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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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Thanks for sharing the update Ray, and for the fair warning that we have to be careful jumping to conclusions when there are so many other variables that interfere with a proper analysis. Keep us updated and keep ahead of this thing!
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3 ReactionsGood morning, Debbie!
I’ll be sure to post updates if and when I’ve got any that might be meaningful to others. Those of us with PN hope so hard for a fraction of relief with each new suggestion we hear about (I’m as hard a hope-er as the next fellow), whether the suggestion is for a pair of spring-loaded walking shoes or an untested intergalactic gene therapy available only online. I was hoping for the best, or if not the best, then at least some reportable improvement in my PN, when my neurologist suggested I give EB-N5 a try. For a year and a half, I kept careful track of my PN symptoms (possible improvement? possible setback?), hoping I’d reach some conclusion about EB-N5 when my sepsis infection came along, totally masking my PN symptoms. That’s why I posted yesterday. I had hoped I might find another PNer who is a long-term user of EB-N5 and who might be willing to share what their experience had been like.
As always, Debbie:
Cheers!
Ray
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4 ReactionsGood Evening, Ray ~
What a complicated and mysterious path these conditions of ours present. I hope somewhere in the Mayo readership there are folks who can give you some feedback on their long-term experiences with EB-N5.
As an update here, in June I decided to buy a BEMER (BioElectroMagneticEnergyRegulation) system in order to have a daily investiture in my PN treatment (in addition to PT every other week). It was a huge decision, taking several months, but I am confident and at peace with the decision, now that it has been made. Its website can explain its workings better than I, so I won't go into all that. I've been using the original, older model on loan since January. This new model has many more delivery discs, making it more efficient and adaptable.
I'm so glad you've turned the corner successfully on that sepsis issue. Healing seems to take so much longer on these senior bodies. The more experiences I hear about, though, the more I am encouraged to find that there is not necessarily only one way to attain that healing.
May we all find - and recognize - what it is that will help each of us!
Blessings on you and yours!
Barb
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1 Reaction@ray666 Hi Ray - Been following your comments on EB-N5 and just curious, what is in EB-N5 that makes this available only by prescription?
How is the new BEMER working to help your neuropathy? Want to know more about it!!
Good morning, Ed (@njed)
“ … what is in EB-N5 that makes this available only by prescription?”
Good question. Frankly, I don’t know the answer. If something like alpha lipoic can be purchased OTC, why not EB-N5? Could it nothing more than EB-N5’s approval process is crawling through the corridors of the FDA like a Galapagos tortoise? I’ve told the EB-N5 manufacturer to hold off with my next auto-refill until I can talk to my neurodoc and find out if he thinks I should continue taking it. You’d think I should be able to answer that question for myself, but my life has been all about sepsis for the past four months. I’ve all but forgotten about my PN. But my sepsis is fading. I know my PN is waiting, ready with its various symptoms, to return to centerstage.
How are things with you, Ed?
Ray (@ray666)
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2 ReactionsGood morning, Barb
I see @betty81pain has already asked about your new BEMER, so I won't ask, too, although I, too, am curious.
While it's true my chief sepsis symptoms are saying bye-bye, sepsis, from what I've learned, will never fully depart a person's body. I'll be stuck with a more vulnerable immune system than the average guy for the rest of my life. I'll manage, though. As with PN, all we have to do is learn the rules of the road.
Good luck with your new BEMER!
Cheers!
Ray (@ray666)
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4 ReactionsHello, @bettyg81pain ~
Hoping that what I share in some way answers your question, as I want to start by saying what it cannot do:
- it cannot heal peripheral neuropathy
- it cannot return the strength that your body had before you became a senior
- it will not restore balance
For me, I have found that I now have feeling in the soles of my feet, whereas before, they were completely numb. (Years ago, I had a neighbor who had to have his toes amputated because he didn't realize he was burning his feet sitting too close to his fireplace. That was a reminder that some pain is good because it warns you about danger.)
The PN type of foot pain, for me, can only be subdued with Pregabalin & Tramadol, so I wouldn't say the BEMER is the PRIMARY source of relief from PN foot pain. However, because it restores blood flow to the capillaries and tiny blood vessels that are offshoots from the main arteries and veins, it increases receptivity of warmth, feeling, strength, and energy to the body and to particular parts of the body where the accessory pieces are positioned. For me, that is specifically my wrists because of fairly severe carpel tunnel, and my legs because most of us find our circulation has decreased, especially if we cannot walk for exercise. Also, it really helps on the sore shoulder blades and neck. I feel a more general sense of well-being using this every day, as opposed to staggered visits to my PT.
I feel you would need to find a practitioner who is familiar with this system and with your body so that settings could be programmed to your individual needs.
This, for me, is a major commitment and investment ~ and really, a lifestyle change in a way. I am not trying to extend my lifespan past the years that God has planned for me, but I am trying to find adaptations that keep me in my own home, avoiding any orthopedic surgery, rehab or skilled care, and independent enough that I don't disrupt my grown children's lives putting them any further into the "sandwich" generation situation than they already are. They are all married, so they have two sets of parents, or at least two families with a senior parent.
Still hoping and praying you find the answers and relief that you are looking for!
~Barb
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1 ReactionHello, Ray!
Thank you for your good wishes! I'm blessed to have a practitioner (my PT) who can program the unit to address my particular needs. This technical stuff is way beyond my wheelhouse.
It is not surprising that there will always be some sort of long-term issue with your immune system. It's amazing how interconnected our body systems are. After my hip replacement due to a break from a fall, I found out I'd have to take Amoxicillin every time I visited the dentist - forever!- even if just for a cleaning. Seems the bacteria in the mouth can trigger an infection in the post-surgical hip, if it enters the blood stream and travels to that area. Who knew?? Grrrr!
Anyway, one thing I didn't share in my answer to BettyG, was another main factor in the decision to invest in this, versus the L39 patch or a deep-tissue red light. The class 1V red light is waaayyy too expensive ($50,000.), and the patches would be an investment that is gone when I die. But the BEMER is something that I can pass on to whichever of my kids wants it, or maybe they could share it if they so decide. It just seemed a more thoughtful option. And who can't use an enhanced delivery of oxygen and nutrients through the small veins and capillaries that have become incapacitated as our bodies age?
Since you had expressed a curiosity, I thought I'd add these thoughts.
Have a super Sunday and stay safe and well ~
Barb
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2 ReactionsDid you have the terrible tingling in your legs? What do they cost? That is my main problem. I’m glad you have found some relief with it! Thank you for ur response.