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

[godlovesatrier]

I'm so pleased its helping your wife. The releif you get when something works is immense.

Sadly I think while this is great for women it could lower t levels too much in men. The men I know who tried it seemed to get really depressed.

I think for women tagamet, zantac and Spiro are all probably worth trying. As they won't have the issues around testosterone.

Even so you're making me want to give it a go!! Sadly my window for experiments has come to a close as I am about to start a new job so doubt I'll be able to try it anytime soon which is annoying.

 

[pattismith]

I'm so pleased its helping your wife. The releif you get when something works is immense.

Sadly I think while this is great for women it could lower t levels too much in men. The men I know who tried it seemed to get really depressed.

I think for women tagamet, zantac and Spiro are all probably worth trying. As they won't have the issues around testosterone.

I do agree, Spiro is worth a try for women, especially those with acne issue and signs of high Hepcidin (attention deficit, restless legs), as Sprionolactone has also shown to reduce Hepcidin

Imatinib and spironolactone suppress hepcidin expression - PMC (nih.gov)

 

[Mary]

I'm going to be starting spironolactone 25 mg. shortly - my doctor is prescribing it for high aldosterone. I lose a lot of potassium, have to take 1200 - 1400 mg a day in divided doses. Without it I get symptoms of hypokalemia within a few days - painful spasms and twitches in my feet and lower legs. I catch it pretty quickly, drinking a couple of glasses of tomato juice or low-sodium V-8 when symptoms appear, in addition to my regular daily supplement - obviously my symptoms would get worse if I didn't stay on top of it.

I have a call in to my doctor about my potassium supplement - I'm afraid to stop it, because I develop hypokalemia so quickly without it, but also am very afraid of hyperkalemia, which I have never had to deal with. I don't know the symptoms and wouldn't know what to do anyways. My doctor has ordered labs in 2 - 3 weeks but I haven't started the spironolactone yet and won't till I hear from him about my potassium supplement.

This is a very interesting thread @Hip - I missed it before and didn't realize that spironolactone can help with EBV!

I found another thread where a member was significantly helped by spironolactone:
https://forums.phoenixrising.me/thr...pirolactone-male-late-40s.88230/#post-2450039

Fingers crossed! tbh, I don't really care about upping my potassium levels which I think is my doctor's main concern with the spironolactone, but am very curious to see if it will help with anything else . . .

 

[cfs since 1998]

This may thus make spironolactone anti-inflammatory, as "aldosterone promotes an inflammatory state characterized by vascular infiltration of immune cells, reactive oxidative stress, and proinflammatory cytokine production". Ref: here.

Preventing vascular inflitration of immune cells sounds like a great idea to me. Immune cells damaging small fibers that innervate blood vessels is currently my favored hypothesis for ME/CFS.

 

[Mary]

I think this might be another one where women get on a lot better than men. Like the H2 blocker Tagamet for example, which is really bad for testicular health.

Hi @godlovesatrier - I know your post is from 2021, but just saw it. fwiw, I did badly on Tagamet 10 or 15 or? years ago - it caused a very dark mood which I couldn't handle. My doctor had thought it might help my immune system but I couldn't tolerate it.

https://pubmed.ncbi.nlm.nih.gov/7296440/

 

[ruben]

Another promising sounding story. Sorry to be lazy. I'm feeling pretty washed out. I'm in UK. How/where do we go to obtain this please. Thanks in advance.

 

[Mary]

Another promising sounding story. Sorry to be lazy. I'm feeling pretty washed out. I'm in UK. How/where do we go to obtain this please. Thanks in advance.

@ruben - In the U.S. at least you need a prescription from your doctor to get spironolactone - I assume the same is true in the UK, and fortunately with my Medicare prescription insurance it didn't cost me anything, so it's one of the cheaper meds in general.

And I'm sure it could be found at one of the on-line pharmacies in this thread: https://forums.phoenixrising.me/threads/list-of-reliable-prescription-free-online-pharmacies.8113/

 

[godlovesatrier]

@Mary I forgot that you'd had that reaction actually. But yes it seems nasty stuff :/

 

[Mary]

Spironolactone update - I tried it maybe 10 days ago? I took it for 2 days, got quite tired and dizzy, and my BP went up to 169/____ (I forget the bottom number), so I stopped it. Wikipedia says that 20 - 30% of people who take it get dizzy. Dang!! And fatigue is another "side" effect.

btw the doctor had said it was fine to keep taking my potassium supplement, even though spironolactone is supposed to increase potassium levels - in a way I'm relieved that I reacted badly to it. I didn't want to have to worry about hyperkalemia --

 

[Wayne]

btw the doctor had said it was fine to keep taking my potassium supplement

Hi @Mary -- You had mentioned in another thread some of your challenges with your potassium levels and wondering what some options might be. I was going to (and then forgot ) to ask whether you've ever tried transdermal potassium. Quite honestly, I've never heard of it myself, but I have heard of transdermal magnesium oil being highly effective. I read that if a person has low magnesium levels, transdermal magnesium is one of the fastest ways to restore optimal levels.

I had assumed magnesium levels can be low to begin with because of some difficulties digesting and assimilating (metabolizing?) it via the digestive tract. And the transdermal route makes for a conventient "bypass". I have NO idea whether this might be applicable to potassium, but I do know the skin has some pretty amazing abilities to absorb nutrition, I think especially when DMSO is used to aid in that absorption.

Just to mention, @Sherpa is impressed with how magnesium enemas can quickly restore magnesium levels as well. Again, have no idea if that would applicable for potassium.

How to Make Magnesium Enemas w/ Epsom Salt​

 

[Woodyrob]

The reason I take spironolactone is immediately after I’ve done too much cellular exertion. The reason is I suspect that there is a cellular metabolite that gets released in abundance during cellular exertion that is then being mistakenly targeted by an autoantibody.

So I drink large amounts of water and electrolytes while taking spironolactone to help pee out the metabolite faster. I pee a lot for about 2 to 3 days. I have found this method can prevent a PEM crash.

Researchers say “there’s something in the blood”. And I think that “something” is an autoantibody incorrectly targeting a free floating cellular metabolite.

I could be wrong but drinking massive quantities of water after exertion has helped me.

Also a lot of rest during the week after too much exertion helps too

 

[Mary]

@Wayne - I've read about transdermal magnesium and I know it can be difficult to get magnesium up to a proper level, but I think it's different than potassium. I've never heard of transdermal potassium and I don't think I have any trouble absorbing potassium. I think the problem might be I excrete too much - I don't really know. It seemed to start when I started taking methylfolate in 2010 (refeeding syndrome) and I've had to take it ever since. Though it's possible I had problems before then but was unable to identify them - low potassium can cause severe fatigue (among many other symptoms) and I did have unexplained severe fatigue (different then PEM) on several occasions.

I can get low potassium symptoms, often in the middle of the night for some reason - will get twitches and painful spasms in feet/ankles/lower legs and I'll drink a couple of glasses of tomato juice and within a relatively short time I'm able to go back to sleep. So I don't think I have trouble absorbing it. And as long as I take my potassium faithfully, several times a day, I generally don't get symptoms of low potassium. But I do have to take it daily. Otherwise within a few days I'll get symptoms of low potassium. But I don't think taking more potassium would fix this - you can only take so much and then might risk hyperkalemia. It's different than magnesium.

btw, my magnesium levels on the magnesium RBC (intracellular) test have been fine. I take about 800 mg. of magnesium glycinate a day (in divided doses).

 

[Mary]

So I drink large amounts of water and electrolytes while taking spironolactone to help pee out the metabolite faster. I pee a lot for about 2 to 3 days. I have found this method can prevent a PEM crash.

Spironolactone is a potassium-sparing diuretic so I'm wondering about the electrolytes you take. It's generally not recommended to take potassium (an electrolyte) while taking spironolactone - otherwise you might risk hyperkalemia. But I'm sure it all has to do with how much you take - but it's something to be aware of.

Do you take spironolactone daily? It's unclear to me - or do you just take it after too much exertion? That's very interesting that it helps prevent PEM.

 

[Wayne]

will get twitches and painful spasms in feet/ankles/lower legs and I'll drink a couple of glasses of tomato juice and within a relatively short time I'm able to go back to sleep.

Sounds quite challenging, but nice hear you've got a successful "work-around" that works well for you.

 

[Mary]

Sounds quite challenging, but nice hear you've got a successful "work-around" that works well for you.

Actually @Wayne, my potassium issue is the easiest part of this illness to manage for me I just take my potassium and keep tomato juice on hand and I'm set. Sleep issues, insomnia, and crashing are much harder to deal with!

I used to use low-sodium V-8 for low potassium - it has around 850 mg. potassium per 8 ounces - but it also has "natural flavors" added to it - MSG - which gives me severe insomnia, which I discovered the hard way. It worked great to stop the cramps but I did not sleep the rest of the night . . .

 

[Wayne]

Sleep issues, insomnia, and crashing are much harder to deal with!

Hi @Mary -- I just made a discovery this past week you may find interesting. I have a home mHBOT chamber (lucky me!), and almost always fall asleep when I go into it, because it's so relaxing. This past week I decided to raise and lower the pressure a little slower to try to see if I might discover something new. I did!

I noticed that when the pressure was almost to zero (maybe 10% of normal), the relaxation in my body felt different, and when I went to sleep at this lower pressure, it seemed deeper and more comfortable. It made me wonder if some people with insomnia might be helped by breathing in concentrated oxygen. I think what I experienced doesn't necessarily need an expensive mHBOT chamber.