Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
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question about B6

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Sundancer, Feb 17, 2018.

  1. Sundancer

    Sundancer Senior Member

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    GP has tested for some vitamins, B6, B11 and B1 were waay too high.

    as I have had tingling handpalms for many years, GP thinks that is caused by intake of B6 and told me to stop the supplement. I did.

    I've been searching for info.

    I took a Bcomplex with 10 mg of B 6, that's not very high. And its P5P (pyridoxical5phosphate).
    even though it is sometimes thought that B6 as P5P will not cause tingling/neuropathy, there's not proof for that. So the assumption that the tingling is indeed caused by too high bloodlevels is probably valid.
    several things pop up with me.

    but the question is, why does my body not use the stuff...

    1) the body misses some key-ingredient to use it ( my intuition says zinc, yay, but that's just intuition...).
    when googling I find things like: Vitamin B2, B3 and zinc are needed to convert pyridoxin into P5P. But as I take it as P5P that doesn't help me.

    2) the stuff is in my blood but does not go into the cells. ( why?)

    3) I've started taking B12, shortage of methylcobalamine does explain the high folatelevel I think. (very new to the methylation-knowledge, reading diligently, but my what an amount of complex info) But is the same connection to be found with B6??
    seeing that Myhill ( who follows the protocol of Richvan) prescribes 2 x 50 mg P5P, i think it is)

    I suppose it is a combination of these, plus who knows what, any information on this topic would be very welcome.

    ( oh, and since I take metcob, the soles of my feet started to tingle too. Might be coincidence, might be that I'm more aware of what goes on in my body, might be...what :confused: ???
     
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  2. liverock

    liverock Senior Member

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    Getting a build up of B vitamins in serum is generally due to MTHFR genetic mutations preventing conversion of non active to active B vitamins.
    You need to take it slowly if you are moving to active B vitamins especially folate and B12 as they could cause overmethylation problems.

    If you haven't already done the 23&ME test it best to do so before attempting methylation treatment.

    https://www.easy-immune-health.com/vitamin-b6-toxicity.html

    @caledonia has information on how to start methylation and pitfalls to avoid.

    http://forums.phoenixrising.me/index.php?entries/caledonias-methylation-and-mercury-links.1744/
     
    Last edited: Feb 17, 2018
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  3. andyguitar

    andyguitar Senior Member

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    The tingling sensation could be caused by many different things that have no connection to vitamin B6. 10mg of B6 is not very high. But why not try a much smaller dose for a month and see how you get on?
     
  4. Sundancer

    Sundancer Senior Member

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    thank you @liverock , totally unaware of any MTHFR gene I started 3 months ago with methylcobalamine as lozenges, It worked wonders for me. Brainfog much less and so I arrived here on PR. Reading much, I agree that it is a probable cause, looking back at my life, the issues I've always had.

    3mg was too much so I reduced back to two and will keep it at that for now. I thought it was a sort of very bad PEM, but having read a little more, now think it was due to overmethylating

    But I do not understand the conversion thing, as the Bcomplex I took had folate and P5P in it. Not folic acid and 'normal' B6. Or is there another conversion that can be stumped due to genetics?

    btw, last time he tested ( last year) folate was too high too ( > 45) I asked him to test again, as their was someone coming to take blood for thyroid.

    I thought it would simply be waiting until those blood-levels are normal again and then in tandem with B12 slowly building up the amounts of folate and B6 I take, but when I get you right it's more difficult then that.

    I feel much better now with the methylcobalamine, I added adonesyl too, I found that gives a little more energy in the muscles. For now my plan is too very carefully ( supersmall doses) add zinc and molybdenum. In both I suspect a deficiency. So when I react strongly that may be the methylation getting faster.

    I stopped the intake of both folate and P5P and want the GP to test again in some weeks.

    yes, I do want that. But out of money. Trying to get a loan from the bank, have a reasonable good chance but to understand all those financial things is difficult for my brain. Need to find some help for that.

    And then looking for someone who gets this methylation-thing and can help me...that's not easy over here. I found one doctor, she has a waiting list of a year...I do not want to wait a year.

    yes I had found that, and lost it again.....

    reading through the link you gave, if I do have that MTHRF thing, I will have to go on taking P5P even when bloodwork says it is too high, do I understand that right?

    like what I said as second possibility, the stuff is in my blood but does not go into the cells.
     
    Last edited: Feb 17, 2018
  5. Sundancer

    Sundancer Senior Member

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    Thanks @andyguitar

    When I found how B12 helped me ( the difference is amazing, I can sleep!! real sleep, that's restorative, I feel refreshed in the morning since a few weeks, and my brain works much better, and I'm less given in to emotional PEM, it works real wonders, more quality of life and hope that there is more development in the nearby future)

    I realized that this deficiency has been building for many years, so I thought it a likely reason for this tingling. The GP came along with his bloodtests and that B6 toxicity is another possible cause, I think he's right in that too.

    Then I've been thinking back when it started, that's many years ago now. But I think it started some months after I started with a cheap Bcomplex, that was when my health and energy started to go south all of a sudden. The better Bcomplex I have used now for about two years now.
     
    Last edited: Feb 17, 2018
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  6. caledonia

    caledonia

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    Just popping in so you can see the link to my methylation info (the link is in my signature below this post).
     
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  7. Sundancer

    Sundancer Senior Member

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    thanks, for all the info nicely put in one place.
    I'll tread carefully
     
  8. alicec

    alicec Senior Member

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    MTHFR catalyses the formation of methyl tetrahydrofolate (MeTHF) from 5,10 methylene THF. The MeTHF is then used in the methionine synthase reaction to form methionine from homocysteine (B12 dependant).

    If this whole system is not working well then possibly it might result in poor uptake of MeTHF from the blood.

    It has no effect on the metabolism of other B vitamins such as B6
     
  9. Sundancer

    Sundancer Senior Member

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    thanks @alicec , that is how I had understood it

    so my conclusion that ' folic acid' ( L-5-Methyltetrahydrofolate it says on the bottle) in the blood can be too high due to the fact that methylcobalamine was insufficient to get the cycle going was right. And now it should lower due to the fact that I now do take methylcobalamine ( and that I feel it working :))

    and the other B's too high have other reasons,

    then the question of my thread still stands, why does my body not use the B6 (as P5P) that I give it to help getting well?
    On the other hand, the site that @liverock posted https://www.easy-immune-health.com/vitamin-b6-toxicity.html
    says

    This is the biggest jigsaw puzzle I ever had....
     
  10. alicec

    alicec Senior Member

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    Your GP is misinterpreting what is known about B6 toxicity.

    Very high levels of supplementation (several hundred mg) are sometimes associated with neurotoxicity, though not always. Doses of 10 mg do not cause toxicity.

    Furthermore, the studies that have looked more closely find that the neurotoxicity issue seems to be associated with high levels of pyridoxine (the usual B6 supplement) rather than other forms such as pyridoxal, and that pyridoxine interferes with the action of P5P. Consequently, the effects of high doses of pyridoxine are more like B6 deficiency.

    Even though P5P is the active form of the vitamin, this is not the form taken up into cells. For P5P in the blood to be used, alkaline phosphatase is necessary to remove the phosphate group because the B6 transporter carries only the unphosphorylated form. Once inside the cell, a kinase enzyme puts the phosphate group back thus making the active vitamin again inside the cell (where it stays since the transporter won't carry it out with a phosphate present).

    Before this, in the gut, AP activity is also necessary to allow phosphorylated forms of the vitamin from food and supplements to be absorbed. The liver then makes the active phosphorylated P5P and dumps it into the blood where it is available for uptake by cells, after appropriate processing.

    There is small amount of evidence suggesting an alternative pathway which allows direct uptake of the phosphorylated form, and possibly in some circumstances this could be important.

    For this processing system to work well several things are needed most notably magnesium and other minerals. Boron is said to be particularly relevant to alkaline phosphatase though I can no longer recall the exact link.
     
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  11. Sundancer

    Sundancer Senior Member

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    oh thanks @alicec

    yes, I agree with that, but he seems to want to listen to me, take me serious. He's all the doctor I have. I did ( as a hunch) not believe it either, but now searching for the answers.

    that is what I was looking for, I wonder whether my GP even knows about the difference, sad I cannot read the whole article but the abstract is clear enough.

    thanks to this information I found a dutch site that I trust telling me that for this enzyme to work zinc and molybdenum are needed. Both are on my list to slowly titrate. Both I have a strong hunch that I am deficient.


    both gut and liver are not functioning as well as they should be...:(

    see, there'a always hope :)

    just added the boron to the mixture, seems to go well.

    I did have a scare some days ago due to adding selenium, sudden symptoms like the startup of a heart attack....brr...so next day I did not take methylcobalamine or selenium. yesterday I started to take a much smaller dose of selenium + the usual dose of methylcobalimine. Seems to work well. So I have to be very careful adding those missing minerals.

    (I now think along the line of first add selenium/molybdenum/calcium/zinc, maybe others in small doses ( like an eight of the daily dose) then go through them all again, upping to a quarter a dose etcetra. I need a better thing to jot it all down, the way I do it now I have not enough space per day for it.)


    From the little that I understand of methylation by now, you should be careful to not have too much methyl-donors when adding the minerals that may kick you into overmethylation. Therefore I thought it useful to stop taking folate until my bloodlevel are back to high normal, then slowly adding folate back to the mixture.

    Same for B6, just seeing what happens with the blood-levels, when they start to fall quickly, the high level would be due to methylation not working properly. When they do not fall quickly your information is the answer.
    probably both mechanisms are compromised, but thanks to you another piece of the puzzle has been laid :thumbsup:.

    Plus, that way not only I but also GP can see what happens, I do need him to believe me so he will go on measuring bloodlevels. I did find one dutch doctor that guides patients through the methylation, she has a waiting list of a year...

    I'll just go on, grateful for you all, the knowledge and friendliness over-here, you're all angels :angel:.

    and I slept so well the last two nights, it is a wonder :balloons: thanks to B12 I'm starting to function again
     
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  12. Carl

    Carl Senior Member

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    I did read somewhere but cannot now find it, that high dose B12 can cause circulatory problems, at least in diabetics who consume more than 1mg/day.

    I found something on wikipedia in around 2014/2015 which was later removed by someone which stated, taken from the wikipedia history of edits:

    "High-dose administration of Vitamin B12 has been additionally validated to stimulate the activity of the body's TH1 suppressor T-Cells, which then down-regulates the over-production of the allergen antibody IgE in allergic individuals."
    <ref>{{Cite journal|author=O'Conner, Richard D. M.D. |title=FDA investigational New Drug IND No. 30,488|year=1990}} (link needed)</ref>

    Revision as of 00:17, 16 May 2015 (edit) (undo)
    CandleInTheDark (talk | contribs)
    (→‎Medical uses)
    CandleInTheDark is most likely a drug company rep or supporter.

    The only valid reason for removing this helpful information was that there was no supporting link to any supporting research. I have verified that it works so it must of come from somewhere which has been suitably buried.

    This sounded just what I needed because I produce a lot of IgE against the foods that I eat having been tested for IgE against everything that I was currently eating. I started taking Methyl B12 and ramped up to 20 - 25 mg/day. I slept better like you and reacted far less to foods. The very strict way that I had been eating for years, not challenging my immune system by changing foods and even eating at specific times which allowed far more normal function without the exhaustion which still occurs whenever I change foods. While doing that I was walking several miles sometimes as much as 5 miles per day. No PEM, no pain, no brain fog but a shifted body clock. High dose B12 did correct that and allowed a slightly more changeable diet without provoking joint pain.

    The downside was hardening of the arteries and a rise in blood pressure. It seems that taking high dose B12 causes a dramatic rise in requirement for Vit K. It's like everything in supplementation, mess around and it causes imbalances. I am attempting to reverse what was created and I have significantly lowered my B12 to less than 1mg/day.

    You can read the full article ;)
    http://sci-hub.tw/

    PMID use the number below
    28716455
     
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  13. Sundancer

    Sundancer Senior Member

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    Thanks for the warning @Carl , I was not planning on taking so much of the stuff, and as for now I cannot handle more then 2mg of metcob. So I'll keep it at that for now.

    strangely I do not have food allergies, they've tested the most common ones, because of obvious symptoms, but can't find anything useful in the blood. So it's intolerance, and I live on a pretty restricted diet.

    were all different.
     
  14. 1gooddog

    1gooddog Senior Member

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    Hello all: Possibly a strange question, but how do you all know when your liver is involved? When I had mono at 19 (I am now 70), my doc palpated the liver enlargement and told me to eat a lot of steak and eggs. No problem, lol. Since CFS emerged in 2007 I generally get an unwell feeling and aching in upper abdomen under lower ribcage with severe relapses, as in the past few months. Quite severe yesterday evening and I will be in bed today. I am now having that frequently, including area higher on left side under ribs - spleen? During these relapses I still get loss of appetite and weight loss so, if nothing else, I push beef and eggs and spinach. Just for the high nutrients. And I have to be so careful since I am on Coumadin - they test weekly because it is so erratic. Also my cholesterol was higher than my PCP had ever seen. Wondering if this could be from liver issues?????

    In 2007 I was dx with B12 and D3 deficiency. Docs said I lacked the intrinsic factor to absorb B12. A type of anemia. Gave myself weekly and monthly injections of B12 for a year or more. Now they say it is normal. Going back to oral supplements as they say I no longer have that anemia. It is all so crazy.

    I read an article this morning on EBV connection to CFS. I told my husband it could not have been written by a US doc. They spend more time and money treating the common cold than they do something that can affect someone for the rest of their lives.
     
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  15. Sundancer

    Sundancer Senior Member

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    Hi @1gooddog , I dunno..I mean, my former GP always told me there is something with your liver, even though bloodtest does't show it. The therapist that helped me from bedbound to housebound also told me that there is something wrong with the liver. He says liverphase 1 is too fast for liverphase 2 to keep up. Thereby making me ill. You'll have to google that, or look on this forum. Many of my sources are in dutch.

    and my new GP wanted to feel how my belly is doing and told me the liver is slightly enlarged...
     
  16. 1gooddog

    1gooddog Senior Member

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    From past experience and what I have read liver definitely involved along with spleen.

    Someone posted why B6 not working. I believe the reason we feel something is working and then not is because of the remitting relapsing nature of this disease.
     
  17. liverock

    liverock Senior Member

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    Most people on PR who have high B6 (even those not supplementing) is probably due to the buildup of B6 caused by low cortisol prevelant among PWME.
    Adequate cortisol is needed for alkaline phosphatase to allow B6 to eventually enter cells

    .https://www.ncbi.nlm.nih.gov/pubmed/4301410
     
  18. AndyPandy

    AndyPandy Making the most of it

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    @Sundancer I had high levels of B6 too. There were posts a few years ago on PR discussing this topic.

    You might like to do a search.
     

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