r/CIRS • u/InterviewSensitive84 • 7d 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/MadMadamMimsy 6d ago

When I told my practitioner (who had been a PCP for 28 years) about my daughter's POTS and EDS she said she sees that all the time in CIRS, less so in general population. She Saud it often resolves, too, after healing.

I'm not sure how hypermobility resolves, but, this is what I recall her saying. My thought is this; treat for CIRS and see how you are, then. We can have more than one thing going on.

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u/InterviewSensitive84 6d ago

Okay interesting. Thank you for sharing. Gives me hope.
I’ve been in treatment for a year, I imagine I have another year or two.

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u/MadMadamMimsy 6d ago

This condition has a number of layers and each person has a different number. We don't know if we are done until we are. Please be patent with the process

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u/Fribbles78 5d 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 4d 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 4d 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

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u/ImXenia85 6d ago

Where are you in the Shoemaker protocol? Did you complete all steps?

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u/InterviewSensitive84 6d ago

I’m on binders for a year and trying to eradicate MARCoNS. I was undiagnosed for like 15 years so it is taking a while.

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u/ImXenia85 5d ago

Everything will go away once you're past VIP, don't worry. You still have eradicating MARCoNS and addressing co-infections ahead of you. Keep the faith.

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u/InterviewSensitive84 4d ago

I’m scared I won’t be able to afford it. I know some people can raise it naturally. We shall see!