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

[BrightCandle]

why do you think it helps? what is the mechanism?

The body is relying on inefficient energy mechanisms instead of fatty oxidation due to the mitochondrial dysfunction and this produces a lot of excess Nitrogen. This forms into Ammonia and is pretty toxic to the body and when we crash this overwhelms the bodies ability to dispose of it in our urine and it poisons everything. The Krebs energy cycle is linked to the Urea cycle and this excess impedes the energy system further until its disposed of. So the mechanism is accelerating the disposal of the waste product which allows those energy systems to function again, removing some of the feedback cycle that impedes energy production via other mechanisms.

 

[Hip]

Sodium Benzoate as a reliever.

Have you verified this experimentally, and have observed that a PEM episode from a regular familiar exertion that you do (like walking to the shops) is noticeably shorted if you start taking sodium benzoate when the PEM hits?

 

[BrightCandle]

Have you verified this experimentally, and have observed that a PEM episode from a regular familiar exertion that you do (like walking to the shops) is noticeably shorted if you start taking sodium benzoate when the PEM hits?

I crashed some weeks back and so far such big crashes taking me to severe state take 6-20 weeks to recover from, I recovered back to baseline in 2 days using it. Initially when entering the protocol it was also part of the initial ontake and on its own relieved the headaches and symptoms on its own, so I have seen twice now that it acts to get me out of a PEM event. So yes.

 

[MartinK]

I thought Sodium Benzoate is harmful? It is removed from many foods... know some cause with Coca Cola.

 

[Hip]

I crashed some weeks back and so far such big crashes taking me to severe state take 6-20 weeks to recover from, I recovered back to baseline in 2 days using it.

That seems like an amazing result. Although I am not entirely sure that a crash which lasts for up to 20 weeks would be classed as PEM. That sounds more like a period where your ME/CFS got worse, which can happen as a result of too much exertion. A long-lasting major crash.

For most patients, PEM typically appears a day or two after an exertion, and then may typically last for several days, although it can last for a week or two in some patients.

Maybe sodium benzoate might be classed as an agent that helps recovery from a major crash.

What daily dose of sodium benzoate do you take in order to get these effects?

In a normal diet, up to 5 mg/kg of sodium benzoate is considered safe. Ref: here. So for a 75 kg person, that is a daily dose of 375 mg.

I thought Sodium Benzoate is harmful? It is removed from many foods... know some cause with Coca Cola.

Just found this:

Sodium Benzoate is used as a preservative to prevent food from molding. It helps keep our products shelf-stable for at least two years from the date of purchase and is used in concentrations of less than 0.5% by volume.

While sodium benzoate is considered safe, scientists have shown that negative side effects occur when it's mixed with ascorbic acid (vitamin C). Their studies indicate that it then turns into benzene, a known carcinogen that may cause cancer.

 

[frozenborderline]

You have noticed that benzodiazepines can reduce post-exertional malaise?

Would you say benzodiazepines work as a PEM shielder or a PEM reliever fashion? Or both?

Not only have I noticed it, ME/CFS doctors have noticed it. my doctor recently wrote to the hospital to up my dose for the 0purposes of lowering extra PEM from being in that stressful environment.

I think they can work as both but it's better to use a moderate or long lasting one and take it at least a bit before the activity you need to do.
Dont use xanax for this purpose. Ativan is still shorter lasting than many but if you look at the half life its decent and it seems to have some unique profile that helps people a lot. Clonazepam is good. I think valium can help w this but cause more sleepiness. If it's too short for the thing people have to do then they can redose

 

[frozenborderline]

Hey, for me is benzo (alprazolam) definitely PEM reliever.
My normal PEM = 6 days
PEM with alprazolam = 2 days

But I try to take low dose as possible. Maximum what I tried was 1mg. But 0,5mg works well for me.

Why not switch to a longer lasting benzo. Alprazolam is the shortest one. Longer lasting ones will have more of the benefits stretched over longer periods of time without abruptly wearing off

 

[frozenborderline]

I don't think POTS on its own can cause PEM, but I am not entirely sure. We'd have to check out some POTS websites. Interestingly, pure POTS patients can actually better with lots of exercise, whereas exercise often makes ME/CFS worse in severe patients, and of course triggers PEM.

Well, in any case, low blood volume is part and parcel of ME/CFS, and also is why david bell compares ME/CFS to "slow sepsis ". And in my experience it's one of the only things to help ward off crashes if one has to do activity, saline that is. Jen brea has said as much I'm pretty sure.

I think a type of perfusion issue and dysautonomia is related closely to PEM bht maybe there are different causes of pots and not every pots patient has PEM, you are right. But if you look at david bell's and Cheney's and systroms work theres a major connection, btwn a type of problem with heart functioning, blood flow, and oxygen/work capacity of the body, and its fixed temporarily by increasing blood volume dramatically. One of the things I wish they did a trial on was blood infusions. David bell said for one of his patients they worked way better than saline and put her into remission for six months or so at a time.

 

[frozenborderline]

ut for those with male pattern hair loss (androgenetic alopecia), which is caused by elevated DHT, supplements like saw palmetto which can lower DHT do help reduce hair loss, so I imagine supplements like creating which raise DHT might worsen hair loss

Damn so does saw palmetto really work , bc I know in the male pattern baldness forums people are really desperate and I hadn't seen anything major they were excited about yet but I only browsed for a few times.

 

[dannybex]

That seems like an amazing result. Although I am not entirely sure that a crash which lasts for up to 20 weeks would be classed as PEM. That sounds more like a period where your ME/CFS got worse, which can happen as a result of too much exertion. A long-lasting major crash.

For most patients, PEM typically appears a day or two after an exertion, and then may typically last for several days, although it can last for a week or two in some patients.

Maybe sodium benzoate might be classed as an agent that helps recovery from a major crash.

What daily dose of sodium benzoate do you take in order to get these effects?

In a normal diet, up to 5 mg/kg of sodium benzoate is considered safe. Ref: here. So for a 75 kg person, that is a daily dose of 375 mg.





Just found this:

Just to note: Benzoate and/or benzoic acid isn't benign. It lowers glycine, because glycine is needed to detoxify it. And glycine helps with many, many things, including sleep.

Ironically, glycine also lowers ammonia.

 

[MartinK]

@frozenborderline what benzos you think? I waiting now for Lorazepam. Hope will arrive next week. Also see on Clonazepam. But all this is very hard to get for me.

And anyone have some point to this? Thanks!

I thought Sodium Benzoate is harmful? It is removed from many foods... know some cause with Coca Cola.

 

[Hip]

Well, in any case, low blood volume is part and parcel of ME/CFS, and also is why david bell compares ME/CFS to "slow sepsis ". And in my experience it's one of the only things to help ward off crashes if one has to do activity, saline that is. Jen brea has said as much I'm pretty sure.

Very interesting.

So then the Markov CBIS theory of ME/CFS, which posits bacterial toxins leaking into the bloodstream from the kidneys cause ME/CFS (which is similar to Dr David Bell's slow-sepsis theory of ME/CFS), could also explain the low blood volume found in ME/CFS patients.

EDIT: A Google search shows that low blood pressure is found in sepsis, but I did not see anything about low blood volume.

 

[frozenborderline]

EDIT: A Google search shows that low blood pressure is found in sepsis, but I did not see anything about low blood volume

maybe I'm confusing sepsis with hypovolemic shock which it often turns into. Regardless sepsis is often treated with lots of fluids, sometimes even hypertonic fluids , which has made me wonder if hypertonic saline could be useful in ME/CFS or pots, however risky it may be. It seems like sepsis often leads to low blood volume and pressure and then loss of perfusion to organs ... also high lactate. All things present in ME/CFS to some extent if less extremely

 

[frozenborderline]

@frozenborderline what benzos you think? I waiting now for Lorazepam. Hope will arrive next week. Also see on Clonazepam. But all this is very hard to get for me.

And anyone have some point to this? Thanks!

Anything but alprazolam. I'm not a doctor tho, these should be used once a week max, in emergency situations of PEM, TALK TO YOUR DOC ABOUT IT OR BE DISCIPLINED. You will lose the benefits if you overuse it
. Lorazepam and clonazepam are good, yeah. Just avoid alprazolam it's too short lasting

 

[frozenborderline]

@frozenborderline what benzos you think? I waiting now for Lorazepam. Hope will arrive next week. Also see on Clonazepam. But all this is very hard to get for me.

And anyone have some point to this? Thanks!

I dont find them addictive but the relief itself can be "addictive " if they work, however you have to he like whitney and only use once in awhile. He does once a month. I would ideally do once a week or once every two weeks but still ... not daily. Use for when u have to go out or interact with someone or something. See if it works.

 

[frozenborderline]

@Hip I've also been finding that imidazenil has a lot of promise and doesnt just look good on paper. Does some of the things it says it does

 

[SpiralOut]

I'd like to mention piracetam.

It's tempting for me to write "I'd like to strongly recommend piracetam" but it should be noted that:
- The nootropics market is unregulated
- Some folks have found the drug to 'poop out' after a while (when used for nootropic purposes)
- Since I take the stuff chronically, it's difficult for me to evaluate its ongoing efficacy

I will say though that as best I can tell, this ranks above any of the other things I take, including D-ribose, moderate-dose COQ10, moderate-dose creatine, ALCAR, and assorted other vitamins and minerals.
To put things in perspective, a 30 min walk or equivalent will certainly cause me to crash, and sans piracetam that's me done for the day. With piracetam, I'm actually somewhat restored after a few hours' rest.

 

[Hipsman]

A bit off topic, but are there Corticosteroids that cross Blood-Brain Barrier? Because if there is brain inflammation, it may be very helpful...

I assume just taking Corticosteroids as eye drops doesn't work, because to treat Temporal Arteritis they inject Corticosteroids into the eye, specifically: Triamcinolone intravitreal is injected into the eye to treat inflammation

(Temporal Arteritis is brain inflammation from what I understand)

 

[Learner1]

You have noticed that benzodiazepines can reduce post-exertional malaise?

Would you say benzodiazepines work as a PEM shielder or a PEM reliever fashion? Or both?

A small dose of lorazepam knocks me out cold for 4 hours. I wouldn't say it's a PEM buster. It's prescribed as a mast cell stabilizer with my IVIG infusions every 3 weeks. I sure wouldn't take it more often - It's addictive.

Reducing oxidative stress and replenishing BCAAs consistently works for PEM.

 

[frozenborderline]

A small dose of lorazepam knocks me out cold for 4 hours. I wouldn't say it's a PEM buster. It's prescribed as a mast cell stabilizer with my IVIG infusions every 3 weeks. I sure wouldn't take it more often - It's addictive.

Cheney and levine regularly prescribe it for PEM. (Well, Cheney used to, when he was alive ). Levine still does. wouldn't argue about it being dependence forming , and maybe it doesnt work for you, but it's been known to help PEM , energy envelopes, sound sensitivity, and fatiguability , which are all related.

Seems to help whitney's PEM.

I would guess the mechanism is simple, anything that lowers brain and spinal glutamate could help PEM. Includes NMDA antagonists

Honestly, the reason this list is so long isnt bc everything on it works really well it's probably bc theres a bigger variance in what works for people than we can pin down without more rigorous study.