August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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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. jjxx

    jjxx Senior Member

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    I am more than happy to share my ongoing experiences with lecithin.
    1. I use the exact brand you use: Fearn lecithin granules, 1 to 2 table spoons to my water footbath for 20 minutes, twice a day.
    2. My protein intake is increased, which is what I desire foremost.
    3. I strongly believe nutrition is foundation, my overall sense of well-being is improved accordingly.
     
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  2. Learner1

    Learner1 Forum Support Assistant

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    Just found this discussion and read through it.

    Years ago, I became familiar with the Body Bio protocol by Patricia Kane, centered around lots of a specific phosphatidyl choline (PC). People have had varied results with it and she's been dogmatic that its her way only, which I never bought into.

    However I came away with an appreciation for PC, especially since my daughter had done well on CDP choline.

    I was surprised not to see a discussion of NT Factor here, which has a blend of phospholipids similar to those in the mitochondrial membrane. I've found it helps.

    I've read through all of Garth Nicholson's papers and it's compelling, particularly if you have PEMT SNPs and have a faulty Kennedy pathway and are lousy at making BH4.

    Then how do we increase sphingolipids? I know B6 is critical, but has anyone looked into what else we can do?
     
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  3. Gondwanaland

    Gondwanaland Senior Member

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    There are old threads on it... very interesting reading material.
     
  4. Learner1

    Learner1 Forum Support Assistant

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    Yes, it is. Just surprised not to see it mentioned here with the phospholipid discussion. I found out we need more than just choline...;)
     
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  5. Lolinda

    Lolinda POTS + after meals, I need to lay in bed for hours

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    I wish there was a lab to test them! I failed to find any. Anyone?

    Other topic: @Gondwanaland @jjxx I am glad to say, I slowly but consistently gained 2 kg weight during the last 8 weeks! I wanted so much to put on a bit. I think the tons of transdermal lecithin did it. I just send the charts Crono produces as a little encouragement for you guys, shows nicely the upwards trend :) But it also shows that it would have been good to measure always on the same time of the day :) - And, sorry for the poor screenshot. the graduation of the diagramm is 2kg per line.
    IMG_20170225_091224.jpg
     
    Last edited: Feb 25, 2017
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  6. jjxx

    jjxx Senior Member

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    That's impressive! Ever since I started your lecithin, my digestive discomfort went away and my protein intake went up significantly, but not my overall appetite nor did I gain or loose any weight, which is ok. I am not particularly looking for weight change even though I am on the light weight side and gaining some weight is potentially benefit for boosting my estrogen. Here is another thing about the soy lecithin we take, if estrogen is detrimental to you, you may want to consider sunflower lecithin etc.
     
  7. Lolinda

    Lolinda POTS + after meals, I need to lay in bed for hours

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    You see in the beginning of the diagram that there is a horizontal phase. Now, this is what I got by using transdermal lecithin 1x per day: no weight change but huge increase in calories eaten, as described in posts before. Then I increased to 4x per day: weight gain without further increase in calories eaten. Very recently I increased further, often even 6-7 or 8 times. This is totally crazy :) :) but it had a remarkable effect: not only that my calories intake went up by a further +500kcal, my whooping appetite for mackerel is gone. And this was the moment when I understood what is going on:
    • Mackerel is whooping high in DHA, a type of omega3 fatty acid.
    • Exactly this fatty acid makes the epithelial cells of the gut burn the fat, according to this research.
    • All the time so far, I tried to eat as much as I can in order to gain weight. And I noticed that the higher I go, the more this remarkable appetite for mackerel goes: I imperatively had to eat every single day a whole 100g can of mackerel.
    • So, more likely not, what happened was: the DHA made my epithelial cells burn all the precious fat I ate!
    • Now, this happens for a reason. Probably my huge fat intake on my keto diet led to some hypertriglicidemia. And DHA helps to lower that. This paper says: "Fish oil (omega-3) lowers postprandial triglyceride levels by 20% to 50% in a dose-dependent fashion, which may in part account for its cardioprotective properties."
    • In sum, now that my mackerel appetite is gone, I expect that all the fat I eat is not simply burnt, but carried to all the cells in the body to be utilized there. This needs what? Choline. Choline is in what? Lecithine! (Choline is needed by the liver to package fat so it is transported to the cells of the body)
    • So my hope is that my recent increase to smearing a whooping 6-8x per day will help to speed up weight gain.

    I wrote down all this detail hoping that it helps @jjxx and @Gondwanaland or anyone else reading these lines to gain weight :)
    It is crazy. It takes time to do it every day.. But it is my working method for a phase of time until I gained as much as I want. No I will not want to smear lecithin all my life 8x per day :) :) :)
    Practically, what I do is: smear 8x per day 2mL of Fearn lecithin on my belly (could be anywhere). Before, I resolve the lecithin in 5mL borage oil for hours. It resolves a bit but not well, so I mix it well. I take the borage for other reasons (GLA deficiency). And often, I smear a tiny bit of olive oil extra virgin on the same area, one hour after smearing lecithin. This helps to avoid skin irritation from too much smearing lecithin.

    Darwin probably would have commented your post by pointing out how logical it is that estrogen goes low when a woman's body has low fat reserves to carry out a pregnancy...

    Meanwhile, I tried various lecithins. My problem with sunflower lecithin is that it is brown. This is impractical when smearing it transdermally on skin because t-shirts get very dirty. Also, I found sunflower lecithin to have a smell. Not unpleasant, but I do not want to smell like that :)

    But very good that you point to phytoestrogens. I do not think they are good for anyone. Do you have any information as to if they go into lecithin in any noteworthy amounts? This is imo really important and I feel I better stop the soy lecithin if it has much estrogens!
     
    Last edited: Feb 26, 2017
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  8. Gondwanaland

    Gondwanaland Senior Member

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    I think you are counterbalancing it enough (GLA for instance is progesterogenic)
    Plus, I think phytoestrogens may inhibit endogenous estrogen production and block estrogen receptors. I wan to try soy lecithin anyway despite the disaster it was with choline. I suspect choline accelerates estrogen breakdown which I do not want.
     
    Last edited: Feb 26, 2017
  9. jjxx

    jjxx Senior Member

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    So your total intake of lecithin is 8x2ml=16ml per day? I use one tablespoon in the morning and one in the evening, almost equivalent to your intake, both added in my footbath. But my results are not nearly as dramatic as yours though if it's dose dependent. I have attempted dissolving it in olive oil, but it takes forever! You must be super patient or have a magic finger somehow. I can only validate my way of delivery by footbath by knowing digestive complaint returns immediately if I skipped it or not using sufficient lecithin in my footbath.
     
  10. jjxx

    jjxx Senior Member

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    No I don't. Especially I have symptoms of low estrogen, not tested low in blood, I welcome estrogen and am intolerant of progesterone.
     
  11. jjxx

    jjxx Senior Member

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    I would agree with your logic. And I can testify GLA from EPO is progesterogenic based on my personal experiences, then I had to stop using it immediately. I stopped taking the fish oil I have which is high in vitamin A. Vitamin A is progesterogenic too.
     
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  12. Gondwanaland

    Gondwanaland Senior Member

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    Have you read the study I linked here? I went very far dowhill before figuring out the progesterone link (not without your help, thanks!). I think the rule among Hashi's sufferers is estrogen domninace, that is why I have been prescribed progesterone over and over since it is synergistic with thyroid hormone(s?)

    Last Oct I forced EPO down my throat for almost a month and when I stopped it I was inundated with arachidonic acid. I think taking GLA blocks endogenous conversion of Omega-6 into it by B6, if I had realized it I would have taken some B6, but it becomes a catch 22 because B6 stimulates T4. I get a similar effect from chia seeds which I used to attribute to oxalates ( @Paralee ); I would get horrible worsening of inflammation everytime I took my thyroid replacement. Then I finally started the transdermal estradiol and found a new explanation to a lot of stuff...
     
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  13. Gondwanaland

    Gondwanaland Senior Member

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    If you have enough estrogen in blood then you have blocked receptors
     
  14. jjxx

    jjxx Senior Member

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    Then what have you learned and done to free up those receptors effectively? Certainly an interesting path to pursuit.
     
  15. jjxx

    jjxx Senior Member

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    Glad that I can help...., most importantly if your overall health is improving. Way to go!
    Yes, I did read your link of study but to be honest, I had a minimum comprehension of it, blaming my foggy brain for the most part. I will try to read it again and see what I can come up with.
    I could not find the reference you desired for your doctor regarding progesterone diverging tryptophan pathway to produce B3. Since I never thought of taking anything to my doctors, I don't have the habit of saving articles that I read. I only jolt down the take-home message, and in this case, it's one sentence worth. If my memory serves me correctly, it's not a research article from NCBI or its kind. Did you have any luck with it? Could you let me know what your reference is when you claim progesterone intolerance is actually B3 deficiency?
     
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  16. Gondwanaland

    Gondwanaland Senior Member

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    I will have to think about it. I hope it isn't YOU :lol:

    Before I proceed please aknowledge the risks of activating estrogen receptors. I am still educating myself about it as well.
     
  17. Techs

    Techs

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    This current study intrigues me because A) I have never responded well to acetylcholine supplementation, and B) my neurologist believes my small-fiber neuropathy is causing my FM and CFS.

    Researchers found that by blocking specific acetylcholine (muscarinic) receptors, namely M1R, they can actually reverse peripheral neuropathy in mice. An upcoming trial on humans will focus on diabetic peripheral neuropathy, but I'm wondering whether such antagonism could help heal small-fiber neuropathy as well.

    I've been taking pirenzepine for several weeks now (50 mg 2 x day). Pirenzepine is the M1R blocker that the trials will be using on humans. Pirenzepine's target is the gut, but the researchers will use it in the form of a topical cream for use on limbs afflicted with peripheral neuropathy. I do feel the drug has possibly been affecting my peripheral neuropathy already; e.g. areas that are typically numb are becoming more painful (sort of like aching frostbite). I'm not sure whether I will complete my plan to use the drug for 50 days, since it seems to be exacerbating my IBS. I'm thinking about reducing ingestion to once daily, and grinding up the remaining pills for a topical cream to use at night on my feet.

    I contacted the lead researcher, and he seemed to confirm that his study will be using cream mainly to reduce possible side-effects from ingestion. (I.e., he didn't rule out the possibility that ingestion could produce the more generalized effects that I'm mainly interested in -- although healing my peripheral neuropathy would alone be significant progress.)

    Meanwhile, I still can't tolerate alpha GPC or alpha lipoic acid (they produce flu-like symptoms in normal doses), but I have successfully resumed ALCAR supplementation.
     
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  18. Techs

    Techs

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    Wow, the race is on. Here's another trial hoping to actually reverse neuropathy (not just treat the pain). This one, instead of blocking acetylcholine, focuses on reducing gangliosides.
     
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  19. Lolinda

    Lolinda POTS + after meals, I need to lay in bed for hours

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    back to the original topic of the thread - supplementing with choline:
    While it is not possible no measure if one has enough acetylcholine, this paper mentions lab tests that give some indication if one is depleted or sufficient of choline:
    - CK
    - phosphatidylcholine
    Looking back, my CK was indeed elevated before choline supplementation. Phosphatidylcholine I had tested only while on AGP-choline and it was normal.
    Also, I find it useful to know that they use a 40 days period and 850mg to replete the most difficult study participants.

    http://onlinelibrary.wiley.com/doi/10.2903/j.efsa.2016.4484/full

    The design was similar in all studies (Appendix D), and was the following: a 7–10 day baseline diet, followed by a 42-day choline depletion diet, and then a choline-repletion diet (3–40 days). During the 10-day baseline diet, the subjects received normal foods providing 550 mg choline and 50 mg betaine/70-kg bw per day. During the choline-depletion diet, the subjects received foods providing < 50 mg choline and 6 mg betaine/70-kg bw per day for up to 42 days (with or without a folic acid supplement (100 or 400 μg/day according to study objective)), or until they were deemed choline-deficient and/or developed signs of organ dysfunction.
    More details on the design per study are provided in Appendix D.

    Muscle and liver dysfunction associated with choline deficiency was defined by the authors as a fivefold or greater increase in serum CK activity, a 1.5-fold or greater increase in AST, ALT, γ-glutamyltransferase (GGT) or lactate dehydrogenase (LDH), and/or a 28% or greater increase in liver fat content measured by computerised tomography (CT) or magnetic resonance imaging (MRI) compared with baseline and, depending on the study, estimated on day 21 and 42 of depletion. The same parameters were measured to assess reversion of the damage.

    Those who completed the 42-day depletion phase without the development of hepatic steatosis were put on a diet providing 550 mg choline/70-kg bw per day for 3 days and then discharged. Choline-deficient subjects were put on a diet with stepwise increases in choline intake, in sequential 10-day periods of 137.5, 275, 412.5 or 550 mg choline/70-kg bw per day. Those who showed signs of organ damage with increases of CK activity > 10,000 U/L were immediately switched to the choline-repletion diet or directly to 850 mg choline/70-kg bw per day or to an ad libitum diet. Status was monitored regularly using blood and urine samples (at screening, day 1, at the end of each dietary phase, and every 3–4 days during the intervention).
     
  20. heyitisjustin

    heyitisjustin Senior Member

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    You also get inositol with lecithin. I think that taken together they help sleep
     
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