Read this before trying choline.

[ilivewithcfs]

sorry to hear. get weller soon again.

Thanks, this means a lot to me. People in my life(including my doctor) have zero understanding of what I'm going through.

 

[almost]

Therefore rather than trying to increase choline, is there a way to try and make use of what’s already there?

That's a great question. I'm sure you know all this already, but I'll throw it out there. The reaction seems very basic for a biochemical reaction, with no cofactors like a vitamin or mineral, so I don't see a way to speed up the activity of the enzyme. There is Congential Myasthenic Syndrome, which does seem to have successful treatments depending on the type. If you have any of the associated symptoms, might be something to consider. You could also be a carrier, which would give you a muddled presentation. I tested hard for myasthenia gravis, as I fit the symptomology very well, but no dice.

The only other thing I can offer is maybe try a different form of choline; phosphatidycholine, namely sunflower (not soy) lecithin, which may help with transport or Alpha GPC is the more useful form in the brain. I imagine you've tried supplementing acetylcholine to bypass the enzyme. Doing such is often a go-to, but would it make it through digestion? I don't know. Edit: d'oh! brain was thinking of acetyl carnitine - not the same thing. Sorry!

You have a tough one to figure out, and I wish you best of luck.

 

[SpinachHands]

I'm sorry to hear too. My partner is still having a bad reaction to choline too that their specialist reckons is an MCAS flare, so now there's a whole new host of symptoms thrown in the mix with ME and dysautonomia, and possibly hyperPOTS. She said it should go away on its own, but that's what we thought after LDN gave them dysautonomia six months ago ...
We tried some antihistamines and even tried starting a super low dose of the Cromolyn they were supposed to start before this happened, but they're just too reactive to everything right now, even some of their safe bet pain and sleep meds have become intolerable. It sucks when you think you're on track and some new crap just kicks you back down the stairs. Wishing you the best, and sorry you're having to deal with this too.

 

[almost]

People in my life(including my doctor) have zero understanding of what I'm going through.

Sorry you are struggling. I also hope you and @SpinachHands turn the corner.

 

[ilivewithcfs]

Thanks all of you for support. It means a lot to me. I've started l-theanine, and there's definite improvement. We'll see what happens next.

 

[Violeta]

Choline's main effect is on the liver.
The liver is where meds are metabolized.

I wonder what the effect that choline can have on the liver that worsens a condition.

Let me think about this.

 

[EddieB]

That's a great question. I'm sure you know all this already, but I'll throw it out there. The reaction seems very basic for a biochemical reaction, with no cofactors like a vitamin or mineral, so I don't see a way to speed up the activity of the enzyme. There is Congential Myasthenic Syndrome, which does seem to have successful treatments depending on the type. If you have any of the associated symptoms, might be something to consider. You could also be a carrier, which would give you a muddled presentation. I tested hard for myasthenia gravis, as I fit the symptomology very well, but no dice.

The only other thing I can offer is maybe try a different form of choline; phosphatidycholine, namely sunflower (not soy) lecithin, which may help with transport or Alpha GPC is the more useful form in the brain. I imagine you've tried supplementing acetylcholine to bypass the enzyme. Doing such is often a go-to, but would it make it through digestion? I don't know. Edit: d'oh! brain was thinking of acetyl carnitine - not the same thing. Sorry!

You have a tough one to figure out, and I wish you best of luck.

Hi, thanks for the response. Yeh, this is a way more complex process than I’m able to understand.
What I think I know so far....
- Choline is needed to produce acetylcholine
- Supplements like Alpha GPC appears to assist with acetylcholine production
- Acetylcholinesterase is involved in the breakdown of acetylcholine
- Things like hupazine A and mestinon (Pyridostigmine) are acetylcholinesterase inhibitors. They increase acetylcholine levels by slowing the breakdown effects of acetylcholinesterase.

Then there’s this from Wiki,
- “Choline acetyltransferase (commonly abbreviated as ChAT, but sometimes CAT) is a transferase enzyme responsible for the synthesis of the neurotransmitter acetylcholine. ChAT catalyzes the transfer of an acetyl group from the coenzyme acetyl-CoA to choline, yielding acetylcholine.”
This is the genetic defect that I have. I would guess that supplemental choline would probably not be a good thing for me.

So it appears they are multiple places/ processes where things could be held up. I’m not sure how a person would safely go about doodling with any of these, not knowing which area is deficient. Possibly a reverse engineering approach, start with things to reduce the acetylcholinesterase, and work backwards from there?

 

[EddieB]

I wonder what the effect that choline can have on the liver that worsens a condition

Complete guess, but maybe if there’s more available (from supplementation) than can be utilized?