I was sent a book of a different approach for MCAS and other illnesses. It is technical and controversial, but fascinating. I have been off all my MCAS and POTS medicine for almost 2 months now. I don't have it completely figured out. But making improvements.
Julie G wrote:FWIW, as I've worked on optimizing my overall health (gut especially), my MCA has radically improved as well. That said, I'm still taking a daily zyrtec and singulair (small potatoes compared to my worst!) and would love to wean off.
What are your continuing MCAS symptoms if you don't take the antihistamines?
Issie wrote:I tried VIP, felt so bad on it. Had more mast cell issues
Julie G wrote:What are your continuing MCAS symptoms if you don't take the antihistamines?
Hi Circ! No, I've never tried mast cell stabilizers and probably should. As you might recall, Rudy Tanzi found that another mast cell stabilzer, sodium cromolyn stabilized abeta "in a dish" and prevented tau tangles. So, your recommendation is a good one, especially given our focus.
Julie G wrote:Is ketotifen the only MCAS med you take? Who prescribes it for you? Has it halted symptoms? FWIW, if I don't take my zyrtec and singulair, I get very traditional allergy and asthma symptoms, running nose, post nasal drip, and chest tightness.
Julie G wrote:Izzie's links have taken me down some interesting rabbit holes. I recall several allergy skin tests where I didn't react to histamine (despite no antihistamines onboard and loads of symptoms) leading me to wonder if my symptoms are modulated by a different mechanism, like cell mediated immunity. I'm also negative for all allergy testing. Bizarre.
Julie G wrote:Izzie's links have taken me down some interesting rabbit holes...
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