I am looking for some guidance from the many individuals who may have been down this path before. My teenage daughter was diagnosed with CFS, FM and POTS. Her allergist did identify mycoplasma as equivocal in the summer and slightly positive in the fall. In trying to read up on this, I saw a body of literature, mostly put out by a PhD researcher, who said that untreated mycoplasma infections were found in many CFS patients, and that the treatment was antibiotics for about a year. This all seemed plausible, to me a layman, but someone with a general scientific background.
Just recently, we took our daughter to someone who I would definitely consider to be a CFS specialist. When I asked about whether mycoplasma could be the cause of a lot of symptoms, he immediately dismissed this as a cause. When I pressed him further on this point, he said that he did not believe the literature on this, and that what was "out there" on this was biased in favor of special tests that he said this one researcher was promoting.
If he is correct, then I am glad that he warned me to steer clear of this, and of giving my daughter antiobiotics for one year, which can have their own side effects. However, if he is incorrect, then we could be missing something here that is more directly treatable. So, my concern is that I don't know who to believe. The CFS specialist certainly is someone who is well regarded in the CFS community, so on one hand, I would tend to believe him.
To test that hypothesis, I looked for literature that was produced by someone OTHER than that PhD researcher. There wasn't much, but I have found some reports appearing in various places. So, I have this nagging feeling that I need to be absolutely sure that mycoplasma is not an issue that we need to deal with.
Have any other CFS patients had experiences that they can relate to here? Has anyone seen any physician with more of an infectious disease background that could either support or refute what the CFS specialist said? Interestingly, the allergist, who we haven't really talked to much, but whom I personally regard as someone who keeps up on research, as well as sees patients, wants my daughter to take a round of antibiotics until there is no sign of infection. Although this doesn't say mycoplasma is causing CFS, I believe he is implying that her immune system will be better if there is no infection.
I'd appreciate any advice other members of this forum could provide.