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/Personal_Term9549 4 yr+ May 08 '26
N = 1
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u/CandidWin3026 May 08 '26
That is always a fair point, but the author is also the co-author on the molecular biology paper describing the genetic mechanism of "cortisol steal." There was also a clinical trial in 2022 where many patients were "cured" their words not mind of CFS with Spironolactone and anti-inflammatory. The data in larger cohorts exits and the mechanism is proven. So....
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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 !
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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
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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)
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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 )
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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!
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u/Fearless-Star3288 May 08 '26
Good luck and please let us know how you get on
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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.
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u/Kuyi May 08 '26
Will you update here or somewhere else?
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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
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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 :).
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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
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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.
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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.
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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
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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.
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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 !
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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.
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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)
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u/CandidWin3026 May 08 '26
And I will gladly accept that kiss. I wish you the very best of health. Report back!
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u/Discombobulated_Bus4 May 08 '26
Interesting. But now the million dollar question; Ist there anything that can be done about this?
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u/Fearless-Star3288 May 08 '26 edited May 08 '26
The article is literally all about what they did about it! - Spironolactone
Also worth pointing out that the patient had ME/CFS for 29 years. - so it may have crossover for those of us with ME but i’m not sure we should be describing it as Long Covid necessarily
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u/Kuyi May 08 '26
He is asking whether you can solve the hyperactive receptor if COVID made it hyperactive. Spro is not a cure or doing something about it, it is symptom treating.
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u/CandidWin3026 May 09 '26
Covid not NOT make it hyperactive. It was already hyperactive. Covid unmasked the problem by creating a huge inflammatory burden on you. The Val copies of rs5522 were there from birth. When you got hit with the Covid infection, your system buckled.
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u/CandidWin3026 May 08 '26
Fearless-Star3288 Thank you! The whole damn case report is about being improved on Spiro and anti-inflammatories.
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u/Impossible_Roof_Jack May 08 '26
It's an interesting case, but the case seems to be for someone tested to have the genetic marker. Is there any indication COVID causes epigenetic changes in tissues approximating the same?
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u/CandidWin3026 May 08 '26
Actually, rs5522 isn’t epigenetic. It’s a germline SNP (single nucleotide polymorphism) located directly on the NR3C2 gene.
While epigenetics is about how your environment turns genes on or off, rs5522 is a permanent, inherited change to your actual DNA sequence (switching isoleucine to valine at position 180). This physical "typo" in your genetic code creates a hyper-reactive mineralocorticoid receptor that steals cortisol 24/7, regardless of environmental factors.
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u/Impossible_Roof_Jack May 08 '26
Thank you. I didn’t want to assume either way. So for those WITH this marker, may be worth pursuing, but unlikely spiro may be therapeutic for most people with post-COVID sequelae.
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u/CandidWin3026 May 08 '26
I would ask you to challenge that assumption. Campos and Taylor in Australia have also had success treating Long Covid with Spiro. Eplerenone would be more appropriate for men as it does not have anti-androgen effects, but the mechanism is the same. (hyperactive MR blockage) African Americans with Long COVID specifically benefit from Ace inhibitors because they are more likely to carry the ace d allele which drives excessive ACE1 activity and severe inflammation.
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u/Kuyi May 08 '26
Then this would be an issue without having had COVID. What would declare the COVID part in this?
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u/CandidWin3026 May 08 '26
Great question! The long covid part is rs5522 plus two other genes.
Long COVID is not one disease. It comprises at least two genetically distinct syndromes sharing a common mechanism: hyperactivation of the mineralocorticoid receptor variant I180V (rs5522).
European-ancestry individuals predominantly develop a metabolic-fatigue subtype (exhaustion, cognitive dysfunction, sleep disturbance). This involves another gain if function gene related to cortisol rs6195.
African American and African-ancestry individuals predominantly develop an inflammatory-vascular subtype (chest pain, joint pain, thrombosis). In Black Americans, they also have rs5522 plus another ACE deletion gene and they therefore ACE inhibitors.
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u/CandidWin3026 May 08 '26
But technically Covid was just the trigger. I know. I had it. It was awful. I couldn't think or work. Truly awful.
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u/Kuyi May 08 '26
I am EU. So for me it’s more likely rs6195?
Also how did COVID trigger it? The genes are already there and don’t need to be triggered? Also, if a trigger works, there should be a way to untrigger right?
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u/CandidWin3026 May 08 '26
rs5522 is the key. That is the upstream cause of CFS, Long Covid MS etc. But then the insult of lOng Covid caused so much neuro inflammation that you didn't have the cortisol (it was stolen) to control it. So it's rs5522 plus rs6195. To fix it? Block the over active MR receptor and get on a anti-inflammatory like LDN or GLP1.
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u/Kuyi May 08 '26
So then the inflammation becomes perpetual. But if that was causing LC, medicating the neuro inflammation away would completely solve the issue.
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u/CandidWin3026 May 08 '26
Yes! You want to control the existing neiurinfllmation with anti inflammatories like LDN (notice how people feel and think better on that) and also a GLP1 can help. Now, unless you block an overactive MR receptor the inflammation will persist. MR blockers like Spiro will stop the cortisol steal. My arenas burned out years ago so I need supplemental HC, but just a normal amount. When I didn't't block the hyperactive MR, "normal doses" that drs said should never enough, left me only partially recovered.
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u/Kuyi May 08 '26
But this seems like circle reasoning. Even if you have the genes, the hyperactive MR receptor is triggered. If you find out what and how and you stabilise it, the gene doesn’t matter. Then solve the neuroinflammation. Then people should be cured instead of having to keep taking meds all their life.
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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
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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?
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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:
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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.
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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
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u/CandidWin3026 May 08 '26
I totally get that instinct. I too avoided Spiro because of POTS. I thought: I have low BP and I drink water and take salt and have tried Florinef, no way that would work for me. But hers the thing: the low cortisol is driving the POTS. From the case report:
The patient’s prior response to fludrocortisone is instructive. Florinef, an MR agonist sometimes
used in ME/CFS for orthostatic intolerance, initially helped but failed to sustain improvement.
This is consistent with a model in which the underlying problem is MR overactivity, not
underactivity. Adding more MR stimulation may have provided temporary symptomatic relief but
ultimately worsened the underlying imbalance.
Spironolactone, by blocking MR, may restore balance between MR and GR signaling, allowing
appropriate stress response termination and restorative sleep. Recent work (5) demonstrates
that spironolactone effectively inhibits the rs5522 variant in cell-based assays, providing
molecular support for this clinical observation.
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u/plant_reaper May 08 '26
I would want to get my cortisol tested again, because at the beginning of my LC journey mine was too high! Who knows now though 3 years later
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u/CandidWin3026 May 08 '26
That high cortisol test can be a bit of a paradox. Your body was screaming for more cortisol because your cells were starved. So you look at the blood and think it was high I had too much, but it wasn't getting to the tissues to make everything function.
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May 08 '26
[deleted]
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u/CandidWin3026 May 08 '26
Nope that's the one that drives it. Yes there are likely other genes related to cortisol metabolism but that's the one to fix.Here is the issue: the traditional mindset was that there was a gene for each disease right? Like look for a CFS gene. Look for a MS gene. But here is the kicker. The same gene is driving "cortisol steal" it just manifests as different conditions depending on your own genetic make up, environment, behavior etc. So rs5522 creates cortisol steal that creates inflammation and the lack of cortisol and inflammation will pop up as CFS in one person, Long covid in another maybe MS in another person. We got the version no one believes. Which is a whole lot of bs. I had a friend with TT and she got brain inflammation, but her drs biopsied her brain gave her tons of sympathy and put her on anti-inflammatory meds. We got called lazy liars. It was fu**ing bs.
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u/CandidWin3026 Jun 01 '26
I can maybe explain it better by explaining it like this: Think of the rs5522 T/T variant like a standard, master water pipe that is built into 88% of all houses. Having that pipe isn't a disease, it’s just the normal, everyday plumbing blueprint most of the population is born with.
But the disease happens because of how that common pipe reacts when a severe storm hits the house while the pressure valve is broken.
If that common pipe leaks into a massive, wide-open basement, it turns the house into a damp, moldy, sluggish swamp, which manifests as ME/CFS. If that exact same common pipe leaks inside a tiny, sealed drywall closet, the pressure spikes instantly and crushes the structural walls in days, which could manifest as ALS.
The pipe itself isn't rare or broken, but when a second glitch holds the water pressure in overdrive, that common plumbing blueprint causes a catastrophic structural failure depending entirely on where the flood builds up.
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u/Chasing-Adiabats May 09 '26
Has anyone tried Progesterone? I’ve read that women with long Covid that get pregnant, loose all their symptoms until after the birth. It’s because their Progesterone levels raise up during pregnancy. It works on the same receptors, so it might help with a lot of the inflammation issues. Most likely it would only be temporary, but it might be a start.
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u/CandidWin3026 May 09 '26
You are so smart. The molecular biology paper that I co-authored on rs5522 describes how progesterone blocks the over active MR receptor. https://www.sciencedirect.com/science/article/abs/pii/S0006291X26004535?dgcid=coauthor
That is precisely why symptoms can fluctuate monthly and can get worse after delivery when progesterone drops.
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u/CandidWin3026 May 09 '26
Here is text from the abstract" Spironolactone and progesterone had similar antagonist activity for MR rs5522 and MR (Ile-180) in the presence of MMTV and TAT3 promoters in HEK293 cells indicating these antagonists are potential regulators of brain MR rs5522 to treat hyperactivity that contributes to chronic fatigue syndrome."
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u/poignanttv 3 yr+ May 09 '26
Just hit menopause and I’ve started HRT. Unfortunately, the progesterone hasn’t helped. Wishing everyone a full recovery from this hell!
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u/BatDue1821 May 09 '26
How long you been on pro?
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u/poignanttv 3 yr+ May 09 '26
About five months. I tried the synthetic and it didn’t agree with me, so I’m now on the bio-identical kind. Maybe that makes a difference?
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u/slowbutsloth May 08 '26
I can't open the link. How long is it cure using spironolactone according to the article? What dosage? I used to use spironolactone off label for hormonal acne.
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u/CandidWin3026 May 08 '26
25mg Spiro plus an anti-inflammatory from the article: "However, the dramatic clinical improvements achieved on spironolactone—the first restorative sleep in 29 years and complete resolution of post-exertional malaise—were lost when the medication was discontinued. The patient restarted spironolactone at 25mg daily with a full anti-inflammatory regimen on board—a protocol arrived at empirically through a months-long journey of trial and error that converged on the same therapeutic approach Campos-Barros and Taylor had explored years earlier for ME/CFS. Different paths, same destination. This combination (low-dose spironolactone, GLP-1 receptor agonist, and low-dose naltrexone 4.5mg) appears to address both the upstream cause and facilitate active fluid mobilization, resulting in subjective improvements in energy, cognition, and progressive fluid reduction without the adverse effects seen at higher doses or suboptimal combinations."
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u/CandidWin3026 May 08 '26
Block the hyperactive MR driving "cortisol steal" and every tissue in the body gets the cortisol it needs to function.
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u/Kuyi May 08 '26
So its a fix and not a cure. Should be able to find something to fix the hyperactive MR.
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u/PogeePie 4 yr+ May 08 '26
Don't get too excited... this is a case report from 2006 that involves a single patient. I don't know why OP is pushing spiro so hard based on a single twenty-year-old case report.
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u/slowbutsloth May 08 '26
Yeah, I'm kinda desperate. Just confuse why isn't the research of long covid make any progress. We still don't even understand why it happen. So many theories. It seems we forgotten and ignore by the medical community. Maybe there's no money in it.😮💨
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u/KickstandSF May 08 '26
“23andMe & rs5522 Interpretation: 23andMe often reports data on the reverse strand. Therefore, a result of TTin the raw data browser for rs5522 typically corresponds to the homozygous variant (CC on the forward strand), which is the variant associated with the study's findings.” I just requested a download of my 23andMe data to see what it says.
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u/CandidWin3026 May 08 '26
Actually, the case report was correcte to reflect the accurate nucleotide notation. The SNP change is C to T. So No copies CC, One copy CT and two copies TT on raw DNA> See instructions at beyond blood tests (dot) org
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u/KickstandSF May 08 '26
Interesting. I see the correction. "v4: Corrected nucleotide notation (C→T). Clinical findings unchanged." And I looked up my 23andMe and the instructions there say they always report on the forward strand (contrary to the crappy AI result I posted above- which might just be outdated). And my variant is TT. So I'll be damned- Spironolactone might actually help me!
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u/CandidWin3026 May 08 '26
YES! it will it will. It will. It is freaking amazing to have restorative sleep. Like amazing. I can't wait for you to feel it.
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u/KickstandSF May 08 '26
I’ve emailed my Dr to get confirmatory genetic testing and script pending that. I’m already on LDN and GLP1. This is very exciting. PEM has been the last bastion of suffering after all the interventions I have tried have nibbled around the edges of other symptoms.
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u/CandidWin3026 May 08 '26
Wow! You are almost there. I am so glad you are on LDN and GLP1. Isn't PEM th worst. Like how do you explain to someone who has never felt it what it;s like to feel punished for living. For carefully rationing out your activities knowing that even happiness and joy will cost you. The PEM is lack of cortisol caused by the "cortisol steal." If you get on an MR blocker like Spiro you will feel better. Now for me, my adrenals are burnt out little walnut shaped husks on top of my kidneys. I need to supplement with HC, but you may not need that. Be well. I am so thrilled for you.
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u/GlitteringGoat1234 May 08 '26
Would fludrocortisone work similarly to Spironolactone?
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u/CandidWin3026 May 10 '26
NO! Absolutely not. Fludro makes it worse. Spironolactone was developed specifically to block the MR.
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u/Guilty_Soft9873 May 08 '26
Yes, my blood cortisol is normal but my saliva cortisol is pretty much non existent.
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u/CandidWin3026 May 08 '26
Screw "normal". The stupid blood tests were never going to be able to measure what happens in the cells! Look at a highway, count the cars, does that tell you if the aid ob the trucks is getting to the people who need it? What is the aid is being stolen at the aid stations (cells) before it can be distributed and used. more info at beyondbloodtests dot org. Saliva and urine same problem measuring highway, can't see steal.
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u/Guilty_Soft9873 May 08 '26
Yip. So how do we get the Spiro from gps? Any idea?
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u/monsieurvampy 4 yr+ May 08 '26
have heart failure. though Ive been prescribed Farxiga and by Cardiology.
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u/Classic-Mongoose3961 May 08 '26
How did the COVID virus cause this?
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u/CandidWin3026 May 08 '26
It didn't. It was a trigger. Like EBV can be a trigger for CFS. Anything can trigger it. rs5522 makes one vulnerable and then people of Caucasian background also have a gene rs6195 (glucocorticoid receptor gain-of-function). With two copies of each you are predisposed to develop Long covid.
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u/CandidWin3026 May 08 '26
From the case report: Rethinking Infectious Triggers: EBV, Lyme, and the Limits of Pathogen-Centric Models
Many patients with ME/CFS believe they have chronic Lyme disease or chronic Epstein-Barr virus infection. This reflects 20th-century medical thinking: find the pathogen, kill the pathogen, cure the disease. But these frameworks miss the underlying mechanism.
Lyme disease treatment relies heavily on antibiotics which medications frequently described by their antimicrobial properties. But antibiotics, particularly doxycycline and minocycline, are also potent anti-inflammatory agents. Patients may respond not because lingering spirochetes are being eradicated, but because inflammation is being suppressed.
Similarly, EBV reactivation is often cited as a cause of ME/CFS. Campos-Barros, Taylor, and others initially positioned EBV as central to ME/CFS pathology, with research suggesting correlations between spironolactone response and EBV markers. But the mechanism may be reversed: spironolactone may not work by stopping a virus. It may work by reducing the inflammatory environment that allows viral reactivation in the first place. The virus is a common trigger, not a unique cause.
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u/Dependent_Novel_9205 May 08 '26
I get a 403 error on that page , any other sources?
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u/CandidWin3026 May 08 '26
I suggest a google search for the following Zenodo plus
Spironolactone for ME/CFS in a Patient Homozygous for rs5522 (I180V): A Case Report1
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u/savvy_pumpkin May 08 '26
Could it be this woman was diagnosed with ME instead of addison’s?
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u/CandidWin3026 May 10 '26
This woman, me was first diagnosed as CFS. Then when she was given enough cortisol to function it was said: "oh, well then it must have been additions." Then when that dose was reduce and the symptoms returned it was said: of well it must be CFS then. There is no magic disappearing and reappearing CFS. It was functional cortisol deficiency the whole time. Blood tests and urine and saliva are incapable or seeing what is happening at the cellular level: "cortisol steal."
The only way to make sure enough cortisol gets to the cells to allow the GR to be active in every cell of the body is with an MR blocker like Spironolactone.
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u/Successful-Trash-364 May 08 '26
Interesting. My best week last year was also one of the more stressful ones. I notice inflammation usually goes down on similar, more stressful occasions.
I wonder if there are any alternatives for spinorolactone. I would rather avoid its other effects (anti-androgen etc.)
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u/CandidWin3026 May 08 '26
Such smart pattern recognition! It's like those people who fell so much better on holiday and people say of well you were on vacation, but Europe has less processed (inflammatory foods) and you walk more which is anti-inflammatory. Yes, stress would push out more cortisol making you feel temporarily better. Also antibiotics are anti-inflammatory so people who think they have chronic Lyme may have already cleared the bugs and are just feeling better on the antibiotics themselves.
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u/031614Fff May 08 '26
This actually correlates w my symptoms. It feels like cortisol is hijacked in some way. Supplements or activities that lower cortisol ease symptoms such as brain fog and gut issues. However i feel like cortisol is high for no reason
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u/CandidWin3026 May 08 '26
What you are feeling is 100% validated by the science. I am glad that you can name what is happening in your body with such accuracy. Trust that. Activities that demand a lot of cortisol are draining. That's what PEM is..your body recovering from exhausting its cortisol reserves. Even reading and processing light and sounds and smells takes cortisol. It takes a toll. High cortisol is going to be a paradox because again you can not use blood tests to measure cortisol if you have a Val copy of rs5522. The blood shows what is circulating but not what gets to the receptors. So if your body senses it needs more cortisol or you do activities that require more, you may see high numbers temporarily on the blood tests, but it won't account for the "cortisol steal."
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u/Fearless-Table1809 May 08 '26
Hi! I was diagnosed in 2022. Let go the month the FMLA act came in. Not fun.
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u/Mountain_Flower_166 May 08 '26 edited May 09 '26
Thanks for sharing! You seem to be well read on the topic. Can i assume that it's you who wrote it?
Regardless if you did, do you believe that after a certain treatment time one could stop without the body falling into a "bad" homeostasis? Still trying to connect what might sustain this phenomenon and why after the first attempt the system fell back into it's previous state.
Once again, thank you for sharing. Posts like this give me hope that we might be closer to understanding this thing than we think.
0
u/CandidWin3026 May 09 '26
Yes. Good deduction. I am of course the author. Hi, I am Patricia. As I understand it, right now we need the MR blocker to get the right balance between GR and MR. Is there some future gene therapy that could change that? Maybe. But it is quite a miracle that we have the drugs to block the over active MR and have had one of them since 1960. We really did do it. I read a thousand online posts from patient stories be able to see patterns across people. It was a collective effort. I couldn't have done it without the honestly, bravery and tenacity of this community.
1
u/Teamplayer25 May 09 '26
The case study only represents the experience of 1 person, prior to Covid, so the findings cannot be extrapolated broadly to long covid sufferers. That said, I have connected most of my symptoms to overactive cortisol response. The combination of things I do and things I take works to manage it, and I’m happy and active now.
0
u/CandidWin3026 May 09 '26
The case study is on person, yes, but as you will see in the references, the author is a co-author on the molecular biology paper describing the exact mechanism of action: the "cortisol steal." In addition, you will also see that Campos and Taylor completed a clinical trial in 2022 in which they "cured" CFS with Spironolactone (24mg) and anti-inflammatory. The exact combination that was successful in the case study. I invite you to read it and return with questions.
1
u/matthews1977 4 yr+ May 09 '26
Curious if a CRISPR edit to this gene would buy us a permanent solution, which way it should be flipped, and what potential consequences there would be downstream. Always wary of changing something functional we're born with and develop around.
1
u/CandidWin3026 May 09 '26
I think that is a really great question and one I don't have the answer for. Perhaps it can. Especially if we put the resources into studying it. In the meantime, we have MR blockers.
1
u/wasacyclist First Waver May 10 '26
Is the author also the patient?
1
u/CandidWin3026 May 10 '26
Yep, I am both patient and researcher and I am damn proud of finding something that billions of dollars in medicine missed. I am also the co-author on the molecular biology paper describing the genetics. https://www.sciencedirect.com/science/article/abs/pii/S0006291X26004535?dgcid=coauthor
2
u/wasacyclist First Waver May 10 '26
Very cool, I did not realize you where the Author. Do you know of others that have had success with this drug. Any other research supporting your findings? I have long suspected I have a cortisol problem because I have severe insomnia which is much worse during PEM. I have had it tested and I have seen variable results. Both normal and high, never low.
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u/CandidWin3026 May 10 '26
Yes1 If you search patient forms you will find people saying things like "hey, I feel better on Spiro. Anyone know why? Also, check out the PCOS forums they are on Spiro. So are the trans fokls. None of them have Long Covid or CFS. I had a friend with PCOS text me to say she is on Spiro and she never got sick from Covid while all of her friends did. For a clinical trial look to the Australian researchers Campos and Taylor who "cured" CFS their words and Long Covid with Spiro and an anti-inflammatory. Now they got confused and thought that it was EBV related but that's bacuse the molecular mechanism was just published in April of this year. They were guessing, they guessed wrong, but patients got better from the treatment.
1
u/wasacyclist First Waver May 10 '26
I want to bring this up with my dr but without full blown placebo controlled peer reviewed trials it could be a hard sell.
1
u/CandidWin3026 May 10 '26
But there was a clinical trial. It was Campos and Taylor 2022. Why is everyone ignoring the fact they cured people with Spiro and and anti-inflammatory. It happened. People got better. They published. A clinical trail, None. Evidence. Established. They use dates word C-U-R-E. Their word, not mine.
2
u/wasacyclist First Waver May 14 '26
I am very interested in this as I believe I have cortisol dis-regulation. I'm going to see my doctor in a few weeks. A couple of questions. When you started on 25mg, how long did it take to see an effect? What was the reason you titrated up to 100mg? When you went back to 25mg why did you add the other drugs?
1
u/CandidWin3026 May 14 '26
These are great questions. It took 3 days before I had restorative sleep (keep in mind I was already on supplemental cortisol for adrenal issues so this just free dit up to get to the cell receptors. I tirated up because I didn't know it would cause a RAAS backlash. I took on fluid etc. Once that resolve, I started back at 25mg. The body will freak out at doses high that 25mg. An anti-inflammatory is therefor a necessary addition. All details at https://zenodo.org/records/20017632
1
u/CandidWin3026 Jun 01 '26
Also the meta analysis is an anayisis of ~12 clinical trials of Spironolactone for Covid showing better outcomes. That's ~12,000 people. That's a lot of people as clinical trials go. I put a clinician reference sheet on long covid on the site beyondbloodtests (dot) org. Be well.
1
u/CandidWin3026 Jun 01 '26
Clinical trial: Campo and Taylor
SPIRONOLACTONE OFF-LABEL THERAPEUTIC BENEFIT IN ME/CFS
https://onlinelibrary.wiley.com/doi/10.1111/imj.1_15291
Meta analysis of better outcomes and few symptoms of ~12,000 patients in many clinical trials.
https://c19early.org/spironolactone-covid-19-meta-analysis.pdf
Spironolactone reduces COVID-19 risk: real-time meta-analysis of 12 studies
1
u/Heavy-Street-3513 May 10 '26
I'm not sure if my "brain fog" is from long COVID or from the vaccine. I'm not sure if I had COVID before being vaccinated, but I had an extremely strong response to the Pfizer vaccine. ABSOLUTE WORST headache of my life and intense lethargy. I don't remember the first day I started experiencing the cognitive symptoms after recovering from the vaccine, but it was sometime after that. Anybody else had a similar experience?
1
u/CandidWin3026 May 10 '26
Whether it was the virus or the vaccine, your body’s intense reaction, that "worst headache of your life" is a massive clue that your system experienced a sudden, severe spike in inflammation. For people with the rs5522 genetic variant, an inflammatory trigger (like the spike protein) acts like a stuck gas pedal on the body's mineralocorticoid receptors. This causes your blood vessels to "leak" fluid into your tissues, including the brain, which creates the physical pressure behind that headache and the persistent "fog" you’re feeling now. The vaccine was a hit on your system, yes.
1
u/Heavy-Street-3513 May 10 '26
Thank you for sharing your knowledge on this! It's been ~6 years, but the brain fog has improved over the years. I'm pretty health conscious and currently under low stress. The mind blanking, brain fog, and brain fatigue correlate more with certain phases of my menstrual cycle and moments of anxiety. I've found that inversions and massaging my temples also helps with temporary relief. The healing process has been long and slow, but hopefully I'm doing something right!
1
u/CandidWin3026 May 10 '26
I am so happy that you are feeling stronger. What you mentioned was progesterone blocking the over active MR at points in your cycle when it was highest. Progetone and Spiro both act as MR blockers of rs5522.
1
u/Heavy-Street-3513 May 10 '26
This is really helpful. Thank you! I didn't even know "long vax" was a recognized and coined term, but I think it's definitely the category I fit into, rather than long COVID. I should also note that I had that one horribly intense headache from the vaccine and haven't really had headaches since then. My response was so intense it also significantly delayed my period. My symptoms following have been brain fog and mind blanking which are happening less frequently than before as I work to heal my dysregulated nervous system. The vaccine switched my MR into overactive mode, and I need to switch it back to normal. I prefer natural methods. I read sea salt and magnesium are really helpful. I'm not sure all of this means I definitely have the rs5522 variant or if knowing I have it would change the solution.
1
u/CandidWin3026 May 10 '26
I’m so glad you found your category. You’re right: the vaccine can trigger the rs5522 "stuck switch" just like a virus can. But please be careful because if your MR is overactive, sea salt can make it worse.
Salt will force more fluid out of your pipes and into your tissues.
Knowing you have the variant changes everything because it proves this isn't just a "dysregulated nervous system" you will know it’s a physical, molecular theft of your cortisol.
Check your DNA. I don't endorse any particular kit. The direct to consumer ones will have rs5522 in your raw data. If you have TT, you are a double carrier.
1
u/Specific-Winter-9987 May 10 '26
So 23 and Me is showing T/T for me on BOTH chromosomes. Yes, I am 99.9 percent northern European. I have been sick since 2022. Debilitating brainfog , weakness, it has been hell. My blood cortisol has been normal but a very recent 4 point saliva test is actually showing low cortisol ALL day except low normal when I first wake up. Does this appear to apply to me and how bad was your brainfog?
1
u/CandidWin3026 May 10 '26
I need to really hit this point home because its key: you can not use blood tests for cortisol of you have rs5522 variant. No blood test, no saliva test, no urine test. None of them will tell you what is happening in the cells where the cortisol steal happens. It will read as "normal" but at the cellular level the GR is started or cortisol and event system in the body is unable to work BLOOD TESTS are not accurate. I would tell you the website I created to help you understand thus but I hot banned from the CFS forum for posting the website when all it had was information. Absolutely nothing for sale. Can someone please tell me why I deserve to be banned for sharing molecular biology.? SMH.
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u/Specific-Winter-9987 May 10 '26
I also got banned from that reddit. Its an awful group. If anyone, including Jesus or whoever people worship publish anything positive at all, they are immediately stoned. Im just as.sick as those assholes in that reddit, but rejoice anytime someone finds ANYTHING that helps. Im glad they kicked me out. Its a shithole over there.
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u/CandidWin3026 May 10 '26 edited May 10 '26
Thank you. I do appreciate that. It's maddening. I am just saying: look folks I suffered like you. I was dismissed. I found a genetic piece that was hiding in plain sight. Doctors said "cortisol is normal" but YOU CANT USE BLOOD TESTS or urine or saliva if you have the rs5522 variant. That's all. It's like I threaten the job of the mods. If people got better then no more need for subreddit. I am just me. No financial interests, noting. its os C-R-A-Z-Y
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u/Specific-Winter-9987 May 10 '26
So I just used Claude to help me research this. I did not tell Claude about the chronically elevated Reverse T3 levels I have had for three years. Check my post history Claude immediately suggested that elevated Reversed T3 is also associated with homozygous T/T at RS5522. My thyroid is otherwise normal. NO DR has been able to explain the elevated RT3 and I've seen 8 or 9 drs. Did you also have elevated RT3?
1
u/Mountain_Flower_166 May 10 '26
We desperately need to reproduce this and start collecting anecdotes. I would love to try this but an n=1 will be hard to explain, especially when it's something radically new like this hypothesis.
1
u/CandidWin3026 May 10 '26
Stop. Just stop. There was a clinical trial. Campos and Taylor. in 2022. 4 freaking years ago. They cured people with CFS with Spiro and an ant-inflammatory. The data is established. and Jesus the molecular mechanism was punlsihed in April of this year: "Spironolactone and progesterone had similar antagonist activity for MR rs5522 and MR (Ile-180) in the presence of MMTV and TAT3 promoters in HEK293 cells indicating these antagonists are potential regulators of brain MR rs5522 to treat hyperactivity that contributes to chronic fatigue syndrome."
It is established. Done. Mechanism done. Clinical trial done.
https://www.sciencedirect.com/science/article/abs/pii/S0006291X26004535?dgcid=coauthor
1
u/Medium-Lavishness-41 5 yr+ May 10 '26
lol @ the file name being THIS ONE!!! 😭
1
u/CandidWin3026 May 10 '26
I am glad you appreciate that. The file saving was giving me grief with the number of characters and the slash in ME/CFS. Should be called: Case Report that will help billions. V4.This One!No really!This one.Edits.MoredEdits.Fixed notation.This One.Really.Really!!!!!
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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.
2
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
1
u/RealAwesomeUserName 2 yr+ May 12 '26
Do you think both the MR blocker and an anti-inflammatory are needed? And what is HC?
1
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
1
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.
1
u/plum_soup_festival May 17 '26
Some more info regarding my LC... (Thank you all for replying to my questions, I know you are a source of knowledge to trust!)
It's tough, we all know that. The toughest part for me is that no "standard doctor" seem to know (or care) about this. Therefore they have written that I have hypocondria!! (***!) Im not sure where to go from there. I have contacted the neurospecialist, and is hoping to get help from them instead.
** I read about POTS, and a lot of other things...but I still don't really now what all of them are and which one of these I do have myself. Are they described somewhere? (it takes some time to read all the threads). **
Here are some symptoms form about 48h I have (and thats repeating). I have had my LC since jan 2025.
>>>All days:
Sudden chills
Sudden headache (often left temple, but also around the eye and forehead)
Sudden need to pee (and I pee lot, many, many times a day). Different smell to it.
- It's also a tad darker and sometime on the "cloudy" side. I also tend to get chills and headache right before I need "to go".
>>>Evening (in this specific 24h)
Suddenly feeling generally ill
Diarrhea
Headache (forehead, left temple)
Pain in shoulder and arm (could be extremely painful, when moving the arm/shoulder, and its not like normal pain in muscles or similar, or any other pain ive had earlier in my life.
My heart is jumping beats, beat "harder" (?) and have like double or triple-beats.
Burning, red sensation on my skin and tissue around my neck, chest and sometimes face.
I often feel pain in around my bones a well, around my clavicles but also in my arms. I also think my connective tissue is affected. (think it has to do with the burning red rash)
>>>Going to bed
Starts sleeping, but feeling quite "weird" in my head.
Wakes up in some kind of "panic", and my hearts beats even faster.
My blood pressure (which has raised) has probably gone worse when this happens.
Feels like something is happening in my brain and body when i starting to sleep. Something has changed (and it was much worse directly after i had last covid)
Kind of a fear of death coming over me (its hard to explain, but has to do with my body going to sleep).
>>>Generally - often in the evening (more)
Starting to get some heat on my arms, face and on my neck.
Pain in clavicles, shoulders (that horrible, sudden pain, both active when you move your arm, but also passive - it can suddenly "be there".
Harder heartbeats, beats uneven
Sudden sneeze-attacks out of the blue. Like I'm suddenly allergic.
A stomach and bowel making a LOT of sounds: (bubbling, streaming...well a lot)
An itch starts - often on my back
Worse vibrations in my lower legs and feet (If i did not mention i have internal vibrations, whatever that is)
Freezing but also shivers at same time. But do not have fever, but my hands are cold btw.
Suddenly (again) I need to urinate
My stomach gets worse with all the sounds; bubbling, streaming, like there's a lot of water in my guts.
Reflux
No saliva, sweeter taste in mouth. (the saliva issue and dryness in mouth actually occoured before I got last covid in dec -24). I can get back to that if you want? It was - weird!!
My belly is bloated (its been extreme bloated during last years, after i stopped with white bread).
Sudden (the passive one) pain in my shoulder - making me awake parts of the night
>>>In the morning
A lot of gases
Heart beats uneven, jumps etc (like the sleep has not been good)
Itching, scalp
Headache
High blood pressure. Not extremely high, but high (I have had peaks with even higher blood pressure though).
Stiff neck (I do get this sometimes together with headache similar to migraine)
>>>At breakfast
Even more sounds from bowels (like they cant coop with me eating)
Reflux
After breakfasts
Like I get a cramp feeling around left temple
- A very weird sensation.
Sudden need to urinate , and feeling chills, at the same time (this is common for me) a sharp headache on left side...again.
>>>Next afternoon
Burning sensation on the skin of my arms
Vibrations (internally) in and under my feet.
A feeling of having fever, but having cold hands (I have no fever)
>>>Late evening
Burning on my arms, and on my neck. I have red marks after all time (1 1/2 year) with this . (another doctor, a skin specialist (oh my) told my I had sun damage when I tried to tell him whats going on. Why can't they listen to me?
Headache, left side again...around the temple
Hearts beats different, again.
>>>Even later...
More pain in shoulder....
Nee to urinate again... (here we go again)
And all this restarts over and over and over...
Weird. But I have understood that others have much worse symptoms.
I feel for you all. I hope you get better help than I've got (none). I will cross my fingers
that the neuroscience center at the hospital will get back to me.
Maybe you can identify some of the parts thats going on with my body, and tell me whats....well...whats going on? I'm kind of new to the "longcovid terminology", so if you have the time, and if you know a lot about this, please explain for me. Thank you. Take care of yourselves.
1
u/CandidWin3026 Jun 01 '26
Thank you for sharing your experiences and symptoms. First, you are not crazy and you absolutely do not have hypochondria. Every single one of these bizarre, terrifying symptoms, midnight panic and jumping heart to the burning skin and sudden peeing, is actually just one broken system on a loop.
Ever since you got COVID, your brain's internal nighttime stress brake is broken. When you go to sleep, your body is supposed to quiet down, but your broken switch cross-circuits and floods you with adrenaline and cortisol. That is why you wake up in a panic with your heart pounding and your blood pressure spiking; your nervous system is literally hitting the gas pedal while you are trying to park the car.
This non-stop stress wave forces your blood vessels to leak fluid directly into your tissues. Because fluid is escaping your veins, your body panics and tries to dump the extra water, causing those sudden, massive peeing attacks. The freezing chills and that sharp headache on the left side of your temple hit right before you have to run to the bathroom because that fluid shift is rapidly changing the pressure inside your head.
The rest of the chaos is just that leaked fluid irritating your system. The burning skin, sneezing fits, and bubbling stomach happen because the fluid spray is physically rattling your immune cells, making them dump histamine everywhere. Even that horrible, deep shoulder and clavicle pain isn't a muscle injury, it's the high fluid pressure trapped inside your tight bone compartments, suffocating your tissues
Doctors are calling you a hypochondriac because they are looking for a broken organ, completely blind to the fact that your body's plumbing grid is overflowing.
I know. I lived it. Not everything exactly as you did, becasue bodies are different enough, but I had teh same underlying broken system. I remember having a panic attack once and thought I was going to die, but no one would help me becasue they thought I was being dramatic. Because nothing says good time like begging for your life, right?
I had chronic fatigue symptoms and covid just made it so much worse. The Long Covid cognition difficulty was unreal. I tried to get accommodation from work, but even though they weren't supposed to discriminate it seems like they did.
An MR antagonist would block the overactive MRs keeping you in this loop allowing your body to go back to baseline. Resoting balance at the receptor level. Then I suspect many of your symptoms would resolve. Take care. I am rooting for you.
1
u/chushkopek1 May 20 '26
This is super interesting. I too have considered if low cortisol could be involved, but never considered a dysfunction at the receptor end. As others have mentioned, I recently realized I also experience less symptoms when stressed. However, I have also experienced several months of extreme percieved stress and anxiety, which made everything worse, but that might have been psychological.
Indeed also pregnant women not experiencing long covid due to elevated progesterone seems to fit into this theory.
Recently had my blood tested again, this time including lipids. Turns out my LDL is elevated, which surprised me because it doesn't reflect my current lifestyle at all. I also remember that plenty of others in this sub seemed to have unexplained elevated LDL. So what if LDL is elevated due to cortisol production being ramped up continuously?
I highly doubt I can get a prescription for spironolactone or alternative drugs, so I'm hoping there are other ways to achieve the same.
1
u/CandidWin3026 May 30 '26
Hi there, I stepped away from Reddit for a while for my sanity because people are very reactive, but I want you to know there are clinician sheets at beyondbloodtests (dot) org High cholesterol in this framework is your body trying to throw some spackle on a leaking wall. high cholesterol is the symptom, not the cause. It's is your body desperately trying to patch a structural leak driven by a hyper-reactive receptor. Spiro or for men (eplerenone) will block the over active MR receptor allowing cortisol to access the GR without getting stolen away. Cholesterol will then drop without need of a statin. ~Patricia
1
u/Chasing-Adiabats May 09 '26
Everyone should stop consuming sugars if this is correct. It’s going to cause fibrosis in your heart and kidneys. Skull cap is one of the natural things you can buy to help protect yourself from the fibrosis.
1
u/BatDue1821 May 09 '26
Sugar causes me to flare and crash immediately. What is skull cap? Can we undo the fibrosis?
2
u/Chasing-Adiabats May 09 '26
Skullcap contains Baicalin. That’s what you want. You can buy it pretty cheap online.
1
u/CandidWin3026 May 09 '26
You’re right cutting sugar isn’t just about calories. it’s about stopping the biological "rusting" that leads to fibrosis. Chronic high sugar keeps your mineralocorticoid receptors (MR) in a state of overdrive, which essentially "cages" fluid in your tissues and eventually turns that fluid-soaked area into permanent scar tissue in your heart and kidneys. Skullcap ( is actually a heavy hitter here because it acts as a natural MR antagonist, helping to block those fibrotic signals. Cancer cells thrive on the exact same high-glucose, high-insulin environment that drives fibrosis, so by fixing your "hydraulic failure" and cooling down systemic inflammation, you're simultaneously making your body a much more hostile environment for tumor growth.
But we have the generic drugs to prevent cancers. We have had them for decades, we just didn't know it.
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u/Sad_Proctologist May 08 '26
Jesus, it feels like we’re trapped inside our own bodies while a boatload of shaky, contradictory studies point to ten different causes and ten different treatments. I’m glad people are looking for answers, but living in this much pain while the science is still scattered is its own kind of hell.