Has anyone been prescribed EB-N5?

Posted by Ray Kemble @ray666, Jun 30, 2023

Has anyone been prescribed EB-N5? I see there was a discussion of this supplement before, but it dates back to 2018. I received a message this morning from my neurologist saying he'd like me to begin taking EB-N5. Unfortunately, he's not in the office today, so I'm not able to ask him what I might expect from EB-N5. If any of you have used this supplement, I'd love to know what results, if any, you had.

Ray (@ray666)

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

@ray666 My last downturn for balance was in September and has been the same for about 2 months, unfortunately, not good. So, perhaps I'm in that level off period. Odd...the balance seems to get slightly worse later in the day and I think Debbie ( @dbeshears1 ) may have mentioned it in a post a while back as well. Morning better, by dinner time I'm walking with a drift to it....sort of the wobbly you mention from side to side. Perhaps if I did drink, I'd walk straight!

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@ray666

I'm surprised that no one has posted to say they're familiar with EB-N5. That leaves me wondering if EB-N5 is a relatively new approach to helping with PN. I'll be taking the capsules at my neurologist's suggestion. The capsules are due to arrive Monday. I understand if I'm to give EB-N5 a fair shot, I'll need to take them for at least three months, but for an even fairer shot, six months. I'm not going to hope for a miracle. After all, those of us living with PN know how rare miracles are. Yet, what have I got to lose? I'll let any who are interested know how may experience with EB-N5 goes.

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I started taking EBN5 a few weeks ago. I do not know if it is working yet but some of my other medications have changed so I don't know if I will be able to tell what medication might cause any improvement. I would certainly appreciate knowing how you are doing and if you experience any improvements. Thank you.

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@ray666

I will make a point of discussing this with my doctor. It appears if I'll be taking two capsules of 70 mg daily, to 140 mg daily, I'll be punching through the ceiling for overdosing. If I understand correctly, the safe max for adults is 100 mg daily, also not to continue using at that level for more than a year or two. Rest assured I'm going to check on this.

Ray (@ray666)

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Hello Ray. My name is Jerry. Did the EB-N5 ever work for you? My B6 test came back couple days ago and was 54.3 ng/dl. Quest diagnostics did my blood test and say that normal is 2.1 to 27.1 ng/dl. I don't know if my level is toxic or not. And can't see in my diet or supplements that it could be that high. Thanks.

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EB-N5® INGREDIENTS
L-methylfolate calcium 6 mg This is a man-made form of b-vitamin
Methylcobalamin 4 mg This is natural form of B12 - According to NutritionFacts.org it is not stable, more expensive, and you have to take a lot more than the Cyanocobalamin Form
Pyridoxal 5′-phosphate 70 mg The active form of B6 (so careful!!)
Alpha-lipoic acid 600 mg Well known to be helpful for a lot of us
Cholecalciferol 5000 IU This is Vitamin D3. I take 10,000, but live in a cold climate.

I've over simplified I'm sure, but I don't see anything special about this mix of Vitamins we can get easily anywhere.
May I ask the cost to purchase this? I don't imagine it is cheap. Also, it is called a "Medical Food". I know the term has been around a little while, but it seems like smoke and mirrors to me.

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@calgaryneuropathyassoc

EB-N5® INGREDIENTS
L-methylfolate calcium 6 mg This is a man-made form of b-vitamin
Methylcobalamin 4 mg This is natural form of B12 - According to NutritionFacts.org it is not stable, more expensive, and you have to take a lot more than the Cyanocobalamin Form
Pyridoxal 5′-phosphate 70 mg The active form of B6 (so careful!!)
Alpha-lipoic acid 600 mg Well known to be helpful for a lot of us
Cholecalciferol 5000 IU This is Vitamin D3. I take 10,000, but live in a cold climate.

I've over simplified I'm sure, but I don't see anything special about this mix of Vitamins we can get easily anywhere.
May I ask the cost to purchase this? I don't imagine it is cheap. Also, it is called a "Medical Food". I know the term has been around a little while, but it seems like smoke and mirrors to me.

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I’m new here. Have had neuropathy in my feet for over a decade. Not diabetic but overweight. I take pain meds. They are like gold to me. Guess I should be researching their long term use side effects. I saw your comment on this medical food drug. I want to know what’s wrong with “medical food”? Wouldn’t that be wonderful if it was nutritious and helpful without being a pharmaceutical drug? And while I’m trying to understand all you said I want to say I did read that high doses of B12 can be bad for kidneys

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@dfm

I’m new here. Have had neuropathy in my feet for over a decade. Not diabetic but overweight. I take pain meds. They are like gold to me. Guess I should be researching their long term use side effects. I saw your comment on this medical food drug. I want to know what’s wrong with “medical food”? Wouldn’t that be wonderful if it was nutritious and helpful without being a pharmaceutical drug? And while I’m trying to understand all you said I want to say I did read that high doses of B12 can be bad for kidneys

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Welcome @dfm, You are definitely not alone and have a lot of company with those of us dealing with neuropathy symptoms for over a decade. Many of us have been dealing with neuropathy for multiple decades. Research and learning about your condition is one of the best things you can do to advocate for your health and learning what treatment options may help with your neuropathy symptoms.

The origin of the term medical food is kind of interesting and sheds the light on why/how it was coined.
"The term “medical food” was coined in the Orphan Drug Amendments of 1988 (Act 21 U.S.C. 260ee (b)(3)), and was exempted from nutrition labeling, health claim and nutrient disclosure, which are required for other foods in the Nutrition Labeling and Education Act of 1990 [8]."
--- Medical foods in USA at a glance: https://www.sciencedirect.com/science/article/pii/S2772566922000039.

What type of pain meds are you taking that help?

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Some of the ingredients in NB-N5 have demonstrated efficacy in both preclinical and clinical work, but this combination at these dosages for some ingredients is questionable at best and very hazardous at worst. Additionally there are no third party reliable tests of this product. You are far better off buying B12, alpha lipoic acid, vitamin D, methylfolate and vitamin D3 individually from well known brands, preferably third party tested. (This will also actually be far less expensive in the long run.) The dosages of methylfolate and of B6 in this product are far too high. I worked for a time with the editor in chief of The Journal of Medicinal Foods. To call this a medicinal food is ridiculous, calling the integrity of the maker of this product into further question. My advice: avoid.

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@proteusx

Some of the ingredients in NB-N5 have demonstrated efficacy in both preclinical and clinical work, but this combination at these dosages for some ingredients is questionable at best and very hazardous at worst. Additionally there are no third party reliable tests of this product. You are far better off buying B12, alpha lipoic acid, vitamin D, methylfolate and vitamin D3 individually from well known brands, preferably third party tested. (This will also actually be far less expensive in the long run.) The dosages of methylfolate and of B6 in this product are far too high. I worked for a time with the editor in chief of The Journal of Medicinal Foods. To call this a medicinal food is ridiculous, calling the integrity of the maker of this product into further question. My advice: avoid.

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Thanks Proteusx for you suggestions. I too was recently prescribed NB-N5 by my pain doctor. But couldn't get any good answers as to the amount of research that's been done on this. They want a $150.00 for (I think) a 3 month supply. I currently take a B12 and Magnesium Glycinate, in addition to a 150mg Lyrica tablet a day. That's been keeping my PN in check fairly well, although some nights are still tough. So, I just looked up your recommendations for, as you say "B12, alpha lipoic acid, vitamin D, methylfolate and vitamin D3 individually from well known brands,..." and found that there is quite a wide variety of dosages and brands, associated with varying pricing (which altogether would actually add up to close to what EBM are asking for their NB-N5 product). Based on that I have a follow up question, if you'd be so kind. Could you recommend specific dosages of the above, so as to allow me to be more precise in my research? That would be super helpful. Thanks

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@alfko2

Thanks Proteusx for you suggestions. I too was recently prescribed NB-N5 by my pain doctor. But couldn't get any good answers as to the amount of research that's been done on this. They want a $150.00 for (I think) a 3 month supply. I currently take a B12 and Magnesium Glycinate, in addition to a 150mg Lyrica tablet a day. That's been keeping my PN in check fairly well, although some nights are still tough. So, I just looked up your recommendations for, as you say "B12, alpha lipoic acid, vitamin D, methylfolate and vitamin D3 individually from well known brands,..." and found that there is quite a wide variety of dosages and brands, associated with varying pricing (which altogether would actually add up to close to what EBM are asking for their NB-N5 product). Based on that I have a follow up question, if you'd be so kind. Could you recommend specific dosages of the above, so as to allow me to be more precise in my research? That would be super helpful. Thanks

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Correction: I meant to say EB-N5, not NB-N5. Not sure if there is actually a difference

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@jerryw

Hello Ray. My name is Jerry. Did the EB-N5 ever work for you? My B6 test came back couple days ago and was 54.3 ng/dl. Quest diagnostics did my blood test and say that normal is 2.1 to 27.1 ng/dl. I don't know if my level is toxic or not. And can't see in my diet or supplements that it could be that high. Thanks.

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Hello, Jerry (@jerryw)

I'm sorry I didn't reply to your note before. Somehow it flew past my radar. I'm still taking EB-N5 and still feeling pretty good. When I say "pretty good," I mean I've still no pain, only balance issues that have not grown appreciably worse over all the months I've been using EB-N5. Is that to EB-N5's credit? Who can say? My B6 level remains high, just out of range, but two different neurologists have told me I needn't be concerned. Privately, I'm not so sure I needn't be concerned, but what can you do when two different specialists (both of whom I admire and have come to trust) tell you everything is A-OK? I wish it were possible to get a definitive answer, but definitive answers seem a rare commodity in this world of peripheral neuropathy. 🙂

Cheers!
Ray (@ray666)

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