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PN from low dose b6
This article discusses PN caused my low dose b6 supplements https://www.cureus.com/articles/199499-vitamin-b6-toxicity-secondary-to-daily-multivitamin-use-a-case-report#!/
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Hello, bb0753 (@bb0753)
You're probably already familiar with the difference between Pyridoxal 5 Phosphate (P5P), the active, water-soluble form of B6, and Pyridoxine Hydrochloride, the kind of B6 that occurs in food and supplements, and how each kind of B6 relates to our PN.
When my neurologist suggested I try a regimen of EB-N5, a medicinal food containing P5P, for my large fiber PN, I was at first alarmed––Was I about to overdose on B6? He and I discussed this at great length (and Connect moderator John sent me some easy-to-understand literature), putting my concerns to rest.
I've now been using EB-N5 for 150 days and, although I still have PN, my symptoms are manageable and do not seem to have progressed. Is that due to the EB-N5, entirely or partially? That's hard to say. However, when I saw your topic, I thought I'd at least mention this.
Cheers!
Ray (@ray666)
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6 ReactionsHi, Ray, Do you know if EB-N5 is the same recipe as Metanx? And do you still have the link to the information that John sent you regarding the difference in P5P and Pyridoxine Hydrochloride? Thanks! Mike
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1 ReactionHi Mike, Here’s the link to my post in Ray’s other discussion - https://connect.mayoclinic.org/comment/930576/
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2 ReactionsYes Ray I'm familiar with research that shows the difference in the types of b6. However most multivitamins contain the b6 that causes neuropathy not the p5p b6. Also energy drinks and breakfast cereals and bars also contain the type that causes neuropathy. If the RDA for b6 is 1.3-1.5mg for most adults just imagine how many people may be experiencing idiopathic neuropathy from this synthetic b6. It is so easy to get the RDA of b6 from natural foods. I don't understand why the FDA allows this synthetic ingredient to be added to breakfast foods, energy drinks,protein drinks, ensure etc. None if these have p5p they have the synthetic b6. Many with idiopathic neuropathy may unknowingly feeding their neuropathy with multivitamins etc
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1 ReactionSo, John, IF I am interpreting the medical jargon correctly, P5P is less likely to cause B6 Toxicity than Pyridoxine? My podiatrist put me on Metanx a month ago, and I was concerned since I saw that it contained B6 and I had read so much about B6 toxicity causing neuropathy. But I had just had my B6 plasma levels checked by my PCP and my B6 was at a very good spot. So I have been taking the Metanx, and it "seems" to be gradually making a difference. I understand it may take up to 3 months to feel the full effect. In the meantime, I am planning to have my B6 level re-checked after a few months.... just to reassure myself. This disorder is so complicated and each of us may react differently to the treatments offered ... with some, sadly, having no reaction at all. Thank you for sharing this information!! I am SO glad that I found this group! Mike
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2 ReactionsMike, glad to hear this seems to be helping. Let us know what symptoms you see improving as the months go by. Best wishes.
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2 ReactionsHi Mike, My takeaway from reading the article was that the P5P is more readily absorbed and used by the body up to 10 times more, if I remember correctly, than the regular vitamin B6. That's great news that the Metanx seems to be helping. Looking forward to more updates of progress for you.
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2 ReactionsHi, Mike– I see John has sent the link to the article I mentioned. No, I don't know if the rice for EB-N5 is the same as for Metanx; I must plead total ignorance of Metanx, but I will do some digging. Thanks for mentioning Metanx. Here's wishing you a good Tuesday! –Ray
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2 ReactionsHi, Mike
Insanely, perhaps, I see two different neurologists in two different clinics, miles apart. The one neurologist is the one who suggested I try the EB-N5, and who consulted with about my B6 concerns, putting my concerns to rest. Then a few weeks ago, I had a routine follow-up with the other neurologist and, naturally, I brought up the question of B6 and toxicity. She ordered fresh labs.
(By the way, each neurologist knows I see the other; they're friendly colleagues.)
The labs came back showing my B6 as HIGH: 99.4 against a reference range of 3.4–65.2. With the blessing of both doctors, I'm currently doing a six-week "experiment": cutting my daily EB-N5 dosage in half, after which I'll get more labs.
A side note to all this: I'm five months into using EB-N5. Recently, my PN symptoms "seem" to have lessened. Have they? Or is it just wishful thinking? My mentioning this here is the first and only time I've mentioned it. I'm not telling friends, not even my partner, for fear of jinxing a good thing. 😀
Ray
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4 ReactionsRay, I'm so hoping it is working!! Best wishes for healing
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