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.

@johnbishop

Welcome @ironmaiden, It definitely is good to do your own research. I've been using the protocol since 2016 and it has helped my numbness although it hasn't completely gone away. I feel it's stopped the progression in my case although I've never had pain with my idiopathic small fiber peripheral neuropathy. There is research behind each of the supplements that support nerve health. Like the discussion description notes, 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.

You may be able to buy each of the ingredients cheaper which is how we first started on the Facebook group by buying each supplement using a list with links to the manufactures site or Amazon whichever was cheaper. A lot of the supplements were through Amazon just to get the free shipping. Then the added problem of each of the supplements not having the same quantity of capsules and having to order each of them at different times because another problem for keeping up the supply.

Definitely good luck to each of us with neuropathy because there are a lot of dubious products on the market but from my perspective the 525 protocol which is no longer called the 525 is not one of them. It does bring me to my suggestion for anyone struggling - learn as much as you can about your condition and what treatments are available that might provide relief for your symptoms, and be your own advocate.

Do you mind sharing a little more about your diagnosis and any treatments you have found helpful?

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Like a lot of people on here I was first diagnosed with idiopathic neuropathy by a MD that did the Electromyography (EMG) test. I was later sent to a Neurologist at the nearby University that specializes in neuropathy. I was then told that I have neuropathy in both the large and small nerves.
I have tried a long list of supplements like those listed in the protocol 525. As well as the Neuro light that I had mentioned in my original comment. I have also used the tens machine and other vibration machines that claim to stimulate the nerves.
My apprehension with the protocol 525 is the price. When people come out the gate charging so much up front. To me that means that they know it won't work so, they try to get as much money up front as they can.
I went to a free consultation with a local chiropractor that claims a 90% success rate for neuropathy. The system included the neuro light purchase for home use and office visits for 2-3 months for tens and massage therapy. The total cost if I would have bought into the BS would have been $8000. They were even willing to fill out the paperwork to get me financing.
When I asked if I would be getting a new car at the end of the treatments? He wasn't amused.
So, if the protocol has worked for you. I am very happy to hear that and God Bless you with continued success. My radar goes up when they ask for a lot of money.

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@rorygirl

does amiodarone cause PN?

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Amiodarone does seem to have a connection with PN...

"Check with your doctor right away if you have burning, numbness, tingling, or painful sensations in the arms, hands, legs, or feet. These could be symptoms of a condition called peripheral neuropathy."
--- Amiodarone (Oral Route): https://www.mayoclinic.org/drugs-supplements/amiodarone-oral-route/description/drg-20061854

"The most common amiodarone-related neurotoxicities are tremor, ataxia, and peripheral neuropathy; more infrequent neurotoxicities include myopathy, optic neuropathy, basal ganglia dysfunction, encephalopathy, and pseudotumor cerebri."
--- Amiodarone Neuropathy: https://www.medlink.com/articles/amiodarone-neuropathy

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I have been on EB-6N for a year now and it has helped. It is a little pricey @159 for 90 days but continue. Foot pain and numbness has improved. I use EBM medical and no this not a paid influencer.

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Hello @susiesprue, A lot of us get discouraged when looking for answers and not finding much help for the neuropathy symptoms. I hope you don't mind but I thought I would respond to your private message in the discussion I started back in 2020 on the protocol of supplements I take for my neuropathy. You may want to click the link below which will take you to the top of the discussion so that you can read through what other members have shared.
--- Have you tried the new Protocol 525 product for neuropathy relief?: https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

You might also find this Why the Protocol document from the FAQs on the products website helpful as it provides research links for each of the supplements in the Protocol.

Shared files

WHY THE PROTOCOL (WHY-THE-PROTOCOL.pdf)

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@jaddaj441

That's a lot for 28 capsules a month. Not very affordable

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I have neuropathy with no pain but can barely feel the floor. My PN has never been diagnosed so I have no idea which kind it is. The neurologists I have contacted simply tell me there is nothing I can do about it .
I gave up driving years ago because of the numbness but am being driven crazy by the lack of feeling in my feet and fear of falling. In addition, my instability seems to affect by balance system and I am frequently dizzy. I have no idea what the Protocol is and would like to know so that I can inform my neurologist that something exists that might be useful.
gloria

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@glorialenora1

I have neuropathy with no pain but can barely feel the floor. My PN has never been diagnosed so I have no idea which kind it is. The neurologists I have contacted simply tell me there is nothing I can do about it .
I gave up driving years ago because of the numbness but am being driven crazy by the lack of feeling in my feet and fear of falling. In addition, my instability seems to affect by balance system and I am frequently dizzy. I have no idea what the Protocol is and would like to know so that I can inform my neurologist that something exists that might be useful.
gloria

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You can print out the "Why the Protocol" document in the post above (https://connect.mayoclinic.org/comment/1055091/) and it has a list of the protocol ingredients along with the research articles that tell you how each of the supplements helps with nerve health. I'm 81 now and have been taking it since 2016. I feel that it has kept my neuropathy from progressing and the numbness doesn't seem quite as bad as it was for me back in 2016. I think it has helped folks with neuropathy pain symptoms more than the numbness symptoms but it's not an overnight fix. I didn't notice any difference for a few months of taking it. It would be good to print out the document and discuss it with your neurologist.

You might also want to take a look at the list of complementary and alternative treatments listed on the Foundation for Peripheral Neuropathy here - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

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@ironmaiden

Like a lot of people on here I was first diagnosed with idiopathic neuropathy by a MD that did the Electromyography (EMG) test. I was later sent to a Neurologist at the nearby University that specializes in neuropathy. I was then told that I have neuropathy in both the large and small nerves.
I have tried a long list of supplements like those listed in the protocol 525. As well as the Neuro light that I had mentioned in my original comment. I have also used the tens machine and other vibration machines that claim to stimulate the nerves.
My apprehension with the protocol 525 is the price. When people come out the gate charging so much up front. To me that means that they know it won't work so, they try to get as much money up front as they can.
I went to a free consultation with a local chiropractor that claims a 90% success rate for neuropathy. The system included the neuro light purchase for home use and office visits for 2-3 months for tens and massage therapy. The total cost if I would have bought into the BS would have been $8000. They were even willing to fill out the paperwork to get me financing.
When I asked if I would be getting a new car at the end of the treatments? He wasn't amused.
So, if the protocol has worked for you. I am very happy to hear that and God Bless you with continued success. My radar goes up when they ask for a lot of money.

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You were smart to walk away from that scam. Was he going to refund your money if it didn't work? I think not! There are so many of these money-grabbing schemes out there. It's a shame that these charlatans prey on those of us stuggling with intense pain. Wouldn't it be great if we could transfer our pain to them and then say, "OK. you've got my pain. Now, let's see how well your product works for you". Of course, I would not really want anyone to have to go through what we all have to endure. I hope you are able to find something that helps you.

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@mike094522

I have been on EB-6N for a year now and it has helped. It is a little pricey @159 for 90 days but continue. Foot pain and numbness has improved. I use EBM medical and no this not a paid influencer.

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Mike, do you know the cause of your neuropathy? How long did you take it before you noticed improvement? Did you make any other changes such as diet etc?

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I have large fiber Idiopathic peripheral neuropathy in my feet. One thing I have learned I having this for the last three years is everybody is different and reacts differently to drugs and treatment. Glad you found something works for you. Like others. I’m extremely hesitant to sell out lots of money on something that is a gamble.

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