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://solutions2pnpd.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.

I have been on the protocol for three months. The first 2 1/2 on the original protocol and the last 3 weeks on 525. I have nerve pain all over from inside my mouth, to my low back and groin and down both legs.
To date there is no difference, but I have had this for 8 years and doubt that change will happen quickly, so I pledged to go at least 6 months before considering it a wash (but may be longer, we shall see)

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@kathiejac

I have been on the protocol for three months. The first 2 1/2 on the original protocol and the last 3 weeks on 525. I have nerve pain all over from inside my mouth, to my low back and groin and down both legs.
To date there is no difference, but I have had this for 8 years and doubt that change will happen quickly, so I pledged to go at least 6 months before considering it a wash (but may be longer, we shall see)

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Hi @kathiejac, welcome to Mayo Clinic Connect. Thank you for sharing your experience. It also took me a couple of months before seeing any changes but I'm still taking it for the long haul since it seems to have stopped the progression of my PN even though I only have numbness.

Can you let us know if you see any further changes?

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@johnbishop

Hi @kathiejac, welcome to Mayo Clinic Connect. Thank you for sharing your experience. It also took me a couple of months before seeing any changes but I'm still taking it for the long haul since it seems to have stopped the progression of my PN even though I only have numbness.

Can you let us know if you see any further changes?

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I sure will. I am committed to continue, nothing else has been remotely helpful.

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I have Experienced small fiber peripheral neuropathy for about 4 yrs with mostly pain in my feet with minor numbness. The pain on some days limits my activities to none.. I have the worst pain when standing. I tried the protocol for about 1 1/2 yrs and saw no improvement in the pain, however I still take the R alpha lipoid acid, heavy levels of Omega-3, and magnesium along with my gabapentin and cymbalta. I continue my research and discuss my condition with my pain Doctor, although she is not much help. I plan to try and reduce or eliminate the gabapentin due to the impact it has on my memory. The foundation for peripheral neuropathy has a lot of information that I am trying right now along with all the good information I read on this forum. I know every person is different and I keep trying different things to try what will work the best for me.

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@cmartinjr

I have Experienced small fiber peripheral neuropathy for about 4 yrs with mostly pain in my feet with minor numbness. The pain on some days limits my activities to none.. I have the worst pain when standing. I tried the protocol for about 1 1/2 yrs and saw no improvement in the pain, however I still take the R alpha lipoid acid, heavy levels of Omega-3, and magnesium along with my gabapentin and cymbalta. I continue my research and discuss my condition with my pain Doctor, although she is not much help. I plan to try and reduce or eliminate the gabapentin due to the impact it has on my memory. The foundation for peripheral neuropathy has a lot of information that I am trying right now along with all the good information I read on this forum. I know every person is different and I keep trying different things to try what will work the best for me.

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@cmartinjr, please keep us informed as I identify with your experience and would love to be able to get off the gabapentin but not unless I find something better as it does take the pain away. I do not take cymbalta but do take the other supplements you mentioned. I wish you luck with your research. P.S. Nice picture, glad you can get out to enjoy it.

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@cmartinjr

I have Experienced small fiber peripheral neuropathy for about 4 yrs with mostly pain in my feet with minor numbness. The pain on some days limits my activities to none.. I have the worst pain when standing. I tried the protocol for about 1 1/2 yrs and saw no improvement in the pain, however I still take the R alpha lipoid acid, heavy levels of Omega-3, and magnesium along with my gabapentin and cymbalta. I continue my research and discuss my condition with my pain Doctor, although she is not much help. I plan to try and reduce or eliminate the gabapentin due to the impact it has on my memory. The foundation for peripheral neuropathy has a lot of information that I am trying right now along with all the good information I read on this forum. I know every person is different and I keep trying different things to try what will work the best for me.

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Hello @cmartinjr. I've had peripheral neuropathy going on 4 years. Thanks for weighing in on your case. I discontinued Cymbalta in January as I felt it impaired my memory and I did not feel a benefit for my pain. I continue Lyrica and think it helps although I dont feel any immediate "in my face" help from it. I have used the protocol for 7 months. I'm a believer in most of the components such as ALA, Acetyl L Carnatine, magnesium, Omega 3 and my own add ins like B12, Coq10 and turmeric. The Protocol is expensive and I contemplate discontinuing some of it but, feel so desperate for help on most occasions that I hesitate. I'm an opiod and medical marijuana user for chronic pain and have found no other alternatives to help my pain, sadly.

It was nice to meet you and thanks again for your input. I wish you well and keep on riding as long as you can! Enjoy the day.
Rachel

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Thanks for the info about the protocol, @johnbishop.
You've reported that since starting the protocol. you think your symptoms have leveled off, and may have begun to get better (new feelings in your feet).
Since you have SFP, and therefore an anatomic deficit which can be proven with a biopsy, have you ever considered getting another biopsy done, which may show an increase in nerve fibers, and therefore confirm your subjective feelings.
As you know, this disease is particularly difficult to manage, in part because symptoms are the result of so many variables, including mood. It would be wonderful to be able to demonstrate improvement based on an objective test.
What do you think?

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Where do you buy the medicine

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Has anyone tried the cream? Surterra tincture oil.

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@jeffrapp

Thanks for the info about the protocol, @johnbishop.
You've reported that since starting the protocol. you think your symptoms have leveled off, and may have begun to get better (new feelings in your feet).
Since you have SFP, and therefore an anatomic deficit which can be proven with a biopsy, have you ever considered getting another biopsy done, which may show an increase in nerve fibers, and therefore confirm your subjective feelings.
As you know, this disease is particularly difficult to manage, in part because symptoms are the result of so many variables, including mood. It would be wonderful to be able to demonstrate improvement based on an objective test.
What do you think?

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Hi Jeff @jeffrapp, I had thought about getting retested for my neuropathy but did not follow through. My Mayo neurologist didn't use a punch biopsy for my diagnosis. I had a couple of EMGs and some labs along with a physical exam when he diagnosed me with idiopathic small fiber PN. I did think about seeing if I could get another EMG to see if there was some difference but it's a matter of paying for the tests and getting one scheduled so I haven't pursued it anymore. I agree that it would confirm my subjective feelings quite a lot if the test confirmed improvement. After this COVID-19 situation improves I may talk to my primary care doc to see if I could schedule something that would be covered by my insurance. I missed my annual exam due to COVID so will add it to my list of questions for my doctor. Thanks for the suggestion!

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@johnbishop

Hi Jeff @jeffrapp, I had thought about getting retested for my neuropathy but did not follow through. My Mayo neurologist didn't use a punch biopsy for my diagnosis. I had a couple of EMGs and some labs along with a physical exam when he diagnosed me with idiopathic small fiber PN. I did think about seeing if I could get another EMG to see if there was some difference but it's a matter of paying for the tests and getting one scheduled so I haven't pursued it anymore. I agree that it would confirm my subjective feelings quite a lot if the test confirmed improvement. After this COVID-19 situation improves I may talk to my primary care doc to see if I could schedule something that would be covered by my insurance. I missed my annual exam due to COVID so will add it to my list of questions for my doctor. Thanks for the suggestion!

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Hi John, I was under the impression that SFN was not detectable by EMG; that is what I was told since my 2 EMG tests were negative. Further tests showed nothing so my neurologist assumed by my symptoms I had idiopathic SFN, stating that the treatment would be the same no matter what. Do you know which test specifically showed you to have SFN? I did forego the skin biopsy which she has since offered to do.

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Hi Helen @helennicola, Actually the EMG is one of the tests for diagnosing peripheral neuropathy. I had nerve damage for 20+ years before seeking a diagnosis because I only had numbness and then when talking with the doctors early on I was told if they ran tests and found I had nerve damage there was nothing they could do. Then when I finally "needed" to know and setup an appointment with a neurologist, he setup several appointments including labs, MRI and EMG then he examined me and diagnosed me as idiopathic small fiber PN. And confirmed my biggest fear…there was nothing he could do for the numbness. He also took pictures (with my permission) of my "hammer toes" which he said were typical of someone with peripheral neuropathy. That's what brought me to Connect and learning how to advocate for my own health and learn as much as I can about my health conditions.

Neuropathy Commons has some good information on diagnosing neuropathy and the different tests here:
https://neuropathycommons.org/neuropathy/tests-diagnosing-small-fiber-polyneuropathy

Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin has a YouTube channel with a lot of really good information in easy to understand language in most of his videos: https://www.youtube.com/channel/UCJaXGRxxjnF2mvLiOFmmHLQ

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