1. < Neuropathy
Mentor

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.

fields123 | @fields123 | Jan 19, 2022
In reply to @fields123 "Can I try the new version of 525? I am 92 years old and have been..." + (show)
@fields123

Can I try the new version of 525? I am 92 years old and have been on Gacapentin for several years with side effects and would love to not take them any more. slowly I am reducing the dosage from 1600 and now take 1200 a day and CBD at bedtime .My problem is mainly pain in my feet at night time which keeps me awake.Rachel Fields

Jump to this post

yes I take the CBD at bed time in liquid form. I have neuropathy at least 10 years.Was told to be the result of my back surgery. Since then recent surgery for a large bulg removal on my back a year ago.Have a brittle back bones .Had some cyatic pain after surgery and the dr increased the dose for the gabapentin. He suggested 1600 but now I reduced it taking 1200 but have side effects such as poor balance , personality changes ,need of sleep during the day.Was not told best way to take the Gabapentin .I take 300mg 2 times a day dinner time 400 and 2oo at bed time.Now with reducing the dosage more pain at night and poor sleep

REPLY
skeleton | @skeleton | Jan 20, 2022
In reply to @johnbishop "Hello @fields123, I would like to add my welcome along with Chris @artscaping and others. I'm..." + (show)
@johnbishop

Hello @fields123, I would like to add my welcome along with Chris @artscaping and others. I'm 78 and have been taking 525 and it's predecessor since 2016. I don't have the pain with my neuropathy but others members of the Facebook group have been able to taper off of the gabapentin and other neuropathy medications after being on the protocol for a short period of time - but each person is different and the amount of time is not the same. If you want to try it, I would recommend taking the list of ingredients and discuss them with your doctor before starting.

You can find the list of ingredients on the website under the Frequently Asked Questions (FAQs) - https://theprotocol525.com/faq/ --- "Active Ingredients: Protocol formula daily: B1 50mg, B2 50mg, B3 20mg, B7 20,000mcg, Flaxseed Oil 2000mg, na R ALA 1200mg, D3 4000 IU, Chelated Magnesium 200 mg, B12 lozenge 3000mcg, Folate 1200mcg, K2 200mcg, Acetal L Carnitine 1000mg, 3Tbs Organic Hemp Seed Oil".

They also have Hemp Seed Oil (HSO) Skin Therapy which I use nightly on my feet as a moisturizer. It seems a little pricey at $23 for a small 2 oz bottle but I only need a few drops at a time and I'm able to rub my feet for a few minutes with it until it is absorbed. I also wear loose crew socks when sleeping after putting the HSO oil on my feet which seems to help me. I have been getting a month or so out of each bottle.

Have you tried any kind of skin moisturizer on your feet at night or massaging them?

Jump to this post

Thanks for sharing this. Skeleton

REPLY
total99 | @total99 | Jan 21, 2022

I take lower dose of gabapentin at night to reduce neuropathy, which really accelerates when I lie down to go to sleep at night.
Is this common for others - this increase in symptoms at bedtime?

REPLY
1 reply
fields123 | @fields123 | Jan 21, 2022
In reply to @artscaping "Greetings @fields123, Congratulations on being 92 years old. How long have you had neuropathy? You indicate..." + (show)
@artscaping

Greetings @fields123, Congratulations on being 92 years old. How long have you had neuropathy? You indicate your are reducing the dosage of Gabapentin and replacing it with CBD at bedtime. Is that a CBD tincture you are using? That's what I do now also.....600 mg of Gabapentin and one dropper of a CBD/THC 2:1 dosage. I am so happy to introduce you to @johnbishop. He is the most knowledgeable person for the 525 protocol. You will be in good hands.

May you be free of suffering and the causes of suffering.
Chris

Jump to this post

not sure you received my email.Not the best at the computer.I had back surgery almost 20 years ago my neuropathy stared ten years later but put on Gapapentin low dose of 300 about 1o years ago by my arthritis dr.A year ago I had a large bulgi removed from my back.I had severe pain before surgery and bad cystic pain after the surgery .The doseof gapapebtin was increased to 1600mg .Lots of site effects from the drug .Iam now down to 1200 and starting to get more pains but even so lots of site effects of the drug.Using liquid form of CBD at bed time.And rubbing my feet at bed time with Kind Hand cream which helps me quite well.Thanks for suggesting the rubbing of the feet.I like to try The Protocol but worry I do nt drink enough water.

REPLY
fields123 | @fields123 | Jan 21, 2022
In reply to @total99 "I take lower dose of gabapentin at night to reduce neuropathy, which really accelerates when I..." + (show)
@total99

I take lower dose of gabapentin at night to reduce neuropathy, which really accelerates when I lie down to go to sleep at night.
Is this common for others - this increase in symptoms at bedtime?

Jump to this post

I have the same problem

REPLY
marymaurer | @marymaurer | Jan 24, 2022

Thanks for the explanation of the new 525 packaging! I wondered about it.
Have been taking the protocol for about three months. Like John, I have no pain.. just feel as if I am wearing long socks.
My goal is to maintain and not to have this progress. Will update!

REPLY
1 reply
sam31 | @sam31 | Jan 25, 2022
In reply to @marymaurer "Thanks for the explanation of the new 525 packaging! I wondered about it. Have been taking..." + (show)
@marymaurer

Thanks for the explanation of the new 525 packaging! I wondered about it.
Have been taking the protocol for about three months. Like John, I have no pain.. just feel as if I am wearing long socks.
My goal is to maintain and not to have this progress. Will update!

Jump to this post

Hi Mary,

I too have the same symptoms as you and John. Have you been diagnosed with a specific type of PN? While my symptoms are the same, I do not have small fiber PN. My PN is in the larger fibers. This disease is very confusing. It would be helpful if we could relate the symptoms with the diagnosis. Could you share your PN diagnosis with the group? Thanks for sharing your story.

Rick

REPLY
1 reply
marymaurer | @marymaurer | Jan 25, 2022
In reply to @sam31 "Hi Mary, I too have the same symptoms as you and John. Have you been diagnosed..." + (show)
@sam31

Hi Mary,

I too have the same symptoms as you and John. Have you been diagnosed with a specific type of PN? While my symptoms are the same, I do not have small fiber PN. My PN is in the larger fibers. This disease is very confusing. It would be helpful if we could relate the symptoms with the diagnosis. Could you share your PN diagnosis with the group? Thanks for sharing your story.

Rick

Jump to this post

Hi Rick. I have been diagnosed with small fibre neuropathy. Muscles and reflexes not affected.
Developed over years starting with “sock under the toes” feeling.
Area affected lower legs up to knees. Have suspected that being on cholesterol lowering meds for years.. large dose. Am now taking
Red yeast rice just in case it matters. No pain but numbness which feels as if I am wearing long socks. Weird!

REPLY
1 reply
sam31 | @sam31 | Jan 25, 2022
In reply to @marymaurer "Hi Rick. I have been diagnosed with small fibre neuropathy. Muscles and reflexes not affected. Developed..." + (show)
@marymaurer

Hi Rick. I have been diagnosed with small fibre neuropathy. Muscles and reflexes not affected.
Developed over years starting with “sock under the toes” feeling.
Area affected lower legs up to knees. Have suspected that being on cholesterol lowering meds for years.. large dose. Am now taking
Red yeast rice just in case it matters. No pain but numbness which feels as if I am wearing long socks. Weird!

Jump to this post

Mary,

You mentioned this disease is weird - so true. My neurologist did the EMG tests and stated I do not have SFPN, yet my symptoms mimic SFPN? After 6 years of this disease, not sure where to go from here? The lack of pain is encouraging as so many of our members suffer from this disabling disease. God bless them all.

Rick

REPLY
1 reply
marymaurer | @marymaurer | Jan 25, 2022
In reply to @sam31 "Mary, You mentioned this disease is weird - so true. My neurologist did the EMG tests..." + (show)
@sam31

Mary,

You mentioned this disease is weird - so true. My neurologist did the EMG tests and stated I do not have SFPN, yet my symptoms mimic SFPN? After 6 years of this disease, not sure where to go from here? The lack of pain is encouraging as so many of our members suffer from this disabling disease. God bless them all.

Rick

Jump to this post

Agree! After hearing other members’ stories, I realize how much worse it could be. God bless us all!

REPLY
View MoreView Less
Please sign in or register to post a reply.