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Old 01-25-2012, 02:35 PM   #1
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Mycoplasma an Underlying Issue? - I don't know what to think

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.

Thank you.

Scotty

 
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Old 01-26-2012, 04:24 AM   #2
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jenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB User
Re: Mycoplasma an Underlying Issue? - I don't know what to think

Briefly, Mycoplasma is also common with Lyme Disease. FM and POTS are also common with Lyme. Many people with lyme are often first misdiagnosed with CFS (moi included). If you want to rule out LD you would have to have blood sent to Igenex Lab in Palo Alto CA, no other lab is qualified to test for lyme and no doctor, other than an LLMD (lyme literate medical doctor), is qualified to treat. You might also visit the lyme board here for further info.

All the best,

Jen

Last edited by jenj770; 01-26-2012 at 04:26 AM.

 
Old 02-04-2012, 07:40 PM   #3
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Re: Mycoplasma an Underlying Issue? - I don't know what to think

Who diagnosed your daughter with CFS, FM and POTS.? That sounds like the first problem. I would find a better doctor. None of these are sufficiently well understood for some doctor to just diagnose all three. That is silly. What exactly were the symptoms and tests done to arrive at this diagnosis? Sounds like a sloppy alternative doc who makes money selling supplements.

You need to go back to basics and go through the obvious possibilities first. By that I mean rule out Anemia, Hypothyroid, Adrenals, liver, kidney, mono/EBV etc...

In order to get help, you need to be very specific about your daughters condition, situation, age, symptoms, weight, drugs, history, travel history, stress etc.. That should suggest where to begin looking?

Then work up a differentials list and a plan for eliminating possibilities. Don't let any doctor just tell you she has 3 syndromes. You need real evidence based diagnosis by a bright doctor.

 
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