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Mentor

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.

bovic21 | @bovic21 | Oct 28, 2022
In reply to @aemedic "I do take all of these supplements. I immediately noticed changes in how I felt. It..." + (show)
@aemedic

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.

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@aemedic
Thanks for your quick reply.
I'm happy to hear the supplements are helping you. I'm not at the point where sheets hurt me at night, so hoping I can slow this awful disease down before that happens.
And I just thought you might have figured the cost, but no worries.
I did a quick search on Amazon and came up with about $3.75 a day or approximately $115 a month. That I can do and the saving are worth the effort.
In my calculations I did use a different brand for R ALA and Acetyl-L-Carnitine. I used Premium Supplements for R-ALA and Now Supplements for ALC, both on Amazon.

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2 replies
fala | @fala | Oct 28, 2022
In reply to @johnbishop "I'm guessing the only reliable way to compare then and now and show progression or healing..." + (show)
@johnbishop

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.

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Hi John, thanks for all you valuable information for the group on a regular basis.
My SFN is Idiopathic. Also. I did not have a skin punch, so as my SFN progresses, I can only tell the extent of my progression with a sensitivity test in the Doctors office.
Therefore, I have concluded, for me, is that I should do everything I can (through tips,) to keep my circulation going the best possible. Will exercise, massage or acupuncture, slow down the progression? Of course I want the most relief from pain I can get (without drug side effects.) It would be nice to know the "why" or if it was in the genes, but does that really help? If I can SLOW DOWN the progression, isn't that primary? What is your opinion?
This group is much more helpful than my Neurologist.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Oct 28, 2022
In reply to @fala "Hi John, thanks for all you valuable information for the group on a regular basis. My..." + (show)
@fala

Hi John, thanks for all you valuable information for the group on a regular basis.
My SFN is Idiopathic. Also. I did not have a skin punch, so as my SFN progresses, I can only tell the extent of my progression with a sensitivity test in the Doctors office.
Therefore, I have concluded, for me, is that I should do everything I can (through tips,) to keep my circulation going the best possible. Will exercise, massage or acupuncture, slow down the progression? Of course I want the most relief from pain I can get (without drug side effects.) It would be nice to know the "why" or if it was in the genes, but does that really help? If I can SLOW DOWN the progression, isn't that primary? What is your opinion?
This group is much more helpful than my Neurologist.

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Hi @fala, I wished I had a good answer for you. Each of us and our symptoms are different but we have the neuropathy condition (nerve damage) in common. I do think healthier living helps and I've looked to supplements to help provide the peripheral nerves what they need if there really is going to some "healing". My early searching took me to Dr. Terry Wahls story on relieving her symptoms of MS through cellular nutrition. Here's a link to her story if you haven't read it before - https://terrywahls.com/about/about-terry-wahls/. Shortly after that I found the protocol of supplements which has helped me to slow down and possible stop the progression.

I don't have the pain as a symptom but speaking of massage therapy, you might want to check out this discussion:
-- Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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Mentor
John, Volunteer Mentor | @johnbishop | Oct 28, 2022
In reply to @bovic21 "@aemedic Thanks for your quick reply. I'm happy to hear the supplements are helping you. I'm..." + (show)
@bovic21

@aemedic
Thanks for your quick reply.
I'm happy to hear the supplements are helping you. I'm not at the point where sheets hurt me at night, so hoping I can slow this awful disease down before that happens.
And I just thought you might have figured the cost, but no worries.
I did a quick search on Amazon and came up with about $3.75 a day or approximately $115 a month. That I can do and the saving are worth the effort.
In my calculations I did use a different brand for R ALA and Acetyl-L-Carnitine. I used Premium Supplements for R-ALA and Now Supplements for ALC, both on Amazon.

Jump to this post

@aemedic and @bovic21, The Protocol 525 figures out to be $7.33/day at $220/month. Before the person who started the Facebook group worked with a local pharmaceutical firm and created the Protocol 525 by combining a few of the supplements together for fewer pills, we used to have a list of links that we all used for ordering mostly from Amazon. The problem I had with ordering each supplement is that you were always running out of some vitamins before others due to the quantity of capsules in each product. So it was more work to stay on top of ordering so you didn't run out. Right now the group is in an interim and they are working on a new blended version of the protocol which is why you see the different products by brand name. Hoping you both get relief however you order the supplements!

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2 replies
AEmedic | @aemedic | Oct 28, 2022
In reply to @bovic21 "@aemedic Thanks for your quick reply. I'm happy to hear the supplements are helping you. I'm..." + (show)
@bovic21

@aemedic
Thanks for your quick reply.
I'm happy to hear the supplements are helping you. I'm not at the point where sheets hurt me at night, so hoping I can slow this awful disease down before that happens.
And I just thought you might have figured the cost, but no worries.
I did a quick search on Amazon and came up with about $3.75 a day or approximately $115 a month. That I can do and the saving are worth the effort.
In my calculations I did use a different brand for R ALA and Acetyl-L-Carnitine. I used Premium Supplements for R-ALA and Now Supplements for ALC, both on Amazon.

Jump to this post

I tried to be very true to the protocol and use exactly what they presented on their site. There could be reasons that they show specific brands… At one time I did a cost comparison but I just don’t exactly remember the details, so I didn’t want to guess. The Protocol does work for many people.

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bovic21 | @bovic21 | Oct 28, 2022
In reply to @johnbishop "@aemedic and @bovic21, The Protocol 525 figures out to be $7.33/day at $220/month. Before the person..." + (show)
@johnbishop

@aemedic and @bovic21, The Protocol 525 figures out to be $7.33/day at $220/month. Before the person who started the Facebook group worked with a local pharmaceutical firm and created the Protocol 525 by combining a few of the supplements together for fewer pills, we used to have a list of links that we all used for ordering mostly from Amazon. The problem I had with ordering each supplement is that you were always running out of some vitamins before others due to the quantity of capsules in each product. So it was more work to stay on top of ordering so you didn't run out. Right now the group is in an interim and they are working on a new blended version of the protocol which is why you see the different products by brand name. Hoping you both get relief however you order the supplements!

Jump to this post

@johnbishop and @aemedic
John, thank you for the information. And I'm sure it was a big relief to be able to place one order, get fewer pills to take and still have the full effect of the Protocol.
Not knowing for sure if the Protocol will work for me or not, it is nice to have a cheaper version (ordering the supplements individually) to try for a few months. Then if I find that it works for me and after I start getting the social security increase I'll try the convenient way.

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ea1 | @ea1 | Oct 29, 2022
In reply to @njed "John - I'll jump in as well. I did question my neurologist about a skin biopsy..." + (show)
@njed

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.

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I got the same input from my Neurologist. Skin biopsy is inaccurate in any case

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 29, 2022
In reply to @ea1 "I got the same input from my Neurologist. Skin biopsy is inaccurate in any case" + (show)
@ea1

I got the same input from my Neurologist. Skin biopsy is inaccurate in any case

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Can you point to any evidence based information on why you say the skin punch biopsy is inaccurate? It's really the gold standard according to many neurologists for diagnosing neuropathy.

-- 2022 - Role of skin punch biopsy in diagnosis of small fiber neuropathy-A review for the neuropathologist: https://www.ijpmonline.org/article.asp?issn=0377-4929;year=2022;volume=65;issue=5;spage=329;epage=336;aulast=Narasimhaiah
-- 2009 - Diagnosing Small Fiber Neuropathy Through the Use of Skin Biopsy:
https://practicalneurology.com/articles/2009-oct/PN1009_06-php

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1 reply
Debbie | @dbeshears1 | Oct 29, 2022
In reply to @fala "Hi John, thanks for all you valuable information for the group on a regular basis. My..." + (show)
@fala

Hi John, thanks for all you valuable information for the group on a regular basis.
My SFN is Idiopathic. Also. I did not have a skin punch, so as my SFN progresses, I can only tell the extent of my progression with a sensitivity test in the Doctors office.
Therefore, I have concluded, for me, is that I should do everything I can (through tips,) to keep my circulation going the best possible. Will exercise, massage or acupuncture, slow down the progression? Of course I want the most relief from pain I can get (without drug side effects.) It would be nice to know the "why" or if it was in the genes, but does that really help? If I can SLOW DOWN the progression, isn't that primary? What is your opinion?
This group is much more helpful than my Neurologist.

Jump to this post

I agree with this group being better than the Neurologist. We are on the front line living and learning from each other, while our doctors, while very important teammates, are having to learn and collect data from us while trying to figure this thing out.
I have idiopathic PN, but my neurologist says it is not SFN. However, I’m learning that so many of my symptoms are so similar to those told they have SFN. So I act is if this thing will progress unless I don’t do whatever I can do to facilitate health and strength, including vitamins, self-massage, diet, PT, and positive thinking. I tried acupuncture and was pleased with the benefits. I hope you find the combination that works for you, both physically and mentally.

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ea1 | @ea1 | Oct 29, 2022
In reply to @johnbishop "Can you point to any evidence based information on why you say the skin punch biopsy..." + (show)
@johnbishop

Can you point to any evidence based information on why you say the skin punch biopsy is inaccurate? It's really the gold standard according to many neurologists for diagnosing neuropathy.

-- 2022 - Role of skin punch biopsy in diagnosis of small fiber neuropathy-A review for the neuropathologist: https://www.ijpmonline.org/article.asp?issn=0377-4929;year=2022;volume=65;issue=5;spage=329;epage=336;aulast=Narasimhaiah
-- 2009 - Diagnosing Small Fiber Neuropathy Through the Use of Skin Biopsy:
https://practicalneurology.com/articles/2009-oct/PN1009_06-php

Jump to this post

My neurologists didn’t recommend having a biopsy and claimed that it is far from being a “gold standard”.

The article below address some of the difficulties with using this test. https://jnnp.bmj.com/content/93/9/915

The table below from another article claims that 30% of people with SFN get normal test results.

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