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.

@islandelf

I am so discouraged. Looks like I have been on EB-N5 for two weeks now. I did not expect a cure immediately because they told me it could take 3 - 6 months. However, I haven't seen any new bruising, but Friday I began getting shock like nerve pain in my left foot big toe, I believe that's my hallux. It's like these pills possibly took away the numbness and replaced it with feeling and pain. Also, even though I took the pills with food I developed stomach aches. I am getting epidural shots in my back on Wednesday so I thought I should stop the pills because alpha lipoic acid can reduce blood clotting. I stopped taking the pill on Saturday night and the nerve pain in my toe has reduced somewhat today, but not completely. I see my general practioner tomorrow and will see what he says. He is always pushing stem cell and/or infusions so I'm sure he won't be 100% for these pills. By the way my Vitamin B12 in on 3/31 was 1500 and my D-25 hydroxy was 131.0. Both very high. When I stopped taking the B 12 and D3/K2 my B 12 went down to 304 and my D25 went down to 56. This was on 7/3 so maybe I should go back on them. So confusing. After reading some of the other posts on neuropathy I feel lucky that I'm not as bad as so many others. It just that everything I try seems to make my neuropathy worse.

Jump to this post

Too much b6 can cause the issues you described, are you taking the b6 or did you hold off on the b6? All the other supplements are probably fine I just wouldn't take the b6.

REPLY
@bb0753

Too much b6 can cause the issues you described, are you taking the b6 or did you hold off on the b6? All the other supplements are probably fine I just wouldn't take the b6.

Jump to this post

Hi, bb0753 (@bb0753)

There's been quite an extensive discussion about B6 under one of the other topics. I wish I could tell you which one. Since posting about EB-N5, I've been taking the capsules twice daily at my neurologist's suggestion. Today is Day 22. Also since posting, I've heard a lot about the downsides of B6. Fortunately, I'll be meeting with my neurologist in early August. This will be our No. 1 topic of discussion.

Ray (@ray666)

REPLY
@ray666

Hi, bb0753 (@bb0753)

There's been quite an extensive discussion about B6 under one of the other topics. I wish I could tell you which one. Since posting about EB-N5, I've been taking the capsules twice daily at my neurologist's suggestion. Today is Day 22. Also since posting, I've heard a lot about the downsides of B6. Fortunately, I'll be meeting with my neurologist in early August. This will be our No. 1 topic of discussion.

Ray (@ray666)

Jump to this post

I think this was the main B6 discussion in the neuropathy group...
--- B-6 vitamin danger!: https://connect.mayoclinic.org/discussion/b-6-vitamin-danger/

REPLY

Yes I remember us having previous messages about the b6. Many doctors are not aware of problems with b6 but it is becoming more well known. Most doctors don't test for b6 unless they are testing for b6 deficiency but it is fairly well known b6 toxicity can cause neuropathy but doctors think you have to take over 100mg to get toxic . Any dehydration can amplify the likelihood of becoming toxic .

REPLY
@ray666

Hi, bb0753 (@bb0753)

There's been quite an extensive discussion about B6 under one of the other topics. I wish I could tell you which one. Since posting about EB-N5, I've been taking the capsules twice daily at my neurologist's suggestion. Today is Day 22. Also since posting, I've heard a lot about the downsides of B6. Fortunately, I'll be meeting with my neurologist in early August. This will be our No. 1 topic of discussion.

Ray (@ray666)

Jump to this post

EB-N5 has 6 mg of folate; 4 mg of B 12; 70 mg of B 6; 5000 IU of D3 and 600 mg of Alpha Lipoic Acid. Adult dose is 1 capsule twice daily with food. AM and PM dosing is recommended. Can I assume the above mg, etc. are the ingredients for two pills? As stated I have ceased taking the pills until Thursday, because of the epidural shots I am getting on Wednesday. I will see if the symptoms return when I start back up.

REPLY

Please be careful with this. I had a horrible reaction after I took one. My heartrate shot up to 100 and it took me a couple hours and lots of water to get it to start coming down. When I called the company, the woman I talked to told me it couldnt be the pill because they dont go into the bloodstream. I researched and that was in error. Now I am stuck with a bottle of pills I cant take after paying $149 .

REPLY

I believe caution is always wise when starting any new medication, and that would go for "medicinal foods" like EB-N5, too. I've been taking EB-N5 under the supervision of two different neurologists' offices for several months. We're paying very strict attention to my labs, which I've been going for periodically. So far, I've not had any adverse reactions to the EB-N5, and my PN symptoms have mainly remained stable. Now, are they "stable" thanks to the EB-N5? To something else? Or am I just in a stable phase of my PN? It's hard to say. I've felt this way so often since being diagnosed, wishing I could say for sure which medication or supplement (or medical food) is helping and which isn't. PN can be so mysterious.

REPLY

@ray666 Ray - interesting you mention the "stable phase of my PN" which I have experienced these episodes for about 5 - 6 years. It's like you feel it is the same and then over a day or so....uh oh...it's worse and it stays worse. I mentioned that to one of the neuro docs and they looked at me like I had two heads. My stable period lasts about 6 - 9 months. By the way, I never went back to that neuro doc. Ed

REPLY

EB-N5DR. L-methylfolate Calcium. Biologically active form of vitamin B9 (Folic Acid)

REPLY
@njed

@ray666 Ray - interesting you mention the "stable phase of my PN" which I have experienced these episodes for about 5 - 6 years. It's like you feel it is the same and then over a day or so....uh oh...it's worse and it stays worse. I mentioned that to one of the neuro docs and they looked at me like I had two heads. My stable period lasts about 6 - 9 months. By the way, I never went back to that neuro doc. Ed

Jump to this post

Good morning, Ed (@njed)

Good phases, bad phases, in-between phases––it's enough to drive a guy crazy! 🙂 At moment, I think I'm in one of my good phases. Or, of course, it may be an in-between phase. Not a day goes by without my having an hour or two of super-wobbliness. The other hours of the day … well, it all depends. I really should begin to keep a Captain's Log on all these phases so I'd have some real data to present my doc (of course, even with real data, he may still look at me like I have two heads).

Somewhat unrelated: My PCP wants me to try Tamsulosin because of an unreliable bladder. I noticed among the side effects: dizziness. I sent my PCP a note a moment ago asking if she really thinks it's okay for me to use Tamsulosin. If there's one thing I don't need it's a drug that will make me even more wobbly. 😀

Ray (@ray666)

P.S. Does Connect have a forum for people with two heads?

REPLY
Please sign in or register to post a reply.