AntiBiotics helps FM/CFS?.....I think so..

Discussion in 'Fibromyalgia Main Forum' started by AJME, Nov 20, 2002.

  1. AJME

    AJME New Member

    Dear All,

    I notice the article at this site dated 11/20/02 by a doctor suggests that AntiBiotic therapy signficantly helps
    FM/CFS sufferers.

    Does anyone here take AntiBiotics specifically for FM/CFS.

    I have notice that when I'm sick with other things then
    FM that AntiBiotics make me generally feel better then my
    baseline normal health.

    I wonder if taking AntiBiotics is benefitial long term and
    if there could be some severe risks with chronically taking
    antibiotics beyond making super germs.

    Thanks!
  2. AJME

    AJME New Member

    Dear All,

    I notice the article at this site dated 11/20/02 by a doctor suggests that AntiBiotic therapy signficantly helps
    FM/CFS sufferers.

    Does anyone here take AntiBiotics specifically for FM/CFS.

    I have notice that when I'm sick with other things then
    FM that AntiBiotics make me generally feel better then my
    baseline normal health.

    I wonder if taking AntiBiotics is benefitial long term and
    if there could be some severe risks with chronically taking
    antibiotics beyond making super germs.

    Thanks!
  3. Stormy214

    Stormy214 New Member

    I would never presume to make a generalization, because I think this varies from person to person. However my personal experience is this: after 15 days on antibiotics for pneumoina and a sinus infection, my fibr symnptoms DRASTICALLY increased. I have not since recovered and am still in a major flare (it has been 2 months). So, for me, antis made it worse. But that is not to say they don't help some people. *shrug* But if they helped you, I'm glad! Any relief we can get is relief, period!
    Stormy
  4. Mikie

    Mikie Moderator

    We've just been discussing this here. I have posted regularly on my antibiotic treatment.

    Love, Mikie
  5. karen2002

    karen2002 New Member

    Antibiotics used during the course of viruses, is a large problem today. They, in my opinion should only be used if a secondary infection develops...and carefully at that.

    Yes! There are risk involved with longterm antibiotic use!
    Not only can you build up resistances to them.....
    but they damage your system as well. I am living proof!
    I would not consider antibiotics in the treatment of cf/fm unless there was proof that these disorders were bacterially induced.
    Karen
  6. sybil

    sybil New Member

    is causing real problems worldwide,many conditions like T.B. are on the increase because they are becoming resistant to antibiotics.
    they are only supposed to be prescibed sparingly for the treatment of infections and are usually of no use in long term for fighting viruses.
    doctors in the u.k. are being told not to prescribe antibiotics unless it is really necessary.
    so i have not taken any for ages!

    sybilxxx
  7. Mikie

    Mikie Moderator

    There are two ways to determine whether or not a patient should be treated with antibiotics. Do a PCR DNA test for mycoplasmas, or try a cycle of antibiotics to see whether the patient improves. The second option is cheaper and if no bacterial infection exists, no improvement will be seen. There is a high probability of a false neg. with the DNA tests, so a person infected with mycoplasmas may not get the treatment she needs if the test is faulty.

    Karen, no one is suggesting that viral infections be treated with antibiotics. We are talking here about bacterial infections. Between 60 and 70 percent of us have stealth chronic mycoplasma infections and need the antibiotics to control them. If left untreated, stealth parasites often bring on autoimmune diseases like Lupus or MS. It is no coincidence that many people with Lupus or MS also have FMS.

    I am no proponent of using antibiotics unnecessarily, but it is lunacy to let a serious bacterial infection go untreated in the body. If anyone has any doubts about how destructive mycoplasmas can be, just do a web search and read about Dr. Garth Nicolson's work. Many other docs are joining him in treating with antibiotics.

    My illnesses were triggered by a mycoplasma infection and I have been on Doxycycline for about a year. In Jan. I will try to cycle off the drug if I am feeling well at the time. Within three days, I will know whether I can cycle off. Each time in the past when I tried, my chronic sore throats, swollen lymph nodes, low-grade temps, IBS, and migraine-type headaches would return.

    There is a reason people often feel so much better when taking certain antibiotics for other problems. As soon as their course of antibiotics is done, they return to feeling crappy. This, alone, should be a clue that there is an underlying, deeply embedded, infection going on.

    Love, Mikie
  8. nct

    nct New Member

    ...something folks need to be aware of is candida (yeast) problems. overuse of antibiotics contributes greatly to yeast overgrowth, as does the lousy diet most Americans eat; way too high in carbos/sugars.

    and I would guess, already having a compromised immune system, thanks to CFS or FM, yeast problems occur more easily.

    just a thought...

    later.

    Nancy
  9. tandy

    tandy New Member

    I was on long term antibiotic treatment for my FM symptoms b/c my primary dr was thinking of possible lyme disease.(although I tested negative)I pushed for it because I was hoping to see an improvement.I did'nt however see much difference.Sure I had a couple herxes from hell,but all in all I did'nt feel any improvement after 9 months.I have read tho that it takes alot longer sometimes to begin to feel better.I did'nt give it enough time b/c I began to have others problems that just took over me.(gut problems...IBS major flare!)Great luck to all that trys the antibiotic therapy!!Make sure you use a good probiotic!!!!
    best regards,
    Tracey
  10. sybil

    sybil New Member

    after a severe kidney infection about 5 years ago,i heavy doses of intravenous antibiotics.it took about 8 months to clear up the resulting yeast infection,

    sybilxxx
  11. Mikie

    Mikie Moderator

    First, everyone should be taking probiotics whether or not that person is on antibiotics. The reason yeast can take over and stomach problems occur is because the antibiotics kill off the good as well as the bad bacteria. This disrupts the normal balance in the body. As we age, our bodies produce less and less good bacteria, so we need to take the probiotics. We can develop Leaky Gut Syndrome if we do not have good bacteria. This can lead to food allergies and lots of other serious problems as well.

    I have been taking probiotics for years, so I was prepared for the antibiotic treatment. I have never had a stomach problem or yeast problems with my antibiotic therapy.

    I also have stopped eating white rice, white potatoes, anything made with flour, sugar in all its forms except for fructose in the fruit I eat, and high starch veggies like corn, carrots, peas, and beans. Sugar contributes to yeast.

    Finally, there are antifungal treatments for yeast problems.

    I'm not saying that the antibiotic treatment is for everyone, but I am not willing to continue to let the mycoplasmas do any more damage to my body than they have already done, and I certainly am not willing to let my illnesses progress to an autoimmune disease if I can do anything about it.

    ProHealth has a very good probiotic. Good health starts in the gut and if one has an unhealthy gut, nothing else one does will produce wellness. Buy good quality probiotics and keep them refrigerated after opening.

    Love, Mikie
  12. Mikie

    Mikie Moderator

    I'm so glad that the probiotics have helped you. I just do not understand why docs do not tell people that they need to take them.

    As you know, there are so many things that can help us. I don't know of any one treatment that can make us whole again, but everything we do helps a little and can certainly make us a lot better.

    You are a fine warrior when it comes to researching and searching for things to help us, and you are most generous in sharing what you learn.

    There are so many who just give up and think there is nothing which can be done for us. This is far from true. We are all different and react differently to treatments, but if we don't give up and try different things, we will find treatments which help us heal. The problem is that if people have given up, they will not listen to what is helping others and will not try things.

    Thanks for helping spread the word on the probiotics. They are soooo very important.

    Love, Mikie
  13. AJME

    AJME New Member

    Dear Mikie,

    I'm very happy that your treatment with AntiBiotics has
    been benefitial. Do you think your any worst before you started AntiBiotics when you try to discontinue them?

    Let me you tell a little history I have with AntiBiotics.

    First of all I was very sick in my first year of life and AntiBiotics were prescribed like Candy. 1962/1963.

    I ended up having my tonsils taken out during this time also.

    17 years later I learned that one of my kidneys never developed (during childhood) during a Bladder surgery to remove a cyst. So I have 1 enlarged kidney to do the work of 2.

    I had SEVERE acne problem. I was put on a several month dose of TetraCycline (if I remember correctly) along with Retin-A Gel at age 24. This cured my Acne problem. I also
    noticed that I felt very well while on the TetraCycline...not just because my Acne was getting better.

    For about 5 of the last 6 years I've gotten very sick with bronchitis and was put on a course of AntiBiotics. Each time I felt better and stronger then my baseline norm.

    For me anyways it seems like AntiBiotics takes the drag
    of my weary body away from me and I feel somewhat normal.

    I'm very paranoid about taking any meds long-term. I have
    reaped the good and bad. If I could be sure (like mycoplasma blood infection) I would jump on the AntiBiotics
    like it was yesterday. I do have excellant insurance and maybe they would cover the PCR test. Medicare and Aflac Plan F supplement. Hard to say if they would cover such a test though.

    Until then I'll have decide whether to try and take the risk or continue along as a I am...getting somewhat better
    but far from feeling normally functional. I'm 40 now and I
    wonder how long do I wait until I take a risk to feel
    better long-term.

    Thanks,

    Allen
    [This Message was Edited on 11/22/2002]
  14. karen2002

    karen2002 New Member

    Mikie---No I wasn't saying that you were suggesting antibiotics be used for treatment of viruses.
    You and I know that the average patient, when visiting the GP for colds, flu's etc. usually comes away with a script for a course of antibiotics....which is merely to make the patient feel they have gotten their moneys worth. Antibiotics are waaay overused in my opinion, when there are other methods, just as effective, often, and less detrimental.

    I think we need to be careful, in what we recommend, here. I know you have researched this thoroughly, and are very well informed--and that this treatment in your case has beneficial effects.
    Others, though, when hearing of the good results you have had, may ask for such treatment without being fully informed. This is still an experimental treatment, a regime, many physicians would not recommend.

    One must research the side-effects as well, if they intend to take up this treatment. There are those who would be taking a higher risk--in this long term treatment.

    Renal Toxicity has been dose related with a rise in BUN. This would concern me with long time dosing.

    When given over prolonged periods, tetracyclines have been reported to produce brown-black microscopic discoloration of the thyroid gland.

    It can exacerbate of systemic lupus.

    If you have sulfite sensitivity this drug is not for you.

    Shouldn't take calcium while on this drug---absorbtion reduced. Absorption of tetracyclines is impaired by antacids containing aluminum, calcium, or magnesium, and iron-containing preparations. The use of these are common in FM/CFS treatment----but contraindicated when using tetra's.
    Absorption of tetracycline is impaired by bismuth subsalicylate. So much for trying to pacify IBS.

    Long-term studies in animals to evaluate carcinogenic potential of doxycycline have not been conducted. Oncogenic activity in rats in studies with the related antibiotics, oxytetracycline (adrenal and pituitary tumors), and minocycline (thyroid tumors).

    Concurrent use of tetracycline may render oral contraceptives less effective.

    Then we have the fungal overgrowth issue---

    Very important:
    In long-term therapy, periodic laboratory evaluation of organ systems, including hematopoietic, renal, and hepatic studies, should be performed.

    The very fact that tetracyclines after crossing the placenta, are found in fetal tissues, and can have toxic effects on the developing fetus (often related to retardation of skeletal development). Evidence of embryotoxicity has also been noted in animals treated early in pregnancy. This would make me leary of long time treatment, in cf/fm patients.

    As you and I have discussed before--chronic antibiotic therapy--has devastated my systems.
    I would require proof positive that mycoplasmal infection was a problem, that needed addressing, before treatment.
    Even then--I would first search for any and all alternatives to antibiotics.
    Best Wishes,
    Karen

    [This Message was Edited on 11/22/2002]
  15. Mikie

    Mikie Moderator

    I am very sympathetic to your opinion. In fact, I have often said here that when we mention treatments, we need to mention any down sides. If I had had your experience with antibiotics, I would feel the same way. There are plenty of downsides with antibiotics, and I agree that like antidepressants, antibiotics are waaaay overprescribed. Anyone considering antibiotic treatment needs to discuss the potential side effects with his or her doc. My doc does regular lab work to ensure we are on top of things.

    We know that my illnesses were triggered by mycoplasma infection. If the infection were not sill in my body, the antibiotics would have had no effect. If anyone needs proof of the stealth chronic infection, s/he can certainly have the DNA tests done for the five most prevalent mycoplasma infections. Dr. Nicolson's website give the info needed to get the testing done.

    The biggest problem is the half-life of the mycoplasmas; it is only 24 hours. Even if you overnight the blood immediately after it is drawn, half the mycoplasmas have died off before the test is done, and that is assuming that the lab gets the test done immediately upon arrival. If another 24 hour period passes, only 1/4 of the mycoplasmas are still alive. It is easy to get a false neg. report. It is far better to visit the lab site itself when having the blood drawn if possible.

    Dr. Jacob Teitlebaum, along with the author of an article on the Home Page here, suggests that using the antibiotics empirically is perfectly acceptable. If one does not have the infection, the antibiotics will have no effect. For anyone who has felt better on antibiotics, I would highly suspect an infection. Dr. Nicolson's work has shown that between 60 and 70 percent of people with CFS/FMS have chronic mycoplasma infection. That is a huge amount and probably way understated.

    I am only reporting here that the antibiotic treatment has worked for me. Before trying any treatment, we all need to be aware of the possible side effects. We have to weigh the risks versus the benefits. For me, and for my doc, that risk is acceptable. The alternative is too horrible to contemplate. I never want to go back to feeling like I did a year ago.

    For whomever asked whether I am worse when I try to cycle off the antibiotics, the answer is I don't know. The minute the symptoms start to return, I immediately go back on the antibiotics as instructed by my doc. The first time I tried to cycle off them, I went without them for two weeks and was as sick, but not sicker, than I was at my worst. I never want to be that sick again.

    For whomever asked about the probiotics: They are "good" bacteria like acidophilus and bifidus which colonize in the intestines to balance the bad bacteria which resides there. A good balance of bacteria is necessary for good health.

    Love, Mikie

  16. twjen

    twjen New Member

    Ive heard some people mention doxycycline for FM.
    It is one of the only antibiotics im not alergic to, and took it a few times first year i was sick cuz the Dr. kept saying i had a sinus infection (i didnt think i had any sinus infection and isnt even why i went to dr.). Anyway, it was during this time my symptoms increased. Then in Dec. my DR. gave me it again and i started having diareah that never stopped, and now have colitis. Maybe it had nothing to do with the doxy. though. Then last spring i took doxy. again cuz id been really sick with an upper respitory infection. Afterward my fibro. symptoms improved greatly with the coming of warm weather. Seriously I dont think the doxy. had anything to do with anything, just so happend that i took it during a flare and then when i was going out of one.
  17. karen2002

    karen2002 New Member

    I understand your position perfectly--Mikie!
    These disorders are such an individual thing---symptoms, treatments, systems affected!
    Do you ever just feel like one big experiment, lol,?
    Only thing is, I wish I, the mad scientist, could distance myself from the emotions, and symptoms--would make this quest a heck of a lot easier. Quess that would decrease the motivation, and drive, though.
    It's wonderful to hear how much you have progressed! Keep up with the good fight.
    We're all in this together!
    Karen