My ex has mast cell activation syndrome. We would have to call for an ambulance 3-4 times a month because some days eating a grape could cause her to go into anaphylactic shock. She was allergic to whatever her body felt like at any given time.

She was misdiagnosed/undiagnosed for 18 years. I was baffled by this, and I myself have spent numerous hours down the rabbit hole of nootropics, and had a DNA test and was researching myself and how things work and how supplements affect your body and such for sometimes 12 hours a day. (Chronically unemployed, chronically ill.)

We got her a DNA test and I went to work researching everything and comparing the possibilities to her symptoms, we tried countless different supplements that could help... And eventually one did, it wasn't a cure but it was a relief she had never felt before. That was Quercetin, which is a mast cell stabilizer. It took about 2 years of research and trial and error to find some relief. We took our findings to the doctor and finally got a referral to an internal medicinist who promptly after hearing the symptoms and what has helped diagnosed her and she was out on a proper mast cell stabilizer. She went from being in bed 20 hours a day to being able to fully enjoy life. (Sadly, without me though!)

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elliotbnvl an hour ago | parent | next [-]

I just learned I have this as well (not as severe). Quercitin helped me. I am taking I think 1600mg (with bromelain) per day. How much was she taking, and what is the mast cell stabilizer that helped, if you don't mind my asking?

I've been dealing with my symptoms for 17 years this year and Quercitin + Zyrtec + Pepcid is the first thing that's made a dent in it. I started a few weeks ago and it's been amazing but I'm not experiencing full relief yet.

This was the combo Claude recommended I start with for a trial, one message after I told it my symptoms. No doctor has ever been able to help.

	▲	forrestpitz 11 minutes ago \| parent [-]
		Not op but my wife has MCAS. The things that have helped the most are: Oral Cromolyn (helped sooo much with gi issues), and more recently she's started Ketotifen which is a systemic mast cell stabilizer that's seemed promising but is fairly new. She also tried Montelukast which was well tolerated but didn't make a ton of difference for her personally (but I know it helps a lot of people). Supplement wise DAO was the most useful for food truggers

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jujube69 2 hours ago | parent | prev | next [-]

What's was her daily Quercetin dose? Trying to compare notes.

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an hour ago | parent | prev | next [-]

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an hour ago | parent | prev | next [-]

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netsharc an hour ago | parent | prev | next [-]

At the risk of sounding like a cryptobro ("What about using a blockchain?"), did you ever try testing LLMs to see if they'd be able to diagnose it correctly? (I'm guessing you did the research before LLMs)

	▲	forrestpitz 3 minutes ago \| parent [-]
		Not OP but anecdotally: ChatGPT diagnosed my wife's MCAS, POTS/Dysautonomia and Ehlers Danlos Syndrome before any doctor did (not for lack of trying on the doctor front). Once we had that direction we found the right providers and it's made a world of difference

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ipaddr an hour ago | parent | prev [-]

Why did you breakup after everything?

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code_biologist an hour ago | parent [-]

The problem with being a "fixer" in relationships is if the other party is fixed, what they want changes, and often what they saw in the relationship isn't as relevant anymore. (to speculate from afar)

	▲	bozhark an hour ago \| parent [-]
		Some fixer’s lose purpose once partner is “fixed”