Mycoplasma Treatment Guidelines

Discussion in 'Fibromyalgia Main Forum' started by lbconstable, Jun 29, 2005.

  1. lbconstable

    lbconstable New Member

    The following Mycoplasma treatment guidelines were taken from the Shasta CFIDS Support Group Website....

    As with any treatment suggestions given by Shasta CFIDS Support Group 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.

    ANTIBIOTICS
    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 (for complete recommendations, go to his web site : www.iimmed.org) are all at a fairly high dosage. He recommends starting with Doxycycline. But, if you are chemically sensitive, Ciprofloxacin may be the first antibiotic of choice. For those infected with the species of Mycoplasma hominus, Azithromycin may be the most effective. 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, it has been suggested 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. The antibiotics should be taken on an empty stomach, but a dry cracker taken before taking the Doxycycline can also be helpful for the slight nausea experienced. Also, the generic form of the antibiotic may not be as effective, so always ask for the brand name.

    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. Oral antibiotics must be taken with a full glass of water to avoid esophageal irritation. Also, remain in an upright position for at least one half hour after taking the antibiotic to prevent it lodging in your esophagus and causing a burning.

    It has been found that minerals may decrease the absorption and effectiveness of the antibiotic, so avoid taking them, or milk products, at the same time.
    Antibiotic uptake may be inhibited by various drugs and many drugs may also inhibit immune responses. To achieve the maximum response to treatment, please try to limit or eliminate the following drugs: alcohol, anti-depressants (sertaline or Zoloft, fluoxetine or Prozac, amitriptyline or Elavil, maprotiline or Ludiomil, desipramine or Norpramin, clomipramine or Anafranil, nortriptyline or Pamelor, bupropion or Wellbutrin), muscle relaxants (cyclobenzaprine or Flexeril), opiate agonists, anticonvulsives or analgesics (oxycodone or Percodan, carbamazepine or Tegretol, acetaminophen/hydrocodone or Vicodin), narcotics (codeine w/ Phenergan, propoxyphene or Darvon, morphine), antacids, antidiarrheas, metal salts, others.


    Because of the recent data concerning combination therapy, the following medications/supplements may be helpful in augmenting the antibiotic therapy. Colloidal Silver taken orally (a natural antibiotic, antifungal, antiviral)
    Monolaurin, or Lauricidin (a natural antibiotic, antifungal, antiviral).

    An antiviral (Zovirax, acyclovir, &/or Labucavir.) Some add the antivirals Acyclovir, Famvir or Labucavir for the first 2 weeks in a 6-week antibiotic cycle. Since Mycoplasmas have some characteristics of viruses, antivirals can have a useful effect, and viral infections are also important in CFIDS.



    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 REACTION
    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---blended with the lemon
    (Montolivo is the best brand)
    Pour through a wire strainer
    Discard pulp and drink liquid

    New research is under way that may help to eliminate the toxins that are produced by the dying organisms. Some have tried a combination of Actos and the anti-cholesterol drug Questran (Cholestyramine) to rid the body of the low molecular weight fat soluable ionophore neurotoxins produced by the dying Mycoplasma with some success. This treatment was perfected by Richie Shoemaker, MD to treat those with Lyme Disease.


    RESIDENT BACTERIA LOSS
    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:
    B complex vitamins (the sublingual form is best because it crosses the blood-brain barrier and goes to the affected nerves.
    Magnesium
    Selenium: Interferes with the replication of Mycoplasma when taken at300-500 mg/day
    Salmon Oil (May prevent Mycoplasma from attaching to cell wall)
    Antioxidant supplements CO-Q 10
    Vitamin C
    Alpha Lipoic Acid
    Pycnogenol
    Beta Carotene
    Vitamin E
    Glutathione
    Super Oxide Dismutase
    Bioflaonoids




    OXIDATIVE THERAPY
    Oxidative therapy appears to be useful in suppressing infections. Hyperbaric oxygen, American Biologics Dioxychlor are useful, or peroxide baths using 2 cups of Epsom salt in 20 inches of hot bath or Jacuzzi. After 5 min add 2-4 bottles 16 oz. of 30% hydrogen peroxide. Repeat 2-3X week; no vitamins 8 hr before bath. The hydrogen peroxide is added after your pores open. Hydrogen peroxide can also be directly applied to skin after a work-out or hot shower/tub. One approach is to apply Swedish Beauty type A tanning accelerator for 5 min before peroxide. Leave hydrogen peroxide on for 5 min and then wash off. For oral irrigation, mix 1 part 30% hydrogen peroxide with 2 parts water and use like a mouth wash 3X per day. Most chronic illness patients have dental problems, and infections are common.

  2. Mikie

    Mikie Moderator

    If you do not get a lot of responses, I think it's because someone just posted this info. My response will bump this back to the top so that anyone who missed it can read it.

    Love, Mikie
  3. foxglove9922

    foxglove9922 New Member

    Very comprehensive and nicely done. I too am bumping for anyone who is unfamiliar with this.
  4. Bambi

    Bambi New Member

    deathly allergic to Cipro and most of the newer antibiotics that have Sulfa
    in them. Has anyone done it without this type of antibiotics?

    Also it says you may want to keep a good supply of pain relievers around for the Herx time. Just about every form of pain medication is listed as a no no, and I can't take NSAIDS. What other type of pain medications is the article referring to? Thanks!
  5. Wasabi

    Wasabi New Member

    Thank you for posting this. The fibromyalgia specialist I'm seeing uses a very similar treatment program. As far as I know, this type of treatment isn't widely used yet, but I wonder if in a few years it will become more prevalent. I hope so.

    I'm only three months into my treatment program, but I'm seeing positive results already. The large majority of my doctor's patients are symptom-free after a year of this treatment. Most are off of painkillers and are living fairly normal lives and can usually maintain this if they can avoid letting their immune systems get run down by physical overexertion or stress.

    That seems pretty incredible, given that most doctors expect you to only be able to manage your symptoms with medications and exercise for the rest of your life. What my doctor says give me much more hope: "You'll have the life of a normal person again." Anyway, I'm not saying that this treatment will help everyone with FMS, but I hope that it becomes more readily available as an option. Having treatment options is always a good thing.
  6. foxglove9922

    foxglove9922 New Member

    this is great information, bumping for any newbies who may not have seen this
  7. lisagra

    lisagra New Member

    WASABI:

    Who and where is your CFS doc?

    Thanks so much, Lisa
  8. Mikie

    Mikie Moderator

    Olive Leaf Extract has helped some with viral, bacterial, and/or fungal infections.

    There is a Transfer Factor for mycoplasmas which is only available to docs through ProHealth here.

    Zappers kill pathogens in the bloodstream which is when they are vulnerable and when the ABX kill them too.

    Doxycycline is the first ABX of choice and it is in the tetracycline family. Azithromycin and Minocin are two other alternatives. I don't believe Cipro should be used as the ABX of first choice. I am allergic to the fluoride in it.

    Colloidal silver is good but it might not be enough to kill the mycoplasmas. Dr. Garth Nicolson recommends it in addition to the ABX to treat mycoplasmas. Don't believe it when you read that it will make you turn gray or blue. You would probably have to drink a bottle a day for years for it to have that effect. It's expensive; you couldn't afford to take that much.

    As far as pain--I had no pain from the Doxy. I did Herx with diarrhea from hell but it only lasted 24-48 hours and I felt so much better afterward. After the first Herx on the Doxy, the fluish feeling, aches and pains, headaches, low-grade temperature, sore throat, and swollen lymph nodes went away as did my IBS.

    Mycoplasma infections, or any chronic infections, will slowly rob the body and turn it into a hotel for pathogens. These infections must be dealt with in order to achieve healing.

    One word about the Transfer Factors. They train the immune system to recognize the targeted pathogen and kill it. That means that they elicit a strong immune response which can be as bad or worse than the symptoms of the infection itself. This is temporary but can be severe enough that one has to break open the capsules and only sprinkle a little under the tongue until one builds up to them. After a month on the TF's for viral infections, I felt much better. After three months on them, one can try going off and only pulsing them a couple of days every 4-6 weeks.

    I think the best of both worlds is to take an ABX for at least six months if you can tolerate it and then switch to the TF's as they train the immune system itself. The immunity isn't permanent, but it's not bad at all to pulse them like little booster shots. I still Herx every time I pulse them.

    Love, Mikie
  9. Sandyz

    Sandyz New Member

    THanks IBConstable,

    My doctor is about to start me on treatment for mycroplasma infections so I can really use this information as I go through this. I`m going to print it out. ALso, thanks Mikie for sharing your experience. It gives me a better idea of what to expect.
    [This Message was Edited on 07/01/2005]
  10. Jillian40

    Jillian40 New Member

    Good Stuff.

    Thanks for posting this.

    Jillian
  11. Mikie

    Mikie Moderator

    This is all so new for so many of our members, but more and more, treating our chronic infections is helping us to heal. As we gain more experience, we can streamline the techniques and treatments. I suspect this will become mainstream soon until a cure is found.

    Love, Mikie
  12. Wasabi

    Wasabi New Member

    My doctor is Michael Powell in Sacramento, CA. Here is his web site:

    http://www.fmtlc.com/contact.html

    He uses some of Dr. Teitelbaum's protocol, which is published in the book, Fatigued to Fantastic. My doctor's treatment program, however, focuses on the theory that there is often long-term infection involved in FMS/CFS.

    Initially, my doctor uses a mix of supplements, medication, and lifestyle changes to address immune imbalances, sleep issues, and pain. Then he adds an aggressive antibiotic treatment to attack long-term infections, which can go through several phases that are difficult to destroy. The idea is to kill the infection permanently. The treatment plan requires determination on the patient's part to keep up with a rigorous schedule of supplements and antibiotics, but I'm willing to try it. Each case is different, but many patients begin to see results in 4-6 months, and most are symptom-free after a year.

    I'm quite aware that this theory isn't wide-spread, and many people might question the idea that people can actually return to normal lives after being diagnosed with fibromyalgia. He has on record at least 75 former patients who say that they are "completely back to normal" and had "gotten their lives back again."

    Again, I'm not saying that this treatment could help everyone, but I think it's certainly worth looking into. If this type of treatment is indeed so effective, imagine what an impact it could have on fibromyalgia patients who are routinely told that their current quality of life is permanent. As I said, I'm only three months into treatment, and the program takes a lot of commitment and energy itself, but I'm doing much better already. Anyway, hope this is helpful. Best of luck to everyone!
  13. lbconstable

    lbconstable New Member

    Thanks for sharing your experiences. I'll be interested to know how you continue to progress.

    I too am encouraged about the possibility of fully regaining my life. I started with many of Dr. Teitelbaum's recommended nutrients & supplements about a year ago. I definately made improvement with that protocol and a bunch of detox work - I'm hopeful that the hypercoagulation and infectous agent treatment will be the icing on the cake!

    It seems like many more doctors are aware of these protocols than they were in years past. The first doctor I talked to about overwhelming fatigue was in 1992. He thought I was depressed. There is so much more information out there now days. The medical community seems to be coming along (although somewhat slowly).

    CFS & FM are somewhat complicated disorders - I think it's wise to choose a health professional that specializes in these areas given that there is so much new research to keep up with. Or a professional that is open to the research results that his/her patients bring in.

    Wishing you continued healing, Laurie
  14. lisagra

    lisagra New Member

    Hi Wasabi:

    Thanks for your doc's info. I live in Berkeley, so will in fact check out Dr. Powell. I'd love to talk with you more about your treatment experience. Can you write me backchannel at (email address removed)

    Thanks so much, Lisa
  15. Mikie

    Mikie Moderator

    This is the best, most comprehensive, info on this that I have seen. I've been trying for years to post my own experience to help others who are going through these treatments. Everything in this article is what I have been trying to convey but it is so much more comprehensive in the article. Also, anecdotal info is good, but medical papers and articles carry more weight with docs for anyone wanting to have something to show their docs.

    This treatment was rare when I started it and there were no FFC's. My doc and I used the info from Dr. Nicolson's website and flew by the seats our of pants. It took 2 1/2 years on the Doxy to get to the point that I no longer needed it. When I pulsed it, I stayed off of it for longer and longer periods until I could stay off of it without the symptoms' returning.

    I always have Doxy on hand and if I get sick, I take it to ensure any mycoplasma stragglers do not make a comeback. Doxy has been shown to be a good ABX for long-term use. I do not think Cipro should be the first drug of choice unless one cannot take the other recommended meds. Cipro is a heavy hitter drug. Also, if one cannot take fluoride, one cannot take Cipro.

    Thanks again for this very, very good info.

    Love, Mikie