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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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My neurologist, whose practice includes physiatry, suggested I try EB-N5 for my large fiber PN (no pain, just unreliable balance). EB-N5 is all I'm taking –– that, and doing lots of balance and gait PT. I'm like you: I prefer natural healing. The fewer the plastic pill bottles, the better. You BE WELL, too! –Ray (@ray666)
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4 ReactionsMy neurologist, who specializes in physiatry, suggested I try EB-N5 but allowed that it came with no guarantees. He and I were looking for something—anything—that might have a positive effect on my balance and gait. My PN is predominantly large fiber PN, so I've balance and gait issues but no pain (thank goodness!). For the past year, I'd report anything suggesting that EB-N5 might be helping. Then sepsis struck. And with sepsis came a near-total masking of my PN symptoms. Since late March, I've not been able to tell my neurologist yes/no/maybe concerning the EB-N5.
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4 ReactionsThank you for the information!!
Anyone that has used EB-N6 supplements for neuropathy?
Hi, @spankytwo2
I've been using EB-N5 for a little over a year. I'm unsure of the difference between -N5 and -N6, but if my experience might be of any interest, I'm happy to help.
Ray (@ray666)
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2 ReactionsTell me more about your experience with EN-N5-Thanks!!
Hello, Betty
You might think I'd have more to report, my having been using EB-N5 for more than fourteen months, but I don't, not really – which, I suppose one might say, is good news: EB-N5 has done me no harm, or at least it appears (to me and neurologist) to have done me no harm. I have idiopathic large fiber neuropathy; no pain, but troubling balance issues. When I was first prescribed EB-N5, I was understandably concerned about my new B6 intake; I'd heard about how "too much" B6 can replicate the symptoms of neuropathy. I discussed my concern with my neurologist and all of my doctors (and at 79, I have a slew of doctors!). I read everything I could find in credible medical journals ("credible" is important!) until I'd relaxed in knowing the difference between pyridoxine hydrochloride B6 and pyridoxal phosphate B6, how the former can be toxic and the latter rarely, if ever, a problem. So, for now, I intend to continue with my EB-N5. My balance, if I'm to be honest, is no better, no worse, and a second EMG (last November) showed that my neuropathy had not progressed.
Cheers!
Ray (@ray666)
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3 Reactions@ray666 Ray, interesting update on EB-N5. The fact that the neuropathy had not progressed as of 10 months ago and balance appears to be no better and no worse, to me that seems to be an improvement since slow progression is more common. So, perhaps in your case, the EB-M5 is helping. Steady as she goes!
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4 ReactionsGood morning, Ed (@njed) I'd like to think that the lack of measurable progression is thanks to EB-N5 alone, but because my recent septic bout has muddied the waters, I can't be 100% sure – 100% sure of a number of things. No. 1: Has there really been no progression in my PN? The infection had its own way of messing with my balance. Since I'm still dealing with some sepsis symptoms (shortness of breath is the most bothersome), when I have an extra-wobbly moment, I'm always asking myself: Is this just the sepsis? Or has my PN sneakily progressed? That's what I mean by 'muddied the waters.' And why one other thing I can't be absolutely sure of is EB-N5: a. Has it really helped (and behind the sepsis, there's been no progression, or b. Has it not helped at all, and my extra-wobbly moments ARE indicators of progression, or c. Is EB-N5 merely putting up a good fight, and if, in the long run, it's helping with my PN … well, it's too soon to tell.
Ah, the Madness of King PN! 🙂
Cheers!
Ray (@ray666)
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5 ReactionsRay - all things considered time will tell. You referenced recent sepsis has sort of thrown a monkey wrench (my words) into your ability to monitor PN progression. Should be interesting to see that once the sepsis is fully resolved, how you will effectively again monitor your PN progression or fingers crossed...lack of progression.
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