Treatment of Gulf War Illness/CFIDS/FMS
- By Prof. Garth L. Nicolson
- The Institute for Molecular Medicine
- 15162 Triton Lane, Huntington Beach,
- California 92649-1041
- Tel: (714) 903-2900 Fax: (714) 379-2082
- e-mail: gnicimm@ix.netcom.com
(AKA Vibramycin, Monodox, Doxychel, Doxy-D, Doryx)
- Doxycycline is a broad spectrum tetracycline with good lipid solubility and ability to penetrate the blood-brain-barrier. This antibiotic acts by inhibiting microorganism protein synthesis, it is readily absorbed by the (normal) gut, and peak blood concentrations are maintained between 2-18 hours (half-life 18-22 hours) after an oral dose of drug. Food, calcium, magnesium and antacids reduce absorption, and alcohol, phenytoin [Dilantin] or barbiturates reduce blood half-life.
- For Gulf War Illness/Chronic Fatigue Syndrome/Fibromyaligia Syndrome (GWI/CFIDS/FMS) use, the recommended dose is 200-300 mg/day (oral, 2-3×100 mg capsules) for each 6 week cycle of therapy. Initially, doxycycline initially exacerbates symptoms (Herxheimer reactions or adverse antibiotic responses, such as transient fever, skin, gut discomfort, etc.) but these are usually gone within 2 weeks or so. Patients usually start feeling better with alleviation of most major signs and symptoms within 2-6 weeks, but in some patients major symptoms are not alleviated until the second 6-week course. Severe reactions or prior damage to the gastrointestinal system may require I.V. administration of 100-150 mg/day (rapid I.V. administration is to be avoided) for 2-3 weeks, then the remainder of the 6 week course should be on oral antibiotic (to avoid thrombophlebitis complications which can occur with prolonged I.V. therapy). Some react to the starch filler in the capsules and must use Doryx, a granular form of doxycycline.
- Virtually all patients relapse (show the same major signs and symptoms) after the end of the first and second 6-week course of therapy, and these can be run together without a pause. In a pilot study, >85% relapsed after 2 cycles, and after 5 and 6 cycles, 27% and 11%, respectively, still relapsed after discontinuing antibiotic therapy.
- In some cases doxycycline has been used successfully with other antibiotics in situations where either antibiotic alone appeared to have minimal effect (for example, doxycycline in combination with Ciprofloxacin). Doxycycline is primarily bacteriostatic and effective against the following organisms: gram-negative bacteria (N. gonorrhoeae, Haemophilus influenzae, Shigella species, Yersinia pestis, Brucella species, Vibrio cholera); gram-positive bacteria (Streptococcus pneumoniae, Streptococcus pyogenes); myco plasmas (Mycoplasma pneumoniae, Mycoplasma fermentans [incognitis], Mycoplasma penetrans); others (Bacillus anthracis [anthrax], Clostridium species, Chlamydia species, Actinomyces species, Entamoeba species, Treponema pallidum [syphilis], Plasmodium falciparum [malaria] and Borelia species).
- Precautions: Avoid direct sunlight and drink fluids liberally. Doxycycline therapy may result in overgrowth of fungi or yeast and nonsensitive microorganisms (see Other Considerations). Patients on anticoagulants may require lower anticoagulant doses. Last half of pregnancy, infancy and children under 8 years are not recommended, in the latter case due to tooth discoloration, but lower doses of doxycycline have proven to be very effective in children under 8 with GWI/CFIDS (if weight 100 lbs. or less, 1-2 mg/lb. divided into two doses; if is weight over 100 lbs. use adult doses). Patients with impaired kidney function should not take doxycycline, and the following drugs should not be taken with doxycycline: methoxyflurane [Penthrane], carbamazepine [Tegretol], digoxin or diuretics.
- In case of complicating bacterial infections, a 2 week course of Augmentin (3 X 500 mg/day) should be taken between courses of doxycycline or other antibiotics. For fungal and yeast complications, please see the instructions under. Other Considerations at the end of this handout.
- Adverse Reactions: In a few patients doxycycline causes gastrointestinal irritation, anorexia, vomiting, nausea, diarrhea, rashes, mouth dryness, hoarseness and in rare cases hypersensitivity reactions, hemolytic anemia, skin hypersensitivity and reduced white blood cell counts. In general, doxycycline is considered a safe drug, in that there are few adverse reactions reported in the literature.
- 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, 3×500 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.
(AKA Zithromax)
- Azithromycin is an azalide (macrolide) antibiotic with good absorption and a serum half-life of 68 hours. This class of drug acts by binding to the 50S ribosomal subunit of susceptible organisms where it interferes with protein synthesis. Food decreases absorption rate, but absorption is unaffected by antacids containing magnesium, aluminum or other salts. For GWI/CFIDS/FMS use, the recommended dose is 500 mg/day (for oral use, 2×250 mg capsules) for each 6-week cycle of therapy. Azithromycin should not be taken with meals (1 hour before or 1 hour after). Initially, azithromycin may exacerbate some symptoms but these are usually gone within a week or so. Patients usually start feeling better with alleviation of most major signs and symptoms within 1-2 weeks, but in some patients major symptoms are not alleviated until the second 6 week course. Azithromycin has been used in patients in which doxycycline cannot be tolerated or in some patients that no longer respond to doxycycline. Herxheimer reactions are rare and usually pass within a few days to a week or so. 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. Azithromycin has been shown to be safe for pediatric use (10 mg/kg/day is recom mended for children under 14).
- Azithromycin is effective against the following organisms: gram-negative bacteria (Bordetella pertussis, Shigella species, Haemophilus influenzae, Chlamydia species, Yersinia pestis, Brucella species, Vibrio cholera); gram-positive bacteria (Streptococci group C, F, G); mycoplasmas (Mycoplasma species); others (Clostridium species, Treponema pallidum [syphilis], and Borelia sp.).
- Precautions: Azithromycin is principally absorbed by the liver, and caution should be exercised with patients with impaired liver function. Antacids containing magnesium, aluminum or other salts should not be taken at the same time of day with azithromycin. Macrolides and terfenadine (Seldane) or astemizole (Hismaral) may dangerously elevate plasma antihistamine and cause arrhythmia’s and increase serum theophyline levels in some patients, particularly those receiving methylated xanthine causing nausea, vomiting, seizures. Plasma levels of carbamazepine (Tegretol) can also be elevated, leading to carbamazepine toxicity and nausea, vomiting, drowsiness and ataxia.
- Adverse Reactions: Adverse antibiotic responses were mild to moderate in clinical trials and included diarrhea (5%), nausea (3%), abdominal pain (3%). In rare cases (<1%) azithromycin may cause cardiovascular problems (palpitations, tachycardia, chest pain) and central nervous system (dizziness, headache, vertigo), allergic (rash, photosensitivity, angioderma), fatigue and other reactions (<1%). In pediatric patients >80% of the adverse responses were gastrointestinal.
(AKA Biaxin)
- Clarithromycin is a broad spectrum macrolide antibiotic with good absorption and serum half-life. This class of drug acts by binding to the 50S ribosomal subunit of susceptible organisms and interfering with protein synthesis. The drug is mostly bacteriostatic but high concentrations can be bactericidal. Food decreases absorption rate, but absorption is unaffected by antacids containing magnesium, aluminum or other salts.
- The recommended dose is 500-750 mg/day (for oral use, 2-3×250 mg capsules) for each 6-week cycle of therapy. Clarithromycin should not be taken with meals (1 hour before or 1 hour after). Initially, Clarithromycin may exacerbate some symptoms due to Herxheimer reaction and bacterial death but these are usually gone within a week or so.
- Patients usually start feeling better with alleviation of most major signs and symptoms within 1-2 weeks, but in some patients major symptoms are not alleviated until the second 6-week course. Clarithromycin has been used in patients that do not respond to doxycycline or in patients that cannot tolerate doxycycline. Herxheimer reactions usually pass within a few days to over a week or so. 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.
- Clarithromycin is effective against the following organisms: gram-negative bacteria (Neisseria gonorrhoeae, N. meningitides, Moraxella catarrhalis, Campylobacter jejuni, Eikenella corrodens, Haemophilus ducreyi, Bordetella pertussis, Shigella species, Salmonella species, Haemophilus influenzae, Chlamydia species, Yersinia pestis, Brucella species, Vibrio cholera, Aeromonos species, E. coli, gram-positive bacteria (Streptococcus pyogenes, S. pneumeniae, anerobic Streptococci, Enterococcus faccalis, Staphlococcus aureus, S. epidermidis, Bacillus anthracis, Corynebacterium diptheriae, C. minutissimum, Listeria monocytogenes, Actinomyces israelii); mycoplasmas (Mycoplasma species, M. pneumoniae, Ureaplasma urealyticum); others (Clostridium species, Treponema pallidum [syphilis], Legionella pneumophilia, L. micdadei, Mycobacterium avium, M. chelonae, M. chelonae absessus, M. fortuitim, Rickettsia species and Borrelia species). Yeast’s, fungi and viruses are resistant.
- Precautions: Clarithromycin is principally absorbed by the liver, and caution should be exercised with patients with impaired liver function. Antacids containing magnesium, aluminum or other salts should not be taken at the same of day as azithromycin. Macrolides and terfenadine (Seldane) or astemizole (Hismaral) may dangerously elevate plasma antihistamine and cause arrhythmia’s and increase serum theophyline levels in some patients, particularly those receiving methylated xanthine causing nausea, vomiting, seizures. Plasma levels of carbamazepine (Tegretol) can also be elevated, leading to carbamazepine toxicity and nausea, vomiting, drowsiness and ataxia. Macrolides should not be used with cyclosporin (Sandimmune).
- Adverse Reactions: Adverse antibiotic responses were mild to moderate in clinical trials and included diarrhea, nausea, and abdominal pain. In rare cases (<1%) azithromycin may cause cardiovascular problems (palpitations, tachycardia, chest pain) and central nervous system (dizziness, headache, vertigo), allergic (rash, photosensitivity, angioderma) and fatigue.
(see Additional Considerations…)
- GWI/CFIDS/FMS patients are often low in vitamins (B, C and E) and minerals. Sublingual (under the tongue) natural B-complex vitamins (Total B, Real Life Research, Norwalk, CA) can be ordered from Vitamin Park (Irvine, CA). General vitamins plus extra C and E and general mineral supplements are also useful, but not at the same time of day that antibiotics are taken because minerals can affect the absorption of the antibiotics. Selenium and magnesium are two of the minerals that are low in GWI/CFIDS/FMS patients. Some have recommend 300-500 mg/day sodium selenite for a few days, followed by lower maintenance doses. Some zinc supplementation is recommended. L- cysteine supplementation has been proposed but should not be taken at the same time as minerals.
- Antibiotics can result in yeast overgrowth, especially in female patients. Gynecologists recommend Nizoral, Diflucan, Mycelex, or anti-yeast creams for women on antibiotics. In some cases, simultaneous use of metronidazole (Flagyl, Prostat) have been used to prevent fungal and parasite overgrowth or antifungals (Nystatin, Amphotericin B, Fluconazole) have been administered for fungal infections that can occur while on antibiotics. To replace bacteria in the gastrointestinal system yogurt, Lactobacillus acidophillus tablets are recommended. In some patients ‘organic’ food has been beneficial. Caffeine should be avoided. On page 1 are instructions for suppressing bacterial overgrowth (if necessary) in between cycles of antibiotics with a 2 week course of Augmentin (3 X 500 mg/day). Augmentin can be taken concurrently with the other antibiotics, if necessary.
- A number of natural remedies, such as ginseng root, whole lemon/olive oil drink or an extract of olive leaves with antioxidants (Eden or Immunoscreen of Covina, CA), and a mixture of herbals and vitamins (Nu-Life Formula, Sophista-Care of Indian Wells, CA) have been used to boost immune systems. Although these products appear to help CFIDS/FM patients, their effectiveness in GWI/CFIDS/FM patients has not been examined. They appear to be useful after antibiotic therapy.
- Finally, GWI/CFIDS/FMS patients should not smoke and not drink alcohol, caffeinated products or eat refined sugar, and they should avoid pollutant exposure, especially those who are chemically sensitive. Flying, excessive exercise and lack of sleep can make signs/symptoms worse; some exercise (don’t over do it!) and dry saunas help rid the system of contaminating chemicals.
Treatment for Gulf War Illness/CFS/FMS
- By Prof. Garth L. Nicolson
The Institute for Molecular Medicine
15162 Triton Lane, Huntington Beach,
California 92649-1041 Tel: (714) 903-2900
Fax: (714) 379-2082
e-mail: gnicimm@ix.netcom.com - 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.
- Please 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.
- GWI/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.
- GWI/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.
- GWI/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.
- A 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 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, 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.
- As 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.
- The 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.
- A 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
- Because 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. _____________: this product has been removed per company cease and desist order – now recommending New Eden from http://www.wellnessquest.org
- 6. _____________: this product has been removed per company cease and desist order – now recommending New Eden from http://www.wellnessquest.org
- 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
k. Bioflaonoids
RECOVERY FROM CFIDS WITH ANTIBIOTICS
- The only reason I tell my story is so you can see what a typical FS/FMS/MCS person who has had the disease, fairly severely, has had to go through with the treatment. I hope it helps you to hang in there to recovery, also. I have had contact with over 100 people, thus far, who share my symptoms and have also been helped with the antibiotic therapy.
- I have been ill with CFIDS since spring, 1981. I was placed on low-dose Erythromycin for 2 years and fully recovered and was symptom free for five years. I relapsed in 1989. I started taking antibiotics, following Dr. Nicolson’s protocol, in January 1996. Following is a summary of my CFIDS symptoms and a chronicle of the treatment with antibiotics and how those symptoms were affected.
- The most significant CFIDS symptoms I have had were muscle aches and joint pains, headaches, severe cognitive changes, fatigue, and neuritis (described as a low hum throughout the body—much like lying on the floor next to a refrigerator-later captured as seizure activity). But, I also had most of the other symptoms from the CFIDS list, but not all the time. When I kept a diary of my symptoms, a pattern emerged that was very unique. Here is an overview of the symptoms: They always started with the head and worked down the body to the feet. When the symptoms finally reached the feet, they would disappear, and a period of remission would occur At first this pattern took months to cycle through all the symptoms, then as I got well, weeks and then days would be devoted to the symptoms-which were later acknowledged to be directly associated with mycoplasma induced meningitis/neuritis. Now, I only have one or two symptoms left, and the complete cycle from head to toe no longer occurs. Others, who are positive with the mycoplasma, have described a similar pattern.
- The cycle always starts with severe itching of the scalp. Headaches and severe cognitive problems are next. Soon after, the cranial nerves are affected causing blurred vision, ringing in the ears, TMJ, balance problems, etc. When these problems disappear, then the stiff neck, enlarged neck glands and shoulder and back pains (classic Fibromyalgia trigger points) abound. Next, the lungs and heart are targeted with skipped heart beats and shortness of breath, asthma, etc. When these symptoms fade, it then is manifest in the stomach, liver and spleen, causing pain, indigestion, belching and bloating. Next, the intestines and bladder are targeted, with alternating diarrhea and constipation, frequency and burning on urination. The last symptoms have to do with the low back, legs and feet. The low back is painful, as if I strained it, I get severe leg cramps with even mild exertion, and the soles of the feet hurt when I barely step down. When the feet are no longer painful, there is a period of respite >from all symptoms. Then the head to toe cycle starts again.
- Since starting treatment with the antibiotic regime recommended by Dr. Garth Nicolson, I have had a curious, but positive response. The first antibiotic that was prescribed by my physician was Cipro. Because I had tremendous chemical sensitivities, it was recommended as a first drug. Apparently the Herxheimer reaction is not as severe, and the tolerance of the drug, from a chemical standpoint, is better. Anyway, within a few days, I did have a Herxheimer—with chills, night sweats, total body aches, and a feeling of being poisoned. After 4 days, the severe headaches began.
- The Herxheimer gradually subsided, but the severe headaches continued. When I talked to Dr. Nicolson, he explained that the antibiotic was causing an inflammation to occur in the brain with local swelling. He also said that Cipro does not cross the blood/brain barrier unless it is in very high doses, and encouraged me to increase the dose from three a day to four a day. When this dose did not help, he then encouraged me to switch to Doxycycline. I started to take the Doxy at 100 mg twice a day. The Herxheimer worsened (as it has every time I start a new course of antibiotic). But, this is when I noticed a most curious thing. Within a half-hour of taking the Doxy, my headache would go away! In fact, this was the first drug (including very strong opiod analgesics) that relieved my headache! Dr. Nicolson said I was very lucky to have a symptom that could be directly connected to the Doxy response, and encouraged me to raise the dosage until the headaches went away completely. He said that would be my thresh-hold dose. It took three Doxy a day for three months to completely get rid of the headaches.
- During this first course of Doxy, I also had some other curious things happen. All the joints that had been involved since I first became ill in 1981 became swollen and painful-at once. Then the skin looked as if it had been sun burned or scalded over the joints, and within a week, most of the skin had peeled. One of the other significant events during the first three-month course was a definite decrease in my chemical sensitivities. I had previously been housebound because of asthma/headaches/cognitive problems to a variety of chemicals.
- The time period off the Doxy and on to another antibiotic was short lived-two weeks. When symptoms returned, I started taking Cipro again, but, this time the dosage of three a day seemed to be enough. During this second 2-month course, more CFIDS symptoms disappeared. But in each case of beginning a new course of antibiotic, the head to toe pattern of symptoms occurred.
- The fourth course was Doxy again for six weeks. More symptoms disappeared during this course-mainly the seizures, most cognitive problems, fatigue and painful Fibromyalgia. The fifth course of antibiotic occurred after a four-week rest. This time Zithromax was the drug. It caused another severe Herxheimer reaction, so I assumed it must be very powerful against the Mycoplasma. But, after six weeks, it had completely wiped out the flora in the bowel and I began to have some serious problems. I decided to discontinue the antibiotics and start a more intensive bowel regime.
- By now, the Candida had gone to the mycelial form and had to be treated with Diflucan 200 mg twice a day. Previously, I had been taking nystatin, various forms of lactobacillus/acidophilus, etc. on a daily basis, as well as doing a thorough bowel replacement program between courses. But, the Zithromax had sent my bowel over the edge. The rest period after Zithromax lasted one month. I am now back on Doxy now. It seems to be the drug of choice for me, and I will probably continue with it indefinitely. The only symptoms I had return since the Zithromax are cramps in the calves and pain in the soles of my feet. My headaches, fatigue, Fibromyalgia pain, chemical sensitivities, and joint pains are nearly gone! The last symptoms to deal with are sleep disturbance (insomnia) and hormonal imbalances. With the head to toe pattern, with each time period on antibiotics, the pattern became shorter and the severity less, until this last course of Doxy, I experienced only a slight itchy scalp and low back ache-within eight hours of each other. Not much considering before antibiotic treatment the length of time from head to toe would take several agonizing months to occur.
- The Herxheimer reaction that occurs at the beginning of an antibiotic course also became shorter and less severe with each successive course. I have yet to have my cytokine, NK cells, Helper/suppressor ratio, etc. done. But, plan to have those done soon to document the state of my immune system. I suspect it will be much improved. I am now exercising daily, have my previous brain (memory, reasoning, concentration, etc.) and no longer have those emotional roller coaster rides. I would say, as long as I am taking an antibiotic, I am 95% well!! My goal is to be 100% well without antibiotics.
- Starting 19 months into the antibiotic therapy, I have begun a course of combination therapies. In addition to the Doxy, I have taken Monolaurin, BHT, Colloidal Silver, _______, Noni, _______, antioxidants, and the antiviral Zovirax. My physician encouraged me to add these other supplements to either intensify the antibiotic, correct and enhance the immune system, and treat for a symbiotic Human Herpes Virus-6 (HHV-6) chronic infection. Since adding the combined therapies, I have experienced a longer time period between antibiotics (3-4 months) and a shorter course of antibiotics (3 weeks at a time), This is progress!
- I have begun to work part time again in my home. I have been able to resume my previous level of physical activity and my chemical sensitivities and allergies are nearly gone. I am still battling with hormonal problems, weight gain and sleep problems, but have added L-Carnitine to my regime with much success.
- Well, that pretty much describes my last 2 12 years of intensive treatment. I hope this helps you to understand my problems and successes with the antibiotic treatment. If you have any questions, let me know. If I had it to do over again, I would not hesitate a minute. I just wish I would have know about this before it took seven more years of my vibrant, young life!
- Sincerely,
- Sharon Briggs
- Support Group Leader&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: gnicimm@ix.netcom.com 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 $150.00 donation to “The Friends of the Institute” Individual Species Test $150.00 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 $150.00 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