Acetyl CoA and acetylcholine support are Citicoline, pantothenic acid (or pantethine, both seem to work), thiamine, acetyl-l-carnitine, manganese, cysteine and lysine. I also take lecithin and Mega PC triple-strength lecithin and just started NT Factor EnergyLipids Powder a couple weeks ago.
We are on very similar programs. I've been on NT Factor for over a year and wrote to Dr. Nicolson recently about my situation abd he suggested tripling the standard dose of NT Factor. At the same time, my doctor started the PC IVs, so I'm hoping to finally get ahead of the curve.
I only get carnitine by IV as my dictor eas concerned about TMAO - my gut bacyeria seemed to be making it. Not sure if I can get acetyl-l-carnitine by IV though.
When I first started taking lysine, it alleviated low ACh symptoms by itself, but only for a couple days. There doesn't necessarily seem to be a more is better effect with higher doses of cholines, but I'm taking a lot experimentally to replete any cell membranes that may have been damaged, which seems like it would take a few months at minimum. I feel the lecithins and phospholipids are a low-risk supplement.
Agreed. I wish Lipkin at al. would talk to Nicolson and Kane...instead of us out here in the weeds experimenting...
Acetyl-l-carnitine and thiamine can sometimes alleviate my low ACh by themselves.
How do you know that?
I'm taking 500mg benfotiamine daily plus high potency B complex and quite a lot of carnitine. And the Mestinon. (Does it playy a role here?)
I was an athlete playing a lot of roller derby (and all of the cross-training that goes with it) when I became ill and had heavy BCAA use when I got sick, so I don't use a lot of it anymore, but I do take an essential amino acid blend every day and have had a positive response to almost all amino acids that I've trialed separately.
I've consistently tested low in leucine and isoleucine and taking 5-6g of BCAAs helps to stave off PEM after exertion. But I've also had symptoms and tested low in tyrosine, lysine, glycine, glutamine, cysteine, citrulline, ornithine, etc. The pattern serms to match Fluge snd Mella's findings for women, and my doctors think im burning aminos for fuel. A custom amino blend has been helpful.
I was taking a lot of vitamin B6 because I seemed to have frequent proteinuria, but now that I'm taking methionine, cysteine, lysine and essential amino acids, I rarely develop proteinuria. So this makes me suspect that vitamin B6 was working overtime and becoming depleted trying to compensate for missing aminos (or burning them as fuel since they are unusable without their compadres)
I use a lot of B6, too. Had to go up to 350mg before I wasn't deficient. It's used in me me production and methylation, but also sphingolipid production, which I suspect is significant.
It's hard to elaborate much without feeling like I'm writing a book, but eating 2 bowls of sauerkraut per day also makes me feel better (much better than probiotic pills do), and I only recently discovered that sauerkraut has lactylcholine and acetylcholine in it.
Nice tip!
I haven't had immune issues or PEM for the last few years. I definitely had them for the 1st few years. I think they may have gone away because of the care that I put into trying to stabilize and normalize my iron metabolism. And that's where we get to what I think is the reason that doctors are unlikely to figure things out for most patients. The web of human metabolism is too complicated and no one recognizes many nutrient deficiencies any more because they are not considered much of a threat anymore. So no doctor was going to tell me that my recurring mono was from low lysine or that my low iron and low calcium symptoms were from low lysine or that I had low ACh levels (at least not until it gets bad enough to resemble myasthenia gravis).
We are all individuals and while these studies are nice, adjusting the variables to the individual is important. I have heriditary hemochromatosis, so rather than a low iron problem, too much iron has likely been a damaging factor for my mitochondria.
I think that's enough of a book for now. I don't like to feel like I'm junking up threads with too much personal experience that may or may not be pertinent.
I appreciate your sharing - it's helpful to see someone else out there working with the same variables and getting some results as I have. The studies are great, but we need treatments, so on this one I was left with wondering what treatment plan could be developed based on their findings. I think, as we've been finding, there are treatments that can be put together now.
I'm finding the idea of waiting for the magic pill or discussions of a single supplement lacking. But, fixing the fundamentals, like membranes, makes more sense to me.
Right now, I'm going to continue on with ACh support and phospholipid and amino acid replacement, and I'll have to see where I am in a couple months.
I'd love to hear your experience then...
I have a lot of low vitamin A symptoms, so no doubt being deficient in such a potent and important vitamin is affecting my health, but I'll be unable to replete vitamin A until I have done the work on my acetylcholine. Vitamin A increases acetylcholine production way too fast, and my body can't keep up, so I feel really great for a day or two and then I end up very depleted in ACh. Vitamin A is about the only nutrient that causes me to crash right now.
I'm on 50,000 IUs vitamin A a day. But, I'm also taking high doses of C, E, ALA, and glutathione. My tests have shown very high oxidative stress, and antioxidant deficiencies. This dose of vitamin A seems to be right. Comprehensive nutrient testing every 9 months has been realky helpful in trapping all my issues and helping us adjust doses.
Again, I wish we could get more out of the researchers on a path to correct recommended they see. It'd be nice to have a recognized path (and then get it paid for, so its available to all patients).