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.

pamelaz | @pamelaz | Nov 9, 2022

Does it work for really bad neuropathy?

John, Volunteer Mentor | @johnbishop | Nov 10, 2022

In reply to @pamelaz "Does it work for really bad neuropathy?" + (show)

@pamelaz, It has helped me but I only have numbness and some minor tingling. I think each of us are a little different and what works for one may not work for others. A member who is active in the Facebook group but doesn't really follow Connect posted how it helped him in another discussion here:

@evansjohn007 -- https://connect.mayoclinic.org/comment/611196/

wissbrun | @wissbrun | Dec 8, 2022

Since reading the discussion about Protocol 525 I have begun using it some months ago I have noticed
significant improvement of the numbness in my feet. I hope that this improvement will continue as I continue
using the Protocol.

More significant to me was that the pain I have suffered for years in my back and hips has DISAPPEARED!
I have not taken a single Advil, nor have I resorted lying on a hot pad to ease the pain for weeks now. I have
attributed the pain to arthritis in my spine, which has been diagnosed by X-ray for years.

I will certainly continue with the Protocol. I am curious to learn whether other users of the Protocol
have had similar experience.

John, Volunteer Mentor | @johnbishop | Dec 8, 2022

In reply to @wissbrun "Since reading the discussion about Protocol 525 I have begun using it some months ago I..." + (show)

Hello @wissbrun, Welcome to Connect. Thank you so much for sharing your experience with the Protocol 525. I've only had numbness with my neuropathy but I've been on the protocol since Sept 2016 and by December of that year the numbness felt better but didn't totally go away. What I'm thrilled about is that it hasn't progressed which the neurologist said would happen. It's great to hear that the pain for you has disappeared. I'm still on the protocol and excited about when they can actually get it in liquid form and be rid of the pills which is still a few years away.

You will notice that we removed your email address to protect your privacy since Connect is a public forum and we don't want spammers harvesting email addresses. Member can share personal contact information by using the private message function. Just click on a members name to go to their profile and click the Send Private Message link at the bottom of their profile description.

Can you keep us updated on any new progress with the Protocol 525?

John, Volunteer Mentor | @johnbishop | Jul 2, 2023

Hi @njed - I'm sorry I didn't tag you from this discussion earlier so as not to hijack Ray's @ray666 discussion on EB-N5 and change the subject which can be confusing for other members wanting to know more about EB-N5.

Appears that I forgot to answer one of your questions, sorry. Although the supplements probably play a part in helping with my balance problems, I think there are other factors at play including losing some leg muscle strength. It was about 3 to 4 months after starting the protocol that I began to feel less numbness up my legs (from Sep 2016 to Dec 2016) and the progression appeared to have slowed down or stopped at that time. That is subjective on my part because I have had no testing to confirm other than how I feel.

In the past 6 months I have been getting some feeling back into the bottom of my feet. Kind of hard to explain, they are still numb but I can feel the toes and soles of the feet when I walk or take steps. The last 2 months I stopped wearing shoes with memory foam soles and inserts. I switched to ones with a thin rubber sole and flat bottom (zero drop soles). The down side is it's a little jolting on the body when walking outside but you can feel the ground and it helps with my balance. I did a little research and found some info on the pros and cons and also some research that mentions it can be a benefit.

--- Are Minimalist Barefoot Shoes Good For Elderly Adults? (Probably Not!): https://www.grayingwithgrace.com/minimalist-barefoot-shoes-elderly/
--- Minimal footwear improves stability and physical function in middle-aged and older people compared to conventional shoes: https://www.sciencedirect.com/science/article/pii/S0268003319304231

Hope this helps!

kensiejames | @kensiejames | Aug 11, 2023

Thank you for sharing your experience!! It’s expensive but I am going to give the Protocol 525 a try. Hopefully I will get a positive result.

konrad123 | @konrad123 | Aug 13, 2023

What is it and where do you find it!

John, Volunteer Mentor | @johnbishop | Aug 13, 2023

In reply to @konrad123 "What is it and where do you find it!" + (show)

They have a list of frequently asked questions that might be helpful on their website here:
--- https://theprotocolworks.com/faq/

1oldsoul | @1oldsoul | Nov 11, 2023

In reply to @cmartinjr "I have Experienced small fiber peripheral neuropathy for about 4 yrs with mostly pain in my..." + (show)

Hello cmartinjr, I came across your old Mayo Clinic post from 2020 and am wondering how you are doing now and if you found any benefit from the supplements you continued after the Protocol 525. I am blessed that the neuropathy I have experienced in the past is mild and intermittent but have recently been working with a naturopathic physician who feels heavy metal toxicity can cause these neuropathies. Hair mineral analysis from two different doctors and labs performed one year apart show I have aluminum toxicity (which I understand is not that uncommon today with aluminum in antiperspirants, baking soda etc) and so I am using natural supplements to try and pull the aluminum out of my body slowly as I am sensitive to side effects. Since I have always been sensitive to medicines I have found it necessary to look to alternative medicine for help. I hope you are well and I’m sure there will be others on the forum who would be interested in hearing your experiences with those supplements after 3 years. God bless.

John, Volunteer Mentor | @johnbishop | Nov 11, 2023

In reply to @1oldsoul "Hello cmartinjr, I came across your old Mayo Clinic post from 2020 and am wondering how..." + (show)

Hi @1oldsoul, I'm not sure @cmartinjr is still following Connect as he was last active in August 2021 from viewing his profile. I've been using the the Protocol 525 since 2016 but I only have numbness with my neuropathy. I do believe it has helped slow or possibly stopped the progression of my neuropathy but it's subjective on my part since I have not been retested to see if there has been any nerve generation. The product has been renamed back to the original name The Protocol - https://theprotocolworks.com/faq/ because it's no longer 525 (5 capsules in the morning, 2 at noon, 5 in the evening). Currently we take 4 capsules in the morning, 2 at noon and 4 in the evening. The frequently asked questions (link above) on the website has a list of the ingredients along with other FAQs.

I included a PDF version of the Why the Protocol information in the FAQs on the website and included the links to the research articles that might b helpful if you are looking for why it might help.

Shared files

Why the Protocol (WHY-THE-PROTOCOL-1.pdf)