Supplements for energy, healing and virus kill

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I already am using LDN with success and based on research on the underlying cause of ME/CFS I think is a virus damaging the glucose energy metabolism, and I will pursue the following strategy:

To produce energy:


Urolithin A
= Regenerate mitochondria + t cell activation

Butyrate (SCAFA) + Inulin + Curcumin = Gut health, energy and HADAC inhibtion

Nicotinamide Riboside + Reservatrol + Honkinol = SIRT3 activation + Repair of DNA DAMAGE

B5 = Phantothenic acid = Converting food to energy

Pyruvate = im not sure yet


Brain healing (remyelination)

Ursolic Acid + Piperine (enhance uptake), Lions Mane, B12, Biotin, N-acetylglucosamine

Root cause = some virus. Maybe it is HPV and

AHCC 1,5 - 3 mg for 3 months to clear HPV

As you see this is crazy expensive.

Most important is the underscored and that makes it cheaper. A question concerning price is regarding Urolithin A. Do I have to buy Mitopure or is pomegranate supplements ok?

This research is based on the following insight https://www.healthrising.org/blog/2...gregor-metabolism-chronic-fatigue-glycolysis/ as well as personal ideas.

Feedback is nice


energi metabolisering.jpg
 

Wishful

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We all have our favourite theories, but I don't favour either the viral cause or the reduced ATP production ones. The evidence from trying to treat either of those hypothesized causes doesn't really support them. Yes, a few people claim successful treatment from anti-virals, but those may be special cases where the chronic immune activation from their infection keeps their ME going. The same might hold true for some bacterial or other microbial infections, so it doesn't seem to be a case of "ME is caused by a virus". Viral infections often trigger ME, but aren't necessarily sustaining it.

I haven't seen much evidence for impaired ATP production either. Yes, some people do show metabolic abnormalities, but others don't, so it's not an inherent part of all cases of ME. Also, many people here have tried various metabolic boosters, without finding any benefit. Whether a specific booster will work for you can only be answered by experimenting on yourself. My most effective treatments were complete surprises, and I still don't have a theory for how they worked.

Urolithin A = Regenerate mitochondria + t cell activation
It's maybe 50/50 whether boosting immune function will help or harm. T-cell activation made my symptoms worse, so boosters were a bad idea ... for me. For someone else, it might reduce chronic activation, and thus reduce symptoms. You won't know until you try.

So far, in my 20+ years of ME, I've had more success by accident (observing unexpected responses to things) than by treatments chosen by theories. Theories can give you some reason to decide to take Urolithin A instead of chocolate, but IMO, both have very tiny chances of helping. Chocolate is just yummier, so you might as well try that first. :yum: Also, my most effective treatments have been inexpensive, non-pharmaceuticals, and were already in my kitchen. The expensive prescription ones didn't work.

My experience is that present theories about ME are generally wrong, so don't get a loan from a loanshark to pay for an expensive anti-viral treatment just based on someone's theory. Plenty of people here who have tried those expensive treatments and found their money wasted.

Brain healing (remyelination)
I haven't heard any evidence that ME involves demyelination. The rapidity of temporary remissions might be evidence against it.
 
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Bro, to be honest. I am glad you have found something that works for you. Would you mind sharing that and what you think is the underlying cause? Personally, I disagree with you when it comes to testing out theories. Yes, you can be lucky something works, but thats not how i approach things.

There are research pointing to problems with energy production:

"We hypothesized that changes in serum amino acids may disclose specific defects in energy metabolism in ME/CFS. Analysis in 200 ME/CFS patients and 102 healthy individuals showed a specific reduction of amino acids that fuel oxidative metabolism via the TCA cycle, mainly in female ME/CFS patients."

https://insight.jci.org/articles/view/89376/version/1/pdf/render

"The results suggest that ME/CFS metabolism is dysregulated such that alternatives to glycolysis are more heavily utilised than in controls to provide the mitochondria with oxidisable substrates."

https://www.mdpi.com/1422-0067/22/4/2046

This was just a quick search.
 

Wishful

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I note that those papers use terms such as "hypothesized" and "suggests". I can't recall any paper showing definite abnormalities consistent for all PWME. A lot of the studies have problems, such as comparing results with healthy controls, rather than people with similar physically limited lifestyles, or they use poor criteria in selecting subjects. Some may even resort to outright fraud, manipulating the results to get more funding. They are not solidly supported theories to base treatments on.

but thats not how i approach things.
If you approach it as "I should try this based on this solid theory", you'll have to wait for a solid theory to arrive, because none have arrived yet. There is no credibly verified theory for ME yet. There's still no definite marker for ME, so we can't tell whether a success story was actually about ME. I think the theories so far are about as trustworthy as astrological predictions (meaning not at all).

What worked for me? Cumin (cuminum cyminum) blocked my PEM 100%, and eventually resulted in full remission of that symptom. T2 (3-5 diiodothyronine, although iodine worked just as well) effectively reduced my symptoms severity. That symptom/effect vanished when the PEM did. LDN effectively blocked my neuropathic pain for ~2 years, and then I didn't need it anymore. Sadly, the pains returned recently with my new sensitivity to dietary fibre, but LDN still seems to block that pain ... even though the prescription is nearly 5 years past expiry. I had short-term benefits from carnitine and consistent but barely noticeable benefits from some herbal compound (Fisetin, IIRC). I've had some sleep benefits from conjugated linoleic acids (ruminant fat, or evening primrose or safflower oil), but I don't know whether that's really ME related.

Aside from those, most of my improvements have come from noticing what foods I need to avoid. Those weren't from theories, just observations of how I felt. I still don't have any good theories for why those treatments worked (LDN is probably working by boosting endorphins), or why certain foods/nutrients make my ME worse.

I'm still waiting for a good theory for ME that is supported by strong evidence. My pretty-vague hypotheses for the root cause of ME involve some feedback loop involving glial cells, probably fairly localized in the brain (and thus hard to discover from blood or CSF samples). I believe that abnormal functions in small numbers of glial cells could explain most if not all of ME symptoms. Deeper (and much vaguer), I consider possibilities involving cell functions, membrane abnormalities, and neural mitochondria (slightly different DNA than the rest of the body) abnormalities.

I've had several temporary full remissions, with very rapid (less than an hour) switching from full ME state to full health (and sadly, rapidly back to full ME again). Thus, one of my tests for a theory is whether they can explain such rapid switching of state. To me that pretty much rules out microbial infections (or dysbiosis) and demyelination.

The effect of T2 was rapid (< 1 hr) and the effect lasted a very consistent 21 days (for about 2 years). That too seemed to be an abrupt switching of state, and the duration to me suggests that the surge in T2 boosted production of some cells or cell components that have a consistent lifespan. I know that t-cells have that sort of precise and consistent timing, but I don't know what other cells share that sort of mechanism. FWIW, the first few doses of iodine or T2 triggered temporary full remissions, lasting less than a full day.

Prednisone also triggered temporary remissions the first two trials, but then never worked again (all too common with ME treatments). Cumin did the same thing. Thus I also test new theories by "why would these three different chemicals trigger temporary remissions?" I also test theories by "the theory says that treatment x should work". When hundreds or thousands of us have tried that with no benefits, it implies that the theory is wrong. I expect that all of the treatments in your list have been tried by others here, without ample reports of major success.

I'm not trying to discourage you from testing treatments; such experiments certainly improved my quality of life. My experience with ME treatments is that the theoretical treatments aren't much more likely to work than things randomly selected in a grocery store. Some people here report spending tens of thousands of dollars on theory-based treatments, with none of them having any beneficial effect. I've probably spend only a couple of hundred dollars on theory-based treatments, and those were my theories, rather than published ones. So, if you are money-constrained, expensive theory-based treatments are not, IMO, the best bang for your buck. I suggest first trying cheap spices&herbs, or some foods you haven't tried yet. For testing vitamin/minerals, an ordinary multivitamin tablet might work. It did for me, which led me to further testing to isolate iodine as the important factor.

Also, don't get so hung up on theories that you ignore negative results. Many of us have negative effects from treatments that have worked for others, or from foods/supplements that are 'supposed to be good for us'; the problem is that 'us' refers to normal healthy people without a weird disease that causes abnormal reactions. I suggest listening to your body; if the 'this might work' treatment makes you feel worse, you are probably not going to feel better if you keep taking it. Some people might say that 'it's a temporary effect', but with ME, I'd say it's more likely not temporary. I tried anti-candida treatments, and got the expected 'feel worse' reaction, so I thought it meant I was on the right track. Many months later, the 'feeling worse' continued unchanged, so it probably wasn't the expected mechanism.

Furthermore, ME changes over time, and some treatments only work for a short period, so occasional re-testing of treatments is worthwhile. I'm not sure when cumin cured my PEM, since it wasn't until I re-tested it by intentionally missing a dose that I discovered that the expected PEM didn't occur. Optimum dosages might change over time too. Just to be even more malicious, ME might change so that a treatment that didn't work before, or which worked and then failed, might start working again, and you won't know unless you re-test.


Horrible, nasty, malicious disease! :mad:
 
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Second star to the right ...
I note that those papers use terms such as "hypothesized" and "suggests".
:lol::lol::lol::lol::rofl::rofl: :squee::squee::squee::squee: ....

They're also quite fond of "The data indicates ....", "It could be assumed that.....", "It's possible to extrapolate from the results that ....", "While inconclusive, the testing outcomes would seem to point to .....", and other mimsy quibbles that researchers hope will winkle more grant money out of various somewhat reluctant coffers for which an awful lot of other researchers are competing .....


Unfortunately, ME isnt a 'sexy' disease/illness, even with the advent of long COVID, which so many hoped would focus attention more tightly on our symptoms and illness. But as I predicted in what some saw as a somewhat sour, pretty negative view of things, Drs are now quietly coming around to viewing long COVID as another head-case issue.

The more things change, the more they stay the same ....
If you approach it as "I should try this based on this solid theory", you'll have to wait for a solid theory to arrive, because none have arrived yet. There is no credibly verified theory for ME yet.
Absolutely none. And none that I can perceive looming on the horizon .... the truth is that this is a baffling little snarling badger of an illness with no consistent expression from one patient to the next and ditto no consistent genesis. And given the disinterest expressed by Drs in pursuing answers, or even the right questions, there arent going to be any, any time soon .....
Furthermore, ME changes over time, and some treatments only work for a short period, so occasional re-testing of treatments is worthwhile.
That's what makes it such miserable, labyrinthine horror, with ways leading on to ways as the poet said, and there's no reliable road map, or even a dependable compass that could at least indicate if you're going in the right direction ....
Just to be even more malicious, ME might change so that a treatment that didn't work before, or which worked and then failed, might start working again, and you won't know unless you re-test.
ANd we're back to the baffling little snarling badger, not even dependable enough to predict, snarl-wise, or when the snarl might turn into a smile. Of sorts.


It's true that things that didn't work at all a few years ago (iodine, D3, MK-7, B-Comp, calcium, small amounts of gelatin before bed) are go-tos now and hopefully will stay that way, cause my willingness to keep trialing is pretty thin right now.

Dealing with this is an on-going struggle, and negotiating the shifting sands can really wear 'ya down.

But we're in a sort of Never-Never Land .... no real idea how we got here, no reliable rules, no hard and fast do's or don'ts (well, except for the givens .... if you overextend, you're gonna pay, pacing yourself is essential, and, as @Wishful already said, shelling out thousands for something that helped someone else is quite likely a waste of time and money).....and the solid knowledge that we're our own lab rats, our own petri dishes, and our own healers.

It was my husband, DB, who taught me not to scorn the 10%, and I dont. Ten per cent here, ten percent there, and pretty soon you've got some real improvement
 

Wishful

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Ten per cent here, ten percent there, and pretty soon you've got some real improvement
A ten percent improvement also makes it that much easier to make the effort to try more, and more likely to notice changes. I have sympathy for those who have reported having tried vast numbers of treatments without lucking on to one that helps. Finding something that helps, even if it works only for a short time, gives a real boost to belief that a treatment/cure is possible.
 

Mary

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@Niklas - you've obviously given a lot of thought to this. Some of your supplements I recognize and have tried, and some are new to me. I think they're all worth a try, but I think it would be good to try one at a time. Otherwise it will be difficult to know what is doing what to you. You might react badly (or well) to something but if you're trying 5 or 10 different new things at once, you won't know what it is.

I think there is some science behind your method and I think it's worth a go. Who knows? We sure don't!

Just FYI, I've had good results with BCAAs - have been taking them now for 8 years and they've cut my PEM recovery time by more than half. Unfortunately, I need to keep taking them - I've stopped a couple of times and each time started to regress rather quickly. They also I think help some with energy and I know they've helped a lot of people here. My good results showed up within about 5 or 6 days so if you tried them, hopefully you'd find out quickly whether or not they were worth the money. I've taken 4000 - 5000 mg a day, 2000 - 2500 mg. 2 x a day on an empty stomach (taken before 2:00 pm - taken late in the day they can cause insomnia)
 
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most of my improvements have come from noticing what foods I need to avoid.
thats certainly a KEY to getting through one day to the next.

today is a walk in the park, compared to yesterday...and all that seems tied to major concepts like

cabbage- how dare I eat some cooked cabbage

a piece of bread- Death by a Thousand cuts. (or is that leaks)