Has anyone been prescribed EB-N5?

At least your doctor did check your b6. I was taking melatonin that had 10mg b6 (which I did not notice) when I was finally tested after taking that for about 3+ years my b6 was 118 on scale 2.1-21. So about 5 times above normal. I had gradually developed feet neuropathy which has not gone away even though I quit the melatonin that had added b6 and my b6 is now normal. The high b6 is the only issue the doctor found. I don't know if that caused the neuropathy or not. The protocol 525 that John talked about has many of same supplements as one you are trying but has no b6. I have not tried it but was considering trying that protocol. I have started taking PEA and R-ALA but have seen no improvement.

@johnbishop, @njed, @zav, @dbeshears1), bb0753 (@bb0753)

Good morning! Another day, the adventure continues. I want to repeat my thanks to all who called my attention to the precautions involving B6 and assure you I will look carefully into this. Today is a holiday, so I can't reach certain key people, but I'll be ringing them up first thing tomorrow morning, you can be sure.

Happy Fourth!
Ray (@ray666)

I’m amazed when I hear people on here say they just call their doctor and get answers to their questions. Where do I go to get a doctor like that? lol. My neurologist is terrible and he’s my second. I’ll be looking for a third. He ordered no tests. I can’t take Gabapentin and he hasn’t suggested any supplements or anything like ALA. Luckily my PCP is trying and ordered additional blood tests they don’t normally do. My B1 was low so I’m starting supplements. Also my ANA showed an autoimmune issue so I have to see a rheumatologist. My test results came back while my PCP was on vacation so the nurse sent them to my neurologist since I had an appointment that week. He looked them over and said everything looked fine. Ugh. When my PCP got back into town he told me everything wasn’t fine. Very frustrated with medical profession as a whole and my neurologist in particular

@daj3333, Sometimes you just have to "help" them understand. One site I absolutely love and have learned a few tips on working together with my PCPs is The Patient Revolution - https://www.patientrevolution.org/tools.

@daj3333- I agree with you, I can't reach any of my doctors by phone the same day. OK, perhaps my dentist because I'm screaming my head off with a filling that is in the palm of my hand. Or my podiatrist who sees me often thru the year. Short of that, I have to jump thru hoops, talk with a secretary, then a medical assistant and if my call warrants a return call, I might get a call back a day or two later. By then, half the time, I either went to the pharmacy and took care of the problem myself or I called a friend who was a nurse for 40 years to get quick answers. In my resort area, the local hospital has taken over almost all of the independent practices, so the docs are under the guidelines of hospital policy. And you're right, the medical profession has changed in the past 20 years. Many good ones near retirement got out during covid.

Hello, Ed (@njed), @daj3333

Can you forgive me for playing a game of wishful thinking? I didn't mean to give the impression that I have an easy time getting a message back from my doctors. My neurologist (the one I will ask about B6; I have a neurology PA, too, but in a different clinic) can be a little difficult getting a response from. I've learned a trick that helps, but it's far from perfect. The neurologist has an assistant named Dave. He and I have talked back & forth a lot in the past year. What I'll do (as I will tomorrow re B6) is call Dave, ask him my question, and ask him to bug the neurologist for an answer. Three times out of five, I'll hear back that day, never a phone call (that'd definitely be wishful thinking); ordinarily, I get a brief reply via my patient portal. It's not the greatest, but at least it's something. My PCP, on the other hand, is typically pretty quick with her replies. I intend to ask her about my B6. If she cannot find any recent lab work showing my B6 level, I'll ask her to refer me to the lab for a new test. Beyond these two, however, communication with my other doctors leaves much to be desired. A few weeks ago, I "fired" my dermatologist because her office had obviously outsourced its telephone service, the office number having changed from a local area code to 1-800 or 1-888. I'd left countless messages trying to make a simple change of appointment, never once getting a callback. Finally, I sent the office manager and my dermatologist paper letters saying I'd had it: Enough is enough! So, I agree: the U.S. interface between doctors and patients leaves much––MUCH!––to be desired.

Ray (@ray666)

Ray - sorry to hear you aren’t as lucky as we thought with getting ahold of your doctors. The support staff at my neurologist is terrible about returning calls also. Guess I’ll be looking for a third neurologist. At my last appointment he said come back in 2 months but he didn’t have any available appointments for almost 3 months. Yet he’s still taking new patients. Anybody know a good neurologist in the Orlando area?

Good evening Ray. Hope you find answers. Here is an article from Australian government website.
https://www.tga.gov.au/news/safety-alerts/health-supplements-containing-vitamin-b6-can-cause-peripheral-neuropathy#:~:text=Many%20people%20are%20not%20aware,taking%20more%20than%20one%20supplement.

@ray666 Ray, I think every office should have a "Dave" because in many cases, these folks are the best line of communication between patient and practitioner. In our area, the local hospital opened up 3 urgent care centers who have access to all my med records. Walk in, the docs know everything about you, so it has helped when you can't reach your primary or get in for an appointment.

Be careful about how you explain switching Neurologists. I have a new Neurologist now, my 3rd since 2020 because I moved 220 miles away from my 1st one so had to get a new one, and now recently moved again 200 miles to where I’ve gotten this 3rd one. In addition, when I first came down with this crippling PN in 2016, my 1st Neurologist (who I still had up to the time I moved in 2020) referred me to 2 distant University hospitals for one-time consultations to help him/me. So with those 2 isolated one-time consultations, my “record” appears that I’m on my 5th Neurologist since 2016…. Her doctor’s visit notes in my portal from my recent first visit with her reads “The patient moves to different Neurologists a lot. She is seeing me after being seen by #1 #2 #3 and #4 (names inserted) since 2016”. There are two other important discrepancies in her notes, though I think they were carelessness vs intentional, but still need to be fixed.
All I can politely say is what a Witch! This “Medical University” doctor didn’t listen, nor take the time in our rushed visit to understand that I moved to different states & how moving to different states requires getting new doctors. She knew the Duke and other consult were 1 time, far away travel events for diagnosis attempts in 2016. But her notes are a tainted report for all medical providers who read it that I am a disgruntled doctor jumper.
I think the reality is that so many of us PN sufferers are undiagnosed, under-treated, and frustrated. The doctors are equally frustrated because they have no clue how to help us. So the defense mechanism for the doctors who are on the unprofessional side is for them to bond and label us as wasting their time and problem patients. Put the blame on the patient so any incompetence that may be perceived of them doesn’t show up in their visit notes.
I have asked the medical records to clarify in the doctors notes about how I have lived within 3 different states since 2020, but I doubt it will get changed. I left feedback notes on the after visit survey I got. I have never gotten responses. Low priority in the understaffed medical systems. They wonder why patients then go to the Heathgrades and WebMd type sites and then doctors get riled up about the feedback the whole world can now read. It’s sad patients have to resort to social media because medical systems don’t provide adequate feedback and discrepancy resolution systems.
But my warning is mostly to just know how they have the powers in their notes, whether you see them or not, to tarnish you as the patient in order to defend themselves, and doctors as a group probably tend to defend and believe each other. I’m actually keeping my next appointment with this witch because I figure my best chance of getting her attention and to keep to the facts is if it I have it in my notes for her and discuss it 1 on 1. Besides, if I switch from her to a new Neurologist, I’ll get dinged on the next Neurologist’s notes for being on #6!