Have you tried the new Protocol 525 product for neuropathy relief?
I have used the original version of the Protocol 525 product (https://theprotocolworks.com/) since 2016. I have idiopathic small fiber peripheral neuropathy with the only symptom being numbness in both legs. When I started taking the protocol, the numbness was just below my knees. After 2 months, the numbness seems to be just above the ankles which is subjective on my part with no additional testing. I do feel it is a win-win for me as my neuropathy has not progressed like I was told it would by the neurologist. I have continued taking the protocol in hopes that it may continue to roll back the numbness symptoms. I have noticed some new feeling in my feet in the last 2 months. Some feeling has returned to me feet and they seem to feel better lately although I still have the numbness – hard to describe the difference.
The Protocol 525 is not a cure for neuropathy. It treats the pain and discomfort symptoms of neuropathy without the drugs which have their own side effects. Have you tried the Protocol 525 or the original protocol? Did it help? If yes, how? If no, please share.
Note: I have no commercial investment in the protocol and I am sharing this information as someone who has found some degree of relief using this combination of supplements. I also discussed these supplements with my Mayo primary care team before I started taking them. The care team sent them to the pharmacist for review who did not have any major concerns for me taking them.
*** Edited Oct 3, 2023 ***
For more information and a list of the ingredients, please see the frequently asked questions on the Protocol's website here - https://theprotocolworks.com/faq/.
Interested in more discussions like this? Go to the Neuropathy Support Group.
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@pua0609 the protocol is just vitamins and they could be purchased separately at less cost but would not be as convenient. However, my concern is this. I took the protocol for 4 months and saw no improvement but planned to continue to try it but after I posted about a new treatment being studied by Winsantor that has shown great promise including regeneration of nerves as evidenced in EMG and nerve biopsy in stage 1 and 2 clinical trial I was removed from the Facebook group and blocked from even seeing the group. I said nothing negative about the protocol and the drug is still in testing phase. Any group that is that controlling and not at all interested in other possible new treatments cant legitimately be trying to help people. They are just selling expensive vitamins.
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1 Reactionthe protocol is just vitamins and they could be purchased separately at less cost but would not be as convenient. However, my concern is this. I took the protocol for 4 months and saw no improvement but planned to continue to try it but after I posted about a new treatment being studied by Winsantor that has shown great promise including regeneration of nerves as evidenced in EMG and nerve biopsy in was removed from the group and blocked so I can not even see the group. Any group that is this controlling can't be trying to help people they are just selling more expensive vitamins. I know of others who are removed from the group if they even hint that the protocol is not helping.
@bb0753 Thanks for sharing. So many crackpot scammers out there trying to take our hard earned money. Not sure how they can sleep at night.
Hope you can find something that helps you.
I've been a member of the Facebook group since early 2016 and I'm still taking the protocol. I can say that it has helped me at least slow the progression of my idiopathic small fiber PN but I only have numbness and some tingling with no pain. My symptoms have actually improved since and the ever looming progression seems to have been stopped for me.
To someone who has been with the group since we used to have a document with links for ordering the individual supplements from the manufacturer or Amazon for the free shipping (B1, B2, B3, B7, Flaxseed Oil, Na R ALA, D3, Chelated Magnesium, Folate, Methylcobalamin B12, K2, and Acetal L Carnitine), $6/day doesn't seem too expensive although that's just my opinion. A side benefit for me has been dealing with fewer capsules to swallow along with not having to constantly be ordering supplements because some were shipped with different quantities.
To be honest, the Facebook group is comprised of active members who have found real relief for their condition and get frustrated when members keep asking questions about new treatments. I don't really like that aspect of the Facebook group but at least they are up front and will tell you they are not looking for other treatments when it works for them. I can also tell you that the FB group including myself have helped other group members who couldn't afford the protocol in the beginning. The group has been hacked by outsiders several times and that really is the reason they might seem a little controlling. Here on Connect, we have a great set of moderators along with a director who keep our community safe and open to all.
I've shared the research behind the different supplements in the protocol before but thought I would share them again. You can buy them each separately but I really doubt that it would be cheaper but it would also mean taking more capsules daily.
Why the Protocol (Why-the-Protocol.pdf)
Yes John i do believe these vitamins are research based. Although I saw no improvement during the 4 months I took them I do believe they are beneficial if the cause of neuropathy is some type of vitamin deficiency. So far mine still remains idiopathic. I hope everyone finds what helps them.
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1 ReactionI didn’t see much improvement the first four months either and like a lot of treatments it may or may not help everyone. My diagnosis is also idiopathic but I do think it may be caused by my being in the metabolic syndrome category most of my adult life. I just wished my PCPs along the way would have told me about the metabolic syndrome instead of just saying I was pre-diabetic.
Hello, I'm new to the group and have not read every comment/reply so possibly my contributions will be redundant. 3 years ago I was diagnosed with polyneuropathy (likely axonal damage) and Mal de Debarquement Syndrome (I think the French is the universal med term), the latter basically, as translated, the sensations one experiences when on land following a long sea voyage ... the earth is constantly moving beneath me not unlike being on a boat in varying swells (I'm not a sailor and very rarely on boats of any sort). The combination of the two conditions creates interesting challenges! The PN has been progressive with gradual loss of feeling initially, starting on left side, in the feet and gradually working up through the lower leg. In the past 6 months this loss of feeling in now in my fingers.
When the so-called specialists could not recommend any solutions other than pain remedies, which thankfully I don't experience, I began reviewing the available research on healing damaged nerves. There is considerable research with much more needed but I have found a basic consensus in several areas that to 'x' extent are discussed in this forum. Vitamins B1 B12 and B6 - B6 is known for its toxicity as has been mentioned in other comments - seems to be well established for not just protecting nerves but also for promoting healing of damaged nerves and best when working in combination. My basic protocol is a combination of B1 and B12 in relatively high doses with very limited doses of B6.
I do not want to mislead anyone so please know that I am highly dyslexic and can easily confuse what I am reading, not least technical details. So, rather than suggest a specific protocol, my aim is to provide some leads with the hope that others with greater skills can carry this forward. I specify 'research' with each search, sometimes using 'Pubmed research' but that's just my limited understanding of how to search these matters. Here is a recent (2025) paper you may find of interest:
The Combination of Neurotropic Vitamins B1, B6, and B12 Enhances Neural Cell Maturation and Connectivity Superior to Single B Vitamins
I've just learned that I cannot post links so the above was found within this search 'research pubmed dose axonal b12 b1 b6' which has other research papers you might find relevant.
Many thanks to each and all for your contributions which I am now gradually finding my way through 🙂
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3 ReactionsHello @chucke, Welcome to Connect. Thank you for sharing your experience. New members are not allowed to post links for a short period of time to protect our community from advertisers and spammers. I thought I would share the link for you.
-- The Combination of Neurotropic Vitamins B1, B6, and B12 Enhances Neural Cell Maturation and Connectivity Superior to Single B Vitamins: https://pubmed.ncbi.nlm.nih.gov/40214431/.
In case you haven't already seen it, the Foundation for Peripheral Neuropathy has a list of supplements shown to help with nerve health - https://www.foundationforpn.org/vitamins-and-supplements-for-nerve-health/.
Your neuropathy journey sounds much like mine. I only have numbness and some tingling but no pain which brought me to Connect back in 2016. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.
If you are looking for other more specific topics, the search function on Connect is really great for locating other discussions and member experiences. Have you tried it? If not, I would recommend giving it a test run. It's easy, just click the small magnifying glass icon at the top of the window next to the little notifications bell.
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2 ReactionsWhat is Protocol 525?
@crissma, It's no longer called the Protocol 525. Now it's just the Protocol since they reduced the number of capsules you have to take from 5 morning, 2 afternoon, 5 evening to 4 morning, 2 afternoon and 4 evening. They are also working on a liquid version but not sure when it will be available. Here's their website - https://theprotocolworks.com/.
List of the ingredients in the PDF below.
Why the Protocol (Why-the-Protocol.pdf)
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