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EB-N5 and Idiopathic PN: Long-term Usage?
July 1 marked one full year of using EB-N5 for my idiopathic polyneuropathy. For anyone not familiar with EB-N5, it’s classified as a “medicinal food,” available only by prescription. My neurologist, suggesting I try EB-N5, promised no wonder cure, only that EB-N5 might slow, if not stop, the progression of my disease.
Of concern to many is EB-N5’s B-6 content. I, too, was concerned at first until I did what I regard as a reasonable amount of research. My neurologist and the many credible articles I read have helped me to understand that B-6 comes in two “breeds”: pyridoxine hydrochloride, found in small doses in OTC supplements, and may actually worsen or produce neuropathy-like symptoms if taken in excess, and pyridoxal phosphate (P-5-P), which is water soluble and safe even if taken in excess.
Why am I mentioning this now? Some of you might be wondering if, after a year’s usage, has EB-N5 had anything resembling a positive effect on my idiopathic polyneuropathy. I wish I were able to say with certainty yes, it has, or no, it hasn’t. Unfortunately, I can’t give that kind of clear-cut answer. That’s not EB-N5’s fault. In the late spring, I was diagnosed with a rather frightening sepsis infection, an infection that caused my left foot and leg to swell, grow cherry-red, and erupt in a number of open sores. Weeks of heavy-duty broad-spectrum antibiotics did the trick: the swelling and discoloration faded, leaving me only with a long, wide, and deep wound on the side of my left foot. (That wound is now, too, on the mend.)
Having to deal with sepsis for the past three months has left me unable to evaluate EB-N5’s effectiveness. (My sepsis symptoms were far worse than my neuropathy symptoms, making me almost forget that I had idiopathic polyneuropathy.) I suspect I’ll one day soon be out from under the effects of my sepsis and left with having to confront my neuropathy symptoms again. I want to think I’m ready for that.
My question today is: Has anyone else used EB-N5 for a year (or longer), and what results –– good or bad –– did you experience?
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Ed— Just between you and me, Ed (and anyone else who might be reading this thread 🙂 ), I am concerned about possible progression, progression not due to my more recent sepsis but my PN. I've noticed I'm a bit wobblier in the early mornings and late evenings than I remember my being last winter, before sepsis. Might my ol' pal PN have been progressing all this while, under the cover of the sepsis? I have to admit it's possible. I don't like having to admit the possibility, but I'm realistic enough to know I must. As you say, Ed, "time will tell." But enough about me. How are things with you? I was remiss in not asking yesterday. Have you come through this blistering summer no worse for wear? I hope you feel top-notch … as top-notch as we PNers ever feel. 🙂 —Ray
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3 Reactions@ray666 Ray, I imagine not having all prior activity during your struggle with sepsis, could contribute towards your progression of PN. When the neuro doc in 2016 or 2017 said to me keep moving, I took it to heart! At times, we will be sidelined, and it happens. When you can, even standing in one spot with hands inches hovering over a kitchen counter for safety could help maintain balance. Yesterday, we were out walking and a man who I never met walked up to me and asked me about the orthotics, like what did I have? I explained I have PN and drop foot. He was walking with a cane. He told me that got PN 40 years ago while in law school and now probably 70 or so. Idiopathic. He said he walks every day. His walking was slow, worse than me. His wife walks with him as does mine. I told him what the neuro doc told me years ago, keeps moving. He said that's the key. Somebody dealing with PN for 40 years gave me encouragement. We can live with this! Ed
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5 ReactionsAre you taking alpha lipoic acid, l glutamine, l carnation? Vit b complex?
Ginko,heprazine a and lions mane mushroom helped with my unsteady condition
Hi, Bob (@bobm47)
Very interesting. Of the supplements you mention, the only one I took for a time was alpha lipoic acid. Since I had no pain and ALA didn’t seem to have any effect on my balance issues, I stopped taking it. The B vitamins? I seem to be getting plenty of those. I’ll do a little checking in glutamine and carnation. I’d never had them mentioned before. Thanks for your post!
Cheers!
Ray (@ray666)
Hi, Ed
‘Keep moving’ is my mantra. Folks have heard me quote Twyla Tharp so often they must be sure I’m in on the deal and getting a split of the royalties. 🙂 It’s true, though, I have her book, ‘Keep It Moving,’ sitting beside me. I dip into it whenever I feel I need a little extra boost to do just that: ‘Keep moving.’
You mention simple standing, too, as a great brain tutorial for improving balance. It’s funny you should mention standing. Only yesterday I was talking with a fellow who has balance issues similar to mine (no pain, just the wobblies). He’s got a gait coach and is determined to re-learn how to walk properly. He said yesterday something his coach said to him: if you’ve time for nothing else, just stand. And stay standing as long as time permits. Having a nearby kitchen counter is a good idea, too.
He’s also trying to wean himself from 24/7 cane-carrying. His coach has him still carrying a cane, but setting the tip on the ground every so much closer to the centerline of his body, so he doesn’t get to where his brain thinks having a wide, wide tripod (two feet plus can tip) for a base is the only safe way to go about.
You're 100% correct, Ed: We can live with this!
Cheers!
Ray
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3 ReactionsAcytle l carnation was the 3rd one. They recommended I take them during chemo but the forgot to give me the list.
I'm hoping this will subside over the weeks since ending chemo
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1 ReactionI have taking EB-N6 for about 2 Years and it appears to help my PN not only has not progressed it appears to improve the symptoms. I will continue to take even though it is pricey. Btw I am type 2 diabetic gong on 17 years.
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1 ReactionThankfully, it’s NOT raw onions…
Winsantor is signing up people with diabetic neuropathy for early compassionate use of the cream that is entering phase 3 of clinical trials. In phase 1 and 2 it was shown to regenerate nerves. It is not a pain medicine just to cover symptoms. If you qualify you may be able to get access to a healing drug that those of us with idiopathic have to wait for. They need 1000 to sign up in order to go ahead from FDA to make this available.
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