3 ms·
Thanks for the warning :) I have responded to mast cell stabilizers and H1/H2 blockers, which is one reason I'm pursuing further treatment. I've also read Dr. A
by smj-edison 1y ago
Thanks for the warning :) I have responded to mast cell stabilizers and H1/H2 blockers, which is one reason I'm pursuing further treatment. I've also read Dr. Afrin's 70 page paper on MCAS diagnosis, so I have a pretty good idea of what is and isn't MCAS. And after 6 years of pursuing and failing to find treatment, I've also got fairly good at avoiding quacks...
> There are also a lot of people who believe they have MCAS despite negative labs, non-traditional symptoms and a non-response to medication
Will agree on non-response, but the typical blood test (tryptase) is not accurate in many cases[2]: "For example, in contrast to proliferative mastocytosis which usually drives significantly elevated tryptase levels, relatively non-proliferative MCAS usually presents with normal tryptase levels;"
> When people start claiming they have a long list of hard to diagnose conditions (MCAS, Ehlers-Danlos, CCI, etc)
Yes and no. [1] is a recent review that finds that these things really are quite comorbid with ME/CFS. All of them at once? Probably not, but a couple is common.
[1] https://www.medrxiv.org/content/10.1101/2024.11.27.24317656v1.full https://www.medrxiv.org/content/10.1101/2024.11.27.24317656v...
[2] https://www.mastcellaction.org/assets/_/2021/09/18/b74c0e90-c404-4b44-8df9-4a453006b67a/presentation-diagnosis-and-management.pdf?v=1 https://www.mastcellaction.org/assets/_/2021/09/18/b74c0e90-...