The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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For POTS or for digestion: Instead of Parasym Plus, increase acetylcholine at low cost & naturally

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Lolinda, Aug 3, 2016.

  1. Lolinda

    Lolinda postprandial POTS + MCAS + beriberi

    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
     
    Last edited: Aug 10, 2016
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  2. Richard7

    Richard7 Senior Member

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  3. Richard7

    Richard7 Senior Member

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    in the above link to nutrition data I included betaine. Having looked at
    848px-Choline_metabolism-en.svg.png


    (from here https://en.wikipedia.org/wiki/Choline)
    it seems clear that you really need choline. I guess I am too used to thinking about methylation.
    anyway here is just choline
    https://nutritiondata.self.com/foods-000144000000000000000-w.html

    You may also want to think about lecithin. Its pretty cheap. Just going by the prices at the supermarket here in OZ (coles) 20g lecithin which would cost 56c would contain as much choline as $1.02 worth of the cheapest eggs or $2.40 worth of chicken liver.

    Of course the other things contain plenty of other nutrients.

    The big suprise to me was that the lecithin capsules I have been taking contain so little choline. according to http://lpi.oregonstate.edu/mic/other-nutrients/choline choline is only 13% of the weight of phosphatidylcholine.
     

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  4. Snow Leopard

    Snow Leopard Hibernating

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    I don't understand why you'd want to increase ACh, when all the evidence suggests dysregulation of the response to Acetylcholine, rather than deficiency? Acetylcholine suppresses NK Cell activity, Galanthamine Hydrobromide (an acetylcholinesterase inhibitor) was found to be ineffective in a blinded RCT (with some suggestion of increased adverse effects), overactivity of the response to Acetylcholine could explain the micro-vascular issues etc.
     
  5. Richard7

    Richard7 Senior Member

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    @Snow Leopard.

    @Llinda's reason is pretty straightforward Dr Diana Driscoll, who is discussed in the linked threads, found that with her POTS the issue was not autoimmune, the nerves seemed to be working fine she just had a problem with not having enough acetylcholine.

    I know that @Hip has choline in some of his recommended supplements, and have certainly read of other people using choline supplements.

    doing a quick search I came up with this discussion http://forums.phoenixrising.me/inde...acetylcholine-toxicity-the-cause-of-cfs.9757/ (which I have not read in full) but in which Rich VanK points out that he would expect people with CFS/ME to have low choline and considers the experiments that seem to show otherwise to only do so due to faulty assumptions.

    and this from genetic genie http://geneticgenie.org/blog/2013/1...chronic-illness-the-hunt-for-the-missing-egg/ which points out some of the genetic variations that can lead to choline issues. (there seems to be quiet a lot of this on pubmed eg https://www.ncbi.nlm.nih.gov/pubmed/21270363 ) but also points out that their can be autoimmune issues too.

    When I sat down and worked out how much choline I was consuming in my diet I found it was way below the RDA. I have been using a nutrition tracker which does not track choline, and had though my diet was pretty good all round, but it turns out that it may be an issue. (I also have some of the SNPs that may suggest a greater need for choline.)
     
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  6. Snow Leopard

    Snow Leopard Hibernating

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    @Richard7 I have read a lot of hypotheses, and a lot of studies on this too. I don't see that the evidence matches these "low acetylcholine" hypotheses. I myself am searching for a better explanation, but I can't quite put my finger on it yet.
     
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  7. Lolinda

    Lolinda postprandial POTS + MCAS + beriberi

    Me the same! (based on rough estimate) Now, I eat much duck and buy them with tons of fat on. Duck fat has a lot of choline and is so so tasty!! duck fat and butter have choline, olive oil doesnt. Etc etc.

    Which nutrition tracker do you use? I use cronometer.com. Has choline for a few foods. But I will do this: create my own foods in crono from simply copying the pre-existing foods and adding in the choline values. So I get more exact values. and see nicely how my choline intake goes up :) I love seeing it visually, gives a satisfaction that my "efforts" in eating tasty ducks have a "result". the higher the graph goes, the happier I am, or so :D

    Thats what @DrDiana says, too: She was sick and nobody told her that she could have too little acetylcholine, cause there are no papers on that. Now, my big question to you, @Snow Leopard is: do you have evidence against a possibility that a part of POTS patients have low acetylcholine? And most of all, have you ever come across any research to measure acetylcholine in humans? This is imo close to impossible, and hence it is not that simple to prove or disprove any hypothesis if POTS is (in some people and in part) caused by low acetylcholine. As you are talking about research, I guess you will be aware of measurement methods of other neurotransmitters. For example some of the sympathetic nervous system uses noradrenaline (e.g. for vasoconstriction). You can easily measure it because there is a spillover into the blood. I did a standing-laying study and my laying noradrenaline was normal, my standing noradrenaline was hugely elevated - typical for POTS. (have you guys done this?) But when it comes to acetylcholine, what do you want to do? What should a researcher do? I do not know if there is a spillover from neurons into the blood, I guess there could be. But if so, it dissociates into its components and then what do you measure? Choline? My simple point is: if you cant measure it, you publish less... :eek: So I could imagine the following types of studies:
    1. feed acetylcholine precursors to POTS patients and see if it helps a subset
    2. I dont know if one can see acetylcholine in a brain scan spectogramm? I have one from a real 3 tesla mri machine, but dont know (yet) where to look :)
    addition: I have meanwhile checked it and no, one doesnt see a thing in the spectra. search here for a etylcholine: http://spinwarp.ucsd.edu/neuroweb/Text/mrs-TXT.htm
    3. Reduce acetylcholine in mice and ask them if they feel like POTS
    4. You volonteer to donate your brain :devil::devil:(just kidding, ok? :) )
    I hope we will see such studies soon (1-3 :) ). But the inexistence of studies means to me not any disaproval of @DrDiana 's idea, it simpy means "we dont know". lets hope for the state, god or Bill Gates to pour some gold into the hands of a good researcher... :angel:

    Until then, I do my own N=1 study and see if I get better. If you guys are with me, then we go N=2, 3, ... ! I dont think we can lose much, except for a few pennies on tasty red :wine: vinegar, @Richard7 calculated the pennies for choline supplements (which I will take in addition to all else), and I dont calculate the :moneybag: of fatty ducks because they are simply too tasty so my brain stops thinking at that point :)
     
    Last edited: Aug 6, 2016
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  8. Lolinda

    Lolinda postprandial POTS + MCAS + beriberi

    Here you can marvel at my diet, what I eat today. :)

    Unfortunately, inspite of increasing my choline intake by eating 250g duck meat, I am still at 46% RDV choline. too bad... This IS a deficiency, with or without @DrDiana s theories.

    And my total daily red wine vinegar intake is 60g.

    (and in case you wonder what the heck those tons of fat are: I eat a low carb high fat paleo diet. Do not tolerate anything else)

    low choline inspite of duck.png
     
    Last edited: Aug 6, 2016
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  9. Lolinda

    Lolinda postprandial POTS + MCAS + beriberi

    Interesting! do you have more on that?
     
  10. Richard7

    Richard7 Senior Member

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    @Llinda
    the tracker I have been using, when well enough to do so, is paleotrack. https://paleotrack.com/

    Working it out on paper I seemed to get to about 500mg yesterday, which would not really be enough as the AI (for men) is 550/76kg bodyweight and I am quiet a bit heavier than that. And 150mg of the 500 came from lecithin. So my diet at 350mg is really deficient.

    I do not seem to tolerate eggs at the moment, but I had some energy today so I made a lamb liver pate, and I do not know how much choline is in lamb liver, NUTTAB is down today and the american tables do not list it, but I assume it will be good.

    adequate intakes and upper limits are here https://www.nrv.gov.au/nutrients/choline

    @Snow Leopard I really do not know what is going on with CFS/ME in general or in me in particular. I do not currently have a theory to work from. And I really hate that this is so.

    But I do think that I should be at least aiming to meet all nutritional targets, and am really happy that Llinda brought this to my attention.

    Moreover I found the talks by @DrDiana interesting because I have been trying to work out why I need to take exogenous acid, bile, and enzymes and why sometimes my bile and acid production seem to pick up and this could perhaps offer an explanation.
     
  11. Lolinda

    Lolinda postprandial POTS + MCAS + beriberi

    very interesting! what does she offer on that?
    btw I am battling low stomach acid as you can see from my activities on this thread
    http://forums.phoenixrising.me/inde...ith-low-stomach-acid.45191/page-2#post-746862
    (and in case you try out the measurement method therein, leme know what comes out, I am curious. in particular about things that improve it, as you will guess, but actually also things that make it worse for you.)

    I wished there was a test for pancreatic function, but all I know about is pancreaselastase. I guess you had that too and I guess it was always fine and I guess you profitted from pancreatic enzymes in spite of this, showing that a better test is needed.......... or? :) but what is a better test?
     
    Last edited: Aug 7, 2016
  12. Lolinda

    Lolinda postprandial POTS + MCAS + beriberi

    Me neither. No clue why this is. I tried eating only the yolk, cooked, raw, all to no avail. tolerating eggs is maybe the most important topic in all this, it would resolve all the choline issue instantly... and most of all: naturally.

    actually, you do paleo, too?
     
  13. Richard7

    Richard7 Senior Member

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    @Llinda I read the info on the alkaline tide test with interest. But my recommendations for taking pancreatic enzymes, bile and betaine HCL came from stool pathology.

    @DrDiana explained that the vagus nerve was responsible for stimulating the release of acid in the stomach, the release of enzymes and bile in the duodenum in one of the videos that open the thread you linked to at about 19:30

    I have done paleo, indeed I spent the first 6 months of last year doing AIP paleo.

    But I started with the weston a price foundation approach (more or less) 4 years ago, and was then influenced by Sarah Myhill, Mark Sisson, Terry Wahls, Angelo Coppola, and a bunch of other people.

    I have also done keto, a Wahls influenced varient but found that I could do it with relatively high carbs, I ranged from 50 -120g/day and was still finding myself in the red, >1.4ppm acetone, on my ketonix breath acetone meter. (Indeed I just blew yellow, >0.5ppm acetone, on the ketonix and I had 241g total carbs, 179 net, yesterday.)

    Wahls expressed the opinion that you just needed to have some ketone bodies to get the neurological benefits she was after, and when I think to test I am almost always able to measure some.

    I am still experimenting, and as I do not have a really clear consistent baseline it is often hard to work out what works and what does not. But I would currently describe my diet as mostly wholefoods (wholefood apart from cold pressed vegetable oils and highly refined cod liver oil and other supplements) with intermittent fasting.

    But I am quiet different from you and Diana. I am one of those people with ME/CFS with low auxilary body temperature (often below 35C, though intermittent fasting has increased it a bit) and one of those people who gained weight, rather than having trouble keeping it.
     
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  14. Lolinda

    Lolinda postprandial POTS + MCAS + beriberi

    mine is slightly lowish with 36.3
    I guess every doctor tested you on thyroid hormones... or? (it was every docs favourite in me.... not so much because of the 36.3, but becaise of ceeling cold and being tired. tiredness completely cold partially resolved meanwhile). they did it often but badly: tsh only... i had to educate myself and tell them to pls test free t3 t4 , total t3 t4, reverse t3. I had a t4->t3 conversion issue. fortunately resolved meanwhile.
     
    Last edited: Aug 7, 2016
  15. Lolinda

    Lolinda postprandial POTS + MCAS + beriberi

    thanks for the video! will look at it tomorrow. (now its 2:45 here... :eek: )

    btw I wonder if gut microbes can consume choline....?
    I caused me a lot of trouble in the past by taking vitamins orally :(
     
  16. Richard7

    Richard7 Senior Member

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    @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.
     
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  17. Lolinda

    Lolinda postprandial POTS + MCAS + beriberi

    thanks! thats more than likely exactly what has happened to me years ago: I took carnitine as a supplement (alone) and ended up in smaller and smaller tiny doses causing side effects. so tiny that absolutely no pharmacological issues were possible.... and my fatigue and my food intolerances got slowly worse

    and now I got digestive issues from eating brain. extremely high in choline. (but it was surprisingly tasty. needed, though,a bit of courage :) to try )
     
    Last edited: Aug 8, 2016
  18. Lolinda

    Lolinda postprandial POTS + MCAS + beriberi

    Hey wait!

    in my reading they are not saying that they cause it when consumed together, but they use terms that are fully confusing if the substances cause it together or individually! we are referring to this section, right?
    http://lpi.oregonstate.edu/mic/other-nutrients/choline#safety
    Oral supplementation with phosphatidylcholine (250 mg of total choline from food plus 250 mg of supplemental phosphatidylcholine) has been found to result in detectable concentrations of trimethylamine and trimethylamine N-oxide (TMAO) in the blood (23). The intestinal microbiota is directly implicated in the generation of trimethylamine from dietary choline, phosphatidylcholine, and carnitine.

    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.

    I am not fearing so much the tmao. thats a long slow process. I am fearing multiplying the "bad bugs" in the gut. it is really bad in me and I dont know what to do, nothing works. in fact, I was mostly healthy when I took the carnitine years ago (though battling digestive issues) and taking carnitine made me slowly deteriorate. (but made me much better on the short run!)

    and then I red about Prof de Meirleir and found that exactly those bacteria in the gut that he eradicates in patients to sometimes successfully cure CFS are the ones that consume the carnitine!!

    I just found this one:
    http://www.longecity.org/forum/topi...h-is-it-possible-its-a-small-molecule-advice/

    people have exactly these thoughts on how to take choline transdermally!
     
    Last edited: Aug 8, 2016
  19. Richard7

    Richard7 Senior Member

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    yes it I misread the section.
     
  20. Hip

    Hip Senior Member

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    Pyridostigmine, an acetylcholinesterase inhibitor, is a drug used for POTS which stimulates the acetylcholine receptors on the parasympathetic nervous system.

    From dinet.org:
    So pyridostigmine works by inhibiting the enzyme acetylcholinesterase, an enzyme which breaks down and removes the acetylcholine attached to acetylcholine receptors of the parasympathetic nervous system. Thus pyridostigmine allows acetylcholine to remain bound to the acetylcholine receptors for longer, thereby increasing the stimulation of these receptors.

    Note that the parasympathetic nervous system (PNS) uses the neurotransmitter of acetylcholine throughout, but the receptors in the preganglionic part of the PNS are nicotinic acetylcholine receptors, whereas the receptors in the postganglionic part of the PNS are muscarinic acetylcholine receptors.

    Muscarinic acetylcholine receptors are further divided into various types: M1, M2, M3, M4 and M5.

    If you look at this study of autoantibodies found in POTS, you see that in POTS, patients tend to have autoantibodies to the M1 and M2 muscarinic acetylcholine receptors (less commonly they may have M3 autoantibodies).

    So these M1 and M2 receptors are the ones that are likely blocked (or stimulated) by autoantibodies attaching to the receptor.

    Thus it's possible that drugs which stimulate (or block) the M1 and M2 receptors might help POTS. Some M1 and M2 agonists and antagonists are listed in this post. Although I have not seen any studies or reports of such agonists helping POTS.



    You can buy pyridostigmine here:
    Mestinon 60mg (pyridostigmine) 100 Tablets/Pack

    Buy Pyridostigmine (50 x 60 mg tablets for $40.00)



    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.
     
    Last edited: Aug 8, 2016
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