4 ms·

Mast cells, histamines, allergies, and sensitivities are autoimmune areas that affect many millions of people, and intertwine with many medical conditions. If

by jph 3y ago

Mast cells, histamines, allergies, and sensitivities are autoimmune areas that affect many millions of people, and intertwine with many medical conditions. If you're seeking information about these, especially real-world ways to help such as diet, fasting, nutrition, neural retraining, complementary and alternative medicine, and the like, here are my notes in progress with a bunch of chatGPT glossary pages. Feedback welcome. https://mastcell.help https://mastcell.help

drc500free 3y ago
Thanks for the resource, how have you found working with chatGPT for this sort of thing? If you have some sort of mast cell disease, did you happen to get the covid vaccine? Any issues?
- jph 3y ago
  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.
  - drc500free 3y ago
    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/ https://edsetc.com/
    - llamaLord 3y ago
      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.
      - drc500free 3y ago
        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!
        llamaLord 3y ago
        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.
  - michaelmrose 3y ago
    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.
    - jph 3y ago
      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).
triyambakam 3y ago
That's really neat, thanks for sharing. What are you using to publish it?
- jph 3y ago
  SvelteKit for the website. Pandoc for the epub book and PDF book. Markdown for the content. Some small homegrown shell scripts as glue. You can actually see for yourself, if you like. The site and the books are free open source. If you're a coder, you may want to start with the Makefile files and /bin/ shell scripts. https://github.com/sixarm/mast-cell-help https://github.com/sixarm/mast-cell-help
rewgs 3y ago
> Mast cells, histamines, allergies, and sensitivities are autoimmune areas They quite literally are not. Autoimmune diseases are, by definition, when the immune system targets the body. Allergies are when your body flags things that are not your body.
- jph 3y ago
  I wrote autoimmune areas, not autoimmune diseases. If you're interested, here's more specifics about these areas, as explained in this recent research paper: Allergic Disease and Autoimmune Effectors Pathways (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2276104/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2276104/) Abstract: Allergy and autoimmunity result from dysregulation of the immune system. Until recently, it was generally accepted that the mechanisms that govern these disease processes are quite disparate; however, new discoveries suggest possible common pathogenetic effector pathways. This review illustrates the concomitant presentation of these conditions and the potential relationship or common mechanism in some cases, by looking at the key elements that regulate the immune response in both allergic and autoimmunite conditions: mast cells, antibodies, T cells, cytokines, and genetic determinants. The parallel appearance of allergic and autoimmune conditions in the some patients may reveal that such aberrations of the immune system have a common pathophysiologic mechanism. Mast cells, which play a key role in allergic reactions, and the wealth of inflammatory mediators they express, make it likely that they have profound effects on many autoimmune processes.

by jph 3y ago

drc500free 3y ago

Thanks for the resource, how have you found working with chatGPT for this sort of thing? If you have some sort of mast cell disease, did you happen to get the covid vaccine? Any issues?

jph 3y ago
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.
- drc500free 3y ago
  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/ https://edsetc.com/
  - llamaLord 3y ago
    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.
    - drc500free 3y ago
      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!
      - llamaLord 3y ago
        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.
- michaelmrose 3y ago
  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.
  - jph 3y ago
    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).

triyambakam 3y ago

That's really neat, thanks for sharing. What are you using to publish it?

jph 3y ago
SvelteKit for the website. Pandoc for the epub book and PDF book. Markdown for the content. Some small homegrown shell scripts as glue. You can actually see for yourself, if you like. The site and the books are free open source. If you're a coder, you may want to start with the Makefile files and /bin/ shell scripts. https://github.com/sixarm/mast-cell-help https://github.com/sixarm/mast-cell-help

rewgs 3y ago

> Mast cells, histamines, allergies, and sensitivities are autoimmune areas They quite literally are not. Autoimmune diseases are, by definition, when the immune system targets the body. Allergies are when your body flags things that are not your body.

jph 3y ago
I wrote autoimmune areas, not autoimmune diseases. If you're interested, here's more specifics about these areas, as explained in this recent research paper: Allergic Disease and Autoimmune Effectors Pathways (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2276104/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2276104/) Abstract: Allergy and autoimmunity result from dysregulation of the immune system. Until recently, it was generally accepted that the mechanisms that govern these disease processes are quite disparate; however, new discoveries suggest possible common pathogenetic effector pathways. This review illustrates the concomitant presentation of these conditions and the potential relationship or common mechanism in some cases, by looking at the key elements that regulate the immune response in both allergic and autoimmunite conditions: mast cells, antibodies, T cells, cytokines, and genetic determinants. The parallel appearance of allergic and autoimmune conditions in the some patients may reveal that such aberrations of the immune system have a common pathophysiologic mechanism. Mast cells, which play a key role in allergic reactions, and the wealth of inflammatory mediators they express, make it likely that they have profound effects on many autoimmune processes.