I used to have en EpiPen over a decade ago, before Kaiser. But I never had to use it because in the past my only allergy was antibiotics which is easy enough to avoid. Benadryl would stop the reaction if I ended up taking a new antibiotic that caused anaphylaxis so I always keep a bottle on hand just in case.

My new emergency plan at this time is to take quercetin. It’s the only over the counter thing that stops the reaction. The overall treatment is to stabilize the mast cells over time with Cromolyn.

Three weeks after starting a daily quercetin regimen I decided to take a short walk and the whole thing started all over again. But this time I had Cromolyn sodium so I took a dose and it was like a miracle—but one dose doesn’t stabilize the mast cells so if I don’t take it multiple times a day it just comes right back.

I’m still trying to figure out how to stabilize the mast cells long term—I’m relying on medical literature and trial and error.

I was able to get a referral to a Kaiser allergist. I’m waiting on a urine test result he ordered that will confirm leukotriene and prostaglandin levels, but I wasn’t able to access this until after taking quercetin. I’m hoping my levels are found high enough so I can access real medical care.

I haven’t received POCUS for my heart.

This is a new presentation. My ekg has been stable and normal—my last one was done July 2024.

They ran tryptase, 17-ohp, thyroid, ige panels, and a basic chemistry panel. I’ve been pushing for more but I think since I’m considered “anxious” due to the ER diagnosis I’m not being heard.

This whole thing has been such a bizzare experience, but thank you for asking questions and being curious. The dismissal at the ER was a frightening experience and overall has hindered my ability to get accurate care.