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I bought that book when it first came out and am embarrassed to say that I never got a chance to read it. I had severe MCAS (where the final trigger was toxic black mold in a former rental) but it is now in remission from IVIG.
I was curious (only if you remember), what did Dr. Afrin say was the connection between connective tissue and MCAS. I have chronic neck pain (from other issues) but never felt it was connected to my MCAS (but am now curious)?!
Don't be embarrassed, there is no need to read up on medical stuff when you are in remission We have so much else to deal with. Congratulations on getting better! That is awesome!!!!
Dr. Afrin says that mast cells are present in connective tissue so MCAS could be correlated with connective tissue problems. I read it when I still had brain fog but I don't remember him saying much else about it. It seems like something that needs more research.
I found a more recent paper on EDS and MCAS that has Afrin as a third author: https://www.ehlers-danlos.com/pdf/2...tics_Part_C-_Seminars_in_Medical_Genetics.pdf
I have been to Phoenix twice (both times were over 20 years ago) but I was curious if you have (or had) POTS b/c Phoenix is so HOT ... Do you tolerate the hot weather okay?
When I was at my worst I had a lot of issues with temperature regulation and what felt like orthostatic intolerance. I suspect that I would have been diagnosed with POTS if I could have found a doctor that was willing to test for it. I tried to self treat by upping my salt and fluid intake which helped a bit. My POTS like symptoms mostly went away with mold avoidance.
I was well adapted to heat before I got sick as I loved going to hotsprings, Japanese style baths, and Korean saunas. I didn't have air conditioning for two (not consecutive) summers in St. Louis and I had successfully increased my heat tolerance by bicycling in the summer heat and humidity. I think that some of that heat training carried over even after I developed ME/CFS and MCAS.
After getting sick I found that using saunas helped me recover from crashes and from MCAS events so I joined a Russian bathhouse in Seattle. It built up my tolerance to heat and cold quite a bit. It also probably stimulated my immune system and my vagus nerve enough to reduce some symptoms.
Now that I'm in Phoenix I find that my body is most comfortable when the ambient temperature is between 80 and 85. The triple digit heat hasn't hit yet this year, but I was here in July last year and managed okay
I agree. I am also now very interested in the connection between neurotoxic reactions to fluoroquinolone antibiotics and all of these connective tissue issues (not specifically just CCI but in general).
Definitely! It seems like there is so much to learn here!