Spironolactone usage

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I started taking spironolactone about two weeks ago with good results. I see that Rrrr also reported good effect. I'll take Valacyclovir and artemisinin, but I'm pretty sure it's the Aldactone that's doing the heavy lifting.

Anybody else try it?

I was having serious brain fog for about a year. Starting taking the spiro and the fog lifts. Nice!

Paul
 

Helen

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I got them because of adrenal issues. I got rid of extra fluid but also got an electrolyte imbalance and magnesium deficiency. I can´t remember if it had any effect on my brain fog as focus at that time was on the adrenals. I recommend researching how to avoid the side effects. Best of luck!
 

CFS_for_19_years

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Spironolactone is a testosterone blocker, so I wonder if your doctor made you aware of this.

I'm female and took spironolactone for a time. It helped loosen my muscles. My doctor didn't want me to stay on it because it can raise cortisol. It has a tendency to raise potassium, so that needs to be monitored with blood tests.

I asked my doctor which patients stay on spironolactone for the long term and he said heart failure patients.
 
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Thanks. Yes, I did my research on the side-effects on spironolactone before taking it. I'm supposing that it's not necessary to take it continuously to reap the benefits. The most serious potential side-effect was kidney damage, and I'm guessing that would be the result of a long course of high doses.

Did you know that aldactone interrupts the viral reproduction process during the formation of the viral envelope? To me, the implication of that is that a partially formed virus particle is eventually released into the body. At that point, the immune process discovers this foreign material and creates antibodies for it. I'm wondering if, over the course of time, the body will develop antibodies that will target the surface of the viral envelope, not the glycoproteins dangling from the virus.
 

Rrrr

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@pcmenten so glad you are reporting these promising results! can you tell me how quickly you saw results and what dose you are on?

and are you still experiencing less brain fog on the spironolactone (aka aldoctone) now, 2 wks after being on it? i was on it for years for a separate condition (it was supposed to lessen hairiness in women who have polycystic ovarian syndrome, and that was why i took it).

and then i went off of it it a few years back. in general, i think i got worse a few years back, when i went off of it. but there are so many factors and there is just the passage of time, too. maybe i should go back on it...?

by the way, here is Dr. Goldstein's thoughts on spironolactone: http://www.cfstreatmentguide.com/dr-jay-goldstein-a-z-treatments.html -- apparently he said it worked FAST, which is why i was asking how quickly you saw results re: your brain fog.
 
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Rrrr, you, my friend, amaze me. Back in 2011, you were reporting the good results you were seeing when taking this medication. I had learned that the antiviral properties of Aldactone were discovered only last year (March 2016). You were seeing its benefits SIX YEARS AGO!!! Amazing!

It was about five days before I was sure I was feeling better. In fact, I snapped out of it so hard, I was suspicious. But it seems to be an enduring effect. I'll do my best to continue to report my progress; therapeutic effects, side effects, and test results.

I started at a high dose, 200mg/day (100mg x2 daily), to get my system primed. I've had to cut back to about 50mg/day (25mg x2). When I took it on an empty stomach, I got sick to my stomach so I now take it with food.

Brain fog cleared, and my energy levels are much better. The unexplained fevers have stopped. I no longer sleep all weekend. It's still too soon to know if this is placebo effect, so I'm going to continue to take it and be very mindful of how I'm feeling.

Eventually, I'll get my antibodies retested. Jan. 2017, I tested at EBV EA IgG 38.3 (ref. 8.9),EBV VCA IgG >600.0 (ref. 17.9), EBV NA IgG 403.0 (ref. 17.9), EBV VCA IgM <36 (ref. 35.9), HHV6 IgG 10.00 (ref. 0.99).

Thanks for the link. I'm always wanting to learn what I can.

Paul
 
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Update 3/3/2017 - I discontinued the spironolactone and doxycycline a week ago. When I discontinued meds, I was taking ~25mg x2 daily of the Aldactone.

While taking the meds, I had been experiencing dizziness when laying down or sitting up (orthostatic hypotension?). That issue is now reduced but still present. My GI function had improved while on the meds but I had less appetite and my weight had dropped to 187 lbs., likely due to water loss. After stopping the Aldactone, I've had a return of appetite and have gained 12 pounds, probably a combination of water and body (muscle and fat) mass.

My apparent cognitive improvements continue with better focus and memory. I was feeling some low energy while on the meds, perhaps due to lower blood pressure. After stopping the meds, my energy levels are improving and my personal productivity is better.

The flushed/fevered feelings are steadily diminishing, nearly gone now.

It's still too early to make any conclusions about the success of the attempted therapy. Placebo effects can confound my self-observations. For what it's worth, I'm COMT Val/Val, so placebo is less effective for me, but there's always a chance.

I'm going to take some time off of the meds for now, but I'm still thinking that the possibility of a lasting therapeutic effect of the medication makes it worth considering repeating the therapy to try to add to the potential antibodies. And I'm due back to the doctor soon and might be getting another blood test to measure the markers for EBV, HHV-6, and HSV1.

Regards, Paul
 

Hip

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I was having serious brain fog for about a year. Starting taking the spiro and the fog lifts. Nice!
Interesting. I tried spironolactone at doses of 25 mg daily for 5 days, and did not notice much, but I did not venture higher than that dose.



Update 3/3/2017 - I discontinued the spironolactone and doxycycline a week ago. When I discontinued meds, I was taking ~25mg x2 daily of the Aldactone.
So you began doxycycline at the same time that you began spironolactone? That may make it hard to work out what was causing what.



It was about five days before I was sure I was feeling better. In fact, I snapped out of it so hard, I was suspicious. But it seems to be an enduring effect. I'll do my best to continue to report my progress; therapeutic effects, side effects, and test results.
I suspect that very rapid improvement you felt in brain fog in less than 5 days is unlikely to be due to an antiviral effect, because usually EBV antiviral drugs like acyclovir take many months if not years to improve ME/CFS symptoms. This is what Dr Lerner found in studies on acyclovir for ME/CFS.

Also, my calculation in this post showed that spironolactone is a weak antiviral compared to acyclovir (although I am too brain fogged today to recheck my calculation).



You probably already know this, but people taking spironolactone need to avoid potassium supplements, including low sodium table salt (which contains potassium chloride).
 
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Hip, I was taking the doxycycline to try to cause a reactivation of the EBV. The concept was that the doxycycline would reactivate the EBV and the spironolactone would interfere with the formation of the viral capsid. The result would be the release of partially formed EBV viral particles into the bloodstream, which would then be detected by the immune system, resulting in antibodies that would be able to neutralize EBV.

Thanks for your well-informed advice. Yes, I was avoiding the 'lite salt' and going for the NaCl instead. And, regarding the sudden improvement in cognitive symptoms, note that I was taking 200mg (100mg x2 daily) of Aldactone at that point. (I don't recommend that others do anything like that.) I understand your skepticism, but I would be remiss not to report my impressions.
 

Hip

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And, regarding the sudden improvement in cognitive symptoms, note that I was taking 200mg (100mg x2 daily) of Aldactone at that point.
I find it interesting that your gains in cognitive clarity have remained after your stopped taking these drugs. I am thinking either that means spironolactone has long lasting effects that continue even after you stopped, or perhaps one other possibility might be that you may have had some bacterial infection which was worsening your brain fog, and the doxycycline cleared it up, leading to lasting gains in cognitive clarity.

In any case, great that you have made improvements.
 

Tunguska

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I haven't tried spironolactone, but part of its picture looks strikingly similar to progesterone (which I have). Have you tried it? It also features dose-dependent anti-androgen abilities, and several other things. According to wikipedia the spironolactone is also progesterone receptor agonist.

The progesterone has eNOS boosting ability, and it looks like spironolactone does as well - even seems to be greater information on it (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4978608/ https://www.ncbi.nlm.nih.gov/pubmed/10673249) - that might play a hand in low BP issues.

But they both also have the ability to hinder Akt/mTor (and progesterone can increase Tregs; don't see the info for spironolactone) so I think they both call for very careful use over time. I use progesterone but I'm very wary of taking these daily perpetually, during the day, or high doses. Though I have to say this inhibition stuff appears circumstantial, and I do not understand all of it (example of the madness: https://www.ncbi.nlm.nih.gov/pubmed/22154800 here you get progesterone & friends increasing autophagy while simultaneously enabling mTor, granted it's in vitro). I would love to be wrong on this one, or to better know the circumstances and how to manipulate them if possible...

For progesterone, low-dose in the evening is strictly how I dose, plus several-day breaks. If I could get spironolactone easily I'd certainly give it a try, but it sounds like it might be problematic to fit in the daily rythm given all of the above, since you also don't want cortisol at night... right?

Thanks for reviving the topic, the steroids have been my best friends as of late.
 
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Frick! I'm feeling like a hypochondriac, but the sudden improvement in symptoms at the time I began taking doxycycline has me wondering about Lyme disease. I grew up in western Connecticut and still visit family there, so the potential for exposure is pretty high. There's no doubt that EBV, HHV6, and HSV1 have been active, but adding Lyme on top of all that?

I wish we had better treatments for the viruses and better diagnostics.

Paul
 
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@Tunguska - Did is miss something? You wrote; "Though I have to say this inhibition stuff appears circumstantial,...". I must have missed the context.

Here is the link to the Aldactone research.

https://www.ncbi.nlm.nih.gov/pubmed/26976570

" Expression of EBV viral capsid antigen is highly SM dependent, and spironolactone inhibits viral capsid antigen synthesis and capsid formation,..."

"spironolactone inhibits expression of other SM-dependent genes necessary for infectious virion formation. ..."


On another note, I visited with a provider and I am being tested for Lyme. Like me, she was suspicious of the sudden improvement when I began taking the doxycycline. She doesn't approve of my experimentation but hopes that my taking the doxy will improve titers for Lyme.

Paul
 

pattismith

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Hello Paul, did you keep your experimentation with Spironolactone?

I just started it tonight. My first goal is to raise my blood potassium level, because it is borderline low.
 

pattismith

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I update my spironolactone short trial:

after two days, my potassium level didn't improve, and my sodium level decreased from 138 mmol/l to 134 mmol/l (min range is 135), so I gave up.

Spironolactone has anti mineralo corticoid effect (antialdosterone effect) which logically include lowering sodium and increasing potassium, so the sodium was expected.

I wouldn't recommend it to patient with either low sodium or high potassium.
 

hunter1899

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@Tunguska - Did is miss something? You wrote; "Though I have to say this inhibition stuff appears circumstantial,...". I must have missed the context.

Here is the link to the Aldactone research.

https://www.ncbi.nlm.nih.gov/pubmed/26976570

" Expression of EBV viral capsid antigen is highly SM dependent, and spironolactone inhibits viral capsid antigen synthesis and capsid formation,..."

"spironolactone inhibits expression of other SM-dependent genes necessary for infectious virion formation. ..."


On another note, I visited with a provider and I am being tested for Lyme. Like me, she was suspicious of the sudden improvement when I began taking the doxycycline. She doesn't approve of my experimentation but hopes that my taking the doxy will improve titers for Lyme.

Paul
Was reading your posts and wondered how you were doing these days??
 

Marylib

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I'm hoping to give this one a try. (Spirinolactone). So it's basically - get the blood tests to make sure it's not skewing things one way or another? Someone tried me on progesterone tablets, hoping to improve my sleep a few years ago, and it felt horrible. (I'm one of the typically early menopause people - which is helpful to know when discussing hormones).
EDIT: I must confess that my hair loss is one of my motivations for spirinolactone. It kind of fell out quite suddenly a few years ago but I can't blame it on the progesterone tablets most likely because it was a one-tablet experience. Maybe half a tablet.
 

pattismith

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I'm hoping to give this one a try. (Spirinolactone). So it's basically - get the blood tests to make sure it's not skewing things one way or another? Someone tried me on progesterone tablets, hoping to improve my sleep a few years ago, and it felt horrible. (I'm one of the typically early menopause people - which is helpful to know when discussing hormones).
EDIT: I must confess that my hair loss is one of my motivations for spirinolactone. It kind of fell out quite suddenly a few years ago but I can't blame it on the progesterone tablets most likely because it was a one-tablet experience. Maybe half a tablet.
I was always bad with progesterone...
I had menopause in 2019 at age 52, and tried Tibolone and I'm still on it.