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    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.

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Mast Cell Activation Syndrome (MCAS)

Messages
31
hi, thanks for responding guys, as you mentioned MCAS diagnostic is quite hard and i posted a question here not because of my laziness, though i am ;), but because even that i put a good few hours into research, still there are no straighforward diagnostic route, so depending on the article/opinion you can get contradicted answers.

i probably need to visit an allergologist but since mcas is so hard to diagnose + it's rare, i'm a bit hesitant about doing it, because i would need to pay for it from my own pocket and i'm pretty sure, that it will be another usless and frustrating visit and at most i will get information, that i can google myslef in 3 minutes, but who knows ;)

@Jyoti your idea with just testing anti-histamine otc drugs seems reasonable- it's safe, easy, cheap and gives a quick answer, even if those drugs dont address core problem, they may improve the quality of life. The only thing that bothers me a little bit is that if anti-histamine_diet/avoiding_of_mcas_triggers are not giving any substantial difference, is it possible that some positive results from anti-histamine drugs, in your case, are due to not 'pure anti-histamine effect' of them but some other things- f.e. anti-inflamatory effect or whatever other reason- just by opening wikipedia page on h1/h2 receptor antagonist you get multiple ways that they affect body- we don't know if you don't benefit from any of those.
I'm thinking that trying anti-histamine first and after a break from them, trying mast cell stabilizers like cromolyn sodium, high-dose wit-c or quercitin that you mentioned, might be even better, because getting positive reaction from 1st group and than getting positive reaction from 2nd group is far more probable indication of mcas, than just trying drugs from only of those group. Getting positive result just from one group and none from other may idicate that results come from some random effect of those drugs, rather than addressing mcas.

According to my resarch thing that might be worth trying is also trying supplementing copper and see how we react- according to studies, if it is depleted we might have problems with mcas/dao + few probiotics might be also helpfull, Lactobacillus rhamnosus GG seems promising (cheap, safe, ...)
 

kewia

Senior Member
Messages
233
I've tried liposomal quercetin, which relived my chest tension a way better than normal quercetin because of better absorption, which didn't do anything at all anymore.
But I got heavy overstimulated and inflammation evolved days after, turning the effect into opposite direction.

I observed the effect of early improvement with worsening in the end with most herbs, especially with the bitter ones, so there must be another issue going on.
 

linusbert

Senior Member
Messages
1,155
I observed the effect of early improvement with worsening in the end with most herbs, especially with the bitter ones, so there must be another issue going on.

i got the same, i do not tolerate herbs at all. its a increasing effect, the long and more i take the worse it gets. making my asthma and allergy worse.

i believe this to be some kind of plant toxin which gets concentrated in plant extracts like the positive things too.
could be histamin(liberators) or salicylate or another unknown compound. but salicylate is for sure extremly high in plant extracts. so if aspirin makes you worse, that could be it. (and probably salicylate is a histamin liberator, adding double trouble)
but i do not know any cure for salicylate except not taking it. its worse than histamin. there we get at list h1-h2 antagonists and DAO.