u/CassidyMoth

Full disclosure: I hate AI. I won't get into why because that's not the soapbox I'm trying to get on right now, but my point is, I'm not making this post to sing the praises of AI.

My occupational therapist recommended a site called RTHM after I complained that my doctors were being wishy-washy about my MCAS, with my IM doctor dragging his heels and my allergist trying to convince me it was just environmental allergies. At this point I'm desperate because I'm slowly getting worse, so I gave in and signed up for the site. It gave me a PDF of all its hypotheses and potential treatments, basically a roadmap for my medical journey. I sent it to my care team.

Tell me how I made a post 6 days ago about my allergist not prescribing anything but 2 loratidine, 1 pepcid, and flonase. Now all of a sudden both she and my IM doctor want me on LDN, cromolyn, and ketotifen, ASAP. Why don't doctors just listen to their patients? Why did it take me sending an AI-written PDF for them to sit up and pay attention? Smh my head!!!

So my allergist ran the poke tests and I'm basically moderately to severely allergic to everything except cows and horses. She smiled and told me it was a good thing because I can "just do immunotherapy for 3-5 years and it will all get better". I asked her why I had occasional (not reliable) anaphylactic reactions to things that don't show up positive on allergy tests--mustard, penicillin, flax seed, fragrances--and she was basically like "Idk that's weird but maybe these things were contaminated with mold, which you are very allergic to".

She also doesn't want me taking Benadryl at all because it passes through the blood-brain barrier and there's research that associates it with causing dementia, though it's not a direct cause yet, so to speak. She keeps telling me that second generation h1s should be plenty for me because I "only" have allergies, but whenever I have a flareup--especially one that affects me cognitively and makes me feel foggy, woozy, lightheaded, etc--only Benadryl will relieve my symptoms.

At this point I'm thinking it's MCAS causing acute inflammation in my brain and only Benadryl crosses the barrier and hits it right where I need it. She's a really good allergist, but I think she's let my "normal" allergies lull her into thinking I couldn't possibly have MCAS because this is the simplest explanation and therefore all the explanation I need.

I don't know what to do about this, tbh. It's very frustrating.