Cromolyn sodium liquid update; this is good news! Finally after cardiology, pulmonary, ENT, primary (repeatedly) and GI the most effective treatment by a huge long shot is the cromolyn sodium oral solution that was prescribed by a specialist in a clinic for from a specialist in ALLERGY/IMMINOLOGY (this even makes sense, why oh why did it take so long!). At my first appointment I, practically begging, said “you are my last resort, please help me”! In short she ordered a slew of allergy tests (nope I’ve never been concerned about allergies) and some bloodwork but the biggie was the rx for cromolyn sodium. Yes there are some allergies, mostly low grade, and they have little to nothing to do with my issues. Anything I eat has caused the severe reaction, acid reflux that H2 blockers and PPIs didn’t phase (and it took forever to diagnose because it was silent), the head congestion and chest phlegm, cough, chest pain etc etc., we all know these symptoms.

Three weeks of 10ml CS dissolved in water 4x daily on an empty stomach is simply WOW, it’s working!

It was the one guy (physician) who got in here and talked about the CS nasal spray , H1 & H2 blockers he trialed that seemed effective at first but not long term that got me going on this. Long COVID research indicates the mast cell involvement and my two systems, respiratory and gastric did seem to respond somewhat to ‘his’ therapy. But not entirely, not even close.

The immunologist listened and by the end of our first visit said “I think I can help you”. YAY! The feeling of hope … finally! Now getting the stuff was another story. 4 days on , woo hoo - fantastic results, then the availability problem, 4 days off, right back to square 1. Then 4 days on , 4 days off and finally the pharmacy got a better supply so 2 1/2 weeks of regular use and I’m thrilled. I’d say 75-80% cured! This in addition to H1 & H2 blockers, my faves are Benadryl for H1 ( even though she prefers either Claritin or Zyrtec (long acting), and cimetidine - Tagamet for H2. I have learned in the last week that I might even be okay dropping the H2 blocker after simply forgetting it a couple of times. Today I will consciously forget it and see.

So a FU last week with immunologist and an rx refill for 3 months. My Q to her was will this end or will I be dealing with it for life. And of course she could not definitively say. Some patients get over it and some are still relying on CS. Like I’m not the only one she’s treated for this? Amazing right? After all the other specialists treating me like I was either crazy or just not following their directives.

Hope this helps!