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Have you tried the new Protocol 525 product for neuropathy relief?
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/.
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@pua0609 the protocol is just vitamins and they could be purchased separately at less cost but would not be as convenient. However, my concern is this. I took the protocol for 4 months and saw no improvement but planned to continue to try it but after I posted about a new treatment being studied by Winsantor that has shown great promise including regeneration of nerves as evidenced in EMG and nerve biopsy in stage 1 and 2 clinical trial I was removed from the Facebook group and blocked from even seeing the group. I said nothing negative about the protocol and the drug is still in testing phase. Any group that is that controlling and not at all interested in other possible new treatments cant legitimately be trying to help people. They are just selling expensive vitamins.
the protocol is just vitamins and they could be purchased separately at less cost but would not be as convenient. However, my concern is this. I took the protocol for 4 months and saw no improvement but planned to continue to try it but after I posted about a new treatment being studied by Winsantor that has shown great promise including regeneration of nerves as evidenced in EMG and nerve biopsy in was removed from the group and blocked so I can not even see the group. Any group that is this controlling can't be trying to help people they are just selling more expensive vitamins. I know of others who are removed from the group if they even hint that the protocol is not helping.
@bb0753 Thanks for sharing. So many crackpot scammers out there trying to take our hard earned money. Not sure how they can sleep at night.
Hope you can find something that helps you.
I've been a member of the Facebook group since early 2016 and I'm still taking the protocol. I can say that it has helped me at least slow the progression of my idiopathic small fiber PN but I only have numbness and some tingling with no pain. My symptoms have actually improved since and the ever looming progression seems to have been stopped for me.
To someone who has been with the group since we used to have a document with links for ordering the individual supplements from the manufacturer or Amazon for the free shipping (B1, B2, B3, B7, Flaxseed Oil, Na R ALA, D3, Chelated Magnesium, Folate, Methylcobalamin B12, K2, and Acetal L Carnitine), $6/day doesn't seem too expensive although that's just my opinion. A side benefit for me has been dealing with fewer capsules to swallow along with not having to constantly be ordering supplements because some were shipped with different quantities.
To be honest, the Facebook group is comprised of active members who have found real relief for their condition and get frustrated when members keep asking questions about new treatments. I don't really like that aspect of the Facebook group but at least they are up front and will tell you they are not looking for other treatments when it works for them. I can also tell you that the FB group including myself have helped other group members who couldn't afford the protocol in the beginning. The group has been hacked by outsiders several times and that really is the reason they might seem a little controlling. Here on Connect, we have a great set of moderators along with a director who keep our community safe and open to all.
I've shared the research behind the different supplements in the protocol before but thought I would share them again. You can buy them each separately but I really doubt that it would be cheaper but it would also mean taking more capsules daily.
Why the Protocol (Why-the-Protocol.pdf)
Yes John i do believe these vitamins are research based. Although I saw no improvement during the 4 months I took them I do believe they are beneficial if the cause of neuropathy is some type of vitamin deficiency. So far mine still remains idiopathic. I hope everyone finds what helps them.
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1 ReactionI didn’t see much improvement the first four months either and like a lot of treatments it may or may not help everyone. My diagnosis is also idiopathic but I do think it may be caused by my being in the metabolic syndrome category most of my adult life. I just wished my PCPs along the way would have told me about the metabolic syndrome instead of just saying I was pre-diabetic.