@dido2 I'm so sorry.. 6 years is way too long to be dealing with this.
I'm almost right behind you at 4 years. I have been looking into MCAS from long covid. I had it in 7/22 and 12 23. I have been going downhill since 7/22. I also had 3 shots (including 2 boosters). I started with daily headaches for about 60 days after I cleared the virus. Because I was not a headache person, this was the most profound symptom at first. The brain fog and fatigue seemed to be a by product of the headaches. Then my digestive system started going haywire. Then my body's ability to regulate temperature seemed to vanish. I was living in the desert at the time and had chills all the time. Day and night, always actual chills. The bloating and gas and upset stomach became a constant. Then I started having what seemed like random pelvic and lower back pain. That was debilitating. I saw 10 doctors, no one had an answer. I started working with an RD and after 2 years she said my symptoms were similar to some symptoms associated with MCAS. It was ONLY then I realized when I ate certain things, I got "sick". Things I had been eating my entire life, I could no long tolerate. Cold drinks, carbonated drinks, yeast (bread) mushrooms, avocado, anything at all that was fermented, citrus, zuchini, rice, most carbs, the list goes on. When I started eliminating foods, I started feeling better. The problem became I was LIMITED to eating about a dozen things, and that was both unsustainable and unhealthy. I JUST had an endoscopy and I have stomach ulcers (no one every checked for them before) and I'm about to do a 24 hour urine catch to see if I do in fact have MCAS. Both of these conditions ( MCAS AND ulcers) apparently are associated with long covid. I also started taking claritin which helps significantly with inflammatory responses, now presciption pepsid, and the thing that has helped me feel human again, believe it or not, Wegovy. I gained almost 20 pounds in the past 4 years which has been a part of this cycle of suffering. When I get "sick" I get hungrier. Most people lose weight, I gained it. I was told by my son in law who is a veterinarian, to ask for the claritin, pepsid and a GLP-1. The combination has truly helped me feel like i no longer have an alien in my body.. I feel "normal" 80% of the time, for the first time in 4 years.. I used to never feel "normal" and feel horrible 70-80% of the time. SO while this is not perfect, it's SO much better than it was. I am still seeking answers, but to feel relief even if it's not all day every day, has been nothing short of a miracle. I hope you find relief soon!! You may find this helpful.. https://pmc.ncbi.nlm.nih.gov/articles/PMC10166245/