Have you tried the new Protocol 525 product for neuropathy relief?

I have idiopathic neuropathy for 3 years I looked into the protocol but I am taking most of the supplements anyway. Has anyone taking the protocol?

Hello. I don’t know what the protocol is or means? I just tried to google it and saw the Cleveland clinic site explaining sfn. It actually says “it’s not a serious medical condition “. That makes me want to just cry. Any hoo can someone explain the protocol? Thank you.

Hello @rorygirl and @dinawashere, There is another discussion on the same topic that you might want to read where I've shared my experience and was asking others who may have tried the protocol to share their experience too. I only have numbness and a little tingling but no pain with my neuropathy. I can understand your feelings when you read the article that said small fiber neuropathy is not a serious medical condition. The people that wrote it obviously have never felt the numbness, pain and other symptoms that come with neuropathy of any kind.

--- 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/

I am taking Protocol for SFN and I do believe it has helped. I suffer from numbness and tingling. I have been taking for approximately 4 months and have been experiencing itching especially on the heels of my feet. Anyone else?

@rvan8890 I haven't experienced the itching on the back of my heels but have had some in other locations. You might check out this discussion started by Chris @artscaping to learn what others have shared.
--- What do you do for Neuropathy itch?: https://connect.mayoclinic.org/discussion/what-do-you-do-for-neuropathy-itch/

Good evening @rvan8890 and thank you @johnbishop for the introduction. Yes, I am the one who has SFN and developed the neuropathic itch. If my memory is correct the itch began about 8 years after my diagnosis. My dermatologist and I spent a couple of years trying more than 3 different products hoping to be able to stop the itch. The difference is that the neuropathic itch originates inside the body......not on the exterior skin. What happens is that by scratching the itch......the skin becomes inflamed and pretty darn messy.

Finally, we found what I can call a total solution and that is Dupixent. On August 13, 2022, I gave myself the first injection. I have never had even a hint of itching since that injection, My dosage right now is 2 pens a month on alternating Sundays. If you would like to learn more about Dupixent, you can find it at http://www.dupixent.com. They also have an annual Co-Pay program up to a maximum of $13,000 per year that is called "Dupixent my way".

You mentioned your heels and I assume that both heels are involved.

If you would prefer to try getting some help from a topical, there is a rather new OTC option available online and it is called Dermeleve at http://www.dermeleve .com. It is a balm that works within 15 minutes and lasts for 6-8 hours. I keep one tube of Dermeleve with me wherever I go......just in case.

Please let me know if you are beginning to have neuropathic itch in other areas. I am here to help you as much as I can.

May you be safe, protected, and free of inner and outer harm.
Chris

The Protocol works for me. It may not work for everyone. I was willing to cut out sugar, carbs, caffeine, and occasional glass of wine; never smoked. I eat clean unprocessed food, lots of soups and salads, chicken, turkey, fish and once in a while steak. Raw veggies and fruits with cheese for snacks. Made a cheesecake with crushed nuts for the crust (instead of graham cracker crust) add berries for topping. I grasp not everyone can go this way. Just sharing my experience. I still use walking stick or cane for outdoor walking stability.

Thank you so much for these tips!! I will look into these!

Protocol 525 product looks like more snake oil to me. Anyone that charges $2100 a year for vitamins that can be bought much cheaper elsewhere is looking to take advantage of people who are in pain. Just like the company Neuro light. It costs thousands of dollars and claims to help the nerves regenerate.
Everyone be careful out there because unfortunately there are too many dishonest people around.
Good Luck to us all.

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?