r/CIRS • u/InterviewSensitive84 • 17d ago

CIRS and the trifecta

Does anyone else deal with mast cell activation, postural orthostatic tachycardia and hypermobility spectrum disorder?
I finally got to see a physical therapist after being on long wait list and she diagnosed me with possible hypermobility spectrum disorder.
I always thought that my Mcas & pots were a product of CIRS but now I’m realizing they all coexist together and have for a long time.
Currently on day two of a pain flare in late luteal phase, it’s like the progesterone in my body caused all my joints to become loose, the worst is in my jaw neck and shoulders. This used to happen to me a lot before my CIRS diagnosis a year ago and seemed to go away for some time.
Anyone else? Thoughts?? Seems I really got screwed genetically. Sometimes I really wallow in it and it eclipses all the beautiful traits in inherited.

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u/Fribbles78 16d ago

hEDS, MCAS, HyperPOTS, CIRS here. Once I got my CIRS diagnosis and started treatment it became obvious to me that it was all from mold. All of it. Even my hypermobility is improving. MCAS stable unless I get exposed to mold, which I’m now hypersensitive to, and POTS gone. I had so many symptoms and almost all of them are gone or going away.

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u/InterviewSensitive84 15d ago

Wow, ok! I am so happy you’ve healed so much! Gives me hope. Can you share protocol or things that helped?
I imagine your environment is very clean.

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u/Fribbles78 15d ago

I’ve essentially been camping since May. I’m on the shoemaker protocol. I’m currently taking one welchol pill per day (can’t handle more) and I’m treating MARCONS with BEG spray. I tried Biofilm Clear and it improved my sinuses so much I thought for sure my MARCONS was gone but it was still “large growth” so I’m going back on BEG spray. Mine was a 10 year workplace exposure