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Long-Term Mycoplasma Pneumoniae Infection

Discussion in 'General Treatment' started by acouchy, Jul 26, 2011.

  1. acouchy

    acouchy

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    Has anyone ever gone on a year long course of antibiotics for a mycoplasma pneumoniae infection and had good results? If so, what type of antibiotics were used and which ME symptoms improved?
    Does anyone know where to find any information about the possible consequences of having a mycoplasma pneumoniae infection for a long period of time?
  2. Misfit Toy

    Misfit Toy Senior Member

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    I went through 6 months, became so sick and exhausted and gave up. I tried Dioxychlor, I think that is what it was through IV. They did tests and I still came back with it. I don't advice on long term antibiotic treatments. My bowels have never been the same and that was in 2002. After about 8 months after I stopped everything; they ran another test and I came back with no mycoplasma. My doctor and I were baffled. BUT, Whatever! It was gone and my system got to it!

    It seems that the people I know who do long term antibiotic treatment, including me, end up more ill. I think you need to build up the system instead of aggressive IV therapy.

    I used Gentomycin and then Cipro.

    You know, most people have this at one time or another and it usually runs it's course. We just happen to be immune deficient which makes it hold on longer.
  3. Lala

    Lala Senior Member

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    I was treating mycoplasma pn. along with other pathogens (cpn and probably lyme) for years by atb. I tested negative for mpn after 3,5 years on combination of antibiotics. I am still on them and now it has been 5,5 year. Most of my problems/symptoms have gone, those that stayed are some abdominal pain and some mental issues like depression. I am on Wheldon/Stratton protocol. You can read more about it on www.cpnhelp.org.
  4. anniekim

    anniekim Senior Member

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    Hi Lala, when you say most of your symptoms have gone, do you mean all your Cfs/me symptoms or symptoms pertaining to these infections? Thank you
  5. Lala

    Lala Senior Member

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    Hi Annie, what is the difference? Mycoplasma, chlamydia, lyme, all cause fatigue, muscle and joint pain, brain fog, great inflammation throughout whole body, etc...
  6. anniekim

    anniekim Senior Member

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    That is why asked. I am just trying to establish whether basically your general ill health improved dealing with these infections? Namely many of the me/Cfs symptoms improved dealing with the infections, leaving you now with just the abdominal pain and depression. If so, that's fantastic and very interesting to hear that if identified infections are effectively treated one can make significant imorovements, thank you.
  7. Lala

    Lala Senior Member

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    Yes, Annie. I still get little pain here and there and I still react mildly to tinidazole pulses, where it is expected there should not be a reaction before end of treatment. So I am still not done, still under the treatment, I am still not over. But generally I am much better, the state is incomparable to the beginning. I started atb as my last chance or effort, I was bed-bound except that I went to the toilet and even this started to be very difficult. Now I can walk 17km and it is much less exhausting than walk to the toilet next to my bedroom 5 years ago. I am convinced that ME/CFS is undiagnosed and untreated infection, the severe cases are mix of infections. I am still trying to solve my abdominal problems, where I think it is a different one on top of the previous, I would not be surprised if some parasites were in game, too.

    The journey through such loads of antibiotic was not easy at all and positive changes happened only very slowly and gradually, nothing like when one has angina, but it was definitely worthwhile.
  8. Francelle

    Francelle Senior Member

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    A terrible cough started for me in 2005, then Mycoplasma Pneumoniae (M.P.) was isolated. Eventually after two hospitalisations (2006 & 2008) and about five lots of I.V. and oral short term antibiotics the M.P. was still evident - much to the surprise of my GP. After the second hospital discharge (late 2008) I started four months of Azithromycin and voil the cough disappeared.

    However none of my other M.E. symptoms disappeared, except perhaps a slight, almost imperceptible improvement in energy.

    Surprisingly though, only this year (2011) I found out that I still/again (?) have slightly raised titres to M.P. This obviously denotes a chronic M.P. infection. Talk about stubborn!
  9. anniekim

    anniekim Senior Member

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    Hi Lala, that's fantastic treating these infections with long term abx has helped your health to improve so much, albeit not without difficulty along the way

    May I ask how you managed to get tested for mycoplasma? Did the doctor consider it, did you and then ask for a test. Is it an infection easy to test for? Ie standard blood test etc. Thank you
  10. Lala

    Lala Senior Member

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    Hi Annie,
    no problem for testing for mycoplasma pn. here. I do not remember whether I suggested it to my doctor or whether she did it on her own. I tested for antibodies and first year also for KFR. KFR is very unreliable, so we then stopped to do it. You can be tested on mpn on all departments of medicine- GP, pulmonary, immunology, reumatology, etc. It is standard test.
  11. acouchy

    acouchy

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    I kinda feel the same way about just letting it run it's course and just thinking of this as an indication of my immune system not functioning properly. I have had an active infection for at least 5 months without getting full blown pneumonia but I have no idea how long I have really had this infection for. Then again, I have no idea about the long term consequences of not treating it. Yet taking antibiotics for an extended period of time does not sound good. In the past I had a C. difficile infection just from taking antibiotics for a week when I had a root canal. I can't imagine a year or more of intestinal tract hell.
  12. acouchy

    acouchy

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    Thank you for the link. I have glanced it over. Wow. Sounds like overkill but very hopeful. I will definitely show it to my specialist.

    I am so happy to hear that most of your CFS problems/symptoms have gone. Do you think your current abdominal pain has been caused by the antibiotics killing off all the healthy intestinal flora or was the abdominal pain an issue before you started treatment?
  13. anniekim

    anniekim Senior Member

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    Thanks Lala for your reply, appreciated
  14. acouchy

    acouchy

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    Yikes... I guess I should count myself lucky so far. Since finding out I have an active infection 5 months ago, I haven't had full-blown pneumonia or any unexplained cough.

    After you finished the 4 month course of Azithromycin and your cough disappeared did you get tested for mycoplasma pneumoniae to see if it was completely gone?

    I guess I am just wondering if it completely went away for a while then either came back either on it's own or you got another mycoplasma pneumiae infection from coming into contact with someone who had the infection.
  15. Lala

    Lala Senior Member

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    Hi acouchy,

    my abdominal pain is certainly not caused by antibiotics, I had long history of it before atb treatment, in fact along with fatigue it was my worst problem. I had bad appendectomy 15 years ago, when doctors cut through my colon and then I got peritonitis and large inflammation in my abdominal area. Since then I have always suffered from problems. Antibiotics helped me to solve lots of problems in pelvic area, but not all. I know there is some permanent damage, too and I suspect other things as well.
  16. acouchy

    acouchy

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    Hi Lala,

    Is it irritable bowel syndrome type pain (crampy and bloaty)?
    I just ask because that is the diagnosis I got a few years ago after submitting half a dozen stool samples over several years and having them all come back negative. Last month I did a dramatic diet change (in hopes of getting rid of my migraines and lightheadedness attacks) but instead I have experienced an incredible improvement in my IBS.
  17. Lala

    Lala Senior Member

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    Not exactly. It is constant pain around my damaged area (in place of appendix and right ovary involved) plus cramps after eating food. Which diet helped you to improve your IBS?
  18. Francelle

    Francelle Senior Member

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    As far as I know the Pulmonology Professor who treated me for the cough didn't retest me for M.P. after the four months of Azith. I know I should have pushed for it as I have generally been fairly proactive in advocating for myself. He was more concerned and relieved in alleviating my cough I think.
  19. acouchy

    acouchy

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    Last month I started following a strict Paleo diet. After a week there was a huge change in bowel movements (less frequent, more consistent, less quantity). There was immediate weight loss and by the end of the month I had lost 13 pounds. Usually I have one or two really bad IBS attacks a month but last month I did not have any.

    This month I decided not to follow it as strictly and allow myself some treats. Having dairy was no suprise. Definitely a little lactose intolerant but I will never completely give up ice cream. Grains and white potatoes... I had no idea as to how bad they are. I ate them both at dinner one night. The next morning I was very gassy and crampy. My abdomen area not only felt very bloated but it looked very bloated. So I got on the scale and I gained 5 pounds! I'm guessing it was 5 pounds of water and inflammation. Follow the diet for a few days and I lost the 5 pounds that I had gained. I have had grains several times since that initial time and it is always the same result. I read that grains can cause inflammation but I never really believed it until now. So I have decided that I will never eat as many grains as I once did.

    My boyfriend has been extremely supportive of my decision to try this diet and has also been following it. He is healthy but he has had the same experience. He lost 15 pounds and whenever he eats grains he gains 3 pounds and is bloated.

    Paleo might be something to consider trying.
  20. acouchy

    acouchy

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    I don't blame you for letting not advocating for another test. It is an exhausting job. It's taken me 15 years to even start advocating for myself. Glad I finally have (I found out that I have this infection because of my own efforts) but advocating for oneself is hard work even at the best of times. It's so horrible how the medical community does not seem to care. Here is something so tangible and yet there is so little information about the long-term consequences of having a mycoplasma infection.

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