Supplements and Drugs That Reduce or Prevent PEM (Post-Exertional Malaise)

Hip

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Basica Active E alkalising mineral formula works well for me.

That contain citrates, which are as effective as alkalizing as bicarbonate. I would think citrates may work by the same mechanism as sodium bicarbonate: an alkalizing agent to help neutralize the lactic acid.

Although as far as I can see, alkalizing will not entirely get rid of the lactic acid issue; alkalizing may convert lactic acid to lactate, neutralizing its acidity, but will not get rid of the lactate.

The lactate I think will still need to be got rid of in the usual way, which is via the Cori cycle (lactic acid cycle) that takes place in the liver; the Cori cycle converts lactic acid / lactate to glucose (but requires quite a bit of energy to do this).

But neutralizing the acidity of lactic acid with an alkalizing agent like sodium bicarbonate may just on its own be of benefit in PEM.

(Though I should add that in the muscles during exercise, I am not sure whether anaerobic glycolysis produces lactic acid or lactate, as I have read conflicting accounts about this).
 
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Mary

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I agree. With these things, the proof of the pudding is in the eating, and if they work for you, that's the bottom line. And if they work, it means the same supplements may also help others with ME/CFS. In fact I have been experimenting with BCAAs on and off ever since I read your threads (though in my case, because I don't get PEM from physical exertion, only from mental exertion, I can't really test any of these PEM busters on myself, except for their effects on mental exertion PEM — but that may be a different sort of PEM).

What is your PEM from mental exertion like? Do you get the same bone deep exhaustion and aches and lactic acid buildup etc that can take days to recover from? (that I now generally recover from in a day due to the BCAAs)

Some weeks ago I did a few light things in the morning, nothing strenuous, and was all set to not crash the next day. But that night I watched a lecture on a DVD (by Nicholas Gonzales about pancreatic enzymes and cancer) - it was extremely interesting but the lecture itself was close to 2 hours straight with no break, I took notes and the whole thing took closer to 3 hours as I would replay parts and so on, and it took a great deal of mental concentration and work. I'm very glad I watched it, but the next morning I was crashed - my usual PEM - I am sure brought on by the mental exertion.

This was unusual for me, but usually I don't spend that kind of mental effort on things. I do like to use my brain but that was like a mini-marathon for me. But my PEM symptoms were identical to those brought on by physical exertion.

So I was just wondering if your PEM symptoms from mental exertion are the same as those others talk about from physical exertion, and, if so, the BCAAs and perhaps other supplements you write about above might help you with your PEM.
 

heapsreal

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Crashes i will add a big dose of b12 injection 5 to 10mg. Also use a stronger sleep med for a few days. The rest of what i use is geared towards viruses and immune system.

Increase my antiviral dose, ad some lysine couple of grams twice a day. Zantac for a few days can help increase t cell response to viruses like varicella. Also now use cycloferon (5 injection course every second day) when i crash which is used for viral and bacterial infections by increasing interferon which increases nk function. I find it also has an anti inflammatory effect which works quite quickly.

I feel the trick to making these crash type treatments work is to not use them all the time, as tolerance seems to build. But a short hard jab can put things in their place.

As i wrote above, its geared towards immune/infection type crash, not mitochondrial crashes. A combo though would be interesting .
 

heapsreal

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@Hip have you tried hmb? Its suppose to be an anticatabolic supplement, probably go well with bcaa.

I used it previously which helped with general exercise recovery ie stiffness and soreness. Just started it again recently and seems to be helping the same way. Not sure it would work in a crash treatment but maybe more beneficial to reduce pem and crashes as it can reduce catabolic states from them?
 

Hip

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What is your PEM from mental exertion like? Do you get the same bone deep exhaustion and aches and lactic acid buildup etc that can take days to recover from? (that I now generally recover from in a day due to the BCAAs)

No, I don't really get physical symptoms from mental exertion, only cognitive and neuropsychological symptoms.

For me mental exertion causes cognitive and neuropsychological symptoms such as mental fatigue (which can be a profound fatigue of mind that reaches to the depths of your soul), increased brain fog, increased emotional frailty, and perhaps the worst one of all, a kind of disintegration of self (I find social activity tends to scatter my mind in all directions, and it then takes a day or two of quietness and solitude to return back to yourself, to piece your mind back together, so that you feel yourself again). I've heard other ME/CFS patients describe similar things.

As a result, I tend to only go out socializing once a week, and even just for two hours. If I keep it to just 2 hours, then the next day the mental PEM won't be too bad. So it really limits my social life.

But in my case, mental exertion like socializing does not seem to trigger any physical symptoms of PEM — well, maybe my body and limbs will feel a bit more tired and heavy, but nothing much more than that. No physical exhaustion of the limbs.

I don't suffer from mental over-exertion or PEM when I am online and reading and writing on these forums, or reading articles online. That I find calming and relaxing (of course, if I have a bad brain fog day, I won't be able to do much, but nevertheless, it is relaxing). But the excitement of face-to-face socializing really whacks me for the next day or two. As mentioned earlier, I think it is the significant brain arousal that you likely get from the excitement of social activity that probably causes my mental PEM.

Unfortunately I have not found much that reduces this mental PEM, though some supplements help a bit.
 

Dechi

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I've said it before, but for those who didn't read it (most people, lol). Since I started taking nimotop, or rather when I had increased to 30 mg twice a day (I had to slowly increase over a period of 2 months because of side effects), I stopped having PEM. I have a special workout that took me 1 year to perfect, that I do at the gym, and I can manage it. It's only 3 minutes of exercise, but still, I'm lifting weights and building muscle. I can walk no problem. I dont have more energy and the muscle weakness is just as bad, and so is my sleep. In fact everything is pretty muche the same but PEMs are gone. Which is A LOT.

3 weeks ago I had to sop Nimotop to do a stress echo which had me wayyyy over my capacity and I crashed. It took 10-12 days before I went back to about 80% of my baseline. This is proof of how well nimotop works. This summer I managed to bike for periods ranging from 20-45 minutes while I was on it and I was fine.

I think people don't give enough credit to this drug. And most of those who try it want it to work really fast and they start off on high doses and get too many side effects and quit. I think if people tookt their time to slowly increase the dosage and tried it at least 3 months, they would have success more often. Sometimes it works on cognitive problems, also.
 

Hip

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Since I started taking nimotop, or rather when I had increased to 30 mg twice a day (I had to slowly increase over a period of 2 months because of side effects), I stopped having PEM.

Interesting. Can you do any amount of exercise without getting PEM when taking nimodipine, or is 3 minutes of exercise about the maximum? Have you created a thread about the anti-PEM effects of nimodipine that you observed, by the way?
 
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Hip

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Not sure if it has been debunked or not but back then everyone believed creatine supplementation needed a loadup period of higher intake, a single dose does not work.

That's interesting. I did a bit of Googling, and found this article which says: "Unlike monohydrate, creatine hydrochloride does not require a loading phase". So that's another advantage of the creatine hydrochloride form.



Co-enzyme Q10
Decreases my PEM if taken the night before.

Have you tried the 1200 mg x 2 megadose "PEM Killer" protocol, which was reported to kill off within 24 hours a period of PEM that would have normally lasted 10 to 14 days?
 
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Dechi

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Interesting. Can you do any amount of exercise without getting PEM when taking nimodipine, or is 3 minutes of exercise about the maximum? Have you created a thread about the anti-PEM effects of nimodipine that you observed, by the way?

@Hip At the gym, I do strength training for 3 minutes over a 45 minute period. No problem. I can also bike (outside) for periods ranging from 20-60 minutes at the speed of 14-20 km/hr depending on how I am that day. I can go to the gym 2-3 times a week, the same for the bike in the summer. I am not working though but I can manage daily living and activities.

I have talked about nimotop in some of my posts, but haven't opened a specific thread about It's effects on PEM. You think I should ?
 

Hip

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I have talked about nimotop in some of my posts, but haven't opened a specific thread about It's effects on PEM. You think I should ?

I certainly think it would be worthwhile, if you have achieved these major benefits with nimodipine. Most people I think probably only read a fraction of the threads on PR (I know I only have the brain power to look at around 5% or 10% of threads), so a new thread placed in the PEM sub-forum with a good self-explanatory title will likely catch much more attention. You could for example title your thread as "Nimodipine Has Allowed me to Ride my Bicycle for 30 to 60 Minutes Without Getting PEM." Like newspaper headlines, I think people look out for thread titles to see if there is anything of interest for them.

If you start a thread, the info you gave about nimodipine would be invaluable — namely this info:
And most of those who try it want it to work really fast and they start off on high doses and get too many side effects and quit. I think if people tookt their time to slowly increase the dosage and tried it at least 3 months, they would have success more often.

You might also like to detail how much exercise you were capable of before taking nimodipine, so that people can see how much improvement that nimodipine has made in raising your PEM threshold.


I tried nimodipine myself some time ago: took 30 mg for 3 days in a row, did not notice much, so stopped. Then tried it again once or twice for a similar length of time, but again, this drug did not seem to do much for me. But from what you are saying, you may need to take this drug for a few months before the benefits manifest; and you may need to increase the dose slowly in order to avoid side effects. That's very important info to include.

In my case, because brain fog, fatigue, and PEM from mental exertion are my main ME/CFS problems, I am interested in anything that might help these. Coincidently, I was revisiting nimodipine just recently, reading this article on nimodipine, which says it can improve mental clarity. I was also reading a bit of your thread of nimodipine (but somehow I missed the bits where you say nimodipine can significantly raise the PEM threshold).
 

Thinktank

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Have you tried the 1200 mg x 2 megadose "PEM Killer" protocol, which was reported to kill off within 24 hours a period of PEM that would have normally lasted 10 to 14 days?

Im not sure which protocol you're refering to. Do you have a link?
1200mg sounds like a large dose, i already feel benefits from 100mg. I wonder what might happen if i take a megadose.
 

hamsterman

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Just wanted to add one to the list. Hydrocortisone. (oral of course) I've now tested it 4 times... and it worked flawlessly each time, and may be a better alternative than prednisone, especially for those who cannot tolerate it, although its pricier.

I tested it with 80mgs (equiv. to 20 mgs prednisone), and used it 30 minutes prior to 4 different situations which always cause PEM 1) Doctors visit, 2) engaging chat with friend 3) cardio workout 4) another chat with a different friend. Each time, no PEM.

Just as with Prednisone, its useless if taken after the exertion, it does nothing if you are already experiencing PEM, is not meant to be taken daily, and may only work for CFS/ME triggered by Autoimmune/Autoinflammatory issues https://www.healthrising.org/blog/2017/07/15/immune-subsets-chronic-fatigue-syndrome-younger. But unlike prednisone, it doesnt stay in the system for very long, so after a couple hours or so, it is no longer active. But this can be an advantage, since it can be used more strategically... and more often.... potentially multiple times per week, without having any long-term negative effects. So, this really opens up opportunities. Also, from what I've read, it becomes active quicker than Prednisone, since it doesnt have to be metabolized by the liver, so it can be more useful if a sudden unforeseen situation occurs. (which is why I now carry an emergency dose with me)

Also, at lower doses, hydrocortisone does NOT act as an immuno-suppresnt/anti-inflamatory.. So those who take 5-10mgs for hormone replacement won't have this PEM shielding.

Just as a side note, I've been using Prednisone once a week for about a year, and I've found its absolutely impossible to induce PEM while Im on these corticosteroids. I've really taken this to the limit.... doing crazy cardio... things that would normally cause severe multi-week PEM... and each time... nothing. I've also accidentally done a 'double-blind' test, when I accidentally took the wrong medication, and had severe PEM afterwards.
 

Hip

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NOTE: in the above post, @hamsterman told me he was actually using prednisolone and not prednisone as he stated in the quote above. The former takes effect faster.




Just wanted to add one to the list. Hydrocortisone. (oral of course) I've now tested it 4 times... and it worked flawlessly each time, and may be a better alternative than prednisone, especially for those who cannot tolerate it, although its pricier.

Thanks for posting your findings, I have now added hydrocortisone to the list of "PEM Busters" in the first post of this thread.



Just as a side note, I've been using Prednisone once a week for about a year, and I've found its absolutely impossible to induce PEM while Im on these corticosteroids. I've really taken this to the limit.... doing crazy cardio... things that would normally cause severe multi-week PEM... and each time... nothing. I've also accidentally done a 'double-blind' test, when I accidentally took the wrong medication, and had severe PEM afterwards.

That's fascinating that this drug can be so protective of PEM (but only when taken before the exertion occurs).

It seems from your experience that prednisone works for both for physical-exertion induced PEM, and mental exertion-induced PEM? Have you tried hydrocortisone to see if that also works to prevent PEM from physical exertion?

It looks like you may have discovered a way for ME/CFS patients to engage in a regular exercise program without feeling any ill effects after the exercise.


Can I ask what level of severity of ME/CFS you have on the ME/CFS scale of mild, moderate and severe?
 
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drob31

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Anything that increases dopamine for me seems to help, such as B6 + Sam-E combo. Tyrosine seems to really help also, but at some point I have to cycle off or I crash from it, or it could just be me pushing myself too hard from increased energy.

Also controlling blood sugar and cortisol by eating smaller meals and taking Vitamin C + Alpha Lipoic Acid, helps. Not doing this causes dysglycemia "crash" symptoms.
 

hamsterman

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Thanks for posting your findings, I have now added hydrocortisone to the list of "PEM Busters" in the first post of this thread.





That's fascinating that this drug can be so protective of PEM (but only when taken before the exertion occurs).

It seems from your experience that prednisone works for both for physical-exertion induced PEM, and mental exertion-induced PEM? Have you tried hydrocortisone to see if that also works to prevent PEM from physical exertion?

It looks like you may have discovered a way for ME/CFS patients to engage in a regular exercise program without feeling any ill effects after the exercise.


Can I ask what level of severity of ME/CFS you have on the ME/CFS scale of mild, moderate and severe?

I will probably post a detailed analysis of everything shortly. I wanted to wait till I had at least a year of testing before going into the details. I also wanted to wait until I had results from a very comprehensive physical/bloodwork. Those results just came back, and everything was better... across the board. My doctor was actually kinda shocked. He also tested for things like glucose levels that can be elevated due to long-term use of corticosteroids. Everything was good. I just want to be careful here... because I am very aware that long-term corticosteroid use can be dangerous.

On the ME/CFS scale, I was at about a 30, now I'm about 35, possibly a bit higher. While Im on Prednisone, Im basically at 100. I basically pile-on all my social activities onto one day of the week now.

I still lie down pretty much all day from Monday-Saturday, and I monitor my HR carefully. Also, I no longer have POTS. Its completely gone. I can now stand for long periods of time... and assuming I don't do anything with my hands... I can keep my HR below my AT (Anaerobic threshold)

I am 99% sure that the hydrocortisone works for all forms of physical exertion. I did about 15 minutes of stair-climbing exercises, and the next day.... nothing. But I didnt take it to the extreme limit like I do for Prednisone. But I will do that shortly.
 
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