The 12th Invest in ME Research Conference June, 2017, Part 2
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Polyneuropathy from small amounts of vitamins, b6 b1 b3 ...: loss of feeling in feet, pain, tingling

Discussion in 'Peripheral Neuropathy' started by Lolinda, Jul 19, 2016.

  1. Lolinda

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

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    This thread is to collect discussions on the phenomenon that normal supplemental amount of vitamins cause polyneuropathy symptoms. For example take 2-10 mg B6 and you get tingling in the soles or even some reduction of feeling. While it is well-known that 500mg or more of B6 over years cause this, it is not so clear what can cause the same in some people who took rather normal supplemental quantities for short times such as for example 10 days.

    @dannybex @Gondwanaland my kind invitation to this thread. anyone else too! :)
     
    Last edited by a moderator: Jul 19, 2016
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  2. dannybex

    dannybex Senior Member

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    It's a very complicated subject, and no doubt answers will be different for different people.

    Here's a link where @PennyIA found benefit from folate, along with a study I posted which suggested that b6 lowers 'folic acid':

    http://forums.phoenixrising.me/inde...b6-and-feeling-funny-help-please.34126/page-2

    I've seen other reports where some have found it went away with high doses of B12. And there's the quinolinic acid theory I posted on the other thread (due to low niacin/b3), plus theories that people who have heavy metal burdens have problems processing or converting b6 to p5p...on and on and on.

    It's quite common. Here's a link where hundreds reported problems with even tiny doses (as we've experienced):

    http://www.medhelp.org/posts/Nutrition/B6-Toxicity/show/2642?page=1

    You might find some answers there as well. That's where I first heard about the quinolinic connection.
     
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  3. dannybex

    dannybex Senior Member

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  4. Lolinda

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

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    thanks a big lot @dannybex for all these useful things!

    so just for completeness / anyone reading this thread, the original post was:

    currently my bet is on this for my own issue as my urinaryquinolinic acid was hugely elevated in the past (measured at a time when I did not supplement with B6). I am awaiting my new results currently, again measured w/o B6 supplementation. If it is again so big then it is plausible what harm I caused to myself by taking B6.
     
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  5. PennyIA

    PennyIA Senior Member

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    I tried to do a quick search to find something that might back up the Lysine angle. That's something I took in the past (cold sores) and didn't have a negative reaction to it... so, hey, if I could find something that would be awesome. I found several references that called out that B6 is helpful for lysine intake (not the reverse)....

    While I was digging I found someone else claiming to know how to help people with b6 intolerance..

    http://mthfralliance.com/2014/02/03/why-b6-is-the-queen-b/

    She's a big proponent (if you can't tell by the title)... in the comments someone asked what to do if you can't tolerate even tiny doses:

    • Kelly
      2 years ago · Reply
      What about those of us who if we take almost any amount of B6 or p5p, we get almost instant neuropathy — even at tiny doses?
      • [​IMG]
        Donna JohnsonAUTHOR
        2 years ago · Reply
        Often B6 intolerance is a sign of Zinc Deficiency and/or Copper Toxicity (the phosphorylation of B6 to P5P is a Zinc dependent step). B6 intolerance could also be a sign of severe Magnesium Deficiency – they need each other at a ratio of 1mg B6 to 2-3 mg of Magnesium on the 56 enzyme pathways that depend on sufficient B6. You might want to start with our “Magnesium 101” article, ramping up your Magnesium intake for 1-2 months first, before attempting B6.
    Magnesium, that I've heard before. I can't tolerate it in supplement nor transdermally - but the epsom salt baths were started around the methylfolate start which is the first time I managed to subdue most of my b6 toxicity symptoms.

    Tested since as not magnesium deficient... but every bath proves to me it's something my body needs as it reduces my chronic pain dramatically.

    Not sure if the rest of this is meaningful, but I may dig into some of it more when I have more time.

    EDITED... did a little research and can confirm that while zinc deficiency contributes to an inability to convert b6 to p5p, that there is probably little evidence of an issue with zinc if you are taking p5p and are still intolerant/develop toxicity from low doses of p5p. It seems like zinc deficiency and b6 deficiency are linked and that zinc helps 'use up' available stores of B6. So, now I'm curious that if someone found out they were toxic on B6 (not p5p) if supplementing zinc (even if not deficient) could help clear it out?
     
    Last edited: Jul 21, 2016
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  6. Lolinda

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

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    papers for the B6 intolerance - quinolinic acid connection:

    I link here fulltext / screenshots of the papers @dannybex is referring to, so we have everything relevant accessible from this thread

    the main study:
    http://forums.phoenixrising.me/inde...complex-and-minerals.25743/page-3#post-744441

    further studies:
    http://forums.phoenixrising.me/inde...complex-and-minerals.25743/page-2#post-744439

    If anyone is interested in further readings, I have an ebook detailing all aspects of the kynurenine pathway of tryptophan metabolism, which produces this quinolinic acid. this is pretty voluminous scientific stuff (americans call this a doorstopper, I think :) ). the kynurenine pathway goes up in variousest pathologies. I am happy to share the book in private conversation with anyone but do not want to link it here in public for copyright.

    I will also post soon a partial solution for the B6->neuropathy problem, will test it for a few more days before that.
     
    Last edited: Jul 23, 2016
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  7. dannybex

    dannybex Senior Member

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    It may take months to resolve the problem (lower the quinolinic). Just FWIW. :)
     
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  8. Lolinda

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

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    why? - I am curious :)

    this is very useful info. often, whatever treatment one tries for whatever issue, its so difficult to know how long one should hope for an effect...
     
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  9. Lolinda

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

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    useful point! on a first go, I wanted to answer "I am supplementing zinc but I still get polyneuropathy symptoms from higher intakes of B6". But wait. I take the zinc (pepzingi, largely the only pill I tolrate, taking everything else incl B6 transdermally) only when I have a low intake of zinc and high copper that day (I know because crono tells me) --> achieve a good zinc:copper balance.

    I would volonteer to try, do you have a guess how much zinc on how much B6?

    Nevertheless, I have a concrete hint that your point has merit, but maybe not for B6->polyneuropathy but for zinc:copper balance. I will tell things in detail, if you like a bit of a story:
    A year ago or so, I did not know much about the copper zinc balance. I have been eating a low carb paleo, meaning no bread, pasta, etc, but lots of salads etc (and lots of fat and meat). While I profitted greatly from the diet, I wondered why I have sometimes sthg I call "speed". Kinda restless energy. when its extreme then it is racing thoughts. When its mild, its produktive but still an unpleasant state of overdrivenness. I went as far as consulting a shrink and all kind of BS he told me just nothing helped much. Then I read about zinc:copper balance. If you are low on zinc and high on copper, you get the racing thoughts. logged my foods on crono. yes,sometimes low zinc, high copper. comes from the lots of veggies. took prolaprezinc to balance out. speed / racing thoughts GONE.

    Now, guess what? When I took B6 recently, I got: speed! again. I was unable to understand, double checked crono, all fine. It was your post that helped me right now to understand. -> happy!! thx!!
    ---> yes, at least in me, taking B6 causes a zinc deficiency. (at least when judging by symptoms)

    If you are interested, I can dig out the research on zinc deficiency & racing thoughts.

    All this does not exclude that the neuro damage from B6 could be prevented by more zinc. I am curious enough to do a small careful try. At the other hand, I have to think about it because I have difficulties to believe its zinc deficiency. Just think about the millions of people who are zinc deficient, the millions who supplement B6, and all the neuro researchers who would be eager to publish such a finding. ... -> The big reason for B6->neuropathy must be elsewhere or at least an additional reason. e.g. quinolinic acid.
     
    Last edited: Jul 21, 2016
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  10. dannybex

    dannybex Senior Member

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    I suppose it depends on the amount of damage done. It takes time to repair that, to replace it w/new cells.

    Things are always complex, complicated, and other factors like infection may be playing a role as well. This in vitro study showed that B6 was one of the essential nutrients required for the growth of strep:

    http://iai.asm.org/content/42/1/414.full.pdf

    So that could be another possible reason for reactions to B6.
     
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  11. dannybex

    dannybex Senior Member

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    Zinc -- even though I was deficient a few years ago -- seemed to make things worse for me. My feet would be colder, more 'bloodless'. Not sure why, but I think I've read that it blocks iron, and also there's a zinc-copper interaction...
     
  12. Lolinda

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

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    I couldnt agree more. Adding to this, researchers use b6 and various other b vits to grow biofilms in the lab. its standard ingredients in biofilm growing media. so if we eat b vitamins, we are a lab growing biofilms :), and for sure these wont be nice healthy biofilms :eek:

    question: while I understand that this can cause reactions to B6, can it cause neurological reactions?

    In case of pathogens inhabiting the gut I can confirm this:
    lots of bad microbes in the gut produce neurotoxins to inhibit peristalsis, which is to their advantage, so they can fiest on the food. also, they do not get pushed out by powerful muscular contractions.
    whats unlear to me: if they can cause polyneuropathy. I think so and I had experiences consistent with that. But I havent found yet papers on this.

    I do have SIBO. to avoid feeding gut based pathogens, I stopped taking any vitamins orally. I always had issues with that, though sometimes it was not obvious for quite a while that this was the cause and it took me months to find out. I summarized all my experiences here, kinda mini-guide to transdermal vitamins and minerals, including very rough estimates for resorption time and rate as well as transdermal products:
    http://forums.phoenixrising.me/inde...complex-and-minerals.25743/page-2#post-743764
     
    Last edited: Jul 23, 2016
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  13. Lolinda

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

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    LAB LIST FOR TESTS RELATED TO NEUROPATHY CAUSED BY VITAMINS

    Would anyone like a lab list for these problems? I collected a first few things here. If you have additions, send me some and I put them into this post, so we have it all in one place.
    I will keep updating this list. currently there are gaps - as you can see. :)


    Labs

    GPL - Great Plains Labs, USA
    - they are well prepared for receiving samples from allover the world. the urine is usable for up to 3 days shipping which allows sending by normal fedex international priority from anywhere. in addition, they have direct flights from many cities of the world. this means 24h shipment at no additional charge. fedex will tell you if your city or any city nearby has this. I was lucky and they got my sample in 24h to GPL.
    - their OAT (urinary organic acid test)
    http://www.greatplainslaboratory.com/organic-acids-test/
    costs 346 USD incl shipment from Europe + some 50 or so USD shipment of testkit to Europe. it features a huge number of items, among others quinolinic acid and 5hiaa

    Ganzimmun, Mainz, Germany
    - they are well prepared for sending in samples from allover Europe. in many countries they even have testing centers and collaborating doctors.
    - their urinary kynurenine & tryptophan test panel features also quinolinic acid ("chinolinsäure") and 5hiaa. it costs 100 Euros. + a few years ago when I got tested, the shipment was some 50 Euro across Europe
    http://www.ganzimmun.de/seiten/test.php?tab=1&test_id=1435

    Prof Plecko, Kinderspital Zürich, Switzerland
    - they are leaders in testing and treatment of inborn errors of B6 metabolism. Their trick is: they test for all the many less known B6 vitamers in blood and from that they can infer what kind of B6 metabolic defect a patient has:
    https://www.thieme-connect.com/products/ejournals/abstract/10.1055/s-0034-1390552
    - see below in the lab tests.

    Spectracell
    - test for vitamins in wbc:
    http://www.spectracell.com/clinicians/products/mnt/
    - cost: 390 USD + some 120 or so Euros shipment from Europe
    - stupidly, they do not give you their fedex number, which would allow for cheap rates. you have to pay full fedex rates. jerks.
    - the test is only valid if it reaches Spectracell within 24h. So if sending from Europe, you must send it off from a city that has a direct fedex flight. this will deliver within 24h, at normal international priority rates
    - for details on why to test, validity, etc, see below in the lab test list.


    Lab tests


    quinolinic acid.
    !!! insert dannybex reference!!!
    while the total value of quinolinic acid will be what causes neurotoxicity, I find the urinary quinolinic acid : 5hiaa ratio useful in finding pathology.

    kynurenine : tryptophan ratio ( in urine??? ). this is the established scientific measure to determine if the kynurenine pathway is excessively activated. This is the pathway that produces among others quinolinic acid.
    !!! diagramm !!!

    B6:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/#R34
    "Vitamin B6 deficiency can be detected by direct assay of blood or urine. Pyridoxal phosphate can also be measured in the blood. Nerve conduction studies reveal severely reduced sensory nerve action potentials with preserved CMAP. Sural nerve biopsy confirms axonal degeneration of small and large myelinated fibers."

    there are many functional markers for vitamins. it would make a lot of sense to me to measure them, as imbalances in other vitamins could cause b6 related neurotoxicity. these functional tests measure not what is just in the moment swimming around in the blood, but what is really available to metabolism.
    open question: For most of these its a challenge to find a lab. if you know a lab, please send me!
    see the attachments to this post for the list.

    urinary vitamin testing:
    for the same reason as mentioned above, one could measure urinary vitamin excretion. at least for water soluble vitamins this should make sense. I dont think the body pees out vitamins if there is a deficiency.
    open question: unfortunately I have no further knowledge on urinary vitamin testing, no labs and no papers
    (the GPL OAT contains a very few vitamins)

    test vitamins in cells.
    again for the same reason of vitamin imbalances reinforced by b6 intake.
    I only know of Spectracells wbc vitamin test, which has a largely positive discussion on quora:
    https://www.quora.com/How-legitimate-is-SpectraCell-micronutrient-blood-testing
    and some papers partially backing it up. having said that, the method is not scientifically proven at all.
    open question: any further vitamin tests in cells? any papers, for example if vitamin status in one cell type can extremely differ from vitamin status in another cell type?

    toxins from the gut inhibiting uptake / utilisation of B6
    test: urinary arabinose, available from many labs, among others, GPL
    Dr Shaw from GPL mentioned somewhere that this by-product of Candida inhabiting the gut inhibits the uptake of B6. dont know any more if uptake in blood or cells. Didn't care to find any sources to validate this statement as my arabinose is sometimes normal, sometimes only moderately elevated at a level that so many people have who do surely not have my issues.
    open questions: are there other gut-derived toxins inhibiting uptake or utilisation of vitamins? any chance this causes neuropathy (e.g. by causing vitamin imbalance or by causing buildup in neurons and deficit elsewhere)?


    test for SIBO, low gastric motility and slow total gut transit time:
    bad microbes in the gut that eat your vitamins before you get any. some produce neurotoxins. these neurotoxins slow down peristalsis, which helps them. peristalsis is the best defense of the gut against microbial overgrowth, because it moves them out.
    !!!reference!!!
    so producing neurotoxins is a very good strategy for them.
    !!!insert here link!!!
    open question: can such neurotoxins cause polyneuropathy?
    what I know however for sure is that all my polyneuropathy issues started with taking B1 orally (the probably last time in my life I took a vitamin orally!!) and then, 2 days later, taking stuff that kills gut microbes caused neuropathy within hours. I tried it out repeatedly to make sure which vitamin caused it and if it is really killing microbes. it is killing microbes, I tried different things. and it is really b1. only since this initiation, I became sensitive to B6 (without any killing of microbes. and it comes immediately within 1-2 h after taking it), unfortunately also transdermally, but only if taken in bigger than minuscule doses. I had however quinolinic acid issues, minor polyneuropathy signs, diminished gastric motility and SIBO already years before.

    strep needs B6 for growth. thanks to @dannybex for the link
    http://iai.asm.org/content/42/1/414.full.pdf

    the following has nothing to do with polyneuropathy, it has to do with why one may need more than an RDV of B6:
    inborn errors of B6 metabolism
    the probably best list, grouped into categories of B6 problems:
    http://www.ncbi.nlm.nih.gov/pubmed/16763894
    a testing method for inborn errors of B6 metabolism:
    https://www.thieme-connect.com/products/ejournals/abstract/10.1055/s-0034-1390552
    now, they are epilepsy researchers and so their patients suffer from epilepsy. however, neither the genes nor the b6 metabolism errors have anything to do with epilepsy directly. these are simply errors that lead to low serotonin via inhibition of b6 metabolism.
     

    Attached Files:

    Last edited: Jul 25, 2016
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  14. dannybex

    dannybex Senior Member

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    I would think that the B vitamins, no matter how you 'take' them, would still get to the gut, although maybe not as quickly if they were taken orally.

    It's worth noting that many other things help build biofilms (minerals, glucosamine, etc) and also that biofilms also "protect" good bacteria. The gut lining itself may be a form of a biofilm...?
     
  15. Lolinda

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

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    Yes, but then they are in the blood. that is, on "my" side of the gut epithelium and not on "theirs".
    indeed, in particular Ca holds together the biofilms. thats why I never take any more any minerals as supplements. they are too accessible for the microbes. certainly, if I eat sthg that contains Ca, thats the same Ca. but its less accessible for them, but well accessible for me.
    Yes, but I want to have them where those good bacteria belong: in the colon. and not in the small intestine, where the supplements arrive and whch should be almost sterile.

    Essentially my understanding is that if one eats real food, the availability of the individual nutrients is totally different. A good example is amino acids: they are actually only freed up by the brush border enzymes. that is, in the very last moment before resorption. if you take protein powders, they are free amino acids in the stomach already. so you feed the microbes all the way. I always got horribly bad red eyes from protein powders and never from real food. - its the same amino acids in both, but the availability to microbes is totally different. I guess its similar with vitamins and minerals, although there I am not knowledgeable of the exact process.
     
    Last edited: Jul 24, 2016
  16. Lolinda

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

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    I just red this article on oxalates with a lot of interest. thx for posting!!

    The odd thing is that, I do or did have absolutely all the probs the paper mentions (b6, sulfit/sulfate, methylation, ...). And I have crazily high sulfate-food intake. i simply cant live without that: brussels sprout, garlic, broccoli, daikon, etc etc. just the other day it was 200g of daikon and 150g broccoli :eek: :eek: :eek:

    But never reacted badly to any high oxalate food and from my 3 urnary oxalate tests 2 were normal
    ( and 1 was high but in the same test I had a super high vit C in the pee and the interpretation that came with the test said that vit C can cause high oxalates in the urine. so that is fully explained.)

    hm... so maybe I have sthg like a "compensated oxalate problem", if such a thng exists?? - where much of my b6 is sacrificed for that and where I need to eat copious amounts of sulfur food because of the oxalates... in the end have no oxalates issues at all but a high price to pay for that??
     
    Last edited: Jul 24, 2016
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  17. Lolinda

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

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    here people think that lysine antagonizes serotonin:
    https://raypeatforum.com/community/threads/l-lysine-serotonin-antagonist.6004/page-2
    unfortunately no studies mentioned just really fancy observations.

    hey, wait, I just found a study that proves the point in rats:
    http://www.pnas.org/content/100/26/15370.short

    so, based on this, I wont take any lysine with b6, because I want my gut motility to improve (and gut motility i proves on serotonin). and indeed thats what b6 (->more serotonin) did for me. and this is why I am so interested in all this topic.

    however, all this discussion so far did not find any hint to polyneuropathy.

    if anything then based on the following ssri paper more serotonine will likely help with polyneuropathy:
    http://www.ncbi.nlm.nih.gov/pubmed/24577146
     
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  18. dannybex

    dannybex Senior Member

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    It's my understanding that B6 is needed for endogenous oxalate production. To 'control' it, that is.
     
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  19. dannybex

    dannybex Senior Member

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    Personally I would stay MILES away from the Ray Peat forum, or anything related to Ray Peat. He believes (and is the only person who does) that there is no such thing as essential fatty acids. A nice man yes, but a man who cherry picks his studies, and has the most bizarre 'diet' and rationale for that diet.

    Plus he thinks serotonin is evil, and has several pages on the topic:

    http://raypeat.com/articles/aging/tryptophan-serotonin-aging.shtml

    http://raypeat.com/articles/articles/serotonin-depression-aggression.shtml

    http://raypeat.com/articles/articles/serotonin-disease-aging-inflammation.shtml
     
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  20. Gondwanaland

    Gondwanaland Senior Member

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    • Endogenous oxalate production occurs in the glyoxylate pathway = glycation = diabetes (or "pre-diabetes")
    • B6 is key for insulin sensitivity. However, gluconeogenesis also creates endogenous oxalates, so I believe there is a sweet point for carb intake...
    • Glycation destroys hemoglobin = anemia
    • B6 (and other Bs of course) are key in RBC/WBC synthesis
     

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