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.

@lisette43

I am game to start this protocol. Do you take any other supplement to maintain good health? I have done my own research and taken many of these supplements but it certainly would be easier to have this program. Any warnings or suggestions. Thanks, Lisette

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Hi @lisette43, Welcome to Connect. I do add Turmeric and Ubiquinol along with the Protocol 525 to hopefully help with my PMR and other conditions I have. I also started adding some Vital Proteins Collagen Peptides daily to my first cup of coffee to help with my thin skin and nails. The only warning I'm aware of is the ramp up version of the 525 for new users for the R-ALA because if you've never taken it before starting at 1200 mg daily can cause some people discomfort. I also would print out a list of the ingredients and discuss them with your doctor to make sure there aren't any problems with any medications you are currently taking. You might also want to read through the FAQs on the product website here - https://theprotocol525.com/faq/ where you can copy a list of the ingredients to share with your doctor.

Since I was already taking close to the R-ALA amount in the protocol before I started the new 525 I didn't need to do the ramp up. I think the discomfort that some folks had was with stomach issues. I would be interested in hearing how it goes for you after you start on the protocol. The group has been holding Zoom and Facebook live meetings once in awhile that you might find helpful. They normally have an announcement in their Facebook group feed of when they are having a Zoom meeting. Here is a post by another member on the protocol that you may find helpful - https://connect.mayoclinic.org/comment/611196/.

If you have any other questions about the protocol 525 I would be happy to share my experience and what I know about it.

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Thanks. I am taking 600 ng R-ALA already so I probably would not need the ramp up. I plan to visit a naturopath next and see what he ways says about the 525 protocol.

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@lisette43

Thanks. I am taking 600 ng R-ALA already so I probably would not need the ramp up. I plan to visit a naturopath next and see what he ways says about the 525 protocol.

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Would you please post what the naturopath has to say about the 525 protocol.

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Thank you for giving me hope that there is something I can try. Wondering if any diet changes can help. I do have one glass of wine every evening and wondering If I stop, would it make a difference in the numbness.

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@sbbarbara

Thank you for giving me hope that there is something I can try. Wondering if any diet changes can help. I do have one glass of wine every evening and wondering If I stop, would it make a difference in the numbness.

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@sbbarbara, I really think diet and exercise plays an important role in health. Here's some information from the Foundation for Peripheral Neuropathy on nutrition and diet when you have neuropathy --- https://www.foundationforpn.org/living-well/lifestyle/nutrition/

I'm not sure a glass of wine in the evening will make a difference but I have no medical training or background and it's just my opinion. I stopped drinking beer and wine after learning that too much can induce neuropathy and I already had neuropathy so decided to quit. Here's some information on the topic.

"Does alcohol affect neuropathy? - Yes, too much alcohol can cause neuropathy. Drinking is the second-leading cause of neuropathy, so the elimination of alcohol is the best thing you can do for yourself. If you abstain from alcohol, your neuropathy shouldn't get any worse." -- 6 Causes of Neuropathy — and How to Manage the Condition: https://healthblog.uofmhealth.org/health-management/6-causes-of-neuropathy-and-how-to-manage-condition

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@johnbishop

@sbbarbara, I really think diet and exercise plays an important role in health. Here's some information from the Foundation for Peripheral Neuropathy on nutrition and diet when you have neuropathy --- https://www.foundationforpn.org/living-well/lifestyle/nutrition/

I'm not sure a glass of wine in the evening will make a difference but I have no medical training or background and it's just my opinion. I stopped drinking beer and wine after learning that too much can induce neuropathy and I already had neuropathy so decided to quit. Here's some information on the topic.

"Does alcohol affect neuropathy? - Yes, too much alcohol can cause neuropathy. Drinking is the second-leading cause of neuropathy, so the elimination of alcohol is the best thing you can do for yourself. If you abstain from alcohol, your neuropathy shouldn't get any worse." -- 6 Causes of Neuropathy — and How to Manage the Condition: https://healthblog.uofmhealth.org/health-management/6-causes-of-neuropathy-and-how-to-manage-condition

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Thank you so much for th e information!

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I have you checked with your pharmacist to see if they ever heard of this substance? Have you tried this protocal?

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@martyk

I have you checked with your pharmacist to see if they ever heard of this substance? Have you tried this protocal?

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Just a quick note, I don't believe it's a matter of if they have ever heard of this substance. I did run all of the original supplements in the current 525 product when we were ordering them separately. It was over 20 pills daily for all of the supplements and vitamins we were taking in the Facebook group. Because it was difficult for a lot of members to take so many pills, the person who started the group, Bob Diamond, worked with a local pharmaceutical company to see if we could combine some of the vitamins into a smaller number of pills. Hence the name 525 (5 capsules in the morning, 2 at noon, 5 in the evening vs the 20+ pills). The cost is close to the same amount we were paying through Amazon to purchase the individual items, about $6.50/day. Another benefit is that the different items were ordered when you ran out and they typically ran out at different times during the month due to how many pills were in each product.

All of the products have scientific evidence of benefiting/helping nerve regeneration and health. I ran the original list of supplements by my Mayo doctor who sent them to a pharmacist for their thoughts and she didn't have an issue with them. Most of the ingredients are listed on the Foundation for Peripheral Neuropathy here: https://29fvx519grkh3bdqrc16zioc-wpengine.netdna-ssl.com/wp-content/uploads/2016/10/Supplements-Not-highlighted.pdf. Here's another article that lists a lot of the same supplements - https://www.healthline.com/health/neuropathy-supplements

I started taking the Protocol 525 in Sept 2016 before it became the Protocol 525 and we ordered everything through Amazon and sometimes the manufacturer's website if the price was better. I only have the numbness and do feel that it has slowed or possibly stopped the progression of my idiopathic small fiber PN as the numbness was close to the knees in both legs when I started and within a few months of taking the supplements it seemed to be just above my ankles. Since I had tried so many different things with very little help, this was a big deal for me. I realize that this is a little subjective on my part and it may not work for everyone but if you've tried everything else it may be worthwhile to try. I would certainly run it by my doctor first just to make sure there are no interactions with any other medications you may be taking.

The ingredients for the Protocol 525 are listed under the frequently asked questions on their site here: https://theprotocol525.com/faq/. Good luck whatever you decide. I hope you find something that helps!

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@johnbishop

Just a quick note, I don't believe it's a matter of if they have ever heard of this substance. I did run all of the original supplements in the current 525 product when we were ordering them separately. It was over 20 pills daily for all of the supplements and vitamins we were taking in the Facebook group. Because it was difficult for a lot of members to take so many pills, the person who started the group, Bob Diamond, worked with a local pharmaceutical company to see if we could combine some of the vitamins into a smaller number of pills. Hence the name 525 (5 capsules in the morning, 2 at noon, 5 in the evening vs the 20+ pills). The cost is close to the same amount we were paying through Amazon to purchase the individual items, about $6.50/day. Another benefit is that the different items were ordered when you ran out and they typically ran out at different times during the month due to how many pills were in each product.

All of the products have scientific evidence of benefiting/helping nerve regeneration and health. I ran the original list of supplements by my Mayo doctor who sent them to a pharmacist for their thoughts and she didn't have an issue with them. Most of the ingredients are listed on the Foundation for Peripheral Neuropathy here: https://29fvx519grkh3bdqrc16zioc-wpengine.netdna-ssl.com/wp-content/uploads/2016/10/Supplements-Not-highlighted.pdf. Here's another article that lists a lot of the same supplements - https://www.healthline.com/health/neuropathy-supplements

I started taking the Protocol 525 in Sept 2016 before it became the Protocol 525 and we ordered everything through Amazon and sometimes the manufacturer's website if the price was better. I only have the numbness and do feel that it has slowed or possibly stopped the progression of my idiopathic small fiber PN as the numbness was close to the knees in both legs when I started and within a few months of taking the supplements it seemed to be just above my ankles. Since I had tried so many different things with very little help, this was a big deal for me. I realize that this is a little subjective on my part and it may not work for everyone but if you've tried everything else it may be worthwhile to try. I would certainly run it by my doctor first just to make sure there are no interactions with any other medications you may be taking.

The ingredients for the Protocol 525 are listed under the frequently asked questions on their site here: https://theprotocol525.com/faq/. Good luck whatever you decide. I hope you find something that helps!

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I just started taking Protocol 525 for peripheral neuropathy. I checked with both my PC doc and my PT and neither had a problem with the components in Protocol 525. Also, a Doctor of Eastern Medicine I talked to thought it would be good to try. I will post updates.

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@bwin11

I just started taking Protocol 525 for peripheral neuropathy. I checked with both my PC doc and my PT and neither had a problem with the components in Protocol 525. Also, a Doctor of Eastern Medicine I talked to thought it would be good to try. I will post updates.

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Hi John, Based on what i've picked up from you and a few other credible sources of info, i think i will try the Protocol 525, despite the fact that i'm hesitant because of ALA ingredient and my hypo thyroid/levothyroxin issue which i have read is a reason to be careful. I have consulted my endocrinologist and we will do a blood test in about 3 months from the start of the program. Since my sensory nerve neuropathy has become quite aggressive of late, spreading to my upper limbs and back and chest for no apparent reason, I have to try something, whatever the cost. Thanks for your input on this product.

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