Have you tried the new Protocol 525 product for neuropathy relief?

Posted by John, Volunteer Mentor @johnbishop, Apr 21, 2020

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.

NJ Ed | @njed | Oct 27, 2022

In reply to @johnbishop "Thanks Ed! We’re all in this life together and being able to help others also helps..." + (show)

John, yes .... we are all in this together but interesting enough, only those of us with peripheral neuropathy really know what it's like.

Debbie | @dbeshears1 | Oct 27, 2022

In reply to @njed "Mentor John - Thanks for the update and great news! I was told the same, my..." + (show)

@johnbishop , ditto what he said! To both of you, my docs have never mentioned any progression (or regression) expectations of my neuropathy. I’m more accustomed to “we’ll wait and see” and deal later. Obviously I want to do all I can to maintain and even improve, hence making this Mayo forum a real lifeline for me. I’m going to ask the direct question about expected progression (or not) in my next visit - that’s on me. But may I ask how it’s measured? I think for me, comparison of EMG’s may already be showing, and I need to ask if they’ve shown changes, though my last one was 2 yrs ago I think. But for folks that have SFN or negative EMG’s, how is it measured? Strength, performance tests etc?

John, Volunteer Mentor | @johnbishop | Oct 27, 2022

In reply to @dbeshears1 "@johnbishop , ditto what he said! To both of you, my docs have never mentioned any..." + (show)

I'm guessing the only reliable way to compare then and now and show progression or healing is with a skin punch biopsy since that's the gold standard (IMHO) for diagnosing SFN. Which means you would have to have had a skin punch biopsy to start with and another to see if it's worse or has progressed. I think you know how you feel and if your symptoms are better or worse than the doctor, so why remove another tiny section of skin to count nerve density. I think a nerve conduction test could also show things have gotten worse or better but I really don't know. Might be a great question to ask you doctor.

Debbie | @dbeshears1 | Oct 27, 2022

In reply to @johnbishop "I'm guessing the only reliable way to compare then and now and show progression or healing..." + (show)

Thanks John - I sure will ask. I’ve only met my current neurologist once, but my 6 month appt is coming up. I felt positive after our intro and think he’ll be a great partner in helping me with this. Some folks on here like you and the other mentors have shown you can live very positively with this unfortunate affliction, for a long time, with managing the things we are able to control. Thanks again for all you help this group with!

John, Volunteer Mentor | @johnbishop | Oct 27, 2022

In reply to @dbeshears1 "Thanks John - I sure will ask. I’ve only met my current neurologist once, but my..." + (show)

Have you seen this website? 🙂
https://patientrevolution.org/visit-tools

NJ Ed | @njed | Oct 27, 2022

John - I'll jump in as well. I did question my neurologist about a skin biopsy and the reply was on the order of - look, we know you have PN, even if we do a skin biopsy, what would we do about it?
Made sense to me so I did not pursue it.

John, Volunteer Mentor | @johnbishop | Oct 27, 2022

In reply to @njed "John - I'll jump in as well. I did question my neurologist about a skin biopsy..." + (show)

That's my feeling also and why I never pursued one after my diagnosis. I had been dealing with neuropathy symptoms of numbness for more than 20 years before seeking a diagnosis. I also didn't like the idea of a skin punch biopsy to measure nerve density. I mean it's a tiny piece of skin but it's killing all the nerves that were removed 🙂 I did have the nerve conduction test a couple of times also but they were part of the diagnosing process.

NJ Ed | @njed | Oct 27, 2022

In reply to @dbeshears1 "@johnbishop , ditto what he said! To both of you, my docs have never mentioned any..." + (show)

Deb - I am not in the medical field but I've been around enough to know that if you don't ask, you won't get all the answers to your questions. In my opinion, some doctors will not offer information that you want to know unless you ask. When I'm headed to the doctor's office, I go in with my questions written down. I make sure they see my table with my notes. This helps you stay focused. It comes down to this, if you want to know, you have to ask. I think it is wise to trust the judgement of your doctor with respect to any progression of your PN symptoms. Wish you the best at your next appt.

bovic21 | @bovic21 | Oct 28, 2022

In reply to @aemedic "As this thread is about the protocol, they deserve proper credit for development of the program...." + (show)

@aemedic
Thank you for your post on the ingredients and brands of the Protocol 525. I do agree that the people who are handling the Protocol deserve the credit, but right now I can't afford their monthly cost.
Since I found this forum a couple of months age I have started taking R-Alpha Lipoic Acid and Acetyl-L-Carnitine. They seemed to have helped and now considering taking all the supplements in the Protocol.
Are you buying the individual supplements and if so would you mind sharing your monthly cost? And are you seeing a benefit, relief from taking these pills?
Thanks for your help

AEmedic | @aemedic | Oct 28, 2022

In reply to @bovic21 "@aemedic Thank you for your post on the ingredients and brands of the Protocol 525. I..." + (show)

I do take all of these supplements. I immediately noticed changes in how I felt. It didn’t give me a cure but I noticed a change. It stopped the progression and made it so the burning and tingling in my feet didn’t keep me up all night. I couldn’t stand my sheets touching my feet at night and that is almost completely gone. It took a couple of months to get to that point. I will try and let you know what the cost is, but I get almost everything from Amazon on subscribe and save.