut (oral capsules) cannot easily absorb others, such as vitamin B complex. Sublingual (under the tongue) natural B-complex vitamins in small capsules or liquids (such as Total B, Real Life Research, Norwalk, CA, 310-926-5522) should be used instead of oral capsules that are swallowed. General vitamins plus extra C, E, CoQ-10, beta-carotene, folic acid, bioflavoids and biotin are best. L-cysteine, L-tyrosine, L-carnitine and malic acid are reported by some to be useful. Certain minerals are also often depleted in GWI/CFS/FMS patients, such as zinc, magnesium, chromium and selenium. Some recommend doses as high as 300-mg/day-sodium selenite for a few days, followed by lower maintenance doses. Minerals should not be taken at the same time of day that antibiotics are taken because the minerals can affect the absorption of certain antibiotics.
Replacement of Natural Gut FloraGWI/CFS/FMS patients are often undergoing treatment with antibiotics and other substances that can destroy the normal gut flora. Antibiotic use that depletes normal gut bacteria and can result in over-growth of less desirable bacteria. To supplement bacteria in the gastrointestinal system yogurt and especially Lactobacillus acidophillus tablets are recommended. One product is a mixture of Lactobacillus acidophillus, Lactobacillus bifidus and FOS (fructoologosaccharides) to promote growth of these "friendly" bacteria in the gut (example, DDS-Plusor Multi-Flora ABF, UAS Labs of Minnetonka, MN, 800-422-3371). L. acidophillus should be taken daily to restore gut flora. A human bowel culture, Replete (Interplex) has proven useful to restore natural gut flora.
Natural Immunoenhancers or ImmunomodulatorsA number of natural remedies, such as ginseng root, herbal teas, whole lemon/olive extract drink or an extract of olive leaves with antioxidants are available and are potentially useful, especially during or after antibiotic therapy has been completed. Some examples are botanical mixtures, such as Eden, Echinacea-C (NF Formulas, 800-547-4891), Super-Immunotone (Phyto Pharmica, 800-553-2370), olive leaf extract (Immunoscreen of Covina, CA, 818-966-1610), NSC-100 (Nutritional Supply, Carson City, NV, 888-246-7224), a mixture of herbals and vitamins (Nu-Life Formula, Sophista-Care, Indian Wells, CA, 760-837-1908) or Super Defense Plus (BioDefense Nutritionals, Grand Terrace, CA, 800-669-9205). These have been used to boost immune systems. Although these products appear to help some CFS/FMS patients, their clinical effectiveness in GWI/CFS/FMS patients has not been evaluated. They appear to be useful during therapy to boost the immune system or after antibiotic therapy in a maintenance program to prevent relapse of illness.
Yeast/Fungal or Bacterial OvergrowthYeast overgrowth can occur, especially in female patients (vaginal infections). Gynecologists recommend Nizoral, Diflucan, Mycelex, or anti-yeast creams for women on antibiotics. In some cases, use of metronidazole (Flagyl, Prostat) have been used to prevent fungal or parasite overgrowth or other antifungals (Nystatin, Amphotericin B, Fluconazole, Diflucan) have been administered for fungal infections that can occur while on antibiotics. As described above, L. acidophillus should be taken daily to restore gut flora. Bacterial overgrowth can also occur, for example, in between cycles of antibiotics or after antibiotics have been stopped. This can be controlled with 2-week courses of Augmentin (3 X 500 mg/day) in between cycles or concurrent with other antibiotics.
Flying and ExerciseFlying, especially in unpressurized aircraft, excessive exercise and lack of sleep can make GWI/CFS/FMS signs/symptoms worse. Some exercise (Please don't over do it! A common problem when recovering from this illness is over-exertion followed by relapse!) is useful and even necessary for recovery. The main problem here is to adjust your exercise level to help the recovery process without causing a relapse. Dry saunas help rid the system of contaminating chemicals, and saunas should be taken at least 3-5X per week--moderate exercise, followed by 15-20 min of dry sauna and tepid shower. The sauna can be repeated, by not more than two per day. The idea is to raise body temperature enough to work up a good sweat, eliminating chemicals without placing too much stress on your system. During exercise GWI/CFS/FMS patients should always try to avoid pollutant and allergen exposures. For recovery after exercise and to decrease muscle soreness, some use a Jacuzzi or hot tub, but only after a sufficient cool-down period. Don't get overheated in the process.
MYCOPLASMA TREATMENT SUGGESTIONSAs with any treatment suggestions given by Shasta CFIDS Support group or Sharon Briggs, the information is intended to help you make informed decisions about your health. It is not intended to take the place of medical advice. These suggestions for treatment should be shared with your physician to help with your plan of care.
AntibioticsThe antibiotics recommended by researchers and specialists to treat Mycoplasma are the following: Doxycycline, Ciprofloxacin, Azithromycin, Minocycline, Clarithromycin, and Levaquin. Antibiotics recommended by Dr. Garth Nicolson are all at a very high dosage. He recommends starting with Doxycycline. But, if you are chemically sensitive, Ciprofloxacin may be the first antibiotic of choice. Oral administration works well for most patients, but a few highly sensitive individuals may need to have an initial two week course of antibiotics given intravenously. Minocycline is what most people have used for an I.V. antibiotic. If you start with I.V. administration, you may want to have a heparin loc. catheter placed into a vein for ease of administration. You will need the usual dose twice a day for at least the first two weeks. Also, there are home I.V. services that will administer the antibiotic if you are not able to do it yourself. Garth Nicolson's first study group took the antibiotic in 6-week cycles. They then stopped for a while to determine if the antibiotic was a cure. But, results of that first study demonstrated that 100% relapsed after the first cycle, 88% after the second cycle, 64% after the third cycle, 47% after the fourth cycle, and 25% after the fifth cycle, and 11% after the sixth cycle. All in all, that is six cycles of 6 weeks each for a total of 36 weeks or nine months treatment. Therefore, based on the decreasing percentages of relapses in this first study, many of us have decided that a cycle should be longer than 6 weeks. Many have even taken the antibiotic continuously for a year or more, with excellent results. Doxycycline seems to cross the blood-brain barrier better than other antibiotics on the list, so if your predominate symptoms are neurological, you may want to start with this one. It is also the Nicolson's first drug of choice. The enteric-coated tablet seems to be less troublesome than the capsules. Less gastro-intestinal (as well as, Herxheimer) symptoms are reported with the enteric-coated tablets. But, a dry cracker taken before taking the Doxycycline can also be helpful for the slight nausea experienced. (Shades of morning sickness revisited!) The first two or three weeks of the treatment will be the most difficult in terms of symptoms. You will definitely feel worse before you feel better! Although you may want to stop the treatment, try to hang in there. If you feel worse at first, it is really a good sign!! It means that the organisms are dying. As the antibiotic kills the organisms, they produce a toxin, which stimulates our (already over-active) immune system. This reaction is called Herxheimer, and is discussed below. Do not take antibiotics at the same time as minerals (such as those found in vitamins and antacids). Also, do not drink alcohol at any time while taking antibiotics. It has been found that minerals and alcohol may decrease the absorption and effectiveness of the antibiotic. Because of the recent data concerning combination therapy, the following medications/supplements may be helpful in augmenting the antibiotic therapy. 1. Colloidal Silver taken orally (a natural antibiotic, antifungal, antiviral) 2. Monolaurin, or Lauricidin (a natural antibiotic, antifungal, antiviral). 3. An antiviral (Zovirax, acyclovir, &/or Labucavir (when available). While we are blazing new trails with this treatment, we need to do whatever works for each of us, individually, because there is no set course or "tried and true" recommendations for treatment, yet. When most of your symptoms are gone, we are not certain if one is "cured" or the organism is reduced in enough numbers for the immune system to keep it under control. Therefore, a periodic cycle or a maintenance low dose of antibiotics may be necessary for months or years. Try to avoid those things that can cause a relapse. The most common things are: strenuous exercise, chemical exposure, extreme stress, etc. Otherwise, those things that weaken the immune system and consequently allow the Mycoplasma to reactivate. During this time, it is important to support your immune system. A healthy immune system may be all that is needed to get and/or keep the organisms dormant.
Herxheimer ReactionA Herxheimer reaction occurs from the organism die-off. The dead organism triggers the immune system to respond to toxins given off in the dying process. Since our immune system is already overactive, the cytokine production will be stimulated. The already elevated cytokines (such as interferon, interleukin, tumor necrosis factor, etc.), are the cause of most of our symptoms, anyway. So, when they are stimulated even higher by the die-off, all of our usual symptoms will worsen. Symptoms that are associated with a Herxheimer are the following: chills, fever, night sweats, muscle aches, joint pains, mental fog, and extreme fatigue. (Sound familiar?) You may want to plan on doing nothing for the first week or two of treatment. Also, keep plenty of pain medications on hand, arrange for a massage therapist, have a Jacuzzi handy, and alert the family that you will need plenty of rest, space, and tender loving care during this time. If the Herxheimer is too severe, many people have eased the symptoms with Whole Lemon-Olive Oil Drink (see recipe below.) Taken every day, this drink helps the lymph glands to filter and move the dying organisms. Drink at least two quarts of fresh, filtered water every day to flush the organisms from the body. Whole Lemon-Olive Oil Drink 1 whole lemon---washed and blended until smooth 1 cup of juice or water added to the blended lemon 1 tablespoon of extra virgin olive oil (Montolivo is the best brand)---blended with the lemon Pour through a wire strainer Discard pulp and drink liquid
Resident Bacteria LossBecause the recommended antibiotics are very powerful, and broad spectrum, they tend to kill the good resident bacteria in our bowel and else where, as well as the harmful organisms. When the "good" bacteria is wiped out, then another form of organism can flourish. The most common organism to flourish when we are treated with long-term antibiotics is yeast (with Candida being the most frequent). Yeast's normally reside in the gastro-intestinal system, from the mouth to the anus, and in the vagina. But, its overgrowth is kept under control by the resident "good" bacteria that also reside with it. Nearly everyone on long-term antibiotic therapy will have a yeast infection at some point in time! In addition, those with CFIDS seem to have an immune dysregulation that hampers control of the growth of yeasts. There are two forms of yeast, the spore-form and the mycelial-form. The spore-form only infects the lining of the mucous membranes, but the mycelial-form will go deeper into the tissues, and become systemic. If one only limits simple sugars and starches in the diet in an attempt to control the spore-form of Candida, it will become a protein-loving organism, and change into the mycelial-form, going deeper into the tissues in search of protein. Therefore, one should treat yeasts with medications and diet (limit simple sugars and starches). An overgrowth of yeast in the mouth and throat will often cause the tongue to become coated with a white or yellowish growth and the throat may become sore. An overgrowth of yeast in the intestinal tract will ferment the sugars and starches in our food, forming acids, gas, and alcohol. Symptoms include gas, heartburn and/or pain in the stomach area, and because of the alcohol formation, there can be headaches, dizziness, lightheadedness, and wooziness. Yeasts also produce enzymes that digest proteins and fats in order to attach themselves to the gut mucosa lining. This may cause "leaky gut syndrome". The "leaky gut" allows a larger molecule of food to pass through the gut membrane. Food sensitivities and allergies can form when the immune system recognizes these larger molecules of food as foreign and sets up a defense against them. A vaginal yeast overgrowth may manifest itself in a white or yellowish, itchy discharge and/or symptoms of a bladder infection (urinary frequency, urgency and burning upon urination). If you think you suffer from a yeast infection, a serum antibody test for yeast or a serum arabitol test can be done. (Aribitol is found to be elevated in those with proven invasive Cadidiasis.) Various medications for yeast infection of the mucous membrane can be helpful, such as Nystatin, Mycelex, and Mycostatin as well as various herbal preparations. These medications may come in the form of tablets, lozenges, liquids (swish and swallow) and/or vaginal preparations. Flagyl, Diflucan, and Amphotericin are reserved for the mycelial-form and circulate throughout the body. In addition to the above medications, Natamycin and Miconazole are now available in the United States, but only from a pharmacist who can "compound" the medication (and, of course, upon a physician's prescription). In addition, a supplement called Micropreyl (a combination of garlic, magnesium, calcium and caprylic acid) may also be helpful. You may find that a continuous dose of an antifungal is necessary while you are taking antibiotics. As with antibiotic therapy, expect a Herxheimer "die-off" reaction to occur following the beginning of any antifungal therapy. The "good" bacteria are necessary in the bowel to help with absorption of nutrients from our food. Symptoms of lack of good bacteria in the bowel include constipation and easy bruising. Every day, while on antibiotics, replenish the bowel with a product that contains "good" bacteria. Do not take it at the same time as you take your antibiotic, however. Many good products can be found at the health food store. These contain transient bacteria; i.e., Lactobacillus acidophilus, Bifidobacterium, etc. and/or human strains of acidophilus such as Kyodophilus by Kyolic and Maxidophilus by Ethical Nutrients. Long-term use of antibiotics can permit the overgrowth of another, resistant bacteria called Clostridium difficile (an anaerobic spore-forming bacteria). The main symptom of this unwanted bacterial overgrowth is diarrhea (often watery and explosive). Treatment with another antibacterial agent that is clinically effective against this organism may be necessary before one can resume the antibiotics for Mycoplasma. However, regular use of the lactobacillus/acidophilus preparations seems to be helpful in controlling this antibiotic related colitis. Immune System Support When the body has had a long-term infection with an organism like Mycoplasma, it takes a tremendous toll on the immune system. The immune system is weakened by this organism because it infects the very cell that should kill it-- the leukocytes (or white blood cells)! Cell destruction and oxidization occurs. Once the immune system is rid of the organism, it can become healthy and fight the Mycoplasma more effectively. Once the immune system starts working in a more healthy manner, the Mycoplasma may be killed completely or go dormant. It has been suggested by a number of specialists treating Mycoplasma, that the following nutrients may be helpful: 1. B complex vitamins (the sublingual form is best because it crosses the blood-brain barrier and goes to the affected nerves.) 2. Magnesium 3. Selenium: Interferes with the replication of Mycoplasma when taken at300-500 mg/day 4. Noni: A Polynesian fruit drink that aids in digestion and calms the T cell activity of the immune system. 5. Ambrotose: A Manatec product that helps cell-to-cell communication, and strengthens the cell membrane. Dosage recommended By Dr. See, immunologist & Infectious disease specialist from the University of Irvine, treating CFS/FMS/GWI and AIDS patients is: 3 teaspoons/day. 6. Phyt-Aloe: A Manetec product that calms the T-cell activity. Dosage recommended by Dr. See is 3-6 capsules/day. (Photosensitivity can occur at high doses.) 7. Salmon Oil (May prevent Mycoplasma from attaching to cell wall) 8. Antioxidant supplements a. CO-Q 10 b. Vitamin C c. Sillymarin d. NADH e. Lipoic Acid f. Pycnogenol
g. Beta Carotene h. Vitamin E i. Glutathione j. Super Oxide Dismutase
AN OVERVIEW OF MY SYMPTOMS AND
&n bsp; &nbs p; MYCOPLASMA RESOURCES 1. Garth Nicolson, Ph.D. and
Nancy Nicolson, Ph.D. Institute of Molecular Medicine 15162 Triton Lane Huntington Beach, CA 92649-1041 Tel: (714) 903-2900 E-mail: Visit their Web site for free research documents http://www.immed.org 2. American Veteran's Justice Foundation Dannie Wolf, President 3908 NW Sante Fe Ave. Lawton, OK 73505-3720 (405) 355-2752 Visit their Web site for free information www.sirinet.net 3. Mycoplasma testing by PCR
a. The Institute for Molecular Medicine Huntington Beach, CA General Mycoplasma Screen Test 0.00 donation to "The Friends of the Institute" Individual Species Test 0.00 each (The General Screen Test must be ordered, as well)
b. Immunosciences Labs, Inc. 8730 Wilshire Blvd. STE 305 Beverly Hills, Ca 90211 Dr. Vojdani (800) 950-4686 Only does PCR Test for Mycoplasma fermentans (incognitus) Price 0.00 Accepts insurance and MediCare 4. Antiviral Testing Herpesvirus Diagnostics, Inc. (Dr.'s Knox and Carrigan) 12346 West Layton Greenfield, Wisconsin 53228 5. Cpt. Joyce Riley 3506 HWY 6th South, Number 117, Sugarland, TX 77478-4401, Voice Mail (281) 587-5437, FAX (713) 438-4581. 6. MCS Exchange Allison Johnson 2 Oakland Street Brunswick, Maine 04011 (207) 725-8570 (Has done an in-depth study of Mycoplasma treatment and treatment with Neurontin.) 7. Mycoplasma Registry Sean and Leslie Dudley 303 47th Street J-10 San Diego, CA 92102-4801 (619) 266-1116 8. Bill Rea, MD Environmental Health Center Dallas, TX (214) 368-4132 (Desert Storm Vaccine- Made with autologous transfer factor) 9. Department of Defense Persian Gulf Incident Reporting Line (800) 472-6719 10. Department of Defense Medical Registry (800) 796-9699
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