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. Yes, I have muscle fatigue symptoms of congenital myasthenic, .There does seem to be a wide range of severity, so difficult to tell. I’m going to try to speak with a neurologist about it, but that’ll take a while to happen.
Still trying to educate myself on the acetylcholine process.
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?

 

[linusbert]

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.

they (the industry) switched to new plastics this year (talking germany, could be different in your country) and its in just everything. and i am reacting to just that, never had problems with plastic much before.
just had to throw away a new bottle of my vitamin c i take for years because not the plastic of the bottle, but the seal inside the new received bottle was made of that disgusting new plastic, and of course the smell got over to the caps. i didnt even take them.
so your partner could react to the packaging and new materials they are using to wrap your medicine.
maybe its possible to get the once good sleep meds in a different form of packaging. maybe glas.

mcas and plastic intolerance of some sort i think is pretty much possible, especially the new plastics.

i can really only strongly recommend, do away with everything plastics as much as you can.
- throw out the plastic bottles, get glas bottles
- careful with food packaging, most stuff is in plastics, get rid of those
- try foods which do not come in plastics, maybe potatoes. avocados. coconut. whole corn body. eggs. (need to check the pesticides and histamines for those you can buy... definitely should be organic)

 

[EddieB]

they (the industry) switched to new plastics this year (talking germany, could be different in your country) and its in just everything. and i am reacting to just that, never had problems with plastic much before.
just had to throw away a new bottle of my vitamin c i take for years because not the plastic of the bottle, but the seal inside the new received bottle was made of that disgusting new plastic, and of course the smell got over to the caps. i didnt even take them.
so your partner could react to the packaging and new materials they are using to wrap your medicine.
maybe its possible to get the once good sleep meds in a different form of packaging. maybe glas.

mcas and plastic intolerance of some sort i think is pretty much possible, especially the new plastics.

i can really only strongly recommend, do away with everything plastics as much as you can.
- throw out the plastic bottles, get glas bottles
- careful with food packaging, most stuff is in plastics, get rid of those
- try foods which do not come in plastics, maybe potatoes. avocados. coconut. whole corn body. eggs. (need to check the pesticides and histamines for those you can buy... definitely should be organic)

I had read something about this recently, trying to remember where. The just of it was, they are becoming more concerned about the biodegradation of the plastic than with the health issues that it may cause.

 

[almost]

I would guess that supplemental choline would probably not be a good thing for me.

Hi Eddie, if you haven't tried it to verify, it might be worth a shot trying. One way to get more of the desired reaction is to increase one or more of the reagents. So increasing choline will increase the chance of the reaction happening if ChAT doesn't completely stop it. It may be inefficient, but could help. Choline is used in many places, so excess MAY not cause you difficulty, but only trialing will tell. Best to you . . . .

 

[EddieB]

Hi Eddie, if you haven't tried it to verify, it might be worth a shot trying. One way to get more of the desired reaction is to increase one or more of the reagents. So increasing choline will increase the chance of the reaction happening if ChAT doesn't completely stop it. It may be inefficient, but could help. Choline is used in many places, so excess MAY not cause you difficulty, but only trialing will tell. Best to you . . . .

Hi Almost,.
Because I’m not able to tolerate many foods, I eat 3 eggs daily. It’s one of the few things I do okay with.
So I’m thinking maybe there’s enough choline intake already, but I’m not utilizing it.
Yeh, I’ll have to try something cautiously, and see what happens.

 

[cristi_b]

they (the industry) switched to new plastics this year (talking germany, could be different in your country) and its in just everything. and i am reacting to just that, never had problems with plastic much before.

Never had any reaction to plastics, but I was wondering, since you seem to have a lot of chemical allergies as I do: have you ever been tested for Nitro-Tyrosine levels or Methyl-Glyoxal levels? They both are related to inflammation in the organism. Since I can't accept not being able to do anything about it, I'm still looking for an explanation, at least, for my weird chemical allergies. This is why I have ordered an Nitro-Tyrosine test, on the off chance I might find a cause. I can't find a Methyl-Glyoxal test in my area/country though, but I will let you know how the nitro-tyrosine result turns out.

 

[linusbert]

Never had any reaction to plastics, but I was wondering, since you seem to have a lot of chemical allergies as I do: have you ever been tested for Nitro-Tyrosine levels or Methyl-Glyoxal levels? They both are related to inflammation in the organism. Since I can't accept not being able to do anything about it, I'm still looking for an explanation, at least, for my weird chemical allergies. This is why I have ordered an Nitro-Tyrosine test, on the off chance I might find a cause. I can't find a Methyl-Glyoxal test in my area/country though, but I will let you know how the nitro-tyrosine result turns out.

methyl glyoxal, i think Chris Masterjohn just released a newsletter about sulfar a few days ago. you might wanna check.
https://chrismasterjohnphd.substack.com/p/my-sulfur-protocol

nitro tyrosine could be nitro-stress , its like oxidiative stress just worse when NO combines with another radical. in that case hydroxocobalamin and others might help as it gulps up the NO.

 

[linusbert]

Hi Almost,.
Because I’m not able to tolerate many foods, I eat 3 eggs daily. It’s one of the few things I do okay with.
So I’m thinking maybe there’s enough choline intake already, but I’m not utilizing it.
Yeh, I’ll have to try something cautiously, and see what happens.

eddi you might wanna try l-carnitine it might help with metabolising those fats.

 

[EddieB]

eddi you might wanna try l-carnitine it might help with metabolising those fats.

I just looked that up, and I’m seeing l-carnitine and acetyl l-carnitine.
Which one should I be looking for?

 

[linusbert]

i would go for l-carnitine-fumarate . its carnitine attached to fumarate. fumarate itself is useful in the citrate ciycle in energy production.
l-carnitine usually comes bound to tartrat, which has no further use to the body.
acetyl l carnitine is bound to a acetyl group, depending on how your metabolism goes, this can be beneficial or not.
if problems with choline i would start with the normal l-carnitine or l-carnitine-fumarate. because carnitine acts as a buffer for acetyl groups, if you got too many it will make problems, that carnitine will do good then.

but test the acetyl l carnitine too. sometimes one carnitine form does nothing and another does a lot. if you have too less acetyl groups available, the extra acetyl from acetyl carnitine might be beneficial.
also acetyl carnitine seams to be more available to the brain.
the acetyl form is easier on the guts too, i could take iwithout problems. the normal l-carnitine can cause diarrhea, thats why i barely take it. the fumarate might be different as well.

 

[EddieB]

i would go for l-carnitine-fumarate . its carnitine attached to fumarate. fumarate itself is useful in the citrate ciycle in energy production.
l-carnitine usually comes bound to tartrat, which has no further use to the body.
acetyl l carnitine is bound to a acetyl group, depending on how your metabolism goes, this can be beneficial or not.
if problems with choline i would start with the normal l-carnitine or l-carnitine-fumarate. because carnitine acts as a buffer for acetyl groups, if you got too many it will make problems, that carnitine will do good then.

but test the acetyl l carnitine too. sometimes one carnitine form does nothing and another does a lot. if you have too less acetyl groups available, the extra acetyl from acetyl carnitine might be beneficial.
also acetyl carnitine seams to be more available to the brain.
the acetyl form is easier on the guts too, i could take iwithout problems. the normal l-carnitine can cause diarrhea, thats why i barely take it. the fumarate might be different as well.

Sounds like a safe place to start, thank you!

 

[cristi_b]

This is why I have ordered an Nitro-Tyrosine test, on the off chance I might find a cause.

My results came in: my Nitro-Tyrosine was 626 nmol/L where the laboratory upper limit was 630 nmol/L. Since on the day of the blood draw my allergies were not that bad and the measured level was right at the upper limit, I am inclined to believe it is related to my chemical allergies. It is quite possible that, on my worse days, the nitro-tyrosine would be over the upper limit, so I will definitely keep on eye on this blood marker in the future in spite of the high cost for the test.

 

[ilivewithcfs]

Update.
I've been taking 800 mg if l-theanine and my sleep is fine. Hope it stays that way, you never know with this illness.