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Any HN folks with undiagnosed diseases?

Article news.ycombinator.com

Any HN folks with undiagnosed diseases?

I've been suffering from a condition since around 2014 perhaps longer, that seemingly started after taking antibiotics (ciprofloxacin, Rocephin, Fosfomycin) where my body just loses tolerance to everything I continually ingest. What that looks like is something like an allergy, but my IgE testing on foods is all normal. For years doctors told me I was having panic attacks when I ate which seriously pissed me off. I started going to higher competence medical institutions and they did some testing during a reaction and low and behold one of the times they tested (for some reason only once...) the levels of PGD2 some allergy chemical were multiple times the upper limit of normal. So they thought maybe I have some kind of allergic disorder. They gave me steroids and antihistamines and it seemed to help. however, it only helped temporarily. Fast forward through me almost dying and being hospitalized with malnutrition repeatedly and spontaneously getting somewhat better years later, and I'm where I'm at now. I collect disability, but I suspect they're going to try to kick me off of it now that I'm doing somewhat better. The thing is, the reactions are totally unpredictable except just the knowledge that it will eventually happen with whatever I'm currently eating. It happens with medications too. So if they say "hey he's not taking his meds" what can I even say to that? I have reacted to numerous medications, including antihistamines and steroids.

Oh I didn't mention the symptoms with foods I react to: Just instant throat tightness/swelling, paleness, extreme bloating, nausea vomiting diarhhea, severe exertional intolerance in the hours following, cardiac arrhythmia, inability to swallow properly if it's bad enough, low blood pressure or high, just lasting for hours if I actually swallow the offending food. If I don't swallow it won't last as long. It's instantaneous as soon as it's in my mouth and I'm chewing on it it'll start. Like an IgE mediated allergy, except I don't swell up like a balloon externally, all internally.

Some specialist says I likely have MCAS but the testing for it is pretty hopeless, and SO MANY doctors flat out dismiss it as even a real thing. Just absolutely insane state of affairs.

But it's like, I just assume this is some bullshit because I've been basically poisoned by our current environment, and my microbiome destroyed by all these antibiotics for that infection in the past, and there's just no name for the condition. Cannon-fodder immune system destruction leading to loss of immune tolerance or something.

I've brought it all up with Claude 5.5 Opus and shit numerous times it's all useless. Just repeats back what I said basically. Tells me to see specialists I've already seen, etc. Nothing new at all. And if I'm not careful with my query, it'll just block me out too.

Anyone else like this? What do you even do in a situation like this?

Discussion 2 comments · 1 points · Madmallard · 45m
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