Correct. 19 months of face and neck hives triggered by paxlovid that altered something in my MCAS system. i have never had hives show up like this before. this is specific to the paxlovid trigger. i tried a 2 week dose of prednisone and it did nothing. I've tried all the basic MCAS stuff allergists tell you to try. then out of desperation, i did a 5 week course. that stopped the monthly cycle of recurrent face/neck hives. then after a couple of months with no hives, they came back being triggered by one of my numerous allergies. I refuse to take prednisone again. All that happens is weight gain unless I'm on massive doses. I'm still trying to get the 45lbs off me that Lyrica put on me in two months. What I need are answers, not band-aids. In an ideal world, someone out there is studying why Paxlovid is causing severe allergic reactions in the 1%ers...because they know it's happening because they warn about it on their website, but NO ONE is talking about it. It feels like everyone has been paid off by big pharma and I feel very alone. I need an MCAS expert and can't find one. I need someone who is studying this. I need to be heard and not brushed off. AGAIN. I've just been through another month of hives. I put glitter on my face at a parade and that set it off then after it healed i went out of town and it got triggered again....and i have no idea what triggered it. and i spent my "vacation" not sleeping, crying, and covered in ice packs. This is severely depressing.

I spoke with a dr at UMass who suggested a dermatologist at Emory to test for a more extensive list of allergens than I've been previously tested for to narrow down the trigger, but the Dr can't see anyone until July 2024. So another 9 months of hell. My PCP recommended an MCAS specialist, but they don't take my insurance so I'm trying to file for a waiver with my insurance. But my insurance doesn't have anyone on their roster that has experience with MCAS.

I don't necessarily think an EDS specialist would be able to do anything about this. They will just tell me to go see an allergist or dermatologist or MCAS specialist and then I will have waited a year, paid for travel and expenses and all for an appointment that produces no results. Now if someone said, "hey, i believe you. I know you know your body and have the lived experience of all this and I'm going to help you figure this out." I'd pack my bags right now.

I appreciate the links/articles. I'll look at them. If my response comes across with any kind of emotion, it's not directed at you...I'm exhausted on a level I never thought I'd experience. and that's saying something coming from someone with chronic fatigue syndrome. I appreciate you reaching out.