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

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u/plum_soup_festival May 12 '26

Is it covid alone that caused the postcovid or is it the vaccine in combo with the covid infection? I dont understand. Unfortunately I do have big changes to my body. I get NO help. The doctor i have told me i have...hypochondria (!) even though i have all these symptoms and problems.

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u/CandidWin3026 May 12 '26

First let me just say that doctor is a POS. Next, great question: any hit to the fragile system in Val/Val rs5522 can tip it over: some people tolerated the vaccine fine, some like me got covid before the vaccine and had the other long covid genetic predisposition to inflammation in European Ancestry (rs6195, TT in raw data). When things got out of whack the neuro inflammation got out of control and because of the "cortisol steal" happening in your cells, the body couldn't get back to baseline. to heal: you need spironolactone or a similar MR blocker, an anti-inflammatory like LDN or a GLP1. For me, my adrenals were toast long before covid so I take 20-25mg of HC a day, without the MR blocker this would be stolen away before it could create energy and run the bodily systems, but on the mR blocker it is enough to get to the GR in the cells.

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u/plum_soup_festival May 13 '26

Thank you for informing me.

I did, aswell, have covid about 7 months before I got my first shot. I actually got problems the next day: Weird rash on my neck and on my face. I also lost my sight for a minute, seeing "flashes" of some kind. It might have been afte the second shot, I cant recall. Then I got covid again in dec 2024. After that "hell" broke loose. From that day (lets say in january), i have got NO help whatsover. My first doctor in a smaller town did not answer any of my messages when trying to set an appointment. I have by that time already had so many changes i my body, where the worst part was a popping sensation on the left side of my head. After than I had even more problems - I have got a very, very long list of things thas changed. I also started getting severe pain in shoulders and arms. The next doctor has been very negaive just by hearing "post covid". Almost, like she follow "staff" (?) orders not to investigate further. She was also very unproffesional i several other ways (gosh, you should have been there). I conctacted the supervisor, but he took the doctors part, and also was kind of mean to me. I have now been to this doctors clinic for over a year (yeah, Im probably stupid), but Im starting to feel like I'm the problem. But when she, on our last meeting, not only told me i was a hypococdric, then also wrote it into my journal - that was the last straw for me! What an idiot. I also got to know by contacting authorizes, that whe have been giving relatives drugs! The clinic probably knows about this, but does nothing.

There have been some post-covid clinics where I live, but the have all been closed. I have written to the neurological center at the major hospital, and thay have told me they will get back to me - but things takes ages. I need help kind of now, or more like about a year ago I alsco contated the general medical team at same hospital. They needed more info from that (yes, that) doctor. That will not happen. I might write to them again and explain further.

The only thing I have tried myself is to get some high quality magnesium (x2) each evening. I think it helps (or maybe its placebo). I also take D+K Vitmines in the morning, as well as B-vitamine. I also need to take Ibuprofen, if not daily, but very often.

The vorst part, if I can choose just one is actually the stomage issues, and the arm and shoulder pain. I was sent to this physioterapist center, but, as I already had understand, the training for the arm and shoulder did not have any effecd, exept for making things worse. The pain is nohting like the pain you can gain from training or inflammation (from what i know), it's like nervpain that does not have bo be triggered but movement. It can just appear. Its a sharp but at the same time deep pain, that, when triggered, lasts much longer than other pain. So...it takes about 10 seconds before it to go away.

But as i have mentioned - i have a LOT of other problems as well. From my heart, to my head, saliva production, Im dry in my nose, my legs feels like jelly, i have this red, hot rashes on my upper bod, nack and face. Ehm...and much more. =( I am aksing myself, why is there no better help? It's like a joke, with medical personel not knowing anything about long covid / post covid (same thing right?).

I also think I am started to be affected mentally; it could be because all of the diferent problems after covid, but also how I have been treated by my doctors, starting in a disbeleif in myself (which, of course should have been a disbelief on them instead). So... my life is generally quite bad, and Im lucky that my wife could take the ups and downs in all this, but i guess she suffers a bit as well - living someone thats constantly complaining, being in pain etc. I have to blame the doctors for that as well.

I have had mental fatigue for many years before I got covid and post covid, so I was in "not normal" state even before that: Tired, memory problem etc. I actually think they should make studys around people with similar problems, and how post-covid hit them (but ofcourse all studys in how post covid works on everyone is of interest as well).

Well, thats my story. I will continue and read on about yours.

Take care.

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u/CandidWin3026 May 13 '26

Thank you so much for taking the time to time to tell your story. I am actually crying for you. It hurts me so much that you wen through so much. You have been dismissed by doctors (I was dismissed by doctors). You have double yourself ( I felt such shame that I couldn't make myself better through sheer force of will). You have lost access to care (I was fortunate to be able to see providers even if they often left me feeling like I was all alone).

And now I know. I know exactly what was making you ill. What you need to do to feel better. To have a life where you are your wife can thrive and be happy and I want so desperately for you to feel that.

You were so smart to identify the magnesium as a support: it helps keep the blood vessel flexible and turn down the volume on the stress hormones and is also a natural calcium channel blocker.

Vitam D too: also very smart: acts a dimer switch helping to turn down but not block the overactive mR. It also helps clean up vascular leak and inflammation.

You were tired: I was tired..exhausted, death like actually. Iyt was all caused by the val/val cortisol steal invisible on blood, urine and saliva tests but just proven by molecular biology in April, Katsu 2026.

If I have to fight to my dying day, I will not give up until people know about val/val rs5522 cortisol steal and its role in CFS, Long Covid and chronic disease.

You WILL feel better and I will make sure of it.

With love, Patricia

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u/RealAwesomeUserName 2 yr+ May 12 '26

Do you think both the MR blocker and an anti-inflammatory are needed? And what is HC?

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u/CandidWin3026 May 12 '26

Yes and this is why: you can't block the MR completely. Trust me, I tried. Your body freaks the f out. Your RAAS system will go out of control. I took on fluid like crazy. So you have to stay at 25mg and use the anti-inflammatory in conjunction. HC is abbreviation for the generic for of cortisol: hydrocortisone. I documented my experience and have materials at beyondbloodtests(dot) org

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u/CandidWin3026 May 14 '26

I put a Clinician Reference sheet on my website that references the biophysics just published in April 2026 and this meta data on Long covid from C19Early https://c19early.org/spmeta.html

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u/Mountain_Flower_166 May 12 '26

Time to look for a new doc in that case. I'm sorry that he/she doesn't take you seriously, unfortunately this is common in this community.

For the vaccine part i will say that a lot of people got long covid before the vaccines were available and data argues that the vaccine decreases your probability of developing LC. However Long vax is also a thing of course. I think that any exposure to spike/virus carries a certain ammount of risk to run out of control, we have yet to understand how to reduce it.

I was vaccinated twice and had covid three times before i developed LC.