Has anyone been prescribed EB-N5?

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.

It appears to be another manufacturer of their own proprietary blend of ingredients for neuropathy. I haven't seen any research trials on their products but some of the ingredients can be found in neuropathy research that they are helpful. Here's what EB-N5 actually contains from their website: https://ebmmedical.com/medical-foods/
EB-N5® INGREDIENTS
L-methylfolate calcium 6 mg
Methylcobalamin 4 mg
Pyridoxal 5′-phosphate 70 mg
Alpha-lipoic acid 600 mg
Cholecalciferol 5000 IU

So then begs the question - can you buy the separate ingredients cheaper yourself if you think EB-N5 might help. Just being the Devil's advocate here 🙃

Hi, John

That's my question, too: Can I purchase the ingredients separately and save money? I'm going to look into that. I've already purchased the manufacturer's three-month supply, but after that … ? I'd like to know.

Ray

When I first started taking the Protocol 525 before it was renamed to the 525 (5 capsules in the morning, 2 at noon, 5 in the evening), we ordered each supplement from Amazon or the manufacturer and it was around $6 a day cost when you added up the different supplements. Just this year they worked with a pharmaceutical company to reduce the number of pills and now they are down to 424 but product still has the same name. When you buy them individually it comes along with ordering refills at different times due to some coming in 30, 60, 90, etc counts. Attached a copy of the new protocol ingredients below.

@johnbishop John, on the 525 which you've mentioned for a while now that you continue to take, how did it make an improvement with regard to your neuropathy? You have numbness and no pain and I'm not sure if you have balance problems. If you also have balance issues, did it help out? How long have you been taking the 525? I guess what I'm trying to find out is how much did it help and in what ways? As always, thanks for your many comments and assistance to many of us! Ed

Hi Ed @njed, I posted my neuropathy journey in 2020 in the Member Neuropathy Journey Stories: What's Yours? discussion here - https://connect.mayoclinic.org/comment/310341/. Since I made that post back in 2020, my numbness has gotten a little better and I have some feeling in my feet but they still have numbness, kind of hard to describe. I do have balance issues and I don't think the protocol by itself improves balance. I also had a weight problem and worked on losing about 40+ pounds at the same time I started taking the protocol in Sept 2016.

Reading a health journey story for @LeeAase got me started on intermittent fasting and low carb healthy fat eating which I think has helped with both weight and my neuropathy. Lee shared my story on his health blog here - https://www.social-media-university-global.org/2020/08/john-bishops-journey/. The success I had with the intermittent fasting and lowering my carbs I think has played a part in some of the feeling returning to my feet.
My doctors have always bugged me about being in the pre-diabetes category and I always blew it off even though my mother and both sisters have diabetes. Losing weight and having some improvement in my numbness made me rethink some of my eating habits and make some lifestyle changes. My eyes opened a little more when I found a few articles on the metabolic syndrome which none of my doctors had ever mentioned when they were telling me I was pre-diabetic. So I'm still a work in progress but my runway is getting shorter 🙂

--- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/
--- Metabolic syndrome as a risk factor for neurological disorders
https://pubmed.ncbi.nlm.nih.gov/21997383/
I should mention that I like the newest version of the Protocol 525 since it's 4 capsules in the morning, 2 at noon and 4 in the evening.

Ask if that amount of vitamin B-6 (P5P) is safe. Can't tell is it's 70 mg per day or 140 from description in brochure. All the supplements are about the same, yet confusing and perhaps helpful or not.

Hi, John (@johnbishop)

I find it interesting that, since my mentioning EB-N5, so many have mentioned 525 and related their experience using those supplements. I'd not heard of 525 when I first got involved here at Connect, but it wasn't long before someone posted about 525 and was quite fervent about my giving it a try. Because I was new to Connect at the time, the fellow's very fervency made me leery; I did a little Google searching to learn about 525, but after a little looking, I decided, Thanks, but no thanks. And here I am today, a few months later, on Connect and asking about what appears to be a similar supplement regimen, EB-N5. I'd probably once again be saying, Thanks, but no thanks, if the suggestion I give EB-N5 a try hadn't come from my doctor. My first three-month supply is due to arrive in tomorrow's mail. I'm happy to play the part of the embedded reporter reporting back from the front lines of EB-N5. 😀

Ray (@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)

Thanks. I am going to call the company as well. Just need to be safe and not cause more harm.