The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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What do I ask my General Practitioner to be tested for?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by YostFMX, Apr 12, 2018.

  1. YostFMX

    YostFMX

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    Im going to see my general practitioner tomorrow what do i ask to be tested for. I have had CFS in some form as far back as a child as i can remember. Im 100% i have it drs have told me i have as well, seems viral autoimmune related. Ive told general practitioners before about all my symptoms (classic CFS) and they have done blood test (who knows what they were for) and they say "it shows you are 100% health", they tell me some BS that im fine and say i have CFS, when i ask to see a specialist they say, "In what?, your test all show normal and insurance won't approve it with normal test", dead end. I guess my real question is what do i have to do to get somewhere? or to a specialist? or test to ask for to get somewhere other than a dead end.
     
    panckage likes this.
  2. YostFMX

    YostFMX

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    Im in the US (if that makes a difference)
     
  3. hangininthere

    hangininthere

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    I just self-treat by taking supplements that I've learned about from CFS support groups.

    From what I've read on CFS support groups, I think to see CFS specialists you have to pay cash.

    My state Medicaid did pay for my rheumatologist who took a special interest in CFS and diagnosed my CFS and stuck up for me with medical excuse letters. This was years ago in 1995, and he told me that CFS is a deficiency of oxygen at the cellular level and that there's no cure for CFS and to just give myself general support to my health with vitamins and such. I don't know if he feels the same way or not. Knowing him and his interest, I think he is probably up on the latest info about CFS by now. The major clinic he was with quit taking Medicaid several years ago, so I can't see him anymore.

    I don't remember how I found him or if I needed a referral to see him. It was so fortunate for me when I found him. He's the only doctor I've ever seen who believed CFS was real and that I had it.

    Once in a while someone gets lucky and has a family doc/primary physician or other mainstream doctor who is knowledgeable about CFS.

    My ex-mother-in-law had success for her CFS with the prescription antiviral Amantadine. Her family doc prescribed it for her for years, which kept her CFS in 'remission' and she felt totally better, taking it every day for many years, decades. I went to her doc and tried it, and had the intolerable side-effect of depression, which I also have anyway, and I had to quit taking it after the first week.

    The Amantadine is or was used to revive carbon monoxide poisoning patients in ER. It gives you oxygen. When I tried it, my brain-fog cleared and I was so hopeful, but then the side-effect happened. The Amantadine drug brochure listed depression as a possible side-effect.

    When I tried the antiviral supplement Cat's Claw, I got depression from that right away, too, and had to discontinue it. The depression stayed for three months until a member of another CFS support group suggested I try a high-dose of Magnesium and it snapped me right out of the 'drug-induced' supplement depression. A lot of people have bad side-effects from antivirals, even though we could use them, especially those of us who may have a viral-induced CFS like I suspect I have.

    Patti
     
    Last edited: Apr 15, 2018
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  4. Learner1

    Learner1 Forum Support Assistant

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    Sorry this is past your deadline, but maybe you'll go back.

    Tests that could be helpful might be:
    • Immunoglobulins with subclasses
    • NK cell function
    • T cell and B cell panels
    • CBC
    • CMP
    • Titers for viruses
    • Homocysteine
    • Methylmalonic acid
    • RBC folate
    • DNA stool test
    • Full thyroid panel
    • DUTCH test
    • Genova Diagnostics NutrEval
     
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  5. YostFMX

    YostFMX

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    My Dr stated that he would not do the virus testing i asked for because he sees no evidence to do them (the evidence he was taught).
     
  6. Learner1

    Learner1 Forum Support Assistant

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    Perhaps you can take him some evidence. Maybe something here will help... There are many other articles too.
     

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