MCAS and long covid

Cutiegirl

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DX FIBRO
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Just found a doctor on Twitter who posted a very interesting thread today on MCAS. By golly, if you look at the symptoms they do match up quite nicely to fibromyalgia. Her name is Dr Claire Taylor (@drclairetaylor). There are some attached links to articles that also make some connections to fibromyalgia. I was interested in how they are treating MCAS and wondering if there was anything useful there for us.

It's late and I need to go sleep. Will try to follow up in the next few days if anybody else is interested and wants to compare notes.
 

sunkacola

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I will be interested in what you find out.
 

cookiebaker

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always interested in new options.
 

JayCS

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Just found a doctor on Twitter who posted a very interesting thread today on MCAS. By golly, if you look at the symptoms they do match up quite nicely to fibromyalgia. Her name is Dr Claire Taylor (@drclairetaylor). There are some attached links to articles that also make some connections to fibromyalgia. I was interested in how they are treating MCAS and wondering if there was anything useful there for us.
MCAS is actually my other main condition, triggered by the jabs, but my skin and GI oversensitivities make it very likely I've had it all along.
Many MCAS specialists regard fibromyalgia as a possible part, aspect or at least co-morbidity of MCAS.
Matching up our symptoms is of course possible with a great many other conditions - we have to look at them very closely.
My IBS could be FM or MCAS or both, depending on which symptom, my increased local pains are definitely FM, my ache also fits better to FM, my quick exhaustibility since fibro has greatly increased since the jab/MCAS-flare, but also changed, etc.
What I could see from the jab/MCAS-flares was mainly increased burning everywhere - skin, tongue/mouth, sinuses, gut, sometimes days.
Interpreting that as a mast cell overreaction leading to unnecessary increase of many immune system mediators, mainly histamine, which hasn't much to do with FM, but also cytokines which we do know from FM.
Decreasing my histamine bucket is crucial, using a low histamine diet (e.g. SIGHI list) & the enzyme DAO for histamine in food,
an antihistamine, increasing GABA for more serotonin for less histamine, and cold showers etc. also improve histamine and cytokines.
For supps Bruce Hoffman's "A-" and "B-Team" support all this and many of these are also generally interesting, like quercetin, resveratrol, vitamin C, luteolin, ginkgo and honokiol/magnolia bark, parthenolides/feverfew, but only these last two are supposed to help with pain.
For those who can tolerate them there's a whole laundry list of meds, H1 and H2 antihistamines, mast cell stabilizers, with quite a few side effects, completely different ones to the FM meds, apart from on a side track NSAIDs, L D N and C B D.
Exercise plays hardly any role. Diet is pretty different, also watching for intolerances, but in MCAS more defined allergens like histamine and histamine liberators, salicylates, oxalates... - but again it's pretty different to histamine intolerance or defined allergies.

So I think MCAS is good to know about and think about if there are unusual immune system sensitivities and skin/gI burning going on.
So the symptoms are different with overlap, the triggers are more unusual than in FM, e.g. certain smells, or med excipients and can lead to anaphylaxis (not for me though), treatments are pretty different and the prognosis can be better for MCAS under control than FM under control, e.g. pacing is much more necessary in FM than in MCAS.
 
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