doing better, wondering why...

[pamojja]

normal RDA levels of vitamin intake might suffice to prevent the worst deficiency diseases in most of the population

By the way, I started by weighing every bite I ate, and calculating how many minerals and vitamins I was getting. There were many gaps, not reaching even the low RDA. Therefore, I researched those foods, with the highest nutrient content, I was missing.

But gave up that approach soon again. There is only so much space in the stomach, and adding in unusual foods, in the end always some other nutrients became short of the RDA.

 

[Rufous McKinney]

Read that, got back up to take my one Vitamin C pill.

And my favorite, ascorbic acid. Gradually improved my walking-disability once above 6 g/d (Linus Pauling recommended as minimum for a therapeutic dose). Also, a for years persistent skin rush on my back disappeared. Works as good as any antihistamine in the rhinitis season for me. A cystitis of the bladder disappeared. And despite prediabetic blood-glucose readings, HbA1c stayed relatively low.

 

[Rufous McKinney]

, so i chalk it up to a messed up nervous system

25 mgs of Lyrica before bed helped calm down my over amped digestion.

 

[bad1080]

25 mgs of Lyrica before bed helped calm down my over amped digestion.

does pregabalin have the same habituation effect as gabapentin?

edit: not meant as in addiction potential but as in tolerance

edit2: found this:
"Pregabalin vs. gabapentin in the treatment of neuropathic pain: a comprehensive systematic review and meta-analysis of effectiveness and safety"

Although it might not be as noticeable as it is with opioids, the development of tolerance to gabapentinoids is still present. According to a previous study, some patient groups may continue to lose effectiveness over time (53).

https://pmc.ncbi.nlm.nih.gov/articles/PMC11747324/

 

[GreenEdge]

My vote is on the lithium and improved diet.

My vote is on the eggs. Egg yolk contains every essential nutrient in the active form our body wants.

A century ago, eggs were used in hospitals for liquid diets and to speed healing:

Diet Manual - Fitzsimons General Hospital (1941): EggNog in History, Health, and Hospitality
“… easily digestible, … free from irritating condiments and mechanical irritants. … Such diets should be given in small portions, 60-400 cc, depending on the nature of the case. The feedings should be repeated every two hours unless there are contraindications. At least six to eight feedings are required daily.”

IMHO the active ingredient in the eggnog recipe was the egg yolk (I'd discard the white: it can cause irritation).

BTW since the 2015 update to US Dietary Guidelines, cholesterol is no longer a nutrient of concern.

 

[Wayne]

Please let us know if you remain PEM-free after a month or more. I think it's important to know that some people (more than just me) can cure their PEM without curing the overall ME. If there are enough of us, they'll have to change the criteria. It also invalidates some theories, so researchers can more on to new ones.

Hi @Wishful -- I can't say I've "cured" my PEM, but I feel I've discovered how to "manage" it very effectively. I do this with a variety of approaches. Primarily through almost daily mHBOT, and almost daily coffee enemas to which I add 10 grams of sodium ascorbate, 4 drops of Methylene Blue, and a gram each of taurine, glycine, and Inositol.

I rarely expound on my ability to manage my PEM so well, as it's almost an article of faith within the ME/CFS community that if you don't have PEM (or are able to manage it), then you don't have ME/CFS. Which opens the door for a certain amount of cynicism and worse. Sometimes it's easier (and safer) to not share, even things that I think have a lot of potential to help people with ME/CFS.

 

[Wishful]

Sometimes it's easier (and safer) to not share, even things that I think have a lot of potential to help people with ME/CFS.

Thanks for sharing. I do think it's important that some people don't have some symptom while otherwise meeting the criteria for ME. Fully meeting the criteria is important for cohort selection, but the outliers might be important for theories (does the theory account for those outliers?).

If the criteria were absolutes, then by taking your management treatments, you'd be considered "not having ME" part of the time, so your remaining symptoms would be from some other non-ME disease. Doesn't make sense to me.

 

[bad1080]

My vote is on the lithium

i would have agreed until i saw this:

Findings In a randomized clinical trial including 52 participants, lithium aspartate, 10 to 15 mg/d, for 3 weeks provided no significant improvements to fatigue or cognitive dysfunction scores. A subsequent dose-finding study found open-label lithium aspartate, 40 to 45 mg/d, to be associated with numerically greater symptomatic benefit, particularly in 2 patients with serum lithium levels of 0.18 and 0.49 mEq/L, compared with 1 patient with a level of 0.10 mEq/L.

Meaning The findings of this trial suggest that lithium aspartate, 10 to 15 mg/d, is ineffective for neurologic post–COVID-19 condition fatigue and cognitive dysfunction; the effect of higher dosages needs to be assessed in another randomized clinical trial.

(emphasis added)
from: https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2824334

so now idk what to think but then again i don't have long covid and if you read the user reviews a lot of people feel better on it: https://iherb.com/pr/swanson-lithium-orotate-5-mg-60-veggie-capsules/116263

i did a physical stress test yesterday and even though my muscles are sore today i have no PEM. mental and emotional stress seem to still cause me problems though. i am still baffled by this whole development...

 

[GreenEdge]

i would have agreed until i saw this:

So if it's not the Lithium, could it be the eggs? In particular the egg yolk? It worked for me once.

i did a physical stress test yesterday and even though my muscles are sore today i have no PEM. mental and emotional stress seem to still cause me problems though. i am still baffled by this whole development...

Here's my theory:
Inflammation of the brain and spinal cord (Encephalomyelitis) describes this condition well, but what caused the inflammation? And what sustains it? Could it be an autoimmune disease? Triggered by any flu-like virus that gets into nerve cells (causes muscle pain)? Could the root cause of ME/CFS be neuro-inflammation?

Why does muscle recovery take so long?
Without healthy nerve cell function, muscle recovery is impaired because coordination, repair signaling, and adaptation depend heavily on the nervous system. See: detailed AI explanation

What causes PEM?
Muscle hasn't yet recovered sufficiently to allow life to continue as normal.

 

[bad1080]

could it be the eggs?

idk but if two small eggs per day could have such an effect i'd think somebody would've made the connection? surely more PwME than just you and me are eating eggs? you said you are aging in reverse from eating raw egg-yolks but what has it done for your me-cfs?

 

[Viala]

so now idk what to think but then again i don't have long covid and if you read the user reviews a lot of people feel better on it: https://iherb.com/pr/swanson-lithium-orotate-5-mg-60-veggie-capsules/116263

Aspartate and orotate may not work in the same way. I looked into lithium a while ago, there is a big difference between lithium carbonate and orotate, the former can cause a lot of side effects and is needed in much higher doses, and the latter is mostly safe and works well in smaller doses. I don't know about aspartate, it may work even more differently than these two forms. There is some research about lithium lowering inflammation in general.

 

[bad1080]

Aspartate and orotate may not work in the same way. I looked into lithium a while ago, there is a big difference between lithium carbonate and orotate, the former can cause a lot of side effects and is needed in much higher doses, and the latter is mostly safe and works well in smaller doses. I don't know about aspartate, it may work even more differently than these two forms. There is some research about lithium lowering inflammation in general.

interesting, i thought the main difference is how much elemental lithium is in each variant and after that it's the same thing.

edit: found this:

Lithium orotate is combined with orotic acid, which is believed to facilitate the efficient crossing of lithium through the blood-brain barrier.

from: https://lithiumorotate.org/lithium-orotate/lithium-orotate-vs-aspartate/

makes you wonder why they went with aspartate

 

[Viala]

idk but if two small eggs per day could have such an effect i'd think somebody would've made the connection? surely more PwME than just you and me are eating eggs? you said you are aging in reverse from eating raw egg-yolks but what has it done for your me-cfs?

Egss have a lot of choline and it definitely can make a substantial difference, maybe you respond to that since choline is important in methylation. It all depends on genetic type. There are stories on reddit about people who get depressed from eating eggs lol and some who respond to them very well.

 

[bad1080]

Egss have a lot of choline and it definitely can make a substantial difference, maybe you respond to that since choline is important in methylation. It all depends on genetic type. There are stories on reddit about people who get depressed from eating eggs lol and some who respond to them very well.

from the first 5 pages of search results i don't see a lot of reports about "eggs" on r/cfs (one with insomnia). granted it's not a great search term (chicken and egg problem, freezing eggs for fertilization and so on) but "yolks" only returns 5 results.

 

[Viala]

interesting, i thought the main difference is how much elemental lithium is in each variant and after that it's the same thing.

Big dose difference I think I've seen only with lithium, carbonate is prescription only so maybe that's why, it works differently.

from the first 5 pages of search results i don't see a lot of reports about "eggs" on r/cfs (one with insomnia). granted it's not a great search term (chicken and egg problem, freezing eggs for fertilization and so on) but "yolks" only returns 5 results.

I don't think you'll find it as some official me/cfs thing, I found it when I went into methylation rabbit hole. Some people here feel better on eggs and some worse, it depends on genes and SNPs, but improving methylation definitely can change energy levels.

 

[Wishful]

idk but if two small eggs per day could have such an effect i'd think somebody would've made the connection?

That's how ME is: something works really well for a few PWME, causes serious problems for a few PWME, and has no significant effect on the rest. Also, for those it does work for, it might only work under some conditions, and only work for a period of time.

For me, eggs have one significant effect: they reduce the chance of insomnia caused by exertion late in the day. No undesirable side effects. I consider them a natural multivitamin/mineral supplement too.

FWIW, there was a recent news item about how the cholesterol from eggs is actually beneficial rather than harmful. How long will the controversy continue? Probably longer than I'll live.

 

[GreenEdge]

idk but if two small eggs per day could have such an effect i'd think somebody would've made the connection? surely more PwME than just you and me are eating eggs? you said you are aging in reverse from eating raw egg-yolks but what has it done for your me-cfs?

I'm surprised by what I wrote back then - it must have been very beneficial. All I remember is, I stopped the experiment after 5 days because my shit became yellow and messy (like baby shit).

I'm now trying it again but this time with only 2 eggs (at a time) as one meal, and repeating for as many meals as required to control hunger. The result so far has been effortless weight loss.

BTW. Fat is my fuel. I eat no carbohydrates because carbohydrate is not essential, so fiber is not essential. Fiber is mostly cellulose, an indigestible carbohydrate that rots in your colon and makes you fart. So why eat it? Adding fiber to try to cure constipation just causes more irritation and inflammation (because its indigestible). Your body increases bowel movements to try to quickly get rid of the cause of the irritation.

On the other hand, meat leaves our stomach as a liquid that is mostly all completely absorbed in our small intestine. Speaking from experience, very little ends up in my colon to form a stool the size of a thumb or finger. Besides the small size stools, my poo is just fat and protein so it's always soft and easy to pass.

ATM (to use up supplies), I'm back to eating fatty lamb as my main meal.

And before you ask, to answer a ridiculous vegan myth:
No, meat does not rot in my colon, there's no carbohydrate in meat, so there's nothing to ferment.

 

[JES]

BTW. Fat is my fuel. I eat no carbohydrates because carbohydrate is not essential, so fiber is not essential. Fiber is just cellulose an indigestible carbohydrate that rots in your colon and makes fart. So why eat it? Adding fiber to try to cure constipation just causes more irritation and inflammation (because its indigestible). Your body increases bowel movements to try to quickly get rid of the cause of the irritation.

Well it does a little more than just "rot" in your colon in that it actually feeds the microbiome. I don't see why it would cause any irritation either, at least insoluble fiber because by definition, insoluble fiber is not absorbed, but adds more bulk to the stool, making it easier to pass, which is not a bad thing.

 

[Rufous McKinney]

BTW since the 2015 update to US Dietary Guidelines, cholesterol is no longer a nutrient of concern.

I had not heard that one. I never bought into that whole narrative. Not that I'm particularly brilliant, but because they never had any evidence in their war on cholesterol, which is what our cell membrane are comprised of. And I always ate the eggs, whole egg. All the parts which include the lecithin part.

But also, I read King Rat......thats a novel from 1962. It's quite good. WWII prisoners of war. King Rat had a chicken, which produced a single egg per day: which kept him alive.

 

[NameHere]

idk but if two small eggs per day could have such an effect i'd think somebody would've made the connection? surely more PwME than just you and me are eating eggs? you said you are aging in reverse from eating raw egg-yolks but what has it done for your me-cfs?

Its not the eggs; if eggs were a cure I'd have been cured years ago. I have been eating 2-4 eggs nearly daily for years and I've had fatigue and brain fog for years (cholesterol profile is good too).

Aspartate and orotate may not work in the same way. I looked into lithium a while ago, there is a big difference between lithium carbonate and orotate, the former can cause a lot of side effects and is needed in much higher doses, and the latter is mostly safe and works well in smaller doses. I don't know about aspartate, it may work even more differently than these two forms. There is some research about lithium lowering inflammation in general.

Yes, this. My vote is still on the lithium.