Steve,

I wish I’d kept my last reply to the medical and not so much the personal, but I got so charged when I heard you and I had several overlaps – Denver and LA, the newspaper business, and running – that I lost control. So, I’ll try to keep this post to the medical. You had asked about supplements …

… and I mentioned briefly and only in closing that I’ve been using a prescription-only supplement called EB-N5. First, though, to backtrack: I have idiopathic large-fiber, sensory-dominant polyneuropathy. For me, that means lots of balance problems (worse on some days and at certain hours of even my “good” days), but no pain (for which I’ll be forever grateful). My neuropathy was diagnosed via my first EMG in August 2022, although, as I reflect back, I’d been having worsening balance problems going back possibly as much as ten years. Once I received my diagnosis, I began auditioning specialists (as so many of us with neuropathy do) until I met a fellow I really liked; I’ll call him “Dr. B.”

Dr. B, besides being a neurologist, was also a physiatrist whose focus was physical rehabilitation: less emphasis on drugs and more on physical therapy. I liked that, as that was what I was looking for at the time: a doctor who’d take more of a holistic approach and was less interested in giving me yet two or three more prescription-only medications. Several months into working with Dr. B, he surprised me by asking if I’d like to try a “medicinal food,” EB-N5. Having accepted that my neuropathy was incurable, my attitude was, “What the hell? Why not?”

I started taking EB-N5 in July 2023: two hefty capsules in the a.m., and two more hefty capsules in the p.m. I mentioned EB-N5 here at the Connect forum, and discovered right away that – at least in many people’s minds – supplements like EB-N5 were “controversial,” because they contain a substantial measure of Vitamin B6. It’s known (so my reading has shown me) that B6 in excess can either bring on neuropathy-like symptoms or exacerbate existing symptoms.

This alarmed me, and so I talked with Dr. B. It was Dr. B who explained (and was seconded by others here at Connect) that B6 comes in two distinct varieties: B6 pyridoxine hydrochloride, which, in excess, can have a toxic effect (the B6 found in most OTC supplements), and B6 pyridoxal phosphate, or P-5-P, which has not been shown to have a toxic effect.

So, I’ve been using EB-N5 for more than 15 months. I’m asked: Has it helped? To which I answer: I can’t be sure. I don’t think it’s hurt me. But helped? The only evidence I have is that EB-N5 may have helped in a second EMG, administered by Dr. B, a year after that first EMG, that showed my neuropathy had not progressed. I plan to continue with EB-N5 until I have more definitive information (helping or hurting) or until Dr. B says to stop.

Phew! I got kinda long-winded. I’d better stop. At least, however, I kept this medical. That was my plan.

Have a great day, Steve. I promise the next time I write, I’ll keep it to under a usable 500 words.

Ray