Seeking information on long-term outcomes with Dr. Kaufman

Sing

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Thanks for this information, @Learner1 I am not familiar with Theoharides and also the KIT mutation, but might find out something useful here.

Still, my tryptase, histamine and PGD2 are all entirely normal and I don’t have the usual symptom pattern of MCAS. I don’t need or respond positively to antihistamines, don’t have food sensitivities or POTS, etc. All I’ve got is that high Chromogranin A, which could be pointing off in another direction.

I did start the MCAS meds then quickly stopped due to a combination of no benefit and a harmful response to one of them. But I do have ME/CFS in its very low, slow, limiting and unreactive forms, and Dr. K suspects MCAS could be involved, so I want to stay open and learn a bit more.
 

Sing

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No
Do you take acid reducing medications - that can cause high Chromogranin A?


Did you do the urine test which can be more sensitive I believe
No acid-reducing meds, as I don’t have acid, no salicylates or NSAIDs if they could also skew that finding, but it’s possible there could be some other benign cause, as well as possible there could be a bad one. I’ve got a couple of symptoms now which could point to the latter, and will be having that checked out but I appreciate finding out what I can from other patients, as we often have unusual things going on in our bodies.

Once I nearly had a surgery based on what a finding usually meant for most people and my conventional doctor, but luckily I didn’t because it turned out there was nothing new or different wrong with me—other than this illness—and I later found out that others among us had this particular problem too.

Anyway, I am in an exploratory process.

And as for the more sensitive PGD2 test, I had whatever Dr. K ordered along those lines and all my prostaglandin results were normal.

I have a few minor allergies, nothing I need meds for, and am not the allergic type. However, maybe there is a crocodile under the bed (MCAS). I’ll be finding out—