Mycoplasma an Underlying Issue? - I don't know what to think

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Scotty81
New Member


Date Joined Jan 2012
Total Posts : 3
   Posted 1/26/2012 2:47 PM (GMT -7)   

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


Loopy Pig
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Date Joined Aug 2003
Total Posts : 17
   Posted 2/3/2012 7:21 PM (GMT -7)   
The CFIDS guy is WRONG!!!

Mycoplasm is ABSOLUTELY a pathogen that causes CFIDS and keeps CFIDS going. I had CFIDS from EBV and HHV6 for several years; I never had any bacterial issues. However, my brother got mycoplasm and rolled straight into CFIDS from it (he already had latent EBV like I did from highschool). Luckily, my brother only had to take antibiotics for 6 months before his went into remission, but he had ALL of the same symptoms that I had for the 4 years that I had full blown CFIDS.

Your daughter is young, which is GREAT news. Young people have a better chance of recovering, but it is crucial that you get her aggressive treatment now. I am not trying to scare you, but the longer a person has CFIDS, the more treatment resistant it becomes. You may have to travel to find a doctor with the expertise on this, but they are out there.

Marrit
Regular Member


Date Joined Jan 2012
Total Posts : 146
   Posted 2/11/2012 4:54 PM (GMT -7)   
No one can advise you, but if it were my child I would also look at alternative remedies such as Olive Leaf Extract or other natural antibiotic/anti-parasitic/anti-viral. Many CFIDS people find OLE helpful. It has helped me.
After trying a natural approach for 3 months I would re-evaluate to see if the myco titers have come back down.
You are wise to be concerned about long term antibioic therapy, which has a whole host of issues.
However, some antibiotics are much worse as pertains to side-effects, so perhaps her allergist would work closely with you to ascertain which ones are most effective with the best safety profile.
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