Question for Jam338

Discussion in 'Fibromyalgia Main Forum' started by theatergirl, Aug 23, 2008.

  1. theatergirl

    theatergirl New Member

    Hi there,

    I have been full blown CFIDS since 1997. Spent that first 1 yr severely disabled, but then got better. That said, for the last 10 yrs or so, I have been relapsing remitting and have had periods of time, up to about 6 mo or so, during which I could pretend I was not sick and, of course, ramped up my activity/stress, etc. I am a theatre artist, director/producer/actor.

    I went down hard again in May. It has always been russian roulette with me...what amount of "stress" was going to end things again. I am bedridden always for a least 3-4 mo, but have seemed to bounce back. Did lots of research of and on, tried to keep up and learn etc.

    This time...I seemed to be pulling up about 13 weeks in and did a very short trip with my DH to the coast with family for one day...came back home and crashed bad. This has never been the pattern for me. My gut is telling me that something has changed this time. Inside, I felt like it might come, but still had so much confidence in myself because I am so stubborn, a fighter, smart and talented, etc.

    This is the first time in 12 years that I am really scared that this may be the journey into ongoing and omni-present CFIDS. It just kills me. I have a passive doc (Kaiser), can't work at all, already lost my career and now do not believe that there is anyway to lead a "normal" life. I hate to lose hope, but also want to be realistic about this journey. Mine is definitely viral...but all the tests are always elevated IgG and not Igm, so, like the rest of us, the doc says...well, no active infection, blah, blah. I know better. I haev sung the same song since I was sick with severe mono in 1978 which developed into Guillian Barre which left me paralalysed.

    I am going to begin again with the doc thing, and want to make sure, at least, that I ask for everything in the blood tests. I know I do have chronic levels of HHV-6, CMV,EBV. ANA screen positive, ANA pattern 1 2+speck, no mycoplasm, clymadia, lupus.

    Do you have any thoughts on what else I should ask for?

    Hate to ask you all this, since you are so limitede, but you are so smart too!!!

    Thanks for you thoughts,
    Much love,
  2. victoria

    victoria New Member

    please be sure you also include the Western Blot test for lyme and the tests for other stealth pathogens like mycoplasma, bartonella, babesia, and others, as there is a huge overlap with CF/FM symptoms, plus co-infections which are harder to test for.

    Also insist that the WB be done by IGenex as they specialize in testing for lyme and co-infections, and they have the highest provable reliability in their testing. (Unfortunately at the best, it's still only about 70% reliable).

    So glad you're being able to get all these tests run. When we first had our son tested for all of these things, the tests ran over $3K, the only thing that showed up was Lyme but, as I said, tests for other stealth pathogens are less reliable. As time went on, it became apparent he had bartonella and babesia.

    Right now he will soon be going back for re-evaluation and re-testing for viruses, not sure what all.

    all the best,

  3. theatergirl

    theatergirl New Member

    Hi back,

    I am so impressed by you. You are so sick and you communicate so well despite it. I am proud. I have been fighting this same fight for so long. When I was first down with full blown CFIDS in 1997, I did test after test. It was clear to me then as it is now that mine is viral subset. I know about Doc Lerner etc., and have done quite alot of research over the last almost 12 yrs. My progression is very similar to some, wiht onset of viral problem in 1978. At that time, they did lots of tests, since guillian barre was very new and there was no plasmaphorsis or IVIG treatment. I was paralysed fro the waist down and partial waist up with cranial involvement too. For about 10 years I relapsed over and over, but the neuros kept insisting that GB could not become chronic. Even MRI's and SPECT scans show nothing, of which I am glad.

    The consistency has been in finite IgM's with EBV, CMV, but constant high titers in IgG's for all herpes with HHV-^ included. I am convinced that these have mutated to particulant or stealth (I followed Dr John Martins research for some time - stealth viruses) and even did a fundraiser for him in 1998. Also went to DC twice to lobby with the CFIDS association.

    Thanks for the suggestion for more regular viral load documentation. I am still convinced that I do not have Lyme and other than this illness, I have been very healthy. Not sure what is happening this time, but I feel as if the illness is advancing and I am declining.

    I am thinking of asking my doc for a maintenance program of
    valtrex. Suppose it couldn't hurt. Hope he can...I do not hold much for docs at Kaiser...they just do not keep up nor seem to have time to look over things you bring them either. I did just send him some updated info on the viral subsets and research going on. Also submitted info for the study coming up at Univ of Chicago for the genetic link research.

    We'll see. Paying attention to all the stuff about CFIDS is sooooooooooooooo tiring!

    Anyway, so glad to me you online and I am haning out most of the time and watching for new things. I'll keep you all posted here on what I figure out too.

    Best wishes,