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← Return to severe peripheral neuropathy and vitamin B6
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severe peripheral neuropathy and vitamin B6
Neuropathy | Last Active: Sep 6, 2024 | Replies (46)Comment receiving replies
Good morning, Bonnie (@bb0753
Yup, I'm still taking EB-N5, that vitamin combo (or, as they call it, 'medicinal food'), with the P5P B6 you inquired about. I had paused taking it for a month but have now resumed. I had been taking EB-N5 twice daily for a year, but when my supply ran out, and the manufacturer wrote to ask if I wanted a new supply, I decided I would get the advice of my two neurologists. ('Two' neurologists sounds kind of posh. I've ended up with two neurologists purely by accident. One is quite far from home; I had thought to 'drop' him, but both neurologists appear eager to continue working with me; in the end, I decided I'd keep both.)
You may know from other posts I've left that last spring, I came down with a nasty sepsis infection. My particular 'brand' of sepsis, saddling me with a host of sepsis symptoms, also some considerable added balance challenges, challenges in addition to the ones with which my PN had already gifted me.
Up until the sepsis, I hadn't thought EB-N5 had done me any harm (in fact, it may have done me some good; a second EMG showed no progression in my PN). But, because sepsis, along with PN, had made a Mulligan stew of my balance, I couldn't be sure if continuing with EB-N5 was worth it. That's why I sought the advice of my two neurologists––and both recommended continuing. And so I have.
Can I personally endorse EB-N5? Not really. Can I say any bad things about it? No. That's been my experience with PN and the gazillion hoped-for-helpers––pills, ointments, therapies, etc. … you name it––we recognize that we have an incurable disease; nonetheless, we pursue relief––even temporary relief––fingers crossed every step of the way.
My very best to you, Bonnie.
Cheers!
Ray (@ray666)
Replies to "Good morning, Bonnie (@bb0753 Yup, I'm still taking EB-N5, that vitamin combo (or, as they call..."
I was diagnosed with peripheral neuropathy about 1 year ago with foot and lower leg numbness plus occasional body tremors. My neurologist did a B6 test which showed that mine was too high but I was only taking 25 mg per day which is supposed to be safe. The doctor told me to immediately stop all supplements with B6. It took about 3 months but I finally got back to normal and PN went away. The P5P version of B6 is supposed to be less likely to accumulate in the body but if you happen to have the MTHFR gene mutation which as many as 40% of people of European descent supposedly do, your body absorbs too much B6 so it may not be safe to take any version of B6. Also, watch our for fortified foods like cereal because many of them had B6 added to them.
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Thanks Ray for your answer. Yes I am trying various things. I thought my PN was caused by b6 toxicity since my b6 was 5x high normal from taking melatonin for 3 years that had 20mg of pyridoxine hydrochloride (the bad b6) I stopped it in January 2021 but the PN did not go away but actually has gotten some worse with feeling like I have tight compression socks half way to knees. I feel so blessed that I have no pain. Daily exercise seems to have prevented any balance issues. I am currently taking The Protocol 525 that John has spoken about. It has many vitamins but no b6. I've only taken it 1 month and plan to stay with it for at least 6 months to see if it helps. On another website some have said the P5P natural form of b6 has helped them. That's why I reached out to you to see if you could tell improvement. I hope you get healed from the sepsis very soon. Thanks again!!
Bonnie