The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

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

    Messages:
    337
    Likes:
    469
    @Gondwanaland Same question to you: how does your polyneuropathy do since? same? improved?

    Any treartment ideas?

    is yours axonal or myelin-related?

    thx in advance!!
     
    Last edited: Aug 8, 2016
  2. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,615
    Likes:
    3,595
    I can't have gelatine either - hydroxyproline converts endogenously to oxalate under B6 deficiency
     
  3. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,615
    Likes:
    3,595
    As soon as I felt it coming I took MB12 and it went away. It was numbness and pins and needles in arms and legs when sleeping flat on my back :confused:
     
  4. PennyIA

    PennyIA Senior Member

    Messages:
    719
    Likes:
    1,663
    Iowa
    I did reach out to University of Iowa (closest hospital with lots of research and studies and the closest one that can test me for it)... I've left a dozen requests to be scheduled for testing. All ignored.


    I pass all the criteria for ME/CFS that I have ever found online. So, self-diagnosed... but the doctors ignore me when I present it to them. Admittedly, the one doctor that I'm still seeing said that he's concerned, if he puts it in my chart he knows how other doctors might treat me. It sucks because I don't think discrimination is right and I think having it in my chart has meaning, but it is what it is.

    Yes, simple blood serum test for b6 levels, there's a toxicity range. Good luck convincing them you need it. The 'rule' they tried to tell me was that unless you were taking 300 mg a day, there was no point in testing for it. I proved them wrong.

    No idea. They were dismissive of my symptoms and finally put down in my chart that I had a minor stroke because they never did believe any of it. B6 toxicity has it as a common symptom which is why I called it out to the doctors. When I finally got the positive result I started asking questions about it and if they could test my symptoms further and give me guidance on treatments. I got shrugs and blank stares. Best advice given (ha!) was to not take B6 any more.

    I've since asked for the stroke to be removed from my medical chart since it was proven incorrect... but never did get the testing they should have been doing all along.
     
    Lolinda likes this.
  5. Lolinda

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

    Messages:
    337
    Likes:
    469
    Interesting. so if I understand you corretly, you did not or not so much have it when standing? That looks like it is blood flow dependent. I am so much interested, because I still have it and it is definitively flow dependent in me.
    It is the worst when I lay on my back AND I am after a meal.
    • lay on back -> less blood in the feet and hands
    • postprandial -> more blood in the belly
    Clearly, neurons need oxygen. But can there be a deficiency really?? it must be sthg like this: there is a natural decrease of oxygen delivery, but the neuron has a difficulty in taking up enough or it has a higher need or less tolerance for small, natural hypoxia. I wished one could measure anything about this to make progress. or there would be some research on this...
     
    Last edited: Aug 10, 2016
    Violeta likes this.
  6. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,615
    Likes:
    3,595
    sometimes when sitting, but mostly in the middle of the night or very early in the morning before getting up, actually I was waken by it :wide-eyed:
     
    Lolinda likes this.
  7. Lolinda

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

    Messages:
    337
    Likes:
    469
    axonal or myelin-related:
    Well, as your symptoms improved already, I dont know how useful all this topic is for you. but I would be curious, because from this I can judge if treatments likely work or not. these are two completely different pathologies that both lead to neuropathy.
    If its not much hassle for you to look things up, I would be curious to know:
    • if your nerve transmission speed was low? -> myelin issue
    • if your amplitude was low -> axonal neuropathy
    both of the above questions apply to electrical stimulation tests.

    essentially, your answer would help me to estimate if your treatment (methylation) would likely transfer to me successfully or not. It seems to be the only way to find out, cause talking to a doctor about methylation.... well .... I guess you know the problem as well as I do :D :eek: :(
     
    Last edited: Aug 9, 2016
  8. Lolinda

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

    Messages:
    337
    Likes:
    469
    he might be not so wrong on that... ME is a risky diagnosis... I see it like thhis: I care a damn thing about what doctors think or diagnose me. I have given most of them up as intelligent / motivated beings. I see them as testing stations. And I utmost appreciate them for that and treat them as well as I can, expressing lots of gratitude, etc. And if they have done well in prescribing me all the test I wanted, then they get
    a) an elegant box of handmade truffees from a chocolatier
    b) a postcard containing some premium chocolate
    c) beautiful art postcards
    d) a positive review in some doctors ratings website
    e) I will add in flowers soon, cause not everyone likes chocolate

    all this is totally Machiaveli style and I am not like that. absolutely not. But I have the right to get help from them, they have the license, and this seems to be the only way. While it works well, I am constantly on the lookout for further ideas to make the system work even better. so ideas welcome :)
     
    Last edited: Aug 9, 2016
    Violeta and Gondwanaland like this.
  9. Lolinda

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

    Messages:
    337
    Likes:
    469
    why dont you get a diagnosis for sthg cfs-like? I collected so far the following:

    - myasthenia gravis (symptoms are the same as ME)

    - pots (if you say pots everyone understands you are talking serious medicine. and they even know it comes with fatigue, bedridden, etc. if you really have a reason to have a diagnosis, you can even fake it. just get a BP meter and make your heart rate go up. there is no way on earth to tell if it is real or not. But the question is if it helps you sthg. in any case, it gets you disability benefits. There is zero immoral or cheating in this as you only get what you would deserve anywise but the medical system is incapable of helping you as it should. So you need to do sthg to "help" the defective medical system... :)
    3 years ago when I made my first experiences with serious undefinable illness and the medical system, I was repeatedly ridiculed, ignored, psychologized. since 2 years no more. they made me learn how to treat them. I have the right that my illness is taken seriously. Dont think badly about me. if you meet me, you meet a smiling honest person who would never do any harm to anyone. but I dont want harm / ignorance to be done to me. No more!

    - eds / marfan (the link to fytigue is well established and accepted)

    does anyone have further ideas?
     
    Last edited: Aug 9, 2016
  10. keenly

    keenly Senior Member

    Messages:
    561
    Likes:
    561
    UK
    wow what you are describing is what I have had using the B12 oils.
    I used one spray on stomach of Hydroxy before. Rubbed in with left hand, left side of my body is aching and tingling now. Hand, foot and ear is cold, arm is aching as if I had a tourniquet on it. I have never had this with injections or sublinguals.

    I received the oils a few weeks back. Used Hydroxy and Mixed B vits oils. The mixed B Vit oils makes both arms go floppy, tingly and cause immense fatigue. VERY SCARY.

    That is why I am selling them. I thought I had a contaminated batch, full of copper or something. I had the negative effects within MINUTES.
     
  11. Lolinda

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

    Messages:
    337
    Likes:
    469
    @keenly good to find someone to share the problem with! In fact, what you describe is the closest from all people who have commented. The closest to my worst experience. it also came very suddenly: within a 3 hours of sleep, I developed a strong and lasting polyneuropathy in the feet:
    - less feeling (sometimes almost none in the ball of the feet)
    - tingling
    - stinging pains
    I also think that this is "very scary", but earned only dumb and passive looks from doctors. One neurologist said she knows about antibodies that cause such rapid things. Nicely tested me for a ton of antibodies, all negative. (if you are interested I can post you the test list)
    While several vitamins cause some neuropathy in me (b6, D, B3), this sudden and big change was caused in the following manner:
    I took a large dose of B1 (75mg). The next day after that I ate fish. After meals I always need to nap. slept 3 hours and woke up with neuropathy. I really wanted to know, so I ate the same fish (a can of sardines and a can of mackerel) a few days later. Again a sudden worsening in neuropathy. Now, the thing is tlat the exact same fish meal I ate literally a hundred times before. So it can not be the fish alone. And I made a big pause after this neuropathy event, then reintroduced fish very carefully, and no problem at all. So I conclude that there must have been two factors, probably the vitamin B1 overdose and the fish.
    And there was already a mild neuropathy before.

    My best guess as to the mechanism is this:
    I have quite some indications that all my not yet resolved issues in general could be caused by mycobacterium paratuberculosis. This bug is involved in Crohn's, but not only,, and a lot of people get neuropathy. These beasts live in intracellular biofilms in the gut. Omega 3 oils that are plentiful in exactly these fishes are effective against biofilms. Also fish have effective antimicrobial chemicals which prevent them from getting rotten inspite of being in water all the time. Add to that that B1 contains a lot of sulfur and such compounds have been shown to increase autoimmunity in some cases.
    Add to this that mycobacteria have a heat shock protein that is heavily suspected to cause autoimmunity.
    So in sum, maybe it is sthg like this:
    The B1 potentiated some not yet found antibodies, the fish killed a lot of mycobacteria, this activated that heat shock protein, all this together caused my neuropathy.

    I can support all the above statements by research, let me know if anything should be of interest. Here for example research on the mycobacterium heat shock protein probably causing autoimmunity:

    M. paratuberculosis Heat Shock Protein 65 and Human Diseases: Bridging Infection and Autoimmunity
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3465878/

    So in sum, there is research but lack of lab results proving any causation in me. Well, in fact there is one finding that is thought to influence neuropathy: I have an elevated chronic activation of the alternative pathway (proven by multiple measurements over years of either
    - a diminished c3c, or
    - a diminished c3 and simultaneously a normal c4.
    Both prove activation of the alternative pathway of complement.)

    If you have any.further guesses of what may be causes in you or me, or you have lab values, or research, let me know! I like being contradicted or read alternative explanations! Hope to hear from you soon.
     
    Last edited: Feb 25, 2017
    sb4 likes this.
  12. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,615
    Likes:
    3,595
    Lolinda likes this.
  13. keenly

    keenly Senior Member

    Messages:
    561
    Likes:
    561
    UK
    YES this is exactly what happens to me! This has only happened since I have raised my lithium levels. This means I can actually transport B12 to where it needs to be. Fredd has mentioned these symptoms before, he would say that means it is working. When I had low lithium, I never had any reaction to B12. I felt great using 30mg a day Hydroxy injections a few years back. In fact those 5 months were some off the best I have ever had. Injected into subcutaneous fat. Muscle injections did nothing. When I cam off them I was back to normal. There was no long term healing.

    There is the train of thought that we are 'waking up' nerves so to speak. I do not understand why within minutes this reaction occurs. Over months I could understand, but this immediate is quite perplexing.

    I really do wish other doctors would take on Cheney's cardiac measurements. I think that it is very effective. Shame the clinic is closed and nobody else is doing it. In theory we could test the reaction to anything. Right now we are basically guessing.
     
    Little Bluestem likes this.
  14. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,615
    Likes:
    3,595
    Do you still use transdermal glycine ?
     
  15. Lolinda

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

    Messages:
    337
    Likes:
    469
    yes. every day 2x. I am curious, you surely have some thoughtful reason to ask? :)

    What I know about it:
    - My HbA1C is perfectvy normal
    - my blood sugar is low normal, and was perfectly normal also before the ketogenic diet

    It is a slow long term process right? And not something that can cause any acute issues after a meal?

    What I do not know, however, if glycation can have forms not excluded by HbA1C? And forms caused by other issues than high blood sugar.

    Curious :):)
     
  16. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,615
    Likes:
    3,595
    Here are my latest results (Aug 2016):
    Fasting Insulin (2 - 8 mU/L) ....................3.20
    Fasting Glucose (75 - 99 mg/dL) ......83
    HbA1C (< 5.7%) .................................5.6
    estimated average glucose ...............114

    I don't usually get post-prandial issues, unless I take sulfur supps (NAC, MSM, Taurine, vit B1)

    I am amazed to get such a dramatic response from an anti-glycation supplement. What is even more amazing is that the effect in both mental and physical energy is the same as from MB12 and Benfothiamine (which were unsustainable and unrepeatable for me).

    I need to try it myself.
     
  17. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,615
    Likes:
    3,595
  18. Lolinda

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

    Messages:
    337
    Likes:
    469
    Just a quick answer, I am not really on PR now, to come back in a few days...


    about carcinine:

    there is really no glycation issue in you ... So, I guess you will have researched all kind of other exlanations for yur effects from carcinine, or?
    I just quickly looked into the research, and it seems like cacinine is a histamine metabolite that can be recycled to histamine via reuptake into neurons:
    http://journals.plos.org/plosgenetics/article?id=10.1371/journal.pgen.0030206
    This is just to say that it does something with neurons and neurons are just generally a good path for searching why a compound causes mental energy. Maybe a better path of research than glycation? If you succeed to end up with any effect to catecholamines, you may have the answer... ... for example, a classical pathway of a long list of drugs that boost energy is inhibiting the norepinephrine (NE) transporter. Think cocaine, think antidepressants, and many other stuff. They stop the reuptake of NE = prolong the NE action at the synapse = more action in the brain and in the muscles.
    (I need the opposit!! Badly! My norepinephrine (NE) easily goes up into she sky (lab tested many times) and I would love to increase the activity of my NE transporter to get rid of the NE. While I have found meanwhile a good arrray of things to stop any overdrivenness fully, it is only balancing the NE by boosting inhibiting/calming/parasympathic neurotransmitters (various tricks to boost gaba, glycine, acetylcholine and serotnine), but not reduce the NE itself. I wish there was a means to increase the NE transporter activity to get the NE away!


    about glycine:

    dont know if you really want glycine. yes, it has a tillion of benefits. I do take it with great benefit, see above. I love it! But the most strong effect I loticed is sedative. I mean this in a positive way: balancing, good sleep, good digestion. it is a funny neurotransmitter that slows the mind but speeds up digestion. BUT after mentioning all these nice things, it is one thing not: it wont give you more productivity. I take it transdermally before a meal and then have good digestion and good sleep. :) :)


    I will now be absent for a few more days from PR. Just completed a marathon of doctor's appointments and need to document all I have learned, make new appointments, etc. Have fun and talk to you soon!
     
    Last edited: Mar 12, 2017
    Gondwanaland likes this.

See more popular forum discussions.

Share This Page