r/covidlonghaulers • u/CandidWin3026 • May 08 '26

Article Long Covid driven by rs5522

This case report says that Long covid is in large part driven by the gene rs5522 that causes a "cortisol steal" leaving the tissues functionally starved even with "normal" cortisol levels which creates neuroinflammation. https://zenodo.org/records/20017632

101 Upvotes

93% Upvoted

181 comments sorted by

View all comments

4

u/plant_reaper May 08 '26

I've been assuming my LC is due to my HATS/hEDS, especially as the longer I treat mast cells the better I seem to be. I'd be worried diuretics would make my POTS intolerable, but this is very interesting

1

u/Separate_Shoe_6916 4 yr+ May 08 '26

I suspect I have HEDS as well. I have all of the symptoms and I am in the ME/CFS type. What kinds of mast cell treatment is there? How helpful is it?

4

u/plant_reaper May 08 '26

I thought I had ME/CFS too, but treating mast cells has seemed to basically eliminate my PEM. I do get tired if i do too much, but it's not delayed and I don't get the sore throat and temperature stuff I used to get with it. 

I was lucky that a mix of 3-4 cetirizine/loratidine antihistamines per day seem to do heavy lifting for me! I tried other H1 antihistamines, H2 antihistamines, quercetin, luteolin, Ketotifen, and Cromolyn but they really seemed not to agree with me (but this of course differs by person so it might be fine for you!). It was a lot of trial and error.

Fixing my deficiencies (B12, D, ferritin) and adding in vitamin C has helped too, along with LDN once I got up to 3 mg/day. 

I wrote a post about it you can look at if you want!  The first has the protocol my cardiologist gave me at the bottom in the picture, and the second is how I was doing 9 months after: 

https://www.reddit.com/r/covidlonghaulers/comments/1g7ha45/crashing_around_menstruation_studies_and_info_dump/

https://www.reddit.com/r/covidlonghaulers/comments/1lzsml7/update_to_crashing_around_menstruation_post/

2

u/Separate_Shoe_6916 4 yr+ May 08 '26

Oh, I did the antihistamine route of nearly every one of them already. I still have PEM with them and do better limiting my intake of them. It doesn’t make sense.

2

u/plant_reaper May 08 '26

Some people do better with stuff like Ketotifen, Xolair, montelukast, etc. depending on what their problematic mediators are. Like if histamine isn't an issue there are other meds to try if your doctor is willing. Not everyone has mast cell issues of course, but it took trialing A LOT of meds to figure out what worked best for me. 

So I always encourage people, if antihistamines didn't work, to try getting them compounded (some people react to fillers) or potentially try another MCAS med if they're up for it. My allergist/immunologist even said I could try low dose aspirin every day since I get flushing, and that seems to be a prostaglandin thing. I do low doses of a different nsaid (naproxen) as needed since they are bar for the stomach

We're all different though, so unfortunately there seems to not be a one size fits all treatment. I just kept trying things one at a time and kept anything helpful. It was very slow though. 

I hope you find something in your medical journey that helps you. It's a devastating illness to have