[AgentMasterRace]

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!)

[elliotbnvl]

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]

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

[BrannonKing]

I know someone with what we thought was MCAS, but it actually ended up being Alpha-gal Syndrome. Knowing that made the whole thing much easier to deal with.

[shock]

Is oral Cromolyn/Ketotifen available OTC or just by prescription? My search only revealed nasal sprays containing cromolyn.

[elliotbnvl]

Thank you. This is good info.

[financltravsty]

Check out Ketotifen

[SkyPuncher]

I found H2 anti-histamines like Pepcid actually made my symptoms worse.

I was in a similar situation where Claude finally helped me make a breakthrough. It seems that my issue is entirely related to histamine levels.

* H1 (like Zyrtec) help block the body’s response to high histamines

* H2 (like Pepcid) actually worsen my symptoms overtime because my body was readjusting baseline

* Quercitin and DAO enzyme help massively.

Also being extremely mindful of histamine levels in food helps keep my baselines low. This can be tricky because histamines collect as food ages (so two batches of something can lead to different responses) and some “low histamine” foods can still trigger your body to dump histamines (so they actually act like high histamine foods).

[Melatonic]

Isn't histamine also related to Narcolepsy and some somnolence related diseases ?

[kieranmaine]

Quercitin + Bromelain has also helped my nasal polyps. The biggest improvement has been my ability to breath at night through my nose which has really improved my sleep.

Copilot recommended these supplements. Due to a lack of studies relating directly to the effect of these supplements on nasal polyps, it inferred they might help based on the known action of the supplements and the theorised cause of polyps, so it could all be nonsense. That said, both those supplements are considered safe at the doses I take and it appears to help, so even if it is a placebo effect I'm happy.

[SkyPuncher]

I was on a similar path, but way less severe. I’ve become intolerant to eggs and chicken (and a bunch of other stuff) for some completely unknown reason. Over the course of the past 5 years, my overall health got progressively worse and worse.

I tried all sorts of different things, but couldn’t nail down a pattern for years. Even worse, some days I could tolerate something and others it would blow me up. It wasn’t until I started telling Claude literally everything I consumed and how I felt that it dialed into histamine response triggering mast cell activation.

I started to realize that a lot of “low histamine” foods either build up histamines as they age (so leftovers kill me) and some “low histamine” foods actually cause the body to naturally liberate histamine (essentially mimicking high histamine foods).

It’s extremely hard to get a diagnosis because the triggers are seemingly random and don’t always correlate with common buckets.

[Gooblebrai]

Can you tell more technical details on how did you approach the research?

[SkyPuncher]

If I can get Claude to thing about the actual science and bio-chemistry, it can reasonably be through things extremely well.

[jujube69]

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

[pgt]

Ooh, thanks for this. I'm going to try quercetin for my histadine sensitivity in red wine, which causes a skin reaction. I thought it was the sulphites, but after trying older wines (which have fewer sulphites), it made it worse. So I've narrowed it down to histadines. The dilemma here is that wines tend to improve with age, but they contain more histadines.

[FuriouslyAdrift]

Loratadine plus famotidine worked for years for me (I have mastocytosis).

Switching to a keto diet helped way more, though. I still get flushes, rashes, etc., but the severity has gone down to the point they are random annoyances that go away as opposed to medical events.

Cromolyn and/or ketotifen are the big guns for mast cell disorders, though.

[ipaddr]

Why did you breakup after everything?

[code_biologist]

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)

[zdc1]

I will point our that most relationships end in separation. Maybe the reason for the breakup was in their story. Maybe they just stopped liking each other. We can't know without OP telling us.

[bozhark]

Some fixer’s lose purpose once partner is “fixed”

[m463]

reminds me of the fixer in pulp fiction. Life of action, then off with a wink and a nod.

If not, maybe op can reframe and grab life by the horns.

[SuperNinKenDo]

I'm pretty sure someone will accuse me of reading my own trauma into this, but AgentMasterRace mentions also being chronically ill. No mention of timing between Ex significantly imroving and deciding that they had "better options", but the sad reality of life is that many people you love, including friends, will never care for you the way you might care for them, and once they have "better options" will cast you aside, even if you're the reason they have those options in the first place.

Human relationships are brutal sometimes. I still choose to treat others the way I would want to be treated, and some people _actually_ reciprocate, and you eventually learn who is who in your life, but this requires that you be open to the fact the majority won't, and that you will sometimes feel betrayed and used. You just have to accept that it's your decision to make, and decide what kind of person you want to be.

Other commenters are also probably right to one extent or another, the dynamic of the relationship probably changed pretty dramatically and that can create problems regardless.

Anyway, poor old AgentMasterRace probably feels like a depressing episode has turned into something they'd rather it didn't. Sorry for pontificating over your traumatic(?) event with allusions to my own. If I'm reading the meaning of their username correctly though, I feel less bad about it, lol.

[palinnilap]

Wise tender, and traumatically true words.

[keithnz]

These kinds of things can be quite life changing, people can come out the other side quite different people.

[sfink]

Probably because life is not a fairy tale? I'll be heavily projecting here, but:

Health issues can be immensely stressful, and what is required to provide the best logistical and diagnostic support is very different from what is required to be a supportive partner and emotional caregiver. Doctors often fall into the trap of treating the disease and ignoring the patient, but at least that aligns with their job description. It is quite easy to do the same as a partner, and that is NOT the job. For certain personalities, it can often be a massive relief to disappear into searching the web and poring over medical research studies -- the key word there is "disappear". Plus, if someone is suffering physically, you can't really require them to have (what you think is) the "appropriate" amount of gratitude for what you're doing for them. (And physical suffering is always going to lead to mental suffering unless they're a 1000-year old enlightened monk.) You can be quite proud of your savior cred, and your partner can very reasonably tell you to shove that pride up your ass.

It's not about whether you're good enough or not. We all start with woefully naive views of how robust our relationships are. We get together as certain people at a certain time. Living together deepens and widens the basis for the relationship, and we'll all fool ourselves into thinking that nothing can break that apart. But fast forward a decade or two, and upend one or the other of your lives with a health challenge or some major life event, and you'll soon discover that you're in new ground and have to learn a bunch of brand new skills that you never needed before. And there's no particular reason why this person X who you bonded with years ago in environment Y is going to be easier to learn with than some random person off the street now that you're in environment not-Y with a different person X2 who evolved from person X -- just as you've evolved (or devolved) into Me2 from the Me you were. Especially not with the added challenge of a long history together of frictions and irritations that never mattered enough to tip things over the edge but do now in the new environment.

For the record, I'm still married to my X2 in my very-not-Y situation. For now. But I've seen enough that I would never look down on or even be surprised by the dissolution of even the strongest-seeming relationships when a novel challenge comes around.

Back to fairy tales -- Prince Charming's main claim to marriagability was his willingness to make out with a hot living corpse. Are you so sure your own claim is that much superior?

[knollimar]

>"And there's no particular reason why this person X who you bonded with years ago in environment Y is going to be easier to learn with than some random person off the street now that you're in environment not-Y with a different person X2 who evolved from person X -- just as you've evolved (or devolved) into Me2 from the Me you were."

This is overly strong. X2 is likely similar to X and Me2 is similar to Me. X2 is certainly more likely to get along well with Me2 than a random, but far from guaranteed (which proves your point, but I wanted to rein in the pessimism)

[sfink]

Yes, that's fair, and you are right. I guess I was using hyperbole to contrast with the naive and common "I'm great at basketball so obviously I'll be really good at baseball" mentality. The skills are not unrelated, but success in one area does not guarantee success in another.

[alfiedotwtf]

> Doctors often fall into the trap of treating the disease and ignoring the patient

My brother last year went to the doctor with an ear ache. The doctor prescribed him some liquids and pills. Only after he left he realised the doctor never even looked into his ear!

[bossyTeacher]

> Sadly, without me though!

Sad to hear that. You sound like a keeper. Anyway, are you free this weekend? ;)

[netsharc]

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]

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

[Cthulhu_]

EDS and co are notorious for that; the symbol for various EDS organizations is a zebra, because doctors get patients with joint problems and think "arthritis, but they're a bit young, weird, oh well off to the rheumatologist" and before you know it you've seen various professionals and no diagnosis.

There's also HSD, which has a lot of overlap and may yet be a subtype of EDS, but the genetic marker hasn't been found yet. And when you get a patient with the full associated combo of symptoms [0], each of which only reveal themselves or become problematic over a long span of time (e.g. eye problems at young age, period problems / endometriosis as teenager/adult, neurodiverse conditions only diagnosed in 30's, severe joint problems and fatigue in late 30's, etc), few people will actually link them together as possibly having the same single cause.

But thanks to the internet, people with symptom X will find other people with symptom X and before you know it you have a group of people that are like "Hey, we all have symptom X, Y, Z, A, B and C, what gives?".

[0] https://en.wikipedia.org/wiki/Hypermobility_spectrum_disorde...

[da_chicken]

The last I knew, EDS and HSD are mutually exclusive. HSD is typically diagnosed because you have hypermobile joints, fatigue, brain fog, POTS, and other symptoms, but you lack the very specific genetic markers that hypermobile EDS requires.

The real problem is twofold. One is that EDS had historically been a diagnosis of exclusion, and a lot of the diagnostic tests were difficult. The second is that the disorders overwhelmingly affect women, and women tend to get ignored about chronic pain and fatigue.

[DANmode]

It’s interesting the (consistent) list of conditions that one struggles to get an AMA doctor diagnosis for.

[appplication]

It’s because for whatever reason a large number of doctors do not fundamentally believe some of these conditions exist (especially with syndromes with no clearly understood underlying cause).

I could not tell you the number of doctors who have rolled eyes at the mention of ehlers danlos and hypermobility disorders.

[nextos]

What treatment did your wife receive? Did she improve?

Did doctors confirm Ehlers Danlos with genome sequencing?

[randerson]

90% of EDS sufferers have the Hypermobile variant, for which there is no genetic test. At least thats what I was told by an EDS specialist a few years ago.

[nextos]

Yes. However, there are some polygenic risk scores for EDS. While not approved for clinical practice, they can serve as guidance.

[arkh]

Anecdotally: an endocrinologist diagnosed me a macroprolactinoma just by seeing me entering for a consult about another problem.

"You're here for a prolactinoma?" "Nope" "I'd like to get this blood work done tho"

One week later the blood work confirmed her hunch.

Experience can get some crazy results.

[tru3_power]

Did they state what made them have that hunch?

[Obscurity4340]

What were her symptoms?

[keithnz]

one of the really good things about these kinds of write ups and accounts of experiences and false leads is that I hope it feeds the LLMs with more context. For both me and my partner we've had problems with misdiagnosis that took a while to correct. My partner also suffered with auditory psychosis, and that was a super difficult (and bizarre) time. A little while ago I just started recording everything so I can use AI tools to validate medical advice and track symptoms, already it's caught things (semi minor things) that I've been able to address with my doctor. I would never suggest relying on AI tools, but certainly useful as a second opinion type thing as well as exploring possibilities.

[gaudystead]

I recently discovered openevidence.com, and it's apparently what many doctors have started using for diagnosing patients (with or without their consent). It could be worth looking into for trying to find an explanation of symptoms that might not have a clear diagnosis. It may also just be the new WebMD once it gains more popularity (or even already), but may be another tool in your arsenal all the same.

[aforwardslash]

Openevidence.com is not available in the EU, so I would actually be weary of recommending it. You either be exposing personal info, or getting a result you cannot guarantee it hasnt been tainted/canned to sell you something.