• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

For POTS or for digestion: Instead of Parasym Plus, increase acetylcholine at low cost & naturally

heyitisjustin

Senior Member
Messages
162
@Llinda,
yes microbes can, there are concerns about choline supplementation raised on the linus paulling website under safety http://lpi.oregonstate.edu/mic/other-nutrients/choline#safety

Though it does state that the microbes need both choline and carnitine, so I guess lecithin or other supplements consumed between meals would not be an issue.

But we need to take carnitine at the same time as choline to make ACh, right?

From the link
"Taking large doses of choline in the form of phosphatidylcholine (lecithin) does not generally result in fishy body odor, because its metabolism results in little trimethylamine". It sounds like phosphatidylcholine isn't too bad
 

heyitisjustin

Senior Member
Messages
162
@Llinda,
yes microbes can, there are concerns about choline supplementation raised on the linus paulling website under safety http://lpi.oregonstate.edu/mic/other-nutrients/choline#safety

Though it does state that the microbes need both choline and carnitine, so I guess lecithin or other supplements consumed between meals would not be an issue.

ACh (from Choline) helps boost HCL(stomach acid) so taking it before meals should be helpful for this reason. Therefore, its probably better to take choline before dinner than before bed (unless there are other reasons for wanting ACh boosted later.
 

heyitisjustin

Senior Member
Messages
162
my conclusion is that they say that choline, phosphatidylcholine, and carnitine each cause the issue alone. I believe this because I red the studies on carnitine which causes the issue alone

according to the same link phosphatidylcholine isn't supposed to create to much TMA (as opposed to other choline sources?). I am a bit worried about TMA but will stick with phosphatidylcholine as it seems to be slightly helping my motility.
 

heyitisjustin

Senior Member
Messages
162
Since the vagus nerve of the parasympathetic nervous system lies outside of the brain, you don't need to worry about passing through the blood-brain barrier.

From what I understand ACh is used thruout the nervous system. Some people might also need to increase ACh in the brain. Since my problems are mostly gut related I probably don't need to worry about increasing ACh in the brain. On the other hand, I get stimulated easily and might want to avoid Alpha GPC (which crosses the BBB) and might worsen my sleep (conjecture as some say it is a stimulant, who knows it might help some people sleep).

Has anyone experimented with different forms of choline/acetyl groups and noted how they affect the gut (motility and digestion) and sleep?
 

Hip

Senior Member
Messages
17,824
From what I understand ACh is used thruout the nervous system. Some people might also need to increase ACh in the brain.

Not for POTS purposes I would have thought, because the latest studies indicate that POTS may be caused by autoantibodies affecting the receptors of the autonomic nervous system (ANS), and autoantibodies don't cross the blood-brain barrier very easily, so the problem in POTS would appear to be in the ANS, not the brain.
 

heyitisjustin

Senior Member
Messages
162
The Huperzia serrata extract is huperzine A, which is an acetylcholinesterase inhibitor supplement. I think this is an important part of the formula. For those in Europe, a very cheap supplement supplier is healthmonthly.co.uk, who sell huperzine A — see here.

Galantamine is another acetylcholinesterase inhibitor supplement, but is more expensive than huperzine A.

A cheap supplier of acetyl-L-carnitine is here.
I think huperzine A is overstimulating me (it also increases dopamine which causes me not to sleep probably due to my MAOA inhibition). Huperzine is a very strong inhibitor from what I recall (and quite pricey). Bacopa also is a acetylcholinesterase(AChE) inhibitor which I plan on trying. Some people also might not need an AChe, just choline and ALCar.

Has anyone experimented with different AChEs and found some more or less stimulating/useful?
 

heyitisjustin

Senior Member
Messages
162
Not really related to ME/CFS, but I found choline bitartrate very effective for treating my social anxiety, a condition that appeared alongside my ME/CFS. It's known to help social anxiety. Social anxiety is a really weird one: it manifests as an unduly deep concern about how other people judge your words or actions.
@skwag posted regarding toxicity of the commonly sold form of choline bitartrate here: http://forums.phoenixrising.me/inde...-and-pots-may-respond-to-choline.40085/page-3
It sounds like there is another kind of choline bitartrate and if you take choline bitartrate you might want to seek it out.
 

heyitisjustin

Senior Member
Messages
162
Not for POTS purposes I would have thought, because the latest studies indicate that POTS may be caused by autoantibodies affecting the receptors of the autonomic nervous system (ANS), and autoantibodies don't cross the blood-brain barrier very easily, so the problem in POTS would appear to be in the ANS, not the brain.
Our bodies are in a complex system. If our digestion is sluggish due to POTS damage we could end up with an overgrowth of Clostridium which could degrade ACh. I am not sure if that effects the brain but I could see some people with POTS potentially benefiting/being harmed from additionally increasing brain ACh (even if there is nothing wrong ACh wise it might help/hurt to raise it due to ACh's many uses thruout the whole body).

I guess I am just suggesting if people aren't being successful with just peripheral changes (from phosphatidylcholine) it might merit a trial of AlphaGPC (for example) and vice versa.
 

heyitisjustin

Senior Member
Messages
162
Here is my experience with parasym plus.

I suspect I have hyperandrogenic POTS. (Gastroparesis, dry mouth, high heart rate, etc)

Taking lower doses like the 2-3 recomended I don't really notice anything. Taking higher doses like 5-10 capsules in the morning I don't feel anything until about 5hrs later where I start to feel okay, palpitations are noticably reduced and my head feels clearer and more relaxed, then at about the 7hr mark I start having trouble breathing properly, my heart starts pounding again but in a different way before and this can be really bad and last for 6hrs+.

I ran out of pills before seeing if I could find the right dose.

As a guess I would say that the cholinesterase inhibitor was causing the bad symptoms later on (and they could get REALLY bad) however I am confused as to why it would take so long to kick in... any thoughts?

huperzine has a really long half life 11+ hours and is very strong. It also increases dopamine (and perhaps other things). It is possible that the choline goes away quite quick but that huperzine A keeps on kicking. I'd be curious to see if you feel better without huperzine A (was this the cholinesterase inhibitor you took?) or with a different cholinesterase inhibitor (or Bacopa which I think has multiple ways of boosting ACh).

That being said all of my theories explain the 7 hour mark. I have no idea why it would take 5 hours to feel the benefit. Does anything else happen in those 5 hours?
 

heyitisjustin

Senior Member
Messages
162
This won
Hi Lolinda :)

No, I never said that. I only said that LOW stomach acid, according to Chris and others, can apparently cause GERD. I, like you, believe GERD is due to the LES not functioning properly. Many EDS's have issues with their LES b/c of the cartilage/soft tissue laxity. And yes, stomach acid is meant to stay in the stomach, not the sensitive lining of the esophagus! Hence my pain !!! Ow...
This won't fix your problem but demulcents like deglycerrized licorice can help the esophagus heal.

HCL helps limit the biome to bacteria that survive in a narrow PH range (much like fermenting sauerkraut).
The bacteria ferment some of our food (especially carbs hence the low carb suggestion [others also include fiber as a fermentable and suggest a low FODMAP type diet]) and increase the pressure on the sphincter eventually causing it to open.
I believe this is the theory behind Chris's statement.
 

Richard7

Senior Member
Messages
772
Location
Australia
Just a note on TMAO.

I am not claiming any expertise, but with from reading about it I am not sure how concerned we should be. A lot of the discussion I have seen on it seems to be driven by a desire to prove that a vegetarian diet is superior to omnivorous ones and I suspect that politically charged debates based on thin evidence are probably best ignored.

But some of the research suggests that our microbiota are responsible for much of the TMAO production. And in mice at least resveratrol can counteract this https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4817264/.

I also found a masters thesis http://digitalcommons.usu.edu/cgi/viewcontent.cgi?article=6057&context=etd which showed no statistical difference between plasma TMAO in high (>600mg/d) and low (<100mg/df) flavanoid and proanthrocyanidin diets. This research suggests that about a third of plasma TMAO can be explained by intestinal microbes.
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
back to the original topic of the thread - supplementing with choline:
@Lolinda Have you looked into Delayed Release Phosphotidylcholine? Most phosphotidylcholine (PC) products are soy or oil based which get digested and absorbed before reaching the large bowel which is where its beneficial effect takes place but this delayed version is derived from eggs (egg lecithin)

It's suggested as something to help with intestinal permeability and was in clinical trials in Germany for Ulcerative Colitis and something that Dr Myhill makes mention of (Endragil 500). I'm a bit confused on this one though as I saw somewhere that it is based on soy lechithin rather than egg lecithin used in the less potent product that has been on the market in Europe for some time.
http://www.nature.com/ajg/journal/v109/n7/full/ajg2014104a.html
http://www.drmyhill.co.uk/wiki/Ulcerative_colitis_and_phosphatidylcholine_(PC)_in_the_gut

Last time I looked, Endragil 500 still hadn't been released into the market place and the egg lecithin delayed version that was for sale for sale as a supplement in many European markets including the U.K. is now only available in Germany (PC Medicus Phosphatidylcholine by Medicus GmbH). It is only 30% PC strength as a coated granule whereas the current version in the clinical trials is 90% PC in capsules form but the earlier positivestudy results was from only this 30% PCconcentration anyway so there is proved efficacy even at this lesser concentration.
https://www.amazon.co.uk/Medicus-Gm...5031&field-lbr_brands_browse-bin=Medicus GmbH

One of the co-inventors of this has suggested that as PC products need to get to the bowel intact to be of benefit, a lecithin retention enema could be just as effective.
 

bread.

Senior Member
Messages
499
This thread is to collect all ideas and experiences to increase acetylcholine naturally, by whole foods or by cheap supplements. The idea is essentially, that acetylcholine is the neurotransmitter used by the parasympathic nervous system (and also by some parts of the sympathicus). Increasing it helps some POTS patients as well as anyone with sympathetic dominance and many people with digestive issues. For a long list of conditions where this might help, see this patent:
http://www.google.com/patents/WO2014160423A1?cl=en

The idea to increase acetylcholine is best known via the Product Parasym Plus (though actually all the methods described in this post have been there well before Parasym Plus and well before the patent). I would prefer buying Parasym Plus cause it is tried by many people with POTS and seems to do at least some good for most:
https://www.amazon.com/Parasym-Plus...ll_btm?ie=UTF8&showViewpoints=1&sortBy=recent
For those not familiar with Parasym Plus: its a product by Dr Diana Driscoll, whos treatment approach is discussed in a balanced way here, containing both favourable and critical voices:
http://forums.phoenixrising.me/index.php?threads/pots-relief-could-it-be.42775/

The ingredients are:
https://www.amazon.com/forum/-/Tx1AKJRWUC0QKMH/ref=ask_dp_dpmw_al_hza?asin=B016J8FJYS
Alpha-Glyceryl Phosphoryl Choline, Aceytl-L-Carnitine HCL, Huperzia serrata leaf standardized extract 840 mg, Thiamin (as Thiamin HCI) 60 mg
or see here:
http://www.google.com/patents/WO2014160423A1?cl=en

Now, what should I do if I get polyneuropathy from even smallest amounts of B1 and if I generally poorly tolerate supplements? Also, I have seen posts by others who cannot afford 58$ for a 10d supply, whom I want to help with this thread. So what can we do? Here I make a start with suggestions to increase acetylcholine. They are what I like and tolerate: real foods. And essentially cost-free. If you have an idea, please contribute just anything to increase acetylcholine naturally or by cheap supplements.

Here is a plain English description of the idea:
http://www.naturalbrainjuice.com/acetylcholine-key-unlocking-human-brains-cognitive-potential/
"To be simple, the brain essentially needs a choline molecule, an acetate (acetyl) molecule, and pantothenic acid (vitamin B5) to produce acetylcholine. You can get choline from eggs, acetate from vinegar, and B5 from eggs and avocados, or you can supplement for them. Alpha-GPC is my favorite choline donor, acetyl L-Carnitine is my favorite acetyl donor, and you can get straight pantothenic acid."

Now let's look at it in more detail if this really works and also a few practical hints:

1. vinegar diluted in water as a replacement for acetylcarnitine:

important: use plentiful of water to dilute it and drink with a straw. You may want to add a bit of salt too in order to buffer the acidity. All these measures serve to reduce tooth enamel damage to zero. You want to really get this issue completely out of the way as this "vinegar drink" needs to be tolerated every day several times. I have experience with that because I already took vinegar-water-drink years ago, for other benefits (great refreshment, gives energy and good mood, reduces ammonia). No damage at all while taking it for over a year. I put 10 ml tasty red vine vinegar into a glass of water, maybe some 1.5 dl or so. If you are histamine intolerant, you may want to use chemically produced acetic acid concentrate. Also you may want to pay attention to avoid vinegar with sulfite. Sulfite-free vinegar exists. And that is what I take.

Now, whats the scientific basis of this replacement?
The main ingredient in vinegar is acetic acid. This is just the same as the "avetyl-" in acetylcarnitine. acetylcholine is acetic acid + choline:
https://en.wikipedia.org/wiki/Acetylcholine
Now does all this vinegar we drink really contribute to acetylcholine in neurons??
As for peripheral neurons, I do not see issues, but lack a reference if they really take it up. For the brain, there is a hurdle to take: the blood-brain barrier. Fortunately, acetic acid crosses that successfully: http://jpet.aspetjournals.org/content/258/3/932.short

It was the following page that inspired me. One of the posts wrote that the acetylcarnitine simply serves to donate the acetylgroup:
http://www.longecity.org/forum/topi...-if-you-have-it-and-a-log-for-my-supplements/
"Acetyl L-Carnitine - it donates the acetyl- group to produce ACh"

2. dietary choline as a replacement for alpha-GPC
While many people eat plentiful choline, there is a considerable number who get too little.
Scroll down here and you find a fairly bad table of choline contents.
http://www.whfoods.com/genpage.php?tname=nutrient&dbid=50
For more info on choline contents, see the post by @Richard7 below.
If you want an easy to use software to compute your dietary choline intake, use cronometer.com. See my post several posts further below, with an example result. Crono is for free, though, I happily pay to support their great work.

Does anyone know a lab that tests for choline in blood?
I know only Spectracell's micronutrient test (MNT), which tests for choline in WBC. But first, the test is expensive and second it is not validated (but a smart idea nevertheless)

Now, will the choline we eat turn into acetylcholine in neurons? Fortunately, yes:
http://www.ncbi.nlm.nih.gov/pubmed/1251187

Hi,

how are you?

I am really interested in the part where you said you get polyneuropathy when you take VitB1, how do you know that, or why do you think that? Why would you get polyneuropathy from B1?

Thank you!

Christoph
 
Last edited by a moderator:

Lolinda

J'aime nager dans le froid style Wim Hof.. 🏊‍♀️🙃
Messages
420
Location
Geneva, Switzerland
Hi Christoph,

here I have documented what happened and some research that may explain it. It was a horrible event: imagine you sleep 3 hours and wake up that you feel almost nothing in your legs....... Polyneuropathy was diagnosed by a neurologist after hours of sending electrical currents through my nerves via electrodes.

Meanwhile, I found a safe way to supplement with B1: a few grams of nutritional yeast (not all brands do! check the labels. I use Dr Ritter Edelhefe). I had my deficiency measured several times until the measurements slowly improved over the course of supplementation and I finally got my deficiency resolved the slow but safe and natural way. If you are interested in the details, just use the PR search with thiamine as the keyword and Lolinda as the user and you will find a lot of messages detailing all the intricate issues of supplementation and testing. Better go slow, but safe and happy!! :)
 
Last edited: