Study found 31% of EBV ME/CFS patients achieved full remission on spironolactone 25 mg daily

[godlovesatrier]

TRT - good idea! I guess you could if you knew the exact hormone/s being effected. That's not a terrible idea

 

[GlassCannonLife]

TRT - good idea! I guess you could if you knew the exact hormone/s being effected. That's not a terrible idea

I looked it up, it apparently binds to the androgen receptor (AR) and displaces testosterone and DHT. You likely wouldn't be able to alter this with TRT unless you actually used some type of anabolic that had a stronger affinity to the AR than that of the spironolactone.

Probably could look up a table of androgens and AR affinity? The main point would be to still have circulating spironolactone that can exert its effects without making you hypogonadal.

It is a dose dependent effect though IIRC, so you might be able to just get away with a low dose, with more being tolerable depending on your AR density (varies with genetics I believe).

 

[godlovesatrier]

Not to go off topic but the other issue to consider is that whilst it might help a lot if you're lucky CMV, EBV and HHV-6 are the three primary ME candidates for problematic issues over time. Followed closely by the enteroviral infections, although they could potentially be another subset entirely I guess.

As for the TRT - yes if you could get the dosing right it might work. Hell I could do with some to offset the EGCG and Reishi suppression

 

[CaptainA]

Just got 90 tablets of spironolactone so going to give this a 3 month trial. I'm also on Dr. Pridgen's protocol of Valacyclovir, Celecoxib, Omeprazole, Colestipol, Xyzal, and Zaleplon, but the Drug Interaction Checker shows that there are no contra indications for all of these together so it should be ok I'm guessing. I'll report back if I get anything from this.

 

[ChookityPop]

Just got 90 tablets of spironolactone so going to give this a 3 month trial. I'm also on Dr. Pridgen's protocol of Valacyclovir, Celecoxib, Omeprazole, Colestipol, Xyzal, and Zaleplon, but the Drug Interaction Checker shows that there are no contra indications for all of these together so it should be ok I'm guessing. I'll report back if I get anything from this.

Have you noticed anythiong? Might be too soon but Im asking anyway.

 

[ChookityPop]

Do we know for how long they treated with it?

 

[GlassCannonLife]

Just got 90 tablets of spironolactone so going to give this a 3 month trial. I'm also on Dr. Pridgen's protocol of Valacyclovir, Celecoxib, Omeprazole, Colestipol, Xyzal, and Zaleplon, but the Drug Interaction Checker shows that there are no contra indications for all of these together so it should be ok I'm guessing. I'll report back if I get anything from this.

What is that protocol targeting? Seems like so many random drugs

Edit: is it the same one essentially as what he's been using for fibromyalgia? Ie mainly targeting chronic HSV in the gut.?

 

[CaptainA]

Have you noticed anythiong? Might be too soon but Im asking anyway.

I haven't noticed anything yet. Its been just over a month.

 

[godlovesatrier]

I've come to the conclusion that this drug is probably only working for some because it's blocking the master male androgen and in a subset like myself that can (after a few weeks or days) cause cessation of fatigue and PEM. I think it takes weeks on the whole and I'd expect it wouldn't work if there were any other stressors like bad environmental factors or it was the winter.

Hip made it pretty clear it couldn't be ebv that it was hitting due to the bioavailability of the dosing. But I suspect if the 5-ar inhibition was strong enough, it would have a more rapid effect on the subset who do well with 5-ar inhibitors.

Of course that isn't without all kinds of issues. Plus I've read conflicting info about 5-ar inhibitors. Seems like only a small number of men actually react badly to it and long term therapy doesn't actually seem to have a bad effect on many. According to a few longitudinal studies.

Also if the anti inflammatory effect is potent enough that would undoubtedly help too. I personally wonder if this could be taken for short periods like a week to help block fatigue and then stopped thereafter or whether that wouldn't work.

 

[godlovesatrier]

So studies showed spiro reduces T levels by 50% it seems. I guess it might be fine for a week or two but could cause a sudden depressive episode to appear.

Shame it has such bad effects long term, definitely is not something that someone can take for more than a week or two.

 

[Hip]

I've come to the conclusion that this drug is probably only working for some because it's blocking the master male androgen and in a subset like myself that can (after a few weeks or days) cause cessation of fatigue and PEM. I think it takes weeks on the whole and I'd expect it wouldn't work if there were any other stressors like bad environmental factors or it was the winter.

Hip made it pretty clear it couldn't be ebv that it was hitting due to the bioavailability of the dosing. But I suspect if the 5-ar inhibition was strong enough, it would have a more rapid effect on the subset who do well with 5-ar inhibitors.

Interesting idea.

If you want to experiment with 5-alpha reductase (5-AR) inhibitors, there are a number of supplements and drugs which do this to various levels of potency.

The drug finasteride is a potent inhibitor, used to treat male pattern baldness, which is driven by the hormone dihydrotestosterone (DHT) made by the enzyme 5-AR.

Then supplements like saw palmetto standardized extract 320 mg daily and beta sitosterol (100 mg three times daily) are reasonably strong 5-AR inhibitors, that are used in these doses for hair loss.

 

[godlovesatrier]

Well I think those would be too aggressive. I mean maybe there wouldn't be any real damage to taking them long term but maybe there would. If the herbals are potent in blocking but body recovers quickly there ok then. What put me off trying Spiro is the fact it'll shut the pathway down for awwhile. Still for all I know I'll be a responder. Don't know till I try really.

Currently in my worst crash in over a year tho. Feels like adrenal fatigue need to figure out what's causing it. Might try the Spiro after that maybe.

 

[Hip]

Well I think those would be too aggressive.

I have taken saw palmetto standardized extract for hair loss in courses of several months (both before and after I developed ME/CFS), and have not noticed side effects. I have not tried finasteride, being put off by the ME/CFS-like post-finasteride syndrome that occasionally occurs with long-term users of this drug.

 

[godlovesatrier]

Yes the potential for Spiro to be like finestride worries me a lot.

I'd try saw but that tends to not agree with me I've noticed in the past. Forget specifics because I took it in 2017.

But agree that's a good alternative. I really do think it works. I was PEM free for 3 months last year and drove for 3 hours in July without crashing after. Well no I did crash but the effects lasted about 2 hours. I believe taking more egcg helped. But of course I didn't like the fact my egfr was at 60 at that time.

So annoyingly complex. But maybe this does explain with Spiro worked at all. I do think I'll probably give it a go for a week or two. Once I've figured out what is causing this terrible adrenal fatigue.

 

[ChookityPop]

Yes the potential for Spiro to be like finestride worries me a lot.

I'd try saw but that tends to not agree with me I've noticed in the past. Forget specifics because I took it in 2017.

But agree that's a good alternative. I really do think it works. I was PEM free for 3 months last year and drove for 3 hours in July without crashing after. Well no I did crash but the effects lasted about 2 hours. I believe taking more egcg helped. But of course I didn't like the fact my egfr was at 60 at that time.

So annoyingly complex. But maybe this does explain with Spiro worked at all. I do think I'll probably give it a go for a week or two. Once I've figured out what is causing this terrible adrenal fatigue.

How long should one take Spiro to know if you are a responder or not?

 

[mitoMAN]

How long should one take Spiro to know if you are a responder or not?

many of our discord tried it. Noone had success. The paper discussed here is BS imo

 

[godlovesatrier]

mito it would only work for a tiny number of patients, maybe as little as 15%.

Anyway it has so many issues it cuts T levels in half within a few hours I believe, which is going to cause issues in and of itself.

You'd know within a week I reckon @ChookityPop - maybe even a few days, it shouldn't take any longer than that.

 

[mitoMAN]

The study claimed everyone had improvements tho? Need to recheck if they tested for active pcr EBV

"A 2020 study gave spironolactone 25 mg daily to sixteen Epstein-Barr virus ME/CFS patients, and found that 31% achieved full remission from their illness, and the other 69% observed improvements in their ME/CFS symptoms."

 

[godlovesatrier]

Selection criteria could have been a bit shit for the patients though potentially.

I think Hip made a very good point about the pharmacology of the drug, if it never even has the chance to inhibit ebv heavily enough I can't see why it would help in that department.

I don't know how potent the anti inflamatory effect is from the drug either.

But for ebv h2 blockers would be the way to go as Dr Goldstein noticed improvements to patients within 30 minutes, while they were in his care at his office. But yet again testosterone issues are a huge problem with those drugs zantac and tagamet I am talking about here.

 

[Imaximus786]

My wife was diagnosed with ME two months ago. I’ve been searching high and low for different treatments as there’s no known treatment for ME. I came across this research and asked her doctor to let her try it. Within two days of using it, along with Colchicine and LDN, she’s seen SIGNIFICANT improvement. I highly recommend trying this treatment. I know it won’t work for everyone but so far it’s looking like a miracle for our family. I know the quality of the study isn’t great, but it’s working and that’s all I care about. She started with 12.5 and will move up to 25mg.