Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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Have Scheibenbogen, Light, and Bergquist already cracked ME/CFS etiology?

Discussion in 'General ME/CFS Discussion' started by Jesse2233, Aug 14, 2017.

  1. pattismith

    pattismith Senior Member

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    I guess people having antibodies blocking acetylcholine receptors (muscarinic receptor) will have strong reaction to acetylcholine receptors blockers like promethazine,
    Maybe it could explain partly @Wayne reaction to Phenergan?
     
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  2. Jesse2233

    Jesse2233 Senior Member

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    Yes good point

    And they make good candidates for mestinon
     
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  3. pattismith

    pattismith Senior Member

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  4. Gingergrrl

    Gingergrrl Senior Member

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    My case is so odd b/c I have the anti-muscarinic autoantibodies and yet I had a horrible reaction when I tried Mestinon in 2014. It seems that I require the perfect balance of acetylcholine (not too much or too little). I can tolerate IV Benadryl as a pre-med for Ritux (even two doses of it) but if I had to do this repeated days, I would develop a toxicity reaction. So meds at both ends of the spectrum (Mestinon and Benadryl as two examples) have to be in perfect balance. I am sure I am not explaining this well and it might not be adding anything helpful :D.
     
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  5. pibee

    pibee Senior Member

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    Having 8/9 positive and M4 even 7x increased (result 49 , range <7 ), others close, I tried only hurzapine A, with minor improvement, occassionally, sometimes I feel nothing.
    From MCAS drugs (vit C, ranitidine, loratadine and quercetin, is what I tried so far) I have quite big benefit with my neurodevelopmental symptoms, brain fog etc, (hope i dont jinx it), as well as from antivirals (Valtrex).

    CellTrend test is ELISA, and as @paolo explained in one of his post problem could be that it's not only to outer surface proteins but also inner surface receptor proteiins. But I still dont see a reason why would I be making very high autoantibodies to inner surface proteins?! Does this matter so much? I still dont get when or do autoantibodies penetrate cells sometimes?!

    I also have Sjogrens and since M3 is found in 90% Sjogrens patients maybe this is why I am so high positive. But I got ME from mom's side, she has it, while Sjogren's is from dad's side - my aunt.

    I'd prefer if these autoantibodies are significant but I dont believe in this much.

    It is discouraging that Rituximab doesnt even work for Sjogren's fatigue.

    But this all reminds me of autism findings - I listened to Dr Theo on MCAS, mentioned they find autoantibodies to brain in 30% of autistic kids, and those also have MCAS issues , allergies.
    So 30% similar to ME case.
     
    Last edited: Feb 8, 2018

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