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Comment by jph | Hacker News Reader

ChatGPT is great. It's training me in all these topics, as fast as I can search and learn. It's helping me to talk with doctors and experts. It's helping me share what I'm learning with many more people on various patient groups.

Yes I got the covid vaccine and boosters, and also flu, shingles, TDAP, etc. No issues. Are you aware that there's research that overlaps COVID and mast cell issues? For example: famotidine antihistamine activates the vagus nerve inflammatory reflex to attenuate cytokine storms.

For me personally, I don't yet know my root cause. I'm ramping up on medical research papers, and trying a hundred or so kinds of treatments to see what helps.

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ChatGPT makes things up. You should probably use it more as a search engine rather than as a text book and spend more time reading primary sources.

Yes you're exactly right. ChatGPT is good at search ideas, and also good at generating bullet point highlight formatting. Then I go to primary sources such as medical journals (e.g. JAMA), hospital websites (e.g. Mayo Clinic), doctor publications (e.g. Dr. Afrin for MCAS), healthcare organizations (e.g. UK NHS).

Didn't know that about famotidine, that's very interesting. My wife has HaT (she was in the NIH study) and MCAS, and got absolutely wiped out by her reaction to the first vaccine. One of her specialists told her she's seen that happen with a few other HaT patients.

We've been considering everything ranging from hard science to total woo, with what's worked best documented here: https://edsetc.com/

My wife had the same reaction to the Pfizer vaccine. This was... Over two years ago, she still hasn't recovered.

Has had to restrict her diet down to ~5-10 very specific ingredients otherwise she gets extremely bad mast-cell flare-ups.

I'm so sorry to hear that. It took about a year to get back in the saddle. Unfortunately any harm from the vaccine became so political at that time, so it was hard to talk about with people (we couldn't even convince doctors to submit a VAERS report).

She was down to 4 ingredients when we first met (5 if you count salt), but she's up to a fairly standard diet now. Lots of stress reduction, and she worked really hard to test out one ingredient at a time. At this point it's avoiding a blacklist rather than sticking to a whitelist which is such an amazing shift. Things can improve, even with extreme cases!

That's awesome to hear the improvement, gives us hope.

My partner has confounding factors (autism) which is known to make this stuff worse than usual, but it is improving ever so slowly.

Your point around the politicisation of vaccines (and especially ANY kind of critique or question about side effects) is so spot on. We genuinely felt scared to even ask medical professionals out of fear of being labelled as anti-vax and having our overall quality of care drop as a result.

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