1. < Neuropathy

EB-N5 and Idiopathic PN: Long-term Usage?

Posted by Ray Kemble @ray666, Jul 3 3:08pm

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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

NJ Ed | @njed | Jul 7 7:22am

@ray666 Ray - I am not surprised as to your response on the necessity of a prescription for EB-N5. Perhaps it is the combination and strength of the contents. Glad to hear that the sepsis is coming along and I'm sure your concerns over PN took a back seat, well...for now. As you say, the PN will be there after the sepsis is cleared up. It should be interesting to see if you notice any difference should you stop taking EB-N5. Likely, that's how you will know if it was helping you. I'm trying to be more active which I feel slows the progression of PN. My problem is two bad knees which can't be replaced because of my numbness and poor balance. Please keep us posted on EB-N5. Thanks.

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1 reply
Ray Kemble | @ray666 | Jul 7 10:32am
In reply to @njed "@ray666 Ray - I am not surprised as to your response on the necessity of a..." + (show)
@njed

@ray666 Ray - I am not surprised as to your response on the necessity of a prescription for EB-N5. Perhaps it is the combination and strength of the contents. Glad to hear that the sepsis is coming along and I'm sure your concerns over PN took a back seat, well...for now. As you say, the PN will be there after the sepsis is cleared up. It should be interesting to see if you notice any difference should you stop taking EB-N5. Likely, that's how you will know if it was helping you. I'm trying to be more active which I feel slows the progression of PN. My problem is two bad knees which can't be replaced because of my numbness and poor balance. Please keep us posted on EB-N5. Thanks.

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(@njed) Good morning, Ed. I, too, have a couple of bad joints that, if conditions were different, might be candidates for replacement: my bum left knee and my bum right hip. I've been told, though, by several clinicians that my candidacy for any replacement is now less likely because of the sepsis business –– that my immune system may never again be sufficiently robust to weather a joint replacement. That's just another one of my new realities. And here I thought that PN was the only "gift that keeps on giving" (or "taking"). Silly me. 🙂

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Ray Kemble | @ray666 | Jul 7 10:51am
In reply to @bjk3 "Hello, Ray! Thank you for your good wishes! I'm blessed to have a practitioner (my PT)..." + (show)
@bjk3

Hello, 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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Hi, Barb

"It's amazing how interconnected our body systems are."

Ain't that the truth! Last week, I went to see my dermatologist for the first time since several months before this sepsis business. As I'm a baldy, and Denver's mile-high sun can be pretty merciless, I've been doing six-month follow-ups with my dermatologist for several years. She knows me as "Outhouse Ray" because those early follow-ups were all to treat how regularly I bashed the top of my bald head entering and exiting our cabin's outhouse. Last week, I showed her the top of my head but assured her, "No outhouses this time!" Her reply reminded me of the body's interconnectedness: "You've had sepsis, Ray. Signs of a sepsis infection can erupt in the most unlikely places –– like the top of a person's head in the form of little 'scabies,' just like the scabies you got when you'd bang your head on the outhouse door."

Ray

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1 reply
bjk3 | @bjk3 | Jul 7 2:11pm
In reply to @bettyg81pain "Did you have the terrible tingling in your legs? What do they cost? That is my..." + (show)
@bettyg81pain

Did 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.

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I haven't had the terrible tingling in my legs but I do have worsening RLS (Restless Leg Syndrome). Haven't really considered what - if anything - BEMER can do for that. Ropineril gives me amazing relief.
The cost of my unit, including shipping from Germany plus taxes, was $5819.40. Hence I call it an investment - it's more than a mere purchase. Price is going up $400. in August. When I first inquired about the price (some 6 months ago) I said, "No way!!!, Not a chance!" But how times - and education - have changed. And now, also my savings balance!
Thank you for sharing in my gladness over the relief from PN that I'm experiencing. God Bless!!!

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bjk3 | @bjk3 | Jul 7 2:19pm
In reply to @ray666 "Hi, Barb "It's amazing how interconnected our body systems are." Ain't that the truth! Last week,..." + (show)
@ray666

Hi, Barb

"It's amazing how interconnected our body systems are."

Ain't that the truth! Last week, I went to see my dermatologist for the first time since several months before this sepsis business. As I'm a baldy, and Denver's mile-high sun can be pretty merciless, I've been doing six-month follow-ups with my dermatologist for several years. She knows me as "Outhouse Ray" because those early follow-ups were all to treat how regularly I bashed the top of my bald head entering and exiting our cabin's outhouse. Last week, I showed her the top of my head but assured her, "No outhouses this time!" Her reply reminded me of the body's interconnectedness: "You've had sepsis, Ray. Signs of a sepsis infection can erupt in the most unlikely places –– like the top of a person's head in the form of little 'scabies,' just like the scabies you got when you'd bang your head on the outhouse door."

Ray

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Gosh, just when one thinks things are on the upswing for awhile, something else shows up. Nobody told me that Wack-A-Mole would be the outcropping of the more benign Senioritis that has been around forever!!!

Cheers !! (??)

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Ray Kemble | @ray666 | Jul 7 3:00pm

Wack-A-Mole? Ha! I love it, Barb!

Or, in my case, maybe Wack-A-Bald-Head?

Cheers! Most definitely, cheers!
Ray

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retired123 | @retired123 | Jul 8 9:01am
In reply to @njed "@ray666 Hi Ray - Been following your comments on EB-N5 and just curious, what is in..." + (show)
@njed

@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?

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I have taken EB-N5 for a couple of years. Since it is pharmaceutical strength and not OTC strength, it requires a prescription.

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Ray Kemble | @ray666 | Jul 8 12:29pm

Hello, @retired123

You're the first person I've encountered using EB-N5, let alone someone who's even heard of it! I have to imagine that if you've been taking it for a couple of years, you're pleased with the results. When asked, I have to tell people that even after a year's time –– and now with my sepsis –– the EB-N5 jury is still out.

Ray (@ray666)

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2 replies
retired123 | @retired123 | Jul 8 12:46pm
In reply to @ray666 "Hello, @retired123 You're the first person I've encountered using EB-N5, let alone someone who's even heard..." + (show)
@ray666

Hello, @retired123

You're the first person I've encountered using EB-N5, let alone someone who's even heard of it! I have to imagine that if you've been taking it for a couple of years, you're pleased with the results. When asked, I have to tell people that even after a year's time –– and now with my sepsis –– the EB-N5 jury is still out.

Ray (@ray666)

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Perhaps we are taking it for different reasons. I also don't take it as directed because of its potency. I started because of the alpha lipoic for SFN and now it is more of a maintenance for blood vessels. Like you, the EB-N5 jury is still out. Nothing has "cured" the SFN. Not to sound like a lunatic, but I also have been using red light therapy and a grounding mat. I prefer natural healing methods when possible, rather than synthetic drugs with so many side effects. Be well!

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1 reply
mustii | @mustii | Jul 8 4:46pm
In reply to @ray666 "Hello, @retired123 You're the first person I've encountered using EB-N5, let alone someone who's even heard..." + (show)
@ray666

Hello, @retired123

You're the first person I've encountered using EB-N5, let alone someone who's even heard of it! I have to imagine that if you've been taking it for a couple of years, you're pleased with the results. When asked, I have to tell people that even after a year's time –– and now with my sepsis –– the EB-N5 jury is still out.

Ray (@ray666)

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I’ve taken EB-N5 for about 6 months: It’s quite expensive and I’m not really sure how effective it is:

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