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

Rvanson

Senior Member
Messages
312
Location
USA
It's worth noting that patients in that study were on a plethora of drugs: "(statins [95% of participants], angiotensin converting enzyme inhibitors, angiotensin II receptor blockers, anti-platelet, anti-coagulation, diabetes medications, calcium channel blockers, diuretics, anti-anginal, and nonsteroidal anti-inflammatory drugs—NSAIDs)" -- many of which can influence mitochondrial function -- especially statins -- which we know is a problem in ME/CFS. Also, the 49% of the placebo group were on beta blockers, some of which have also been noted to mess w/mitochondrial function, compared to only 33% in the l-carnitine group.

It's an interesting study, but it would be nice to see one done without so many confounding factors.

Statins make me sick, along with diarrhea. Went through a battle with a Kaiser doctor back in 2006 over her wanting me to imbibe in that garbage. The quacks hand it out like candy, as if it doesn't have short or long term side effects. The late Dr. Dr. Duane Graveline , a Nasa doctor has a great read on statins at www.spacedoc.com.
 

Wishful

Senior Member
Messages
5,635
Location
Alberta
The quacks hand it out like candy,

The pharmaceutical marketing industry probably includes studies that show that statins prevent heart attacks by (mumble, mumble .5% "It's truly a livesaver!!!!). No one mentions that moderate walking daily prevents those same heart attacks by something like 80%. Hard to profit from convincing people to walk a bit though. :grumpy:
 

hapl808

Senior Member
Messages
2,000
No one mentions that moderate walking daily prevents those same heart attacks by something like 80%. Hard to profit from convincing people to walk a bit though. :grumpy:

You're clearly in the pocket of Big Walk. How dare you question the absolute and pure motives of pharma companies. You can listen on our next quarterly earnings call where we'll discuss how profits don't matter to us.
 

lenora

Senior Member
Messages
4,857
I think many of us forget a small thing called "genetics." I was a walker for years and years (b/c I happened to like the feeling), and was the same from early childhood. It did not prevent me from having high cholesterol, high BP, or a heart attack. Genetically, my biological family has a history of such things....my father died at 40 and his parents at young ages (both of them), so these things simply occur.

My diet is almost flawless as my husband has had two cardiac arrests. One tends to take things seriously when these occur. I'm not young anymore, and rather expect old age ills. To be honest, I'm surprised that I've lived this long. Although it hasn't always been a pleasure, it has been most meaningful. I help myself by not eating fast food, any greasy food and love the abundance of fresh food in the summer.

Right now I'm partially bedridden (osteoporosis and fractures), but am out on our back porch as much as possible. I don't know but hope I'll be walking again someday.

In the meantime, I still have great plans for our 2 mos. in Paris this winter.

Some drugs have been good for me in many ways. We can't and shouldn't discount them....and yes, side-effects are all part of the package. Many pass, though. I also take my vitamins and supplements, but I am aware that genetics rule everything. Yours, Lenora
 

Strawberry

Senior Member
Messages
2,079
Location
Seattle, WA USA
Following the studies for mice, it was observed that nephropathy can probably be caused by chronic D-Ribose supplementation or infusions:
- D-Ribose Induces Podocyte NLRP3 Inflammasome Activation and Glomerular Injury via AGEs/RAGE Pathway
- D-ribose induces nephropathy through RAGE-dependent NF-κB inflammation

It would interest me what the equivalent doses for humans would look like.

That is the reason I have avoided it, even though it gave me a boost. It’s sugar after all.

Thank you for that reminder.
 

hapl808

Senior Member
Messages
2,000
Occassion 1: Tagamet (cimetidine) 50 mg + Peak ATP (adenosine 5'-triphosphate disodium) 125 mg

Occassion 2: trimetazidine 35 mg + amiloride 10 mg + niacinamide 1000 mg

Occassion 3: creatine monohydrate 2 grams + hyaluronic acid 400 mg

Occassion 4: allicin 180 mg x 6 + breathing oxygen for 2 hours immediately after socializing

Occassion 5: vinpocetine 40 mg + progesterone cream 600 mg + CJC-1295 growth hormone stimulant

Occasion 6: rifaximin 200 mg

Just curious if you had a chance to revisit any of these? I've been taking allicin again recently for its GI benefits, but no improvement on other aspects of mental PEM.

(I do actually get really bad GI symptoms from mental trigger PEM - lately I've improved that a bit with daily cabbage juice, reuteri probiotics, allicin, oregano oil, fenugreek, etc).
 

Hip

Senior Member
Messages
17,785
Just curious if you had a chance to revisit any of these?

I can only really test them when I engage in social activity, as that's the main cognitive activity which triggers my PEM. But unfortunately, since getting COVID 4 months ago I am more tired, so my social activity is much reduced, because I am often too fatigued to visit friends.
 

hapl808

Senior Member
Messages
2,000
I have found listening to music on headphones seems to trigger consistent PEM for me, so it allows a more 'controlled' approach. Socializing even on the phone is variable, as is computer work - depends on how engaged I become and sometimes the crashes are awful.

Although I've only triggered a PEM crash from listening to music a few times, so obviously I'm not positive it's consistent or will work for anyone else.
 

BrightCandle

Senior Member
Messages
1,131
I can only really test them when I engage in social activity, as that's the main cognitive activity which triggers my PEM. But unfortunately, since getting COVID 4 months ago I am more tired, so my social activity is much reduced, because I am often too fatigued to visit friends.

I know that feeling, Covid messed me up and while things have improved its also 26 months later and I am still much worse than I was before.
 

BrightCandle

Senior Member
Messages
1,131
I have found listening to music on headphones seems to trigger consistent PEM for me, so it allows a more 'controlled' approach. Socializing even on the phone is variable, as is computer work - depends on how engaged I become and sometimes the crashes are awful.

Although I've only triggered a PEM crash from listening to music a few times, so obviously I'm not positive it's consistent or will work for anyone else.

Certain music is really grating/engaging and that definitely triggers me faster. A competitive computer game with twitch movements is another quick route to mental exhaustion for me.
 

Nord Wolf

The Northman
Messages
541
Location
New England
Corticosteroids don’t prevent PEM in my case, actually, they do the exact opposite and cause it.

I took a single 20 mg dose of prednisone before being driven to a park for an afternoon with my wife. The temps were in the mid 60s with a slight breeze and high barometric pressure. We sat in our lounge chairs and relaxed in the sun.

To my surprise the prednisone did the opposite of preventing PEM! I took prednisone at 1215 and my ANS readings prior were low and calm. Stress readings were only at 10 to 18. At about 1430 my ANS started rising, as did my resting heart rate. All I was doing was sitting down. By 1630 my ANS was solid redline, my resting heart rate was back up at 85, and my stress numbers were averaging 75. This lasted until around 0300 when everything began dropping back to normal readings under the influence of the beta-blocker metoprolol. However, the racing ANS for about 12 hours caused me to crash into PEM and my waking body battery was an all time low for wake-up at 43. I was pretty much comatose on the couch for two days and dragging ass the rest of the week.

Two days ago I had to go to a sports doctor. My shoulders had stiffened up and been in daily pain for 6 months and needed to be looked at. After clean X-rays the agreed on the “frozen shoulder” theory. The X-rays did show any bone, tendon, ligament, or cartilage damage, so arthritis was ruled out. The doc said even though it appeared to be “frozen shoulder," it was severe and very atypical case. He gave me two steroid injections, one in each shoulder. My vision was terrible that day and so I was in the whiteout phase of being able to see nothing by flat featureless light. The staff were guiding me all over the building. They did a decent enough job but I could tell they weren’t used to working with severely visually impaired clients.

The doctor told me the pain should start subsiding in three days time, but the stiffness might take a year to work itself out and there isn’t any real way to speed the process. The body needs to slowly breakdown the excess protective tissue surround each joint capsule and reabsorb it. That takes as much time as the body requires.

I received the injections about noon. By 1430 my ANS started skyrocketing, as did my resting heart rate. I was tired from the doc visit and was just resting and napping in a lounge chair outside when everything began rising. By 1800 the ANS was completely redlined at 100% The resting heart rate was back up to 100 to 110 BPM. Stress level numbers were leveling at 85 and heart rate variability clocked in at 10. The autonomic nervous system continued all night in a 100% redline state on the smartwatch charts. My heart rate while sleeping was averaging 90 to 95. I had zero registered REM. My body battery plummeted to 12, and my wake up battery hit an all time low for waking at 13%. That next day I was gutted in a deep post-exertional malaise crash. My ANS chart at 1100 was still a solid block of redline with zero let up. I had a bunch of elevated dysautonomia/PoTS/M.E. symptoms going on.

My ANS is still redlining and I have no idea how long it will last before the beta-blocker metoprolol kicks back in. The prednisone resolved in about 12 hours, but the redlining ANS has after the steroid injections had so far been going for 2 days now. I’m in bed struggling like it was mid winter dictating this because I still can’t see.

Steroids have become a new enemy as they obviously override the beta-blocker. And with the ANS being suppressed daily from the metoprolol, when that beta-blocker is removed or overridden by another drug, the ANS overreacts above and beyond its normal abnormalities.

Therefore, as I said, corticosteroids in my case do not prevent PEM, but do the absolute opposite.
 

lenora

Senior Member
Messages
4,857
Hi Nord.......I am glad that you checked in.

I agree that steroids are not for everyone. My experience was that I had to have them via IV, and I felt like Superwoman....then they finally wore off. I never knew that it was possible to feel so weak and that lasted for probably 2 wks. Still, sometimes we're in need of these things to prevent further damage (I had autoimmune encephalitis at the time). So no, I wouldn't have the shots. Glad you're making your way back to some state of living. Take care. Yours, Lenora
 
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Hip

Senior Member
Messages
17,785
To my surprise the prednisone did the opposite of preventing PEM! I took prednisone at 1215 and my ANS readings prior were low and calm. Stress readings were only at 10 to 18. At about 1430 my ANS started rising, as did my resting heart rate. All I was doing was sitting down. By 1630 my ANS was solid redline, my resting heart rate was back up at 85, and my stress numbers were averaging 75. This lasted until around 0300 when everything began dropping back to normal readings under the influence of the beta-blocker metoprolol. However, the racing ANS for about 12 hours caused me to crash into PEM and my waking body battery was an all time low for wake-up at 43. I was pretty much comatose on the couch for two days and dragging ass the rest of the week.

That's interesting. Thanks for posting this.

By ANS readings, are you referring to the autonomic nervous system, as measured by heart rate variability?

I just Googled, and apparently in some people, prednisone "can cause bradycardia (slowed heartbeats), tachycardia (rapid heartbeats), atrial fibrillation (irregular heartbeats), and palpitations".

I wonder if this is how prednisone triggered PEM, by raising your heart rate. I've made a note in the first post that corticosteroids may increase heart rate and potentially trigger PEM.


Two PEM buster with a high success rate (several people reporting they work for them) are the kitchen spice cumin, and the drug Mestinon.
 
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Emmarose47

Senior Member
Messages
2,056
Location
UK
That's interesting. Thanks for posting this.

By ANS readings, are you referring to the autonomic nervous system, as measured by heart rate variability?

I just Googled, and apparently in some people, prednisone "can cause bradycardia (slowed heartbeats), tachycardia (rapid heartbeats), atrial fibrillation (irregular heartbeats), and palpitations".

I wonder if this is how prednisone triggered PEM, by raising your heart rate. I've made a note in the first post that corticosteroids may increase heart rate and potentially trigger PEM.


Two PEM buster with a high success rate (several people reporting they work for them) are the kitchen spice cumin, and the drug Mestinon.
How much cumin to take hip?
 

Nord Wolf

The Northman
Messages
541
Location
New England
By ANS readings, are you referring to the autonomic nervous system, as measured by heart rate variability?
yes
I wonder if this is how prednisone triggered PEM, by raising your heart rate. I've made a note in the first post that corticosteroids may increase heart rate and potentially trigger PEM.
don't know but I'm still bed ridden from it and pretty miserable
Two PEM buster with a high success rate (several people reporting they work for them) are the kitchen spice cumin, and the drug Mestinon.
tired both in the past and neither worked