Good or Bad Experiences re: Antibiotics Treatment

Discussion in 'Fibromyalgia Main Forum' started by CAAnnieB, Aug 21, 2006.

  1. CAAnnieB

    CAAnnieB New Member

    Hi All,

    Has anyone been taking longterm Antibiotics for the underlying, chronic bacterial infections in these DD's? I'm very curious to hear your experiences!

    I'm currently on Antibiotics (multiple) & many natural supps to treat Chlamydia Pneumonia/ Mycoplasma infection/ yeast. Am not feeling a BIG difference yet, but I am hopeful it will help in the long run.I've been on the protocol since January. I was told it would be at least 1 year of treatment, probably more, as I've been ill with FM for many years. (13+)

    If you've tried this route & it failed: I'd VERY MUCH like to hear from you! Success stories are welcome too!

    Thanks bunches,

    Annie
    [This Message was Edited on 08/22/2006]
    [This Message was Edited on 08/22/2006]
    [This Message was Edited on 08/23/2006]
    [This Message was Edited on 08/23/2006]
  2. kellyann

    kellyann New Member

    Hi,
    I am on several antibiotics and antivirals for clamidia pneumonia, cmv, ebv, lyme, and some others I can't even think of right now. I feel much worse on the meds. But my doc told me I would because of all the die off of the viruses.

    I am hoping that taking all this miserable medicine will pay off someday! I bet you are too! Just hang in there!


    Take Care!
    Kellyann
  3. karinaxx

    karinaxx New Member

    but just dont have the energy in the moment to put all this info together.
    i had a very bad expierience with antibiotics and there is some research and reports , that antibioics have worsenend many patients and Dr.Lerner has given one report that sugests that up to 50% of his patient actually got worse by antibiotic treatment.
    other research suggests that some antibiotics cause autoimmune illnesses like MS and M.Gravis to flare up or even induce autoimmune hepatitis.
    that is what happenend with me and i had severe Allergic Reactions, with an increase in Creatinin levels.
    thinking back about my whole treatments, it looks that it was many times the antibiotic which caused autoimmune reactions a while after stopping them.
    i have been on an other reaearch forum, were people followed the recommondatin of Nicholson and he was online too, many of them were getting severly worse.
    i strongly suggest after reading all the reports and my own exp., that antibiotic treatment is not taken lightly.
    i am even thinking that some of the herxing issues described by many, is not herxing, instead they are autoimmune reactions.
    i will try and check if i find some of this reports and research done, again.
    love karina
  4. CAAnnieB

    CAAnnieB New Member

    Thanks for your replies. I visit a web site devoted to Chlamydia Pn. treatment (cpnhelp.org) & folks there seem to be gradually getting better on the protocol. There are some people with remarkable stories of major healing.

    But I sure would like to hear if there are any negative reports from being treated this way. I'm very interested in the info you have to share, Karina! I'm so sorry that you had a worsening of your health on the AB's. I'm assuming that your liver has recovered? Did you experience any symptoms that persisted after stopping that treatment?

    Again, thanks for your input.

    Blessings & Hugs,
    Annie
  5. harrysmom

    harrysmom Member


    Dear Annie,

    It is very ironic that I read your letter about antibiotics today as I was just getting ready to post a question to other CFS/Fibro sufferers on a similar subject.

    I, like many of you, suffer from either sinusitis or frequent sinus infections and after two rounds of Doxycycline in June the infection is still there and the antibiotics began to cause so many weird symptoms I stopped and have lived with the infection all summer. This past weekend I pushed myself way too far by traveling to see my dad for his 85th birthday - a two and a half hour car trip - and by Sunday night I was collapsed in my roommate's car while being driven home and couldn't get out of bed all day Monday. Also, the sinus problems seemed worse and so I took two Doxycycline pills that were left over from earlier in the summer and by last night this is what happened:

    Bad shoulder pain in both shoulders, hand pain and red, blotchy spots on hands, some itching, lips very red and slightly puffed up. Needless to say I stopped and have an appointment for tomorrow to see the doctor as I know I can't let the infection go on indefinitely. Do any of you experience strange symptoms when given antibiotics - things that seem to feel like the autoimmune problems are aggrevated and made worse? This upsets me as I worry that some day I will really need antibiotics for some life or death situation and not be able to tolerate them.

    Thanks in advance for your input on this - and by the way - do any of you know any non-antibiotic meds or treatments I could use to cure the sinus infection?

    Harrysmom
    [This Message was Edited on 08/22/2006]
  6. PianoGirl

    PianoGirl New Member

    I have had at least 4 ear infections since I was in a car accident in October. I have been on several rounds of antibiotics and steroids and I am fighting yet another one, have a doctor's appointment this afternoon for it.

    I thought that you couldn't be on antiobiotics all the time because your body can build up a resistance to them and make it get to a point where an antiobiotic won't work.

    Does fibromyalgia cause alot of infections? I am really new to all of this and just have so many questions and not enough answers.

    Please le me know more if anybody can.
  7. Jeanne-in-Canada

    Jeanne-in-Canada New Member


    I'm glad you asked. I was on abx for mycoplasms too, the same ones as you. Me and the perscribing doc both knew I had candida issues, but they were systemic. I had large reservations and so did my primary doc (GP), but I trusted this person. I was only on tretracycline at low dose, every second day. Every second day was even more hellishly painful than my norm back then, which was already the worst I've ever been.

    I eventually developed chronic vaginal yeast infections, which hadn't been a problem before, but they are now chronic for 7 yrs since. I stayed on abx for 9 mths. There were no long term benefits, only chronic yeast that no doc has helped me w/ since.

    I've had bouts of mycoplasm recurrence since, but they resolve on their on when my immune system gets stronger. So in short, the mycoplasms wax and wane w/out abx. I think they may have cropped up lately because I've been exhausted for mths, and that was my trademark symptom when they got strong. I have FM primarily, but some CFS symptoms come back if I get too run down. They will resolve again, like they always have before when I take extra care of myself. The yeast problem does not resolve now.

    I totally DON'T recommend this treatment. Suppressing your immune system, which abx do, is not the way to deal w/ these mycoplasms. It's not safe and can open you up for worse organisms to get the better of you. You need to strenghten the immune system.


    Jeanne
  8. deliarose

    deliarose New Member

    do u think the same thing applies to antiviral treatments?

    I have to say I'm pretty freaked about all these treatments.

    I had a bad experience with Xyrem and that made me question the wisdom of the doc who recommended it.

    The same doc also Rx'd antivirals .. but I see that Rich Carson preferred to go with transfer factors.

    It's so confusing and there's so much at stake.
    Delia
  9. victoria

    victoria New Member

    There are many who do get better with long term abx for Lyme and associated tick infections, but it sadly seems like it doesn't necessarily work for everyone.

    There is a group that is following the Marshall Protocol that have failed with long-term abx treatment for Lyme that seem to be doing well, but the results are not 'in' yet.

    Part of the problem why people don't do well may be because certain strains don't respond to the usual course of abx, like doxycycline, whether they're naturally resistant already or have become resistant to treatment.

    I don't know about myco or CPN, but I do know in the USA alone there are over 100 variations of the spirochete. Which means different ones respond to different abx. Also, it can take 18 months for abx to penetrate the cell wall form of lyme; it may be true for other bacteria as well.

    Also, these bugs are really smart and know how to hide out from the initial 3 week treatment that is the standard medical protocol for lyme and such - they go intracellularly and also form cysts. (So do the bacteria that cause bladder infections, not sure if that is e. coli).

    So bacteria are not the simple bugs that we have thought they were...

    Also, keep in mind, abx kill bacteria, not viruses like herpes (shingles), etc.

    all the best,
    Victoria


  10. Mikie

    Mikie Moderator

    I know you know that I have been very successful with the Doxycycline treatment for my mycoplasma infection. It took a long time, about 2 1/2 years, to get the infection basically under control.

    Dr. Nicolson told me in an e-mail that with the mycoplasmas, like Lyme, there can still be cysts deep in the body and they can reactivate when one gets run down, even when the infection appears to be gone. I've had this happen several times and I keep the Doxy on hand when this happens. It starts with feeling hot and running a low-grade temp. I take the Doxy for 10 days and will Herx, but the Herxes now aren't as bad.

    If I were starting out now, I would take the ABX for six months, pulse them for another six and then switch to the transfer factor for mycoplasmas. The TF's I've taken for stealth viruses have worked amazingly well. They have fewer side effects except that they do elicit a strong immune reaction in the beginning. That's because they are training the immune system to recognize pathogens in order to kill them. Back when I started the Doxy treatment, I didn't know about a TF for mycoplasmas. I had been sick for more than 10 years when I started the treatment.

    Good luck and hang in there. I am surprised that you haven't Herxed. It may be that the drugs aren't killing off enough bugs to cause a Herx. Keep us updated.

    Love, Mikie
  11. CAAnnieB

    CAAnnieB New Member

    I really appreciate everyone's input/ opinions. It's very difficult to know exactly how long to stay with a treatment before deciding if it is bringing success, doing nothing or making you worse!

    I've been through SO many different kinds of treatments over the years. I keep hanging on to hope that I will hit upon "the" right combo of meds/ supps that will bring about a significant amount of healing/ improvement in my functioning. I will never give up!

    My current treatment with a Fibro Dr. who zeros in on the Chlamydia Pn., Mycoplasma, yeast & hormonal issues has been VERY difficult...I have reacted to ALL antibiotics in a BIG way. I even reacted to the NAC, which is a natural supp that kills the Elementary Body form of Cpn.

    Mikie, I didn't go into detail on the herxing I've experienced! I am Queen of Endotoxin Overload! It's been really hard to suffer with the reaction symptoms on top of my baseline FM symptoms. I've had to go slowly on just about everything ...I am currently taking a LONG break from Tinidazole as I was having a major reaction after just 2 pulses. It does get a bit discouraging, but I DO remind myself that this is a long-term treatment. I am probably reacting so strongly to treatment because my bacterial load is high.(This is what I've been told & it seems logical.)

    Of course, all of this protocol is experimental...Just like what Mikie has been doing for years & those who go to the FFC's. I'm trusting that my Dr. is making good decisions re: my care based on his ongoing research & experiences with his patients. To me; it has been worth trying...After all, what is the alternative?!

    The reason I posted this was because I truly want to hear pros & cons of AB treatment. If there are concerns or people have been told of dangers of this type of treatment, I want to know. Again, I appreciate everyone's responses. This board is such a great resource for us! Thanks so much.

    Hugs & Blessings,
    Annie
  12. CAAnnieB

    CAAnnieB New Member

    Wow, this board moves at warp speed! Just bumping for more responses!
  13. tandy

    tandy New Member

    for others interested in this~

    I know we have a few newbies who are looking for info.
  14. Mikie

    Mikie Moderator

    Doctors usually do not explain the need for probiotics when taking ABX. If one does not take them, the ABX will cause stomach problems.

    I was on the Doxy for 2 1/2 years, and I still pulse them when I need to. I have had no stomach problems.

    We are all different and we have different reactions. One has to weigh the potential risks versus the potential benefits before taking any Rx. For me, it was a no brainer to take the ABX to eliminate the horrid mycoplasma bacteria which triggered my illnesses and made me so sick. I am grateful for the Doxycycline and glad I did the ABX treatment.

    Love, Mikie
  15. Adl123

    Adl123 New Member

    I have a history with antibiotics.

    For several years, I kept on catching bad colds, with bronchitis, and missed a lot fo work. None of the doctors I was seeing at the time investigated allergies, or tested my immune system. They just prescribed antibiotics, for as much a 14 weeks at a time. With the result, that now, I'm allergic to all 5 basic groups of antibiotics. I just pray I don't get a really aggressive infection of some kind, because I would be in a fix.

    I hope the meds you have been given help you.. Please be careful of antibiotics, and have yourself tested often.

    Hugs,
    Terry