Mast Cell Activation Syndrome (MCAS)

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Id call back the allergist/immunologist and say Im so sorry My doctor (im
Making thid up but its exactky how is lie). Told me to see two specialists,
thats a great idea.....and what white lies are for!



I find Quercetin does help with this ....so thats at least encouraging.

I live in a small town with a few small town type doctors. Not far away is the vast medical panacea. Presumably.
 

vision blue

What big eyes...
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@Rufous McKinney Re you sure no one is trying to poison you...

If was an old can of progresso, maybe the tomato acid caused leeching of tge netal into the soup? (I cabt eat any canned or commercial soups cause of the amines)

Maybe youre electrolytes are put of whack now after all youve been through . That cant help matters and can produce tachy. Be careful there since as you know that csn be dangerous. It you have a cardia mobile you can pick up arythmias caused by low potassium.
 
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Re you sure no one is trying to poison you...
I gaze into the refrigerator, and there resides the rest of that Progresso soup, and its like ....Ghostbusters..that monster living in the refrigerator? (ZOG?)

I took lots of magnesium baths which maybe induced some tachycardia, and potassium is in high demand.

Working on all that, I"m going to now avoid the hot baths mostly because earlier could not even thermoregulate ...it was just bizarre.

"Am I boiling my head right now?"
 

Johannes

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Vitamin D: very interesting.....

I"m striving to get outside on the lawn chair. There are stairs/ I'm crashed for now.

The chinese herbs I take can help. Ive not taken them much recently, hence I got nailed with a relapse after extreme stress. I have found them far more tolerable, than most Pharma pills.

Sharing that Last night I went into a massive MAST CELL ACTIVATION event- and I started itching really really intensely everywhere just about. This does not normally happen, its abnormal.
Unfortenately, the only herbs I can eat are parsley and chives. And only tiny amount of them. I am also unable to use any medicine and supplements.
 
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Many of my MCAS symptoms disappeared with vitamin D shoots. When my vit D level rise above approximately 100-120nmol/l, most of them are gone. But I try to keep the level closer to 300nmol/l = 120ng/ml.

I am unable to use any oral medicines or supplements because of my chemical sensitivity. I don't know if this is caused by my CFS or my MCAS. If I eat amines, salicylates or glutamate, or artificial flavoring or coloring agents, I get really bad inflammation into my bowel and also fever. My gut becomes leaky with its own symptoms. Sunshine helps my CFS symptoms tremendously. During Summer, I am also able to eat some foods containing salicylates and amines which is not possible in Winter. Vitamin D helps also with my bowel problems.

If I don't get my vitamin D shoots minimum every two weeks, preferably every ten days, I get really bad depression and headache, but only if I use too much my brains or if I do too much physical stuff. I don't know if this is because of my CFS or my MCAS.

Does anyone know how to help with really bad food intolerance with out medication or supplements?

This is EXTREMELY interesting to me as well! I have actually NOT noticed any difference in the winter taking around 5000 IE of D3 daily for months with my symptoms, matter of fact i felt TERRIBLE during the last winters. So if Vitamin D was a factor for MCAS symptoms, this SHOULD have possibly made a difference right? Unless it was not ENOUGH dosage?

I am only recently looking into MCAS myself, but it is apparently not very rare at all, with estimates ranging from 1% to 17% of the general population, which...would be insanely prevalent actually.

Since i haven't gotten to any specialist yet for this either, and they are hard to come by in the first place, i have been trialing the H1 & H2 combo myself now for about a month. And... i have to say, i have had BIG improvements in nearly ALL my symptoms after about 2 weeks. I'd say the biggest improvement came from Famotidine after around 4-5 days of taking it. My GI symptoms got better, my joint pain (strangely enough?) my energy levels rose a LOT, etc. etc. however, the BIG question mark here is whether it can all be attributed to the H1/H2s OR whether the sunlight/heat contributed as well since after about a week of taking the meds i left on vacation to a place where the climate was radically different (it was a LOT hotter and tons of sun) so going by Johannes theory, it COULD well have been the sunlight that made the difference, but probably a combination of the two, i'd wager.... needs to be investigated further no doubt.
 
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I've never been sure if I have MCAS or not. But the more I consider it and my family medical history the more it makes sense really.

At any rate I am currently taking quercitin 3x a day 800mg quercitin and 800mg bromelain. Pure quercitin used to give me terrible chest pain, strangely not experienced any this time. At any rate my allergies, asthma and food intolerances do seem a bit better, but it's only been 5 days so it's a bit too soon to tell. I've bought Histaquel from Amrita Nutrition, feel like I've been robbed by Boris Johnson - cost me a small fortune. Anyway that has various mast cell stabilisers in it, I wonder if this will help.

I'll report back if I am still doing better. On saturday just gone we had 20 degrees C here in the UK and the air was THICK with pollen and my asthma was really bad and I was coughing a lot from it too. Not good!
 

Jyoti

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I've bought Histaquel from Amrita Nutrition, feel like I've been robbed by Boris Johnson - cost me a small fortune. Anyway that has various mast cell stabilisers in it, I wonder if this will help.

I'll report back if I am still doing better.
Please do! I am hoping to hear that this helps and how.

I was surprised a couple of months ago when a serum tryptase test came back slightly elevated. I am not a particularly allergic person, but this marker pointed to further investigation. I had a methylhistamine 24 hour urine mishandled by Labcorp, ultimately yielding no results, so my neurologist/dysautonomia specialist told me to trial H1 and H2 blockers for a couple of weeks. Like @Ethereal55 --to my surprise--I experienced an upleveling of function of about 20%. Very interesting and not at all what I had anticipated.

The doctor told me to stay on them till my next appointment, which is in late June. While I have come to rely on the relief they give me, I am noticing it ebbing, like so many ME/CFS 'wonders,' and I am also wanting to find some herbal iterations of Allegra and Pepcid -- I am not at all keen about staying on these little monsters indefinitely.
 
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Ran into this study earlier today: mast cells affecting the connective tissue:

https://pubmed.ncbi.nlm.nih.gov/35449490/

“Aberrant mast cell activation has been shown to play a role in disruption of connective tissue integrity through activity of its mediators including histamine and tryptase which affects multiple organ systems resulting in mast cell activation disorders”.

Emerging research on connective tissue abnormalities in #LongCovid “the firmness of the muscle is different. The firmness of the muscle has to do with the connective tissue.”

 

godlovesatrier

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This is kicking up a lot on twitter. Getting some quite divided opinions.

Be kinder and others are tweeting about it. Saying this underpins the causality behind all connective tissue diseases and ME/CFS.

And then I watch a video of Chia and he says its entereoviruses and then someone else says it's the brain itself. Suspect they are all correct. Just lots of different patient subsets as usual. Convinced eds I'd another subset, not every single patient has hypermobility, mcas and eds.

I know @Gingergrrl says she got diagnosed with ME originally but was able to treat most of her symptoms with MCAS based treatment and some others because she actually found out she had MCAS and other diseases entirely.

Interesting study tho! I've no doubt mcas plays a role in damage to the body too. If it's a thing for me personally it seems a very occasional issue. I don't get any benefit at all from histamine scavengers or mast cell inhibitors.
 

Gingergrrl

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I know @Gingergrrl says she got diagnosed with ME originally but was able to treat most of her symptoms with MCAS based treatment and some others because she actually found out she had MCAS and other diseases entirely.
@godlovesatrier I apologize that I missed this when you tagged me a few days ago. You are correct that I was originally diagnosed with ME/CFS but it ultimately turned out not to be my diagnosis (but I 100% thought that it was from 2013 through 2016).

My diagnoses ultimately were MCAS, Autoimmune POTS, LEMS & Hashimoto's. My treatments for MCAS were incredibly helpful and along with high dose IVIG stopped all of my allergic reactions and anaphylaxis. Then my doctor added Rituximab to the IVIG and this put my muscle & breathing weakness (from LEMS) into remission and ultimately the POTS into remission.

I wasn't able to read the entire thread right now but please let me know if I missed anything that you asked.
 

godlovesatrier

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No problem, thanks for replying. Just an example I guess of how we can get misdiagnosed.

As for me none of the mcas supps seem to have had any effect at all, on any symptom. But I am glad I have tried a few.

Back in the old days I thought Quercitin was having an effect but I think I just handled stimulants way better back then and any effect on MCAS was mute.

Interesting you had rituximab - @Learner1 had that too.

I've done pretty comprehensive autoimmune tests now and so far (must have tested 8 things) they've all been negative, so that seems unlikely. But definitely very laden on the viral symptoms still.
 
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is high tryptase enough to diagnose mcas? my result is 15 ug/l <0.0-11.4> norm according to lab

except of classic cfs symptoms, for last few months i'm maybe just a bit more itchy all the time (it is not very intense and problematic for me though) but after over-exertion i always have tired but wired sleepless night and i'm super itchy then, apart from that i cant say that i got some kind of hives or any skin changes, i think i'm not reacting badly to certain food that said to induce/contain histamine either, in addition i'm not over-sensitive to incentives(unless i'm crashing) too, a lot of symptoms like fatiuge/ibs/brain-fog are not specific for mcas so its hard to count them, becouse i'm obviously pwME
oh and i forgot about- DAO activity ↓ 9.3 IU/ml <14 - 33> norm range by lab

any thoughts?
 
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is high tryptase enough to diagnose mcas? my result is 15 ug/l <0.0-11.4> norm according to lab

except of classic cfs symptoms, for last few months i'm maybe just a bit more itchy all the time (it is not very intense and problematic for me though) but after over-exertion i always have tired but wired sleepless night and i'm super itchy then, apart from that i cant say that i got some kind of hives or any skin changes, i think i'm not reacting badly to certain food that said to induce/contain histamine either, in addition i'm not over-sensitive to incentives(unless i'm crashing) too, a lot of symptoms like fatiuge/ibs/brain-fog are not specific for mcas so its hard to count them, becouse i'm obviously pwME
oh and i forgot about- DAO activity ↓ 9.3 IU/ml <14 - 33> norm range by lab

any thoughts?
High Tryptase is ONE of the parameters used to indicate SOME form of Mast cell disease of which there are several. There are other tests that can be performed like prostaglandine/specific urine tests but an actual diagnosis will need to be made based on your symptoms and clinical picture in conjunction with test results. Depending on the doctor you go to they might also want to exclude systemic mastocytosis (several forms as well) as well, but those tests are a little more invasive like a bone marrow biopsy for instance.
 

Jyoti

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@zuperhero -- going through a raft of dysautonomia testing, I finally arrived at the last one, the one I was sure would not be an issue for me. But the tryptase came up high (14.5 in my case). As you know 20 ug/l is indicative of Mastocytosis, but under that cut-off it seems like tryptase measurements can mean something in regard to MCAS or not. Most people with MCAS have normal or close to normal tryptase tests, from what I understand.

My dysautonomia doctor immediately put me on a two week trial (and this is pretty standard as a diagnostic I believe) of famotidine (Pepcid) and fexofenadine (Allegra)--two OTC histamine blockers. I had no allergic issues of which I was aware, but after a couple of days on these guys, I felt better. Not all better, of course, but noticeably so. After ten days, I took a break, because I was in some disbelief about whether these meds could be really helping. I did not have anything that made me think or feel--MCAS. But the day off was a revelation--I felt awful for a few days, but improved steadily back on the drugs.

I also had another set of tests routinely done when there is a MCAS red flag, like 24 hour urine prostaglandins and histamine, but the tests are pesky and mine were mishandled and resulted in no new info. My doctor did not seem to feel that those results were nearly as important as my response to the histamine blockers.

I have since found Natural Factors Bioactive Quercetin EMIQ, which in relatively high doses, I can take in place of the famotidine. Like you, I have experimented with low histamine diet and introducing high histamine foods and have noticed absolutely nothing one way or another.

Another diagnosis? Hurrah! Right? In any case....good luck with this.
 
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