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

[BrightCandle]

I found a little bit of pain relief using CBD oil but it wasn't a dramatic effect. I felt less mentally sharp using it. That feeling when you have covered up a headache with pain killers but clearly the brain is still unhappy it just doesn't hurt as much anymore, well it makes me feel like that.

 

[hopeforaday22]

What about black seed oil? Immune modulating...

 

[stefanosstef]

@stefanosstef
How interesting that it is very easy for you to build muscle. And that you have this disease. Did you have this before you got ME? Did you ever get a muscle biopsy or do lactic acid threshold measurements?

Yes, I've always been like that.It increased those last years which coincided with worsening of CFS but I don't think they are relevant.It's probably hormone/testosterone thing.I haven't done this test but I know that I benefit very much from baking soda before working out.
Also it's strange that I have high CK always.With (extremely) sedetary life it is on upper limits or slightly above and when I am working out it's more than it should.

 

[MartinK]

Hi all PEM busters scientists, I did a test with corticosteroids - methylprednisolone (Medrol).
First time on 16 mg I had a some good improvement, the pain, the feeling of inflammation and a bit of fatigue disappeared, but I can't talk about a short remission like @Wishful .

Second time 20 mg of Medrol did nothing for me. I did some more tests with 20 mg before activity, but no results.

From what comes to my mind by ordinary thinking, I think when corticosteroids not work for patient = no serious inflammation/autoimmune in body. But maybe it can not be summarized like that...
I judge because IMD Berlin, to my great surprise, they did not find any inflammatory problems that many CFS patients have...
Instead, in my cause it looks like a very exhausted immunity due to Lyme = another type of inflammation due to chronically activated immunity and infections = corticosteroids not solve this = my PEM doesn't solve it.

These are my assumptions and estimates...

But what I found what works for my PEM is L-Carnitine Fumarate 2 x 500 mg/day. I'm trying to explore it more these weeks!

Martin

 

[hamsterman]

Hi all PEM busters scientists, I did a test with corticosteroids - methylprednisolone (Medrol).
First time on 16 mg I had a some good improvement, the pain, the feeling of inflammation and a bit of fatigue disappeared, but I can't talk about a short remission like @Wishful .

Second time 20 mg of Medrol did nothing for me. I did some more tests with 20 mg before activity, but no results.

From what comes to my mind by ordinary thinking, I think when corticosteroids not work for patient = no serious inflammation/autoimmune in body. But maybe it can not be summarized like that...
I judge because IMD Berlin, to my great surprise, they did not find any inflammatory problems that many CFS patients have...
Instead, in my cause it looks like a very exhausted immunity due to Lyme = another type of inflammation due to chronically activated immunity and infections = corticosteroids not solve this = my PEM doesn't solve it.

These are my assumptions and estimates...

But what I found what works for my PEM is L-Carnitine Fumarate 2 x 500 mg/day. I'm trying to explore it more these weeks!

Martin

As far as getting remission from CFS using corticosteroids, that would probably be uncommon, and would most likely be because someone's fatigue was entirely from an active long-term autoimmune disease that went into remission from the corticosteroids.

One thing to remember is that if you already have PEM, corticosteroids do not help at all. This also includes 'rolling PEM'. You really have to be at your 'base' level, and experiencing no payback when taking them.

But you may be right that corticosteroids are only effective for PEM-shielding if you have auto-immune triggered CFS/ME and not post-infection CFS/ME. But we don't know for sure.

 

[Pyrrhus]

Hi all PEM busters scientists, I did a test with corticosteroids - methylprednisolone (Medrol).
First time on 16 mg I had a some good improvement, the pain, the feeling of inflammation and a bit of fatigue disappeared, but I can't talk about a short remission like @Wishful .

Second time 20 mg of Medrol did nothing for me. I did some more tests with 20 mg before activity, but no results.

If you feel like sharing your experience with corticosteroids, there is a thread where different people record their experiences:
https://forums.phoenixrising.me/thr...hort-term-but-may-not-in-the-long-term.80492/

(I'm trying to collect different people's anecdotes in a single thread.)

Many thanks.

 

[HABS93]

As a personal experience and years of being a active stoner. This worked when I wasn't sick. Weed makes my neurological symptoms 10x worse. I had to keep smoking to eventually get some sort of enjoyment. Even now it does not help my PEM. It actutt makes the mental one way worse. Brain fog problems and weed is a bad combo.
If it helps you eat and sleep though then that perspective is why I still smoke. Physically when in high though I can't go do something because my heart sky rockets and I feel weak.

 

[junkcrap50]

I did 3.5 years of cryotherapy. After those first three months, we built our own cryotherapy machine at home. Those big tanks of liquid nitrogen were something to arrange.

Lol, how the heck did you build your own DIY cryotherapy machine at home? I'd be interested to hear about it, how the machines actually work mechanically, and see any pictures.

 

[Hopeful2021]

Lol, how the heck did you build your own DIY cryotherapy machine at home? I'd be interested to hear about it, how the machines actually work mechanically, and see any pictures.

Because it's with a gas that one must be extremely careful around, I'm sorry. I won't be able to share that/those with you.

 

[Hopeful2021]

Because it's with a gas that one must be extremely careful around, I'm sorry. I won't be able to share that/those with you.

Delivery or transport of the tanks that weigh a lot and are pressurized is a tough deal too. Getting liquid nitrogen is more than half if the equation. My good friends who are owners of cryo studios also don't get to see. So please don't be personally put off. I do hope this extra bit of help makes my no okay.

 

[bensmith]

should we just keep trying these every day if we are crashing or one time and done? I could do baking soda everyday, just wanted to check. also ordered some bac.

@Hip ah, mine is mental as well. did any busters help?

 

[Learner1]

should we just keep trying these every day if we are crashing or one time and done? I could do baking soda everyday, just wanted to check. also ordered some bac.

@Hip ah, mine is mental as well. did any busters help?

According to Healthline, Long-term and overuse of baking soda can increase your risk for: hypokalemia, or potassium blood deficiency. hypochloremia, or chloride blood deficiency. hypernatremia, or rise in sodium levels.

It might be prudent to figure out what problem it is you're trying to solve, and then use an appropriate solution.

My amino acid panels showed that I was low in isolation and leucine which gives merit to using branch chain amino acids, BCAAs to reverse PEM. My test results also showed a tendency towards low folate, B12, and glutathione. The B vitamins are precursors to glutathione, And I was also short of vitamin C which is needed for glutathione recycling. So, due to all these indicators, it seems that exercise increases my oxidative stress. Taking Setria glutathione was therefore helpful in avoiding or reversing PEM.

Glutathione is just one antioxidant, I also found that increasing A, C, E, and alpha lipoic acid markedly increased my energy and have reduced my experience of PEM altogether.

All of this tracks with what the various metabolomics researchers have found, that patients tend to be short of B vitamins, antioxidants, and amino acids.

I have not heard of a deficiency of baking soda, but I suppose if you're biochemistry has particular characteristics, that it may indeed be helpful.

I take a comprehensive nutrient supplement program daily which includes the above nutrients. Actually I was able to drop the BCAAs because I became replete in them and no longer need them. And then if I do feel PEM, which for me is both mental and physical, I take the glutathione, the other antioxidants, and I can go back to the BCAAs which work to help the mitochondria.

It's not what someone else does that's important, though. It's getting adequate testing to understand your biochemistry and your idiosyncrasies and helping your body become normal again, because what someone else is doing could be exactly the wrong thing for you.

 

[Hip]

should we just keep trying these every day if we are crashing or one time and done?

PEM shielders can be taken before you are about to engage in some activity you know will normally cause PEM, and PEM relievers can be taken once the PEM has arrived, in order to try to mitigate the PEM.

If you are engaging every day in some activity that normally causes PEM, then you could consider taking PEM busters each day. But you would first want to experiment to figure out which PEM busters work for you (if any).

I could do baking soda everyday, just wanted to check.

Baking soda is very alkalizing, and people sometimes use baking soda instead of doing an alkalizing diet. Even just a quarter teaspoon daily it pretty alkalizing. It's possible you might benefit from alkalizing; in my case, I find alkalizing either via an alkalizing diet or via baking soda makes me quite lightheaded, so I've never found it useful.

Probably the most powerful PEM buster in the list is the drug Mestinon (pyridostigmine): some people have found taking this drug daily has eliminated their PEM entirely. But this is a prescription drug.

Others worth trying include BCAAs and high-dose Q10 (you can buy bulk Q10 powder very cheaply on AliExpress — see this Google search).

@Hip ah, mine is mental as well. did any busters help?

I have not so far found anything that works well to reduce the PEM I get from social activity. The PEM I get for a day or two after social activity is not too bad: just mainly an increased brain fog and mental numbness that makes it hard to do anything productive and a little more fatigue.

 

[bensmith]

thanks guys.

 

[Learner1]

I found the same substances are effective in both avoiding PEM and resolving it once I have it. They are effective for both brain fog as well as physical symptoms.

Mestinon increases acetylcholine, which helps POTS. It doesn't do anything for energy production or oxidative stress. I took it and it did help with dizziness and ability to exercise, but the intestinal side effects were extremely unpleasant. I could no longer get it compounded and it contains major allergens, so I had to switch to a supplement, Huperzine A, which has the same benefits.

I take CoQ10 as a precaution, but I always test high normal in it, which is likely why it does nothing for PEM.

Buying bulk powders from China is risky - could be toxins/heavy metals in it. Wise to have a lab analysis before ingesting it and making problems worse.

 

[bensmith]

@Learner1 I orederd some off amazon. i would like to do some labs, but bed bound atm. desperate to try and break this pem cycle. can't seem to get out and get a bit worse each day.

i know what you mean about concerns about making things worse. yersteday i drank a meal replaceent and it made my spine hurt. was suprised. i am cautius, but like i said depserate.

 

[Learner1]

I would very much recommend looking into all the metabolomics studies and looking at what they found to be off in ME/CFS patients.

We seem to go through amino acids more than a regular people, so being on a higher protein diet is wise. many of us have issues with cell and mitochondrial membranes - they get damaged by infections and through peroxynitrites caused by oxidative and nitrosative stress, so replenishing the membranes with lipids is a good long-term strategy. As well as reducing the oxidative stress. I'm attaching a couple of scientific papers discussing these strategies.

I wouldn't presume to guess what caused your spine pain. Could be something about your bones, could be something to do with your nerves, could be toxicity from mold mycotoxins, heavy metals, or chemicals. If it's toxicity, then there are a number of things that you could be taking that could start mobilizing toxins and make you feel worse, even though it's what you ideally need to be doing in this case, this kind of activity needs to be supported with nutrients so you're not depleting things you need in your body.

From everything I've read, looking at patients labs, and my own experiments, I believe a lot of PEM is related to depletion of nutrients. This is beyond the fatigue that's caused by infections and other cell dangers.

If you really want to get better, I would highly recommend a comprehensive test like a Genova diagnostics NutrEval test, which is both blood and urine. It can be done at home, with a mobile phlebotomist taking and processing your blood. Genova has a number of similar tests, depending on where you live and your needs, one might be better than the other. You might contact them to determine how best to get tested. Because without good data all you're doing is guessing, which can lead to a prolonged illness.

Best wishes...

 

[bensmith]

wow thanks a lot very good adivec and thanks for the resuorces.

 

[Learner1]

You're welcome...

 

[bensmith]

CQ10 react anybodies histamines/mast cells?