• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Have Scheibenbogen, Light, and Bergquist already cracked ME/CFS etiology?

Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
Jesse2233 said:
And they make good candidates for mestinon
Click to expand...

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.
 
pibee

pibee

Senior Member
Messages
304
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:
You must log in or register to reply here.