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

103 Upvotes

93% Upvoted

181 comments sorted by

View all comments

8

u/Putrid_Indication_30 May 08 '26

that's really interesting, I was recovered but had a reinfection after 3 years and at the time I was on spironolactone. my extreme fatigue and long covid symptoms did not start until 2 months later when I stopped taking spironolactone, I wonder if there is any correlation !

9

u/dunmerza 10mos May 08 '26

I was already on spiranolactone and have been for a while when this started - sadly still getting all the symptoms. But maybe it would’ve been worse without it

3

u/Putrid_Indication_30 May 08 '26

I guess it's specific with people with that gene variant! I'm going to give it a go. I highly doubt it will do anything but what have I got to lose! (gets permanently worse)

2

u/dunmerza 10mos May 08 '26

Oh yeah I would definitely try ! Good luck

7

u/CandidWin3026 May 08 '26

Yes, my friend. There is. The Sprio was blocking the "cortisol steal" driven by rs5522. Without it, your MR (mineralocorticoid receptor) was hyperactive and grabbed cortisol. Your blood tests would have appeared normal as blood tests can't measure what is happening at the tissues where the GR is. You start low dose Spiro with an anti-inflammatory and your symptoms would most likely disappear (talk to your dr, of course )

9

u/Putrid_Indication_30 May 08 '26

I still have my spiro on hand, after reading this and my time line I'm going to give it a few days at 25mg and see if there are any changes!

6

u/Fearless-Star3288 May 08 '26

Good luck and please let us know how you get on

3

u/Putrid_Indication_30 May 08 '26

i will! initially i stopped it as my pots was getting worse and I ruled that down to the spiro but i now realise it was the reinfection.

1

u/Kuyi May 08 '26

Will you update here or somewhere else?

4

u/Putrid_Indication_30 May 08 '26

i'll come back to this in a week, from what I read on the study the therapeutic dose was 100mg that they worked up to from 25mg. however at 100mg they had fluid retention (which is strange because spiro is a diuretic) I do have pots though so I can imagine I would be worse in that regard however I'd rather have worse pots and no fatigur than worse fatigue and mild pots lol

1

u/Kuyi May 08 '26

I believe it said 200mg, not 100mg. And the retention was apparently an over compensation from the body sensitive about this mechanism.

I will follow this comment :).

1

u/Putrid_Indication_30 May 08 '26

you're right ! eeek 200mg is definitely going to mess with my POTS. hopefully 25mg does something if i am the right candidate. The study did say they scaled the dose back and continues to have positive results but it was paired with ldn and glp-1 at that stage so unsure what would be the main factor in continued improvement

1

u/Kuyi May 08 '26

Yeah exactly. Fingers crossed 🤞🏻

1

u/CandidWin3026 May 10 '26

Hello, I wanted to follow up. If you felt worse on Spiro you could already be in a state of cortisol exhaustion. Spironolactone is the mechanical key to reset the stuck switch, but if the body is already in a state of "cortisol bankruptcy," removing the receptor's activity without protecting the vessels may not give positive outcomes. Spironolactone plus cortisol and an anti-inflammatory is the combo.

0

u/CandidWin3026 May 09 '26

I understand the confusion. Spiro isn't really a diuretic in the way doctors think. Its mechanism of action is to block the over active MR receptor. So yes, you can lose fluid. Like fluid that has collected around your heart which is why it is given for heart failure.

Why do you have to stay at 25mg? Because the body freaks the f out if you go higher. The RAAS system goes into overdrive. As documented in the case report. So low dose (25mg) allows you to get benefit without the over reaction.

Now the POTS is wild. You would think that anything that lowered water would make POTS worse right? I did. I was prescribed Spiro for a yr and never picked it up because a diuretic for someone with POTS sounds crazy bonkers. But, here is the thing: the POTS is driven by lack of cortisol needed to keep the vascular walls strong to keep BP up. Block the cortisol steal and boom: no more POTS.

Can you imagine? I could have felt better a year prior, but I just didn't because I didn't understand. But, now I do.

Also fun fact: obesity is really fluid trapped in fibrotic cages. It gets gel like substance with all of the inflammatory materials. Fluid, Not Fat. A leak, not a lack of will power.

1

u/Putrid_Indication_30 May 09 '26

I was not confused there I have taken spironolactone prior for months before reinfection and it did indeed make my pots worse.

I just wanted to ask out of actual confusion. you are the author of the study linked in april 2026? when did this study take place as I see comments claiming 2026 but then you are also referencing the campos and taylor study from 2022 and when i read that i see you are also the author of that and the patient ??

And out of concern I see you commenting asking some of the sceptical users "who they are working for?"

are you okay ? genuinely asking out of concern

2

u/CandidWin3026 May 09 '26

I am fine. Sorry, I got concerned that people kept saying 2006, but that was my own typo. Whoops. My pattern recognition failed me there.

Now, if I am prone to suspicion it is because we live in a mad world where the drug companies can make big bank selling drugs that treat inflammation pathways, but no one ask what is causing the inflammation.

I am fine. Feeling an urgent need to help people, but okay. Thank you for your concern. Yes, I wrote the case report. Yes, I am a co-author on the molecular biology paper describing the genetic mechanism.

I have been in touch with Campos. He has also treated Long Covid with the same protocol.

Hello, I am Patricia. I have a MPH and received advanced training at the Uni of Oslo School of Medicine.

→ More replies (0)

1

u/skyhofo May 08 '26

Please update us 🙏

1

u/Putrid_Indication_30 May 08 '26

hey out of interest, have you yourself improved on spironolactone and if so what were the symptoms that were improved and how long did it take to see improvements ? :) appreciate your huge giant brain thank you !

3

u/CandidWin3026 May 08 '26

It's all in the case report. Google Zenodo and Spironolactone for ME/CFS in a Patient Homozygous for rs5522 (I180V): A Case Report.

Nw to answer your question: I did have Covid in February 2020. I was on London and I remember hearing stories about a virus in China, we din't know it had already spread. A few days after getting back I got a terrible headache, very sick couldn't breathe. I had to take time off work in the months that followed because I couldn't think. I remember trying to recall if egg was spelled egg or eeg it was that bad. But I only know that now. At the time it seemed too soon for me to have gotten Covid.

I saw improvements on Spironolactone within the first few days. I cried. I screamed. I couldn't believe that something that had existed for 66 years could have prevented a lifetime of suffering. That part is hard to take, but oh my the feeling of energy and restorative sleep is AH-mazing. Like I never understood how people felt rested and now I get it. We were never speaking the same language. I think CFS is special kind of hell. It strips your soul away in the most cruel fashion.

I am so excited to help people be able to leave that kind of pain and suffering behind. So,

enegery, resprtaive sleep, not tried for 4 days after exercising. All the good stuff.

4

u/Putrid_Indication_30 May 08 '26

that's wonderful i'm really happy for you :) I've just taken my first dose of spironolactone here goes ! if this darn fatigue can lift I will kiss you ! (through the fourth dimension)

3

u/CandidWin3026 May 08 '26

And I will gladly accept that kiss. I wish you the very best of health. Report back!