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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.

Mentor
John, Volunteer Mentor | @johnbishop | Mar 24, 2022
In reply to @bethwiseman "What is EB-N6?" + (show)
@bethwiseman

What is EB-N6?

Jump to this post

I have not heard of EB-N6 either. I found this info on it but not much reliable clinical testing or other information. Some of the ingredients are listed as helpful for neuropathy on the Foundation for Peripheral Neuropathy website here https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

"EB-N6DR INGREDIENTS -- L-methylfolate calcium - 6 mg, Methylcobalamin - 4 mg. Pyridoxal 5′-phosphate - 70 mg, Alpha-lipoic acid - 600 mg, Benfotiamine 300 mg" --- https://ebmmedical.com/medical-foods/

EB-N6 DR 35 Mg-3 Mg-2 Mg-300 Mg-150 Mg Capsule,Delayed Release - Uses, Side Effects, and More: https://www.webmd.com/drugs/2/drug-182140/eb-n6-dr-oral/details

REPLY
chermarie | @chermarie | Mar 25, 2022

Where can I find out about Protocol 525> I have Neuropathy in feet and going up legs. I've done many types of treatments and medications and nothing is working.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 25, 2022
In reply to @chermarie "Where can I find out about Protocol 525> I have Neuropathy in feet and going up..." + (show)
@chermarie

Where can I find out about Protocol 525> I have Neuropathy in feet and going up legs. I've done many types of treatments and medications and nothing is working.

Jump to this post

@chermarie - Here's the website for the product - https://theprotocol525.com/. They also have a Facebook group for support. The join link is on the website. I don't have pain with my neuropathy, just the numbness and some tingling but have found some relief and have been using the product since 2016. I posted my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.

REPLY
AEmedic | @aemedic | Mar 29, 2022

I thought I would share, progressively, how the Protocol is working for me.
I started ramping up on the R-ALA around the 16th of March and after a few days, I was and remain fully on the “all-capsule” version of the Protocol.
Other than the Ramp-Up R-ALA and the B vitamin complex, I am purchasing all my supplements via Subscribe and Save on Amazon.
My results are interesting but positive:
Day two - All symptoms flared equal to or worse they had ever been. In my case, that is electric shocks, burning, tingling and pain/numbness/tight feelings when trying to wear shoes. Of course, everything was worse at night...
Day three+ - After day/night two, symptoms feel "different", it's hard to describe some of the changes. One of the oddest changes is to my left leg below the knee. I have often felt that I had the sensation that my lower legs felt a "low blood sugar" weakness but weren’t really lacking strength, if that makes sense... After starting the Protocol, it is obvious that my legs have weakness, it isn't just a sensation. It isn't a physical limitation, but it is there. All of the increased symptom intensity has diminished to less than my average intensity, especially my ability to tolerate shoes! I have struggled to wear most shoes for the last couple of years with the last 6 months being particularly bad! I am able to tolerate the tight/numbness/pain feeling progressively better, every day. I still feel it, but it is much more tolerable. My feet have been roasting hot under my blankets at night for the last year, to the point that I have had to sleep with my feet out of the blankets, many times. For years, I used to always have an extra blanket folded at the foot of the bed for extra weight on my feet, that all changed with my PN. In the last few days, even though I still feel some heat in my feet, I have added the blanket over my feet! When I first lay down, I still get more tingling and discomfort, but it is more diffuse and less intense.
Overall – None of my symptoms are gone but everything feels different, and it is easier to live with my symptoms and this is only two weeks into the Protocol!
Something else I have learned, so many medications don't actually solve anything and have side effects that can impact PN.
Over the last year I have completely stopped:
Gabapentin
Cymbalta
Flexeril
Restoril
Celebrex
Benadryl

REPLY
2 replies
Carlos Sierra | @carlossierra1287 | Mar 29, 2022
In reply to @aemedic "I thought I would share, progressively, how the Protocol is working for me. I started ramping..." + (show)
@aemedic

I thought I would share, progressively, how the Protocol is working for me.
I started ramping up on the R-ALA around the 16th of March and after a few days, I was and remain fully on the “all-capsule” version of the Protocol.
Other than the Ramp-Up R-ALA and the B vitamin complex, I am purchasing all my supplements via Subscribe and Save on Amazon.
My results are interesting but positive:
Day two - All symptoms flared equal to or worse they had ever been. In my case, that is electric shocks, burning, tingling and pain/numbness/tight feelings when trying to wear shoes. Of course, everything was worse at night...
Day three+ - After day/night two, symptoms feel "different", it's hard to describe some of the changes. One of the oddest changes is to my left leg below the knee. I have often felt that I had the sensation that my lower legs felt a "low blood sugar" weakness but weren’t really lacking strength, if that makes sense... After starting the Protocol, it is obvious that my legs have weakness, it isn't just a sensation. It isn't a physical limitation, but it is there. All of the increased symptom intensity has diminished to less than my average intensity, especially my ability to tolerate shoes! I have struggled to wear most shoes for the last couple of years with the last 6 months being particularly bad! I am able to tolerate the tight/numbness/pain feeling progressively better, every day. I still feel it, but it is much more tolerable. My feet have been roasting hot under my blankets at night for the last year, to the point that I have had to sleep with my feet out of the blankets, many times. For years, I used to always have an extra blanket folded at the foot of the bed for extra weight on my feet, that all changed with my PN. In the last few days, even though I still feel some heat in my feet, I have added the blanket over my feet! When I first lay down, I still get more tingling and discomfort, but it is more diffuse and less intense.
Overall – None of my symptoms are gone but everything feels different, and it is easier to live with my symptoms and this is only two weeks into the Protocol!
Something else I have learned, so many medications don't actually solve anything and have side effects that can impact PN.
Over the last year I have completely stopped:
Gabapentin
Cymbalta
Flexeril
Restoril
Celebrex
Benadryl

Jump to this post

John. And all.

Completely in an array have been told not to take the PROTOCOL 525.
should I disregard the neurologist , pain Mng, Dr, and internal medicine MD?
are NOT confident to take The protocol 525. Took bottles are in front on me and set with each to consult with.
The first reaction concerns THE HIGH LEVELS ON BOTH MIN./ VIT.
Concerns of intoxication and or the body altogether not in need of.

Therefore, minerals and vitamins profile blood PANEL work testing Must be done. My insurance will not cover it. Cost very expensive.
Not sure it's $.

John,
I have not started the protocol.

Any suggestions?
Will add I am so D..........? Not sure what to call it.

Please reply soon.

Be safe ok
Carlos Sierra

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 29, 2022
In reply to @carlossierra1287 "John. And all. Completely in an array have been told not to take the PROTOCOL 525...." + (show)
@carlossierra1287

John. And all.

Completely in an array have been told not to take the PROTOCOL 525.
should I disregard the neurologist , pain Mng, Dr, and internal medicine MD?
are NOT confident to take The protocol 525. Took bottles are in front on me and set with each to consult with.
The first reaction concerns THE HIGH LEVELS ON BOTH MIN./ VIT.
Concerns of intoxication and or the body altogether not in need of.

Therefore, minerals and vitamins profile blood PANEL work testing Must be done. My insurance will not cover it. Cost very expensive.
Not sure it's $.

John,
I have not started the protocol.

Any suggestions?
Will add I am so D..........? Not sure what to call it.

Please reply soon.

Be safe ok
Carlos Sierra

Jump to this post

Hi Carlos, It is a big decision. The cost is around $7.40/per day and it's not covered by insurance but then no supplements are covered by insurance. I ran it by my Mayo Clinic primary care who sent the list to a Mayo pharmacist for comments. The only concern shared with me was he thought the Omega 3 amount was a little too much but probably wouldn't hurt me.

If it were me trying to make the decision and the doctor told me not to take it I would want to know why not and what science based evidence do you have to support why I shouldn't take it. Then I would compare with research studies that are currently available for each of the supplements they are worried about. My decision would be based on my own concerns of the side effects, cost to me and how well my current medications are working to relieve my symptoms.

Most of the supplements in the protocol are listed on the Foundation for Peripheral Neuropathy - Supplements for Neuropathy section and have been shown to help with neuropathy through clinical studies - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

REPLY
1 reply
Carlos Sierra | @carlossierra1287 | Mar 29, 2022
In reply to @aemedic "I thought I would share, progressively, how the Protocol is working for me. I started ramping..." + (show)
@aemedic

I thought I would share, progressively, how the Protocol is working for me.
I started ramping up on the R-ALA around the 16th of March and after a few days, I was and remain fully on the “all-capsule” version of the Protocol.
Other than the Ramp-Up R-ALA and the B vitamin complex, I am purchasing all my supplements via Subscribe and Save on Amazon.
My results are interesting but positive:
Day two - All symptoms flared equal to or worse they had ever been. In my case, that is electric shocks, burning, tingling and pain/numbness/tight feelings when trying to wear shoes. Of course, everything was worse at night...
Day three+ - After day/night two, symptoms feel "different", it's hard to describe some of the changes. One of the oddest changes is to my left leg below the knee. I have often felt that I had the sensation that my lower legs felt a "low blood sugar" weakness but weren’t really lacking strength, if that makes sense... After starting the Protocol, it is obvious that my legs have weakness, it isn't just a sensation. It isn't a physical limitation, but it is there. All of the increased symptom intensity has diminished to less than my average intensity, especially my ability to tolerate shoes! I have struggled to wear most shoes for the last couple of years with the last 6 months being particularly bad! I am able to tolerate the tight/numbness/pain feeling progressively better, every day. I still feel it, but it is much more tolerable. My feet have been roasting hot under my blankets at night for the last year, to the point that I have had to sleep with my feet out of the blankets, many times. For years, I used to always have an extra blanket folded at the foot of the bed for extra weight on my feet, that all changed with my PN. In the last few days, even though I still feel some heat in my feet, I have added the blanket over my feet! When I first lay down, I still get more tingling and discomfort, but it is more diffuse and less intense.
Overall – None of my symptoms are gone but everything feels different, and it is easier to live with my symptoms and this is only two weeks into the Protocol!
Something else I have learned, so many medications don't actually solve anything and have side effects that can impact PN.
Over the last year I have completely stopped:
Gabapentin
Cymbalta
Flexeril
Restoril
Celebrex
Benadryl

Jump to this post

Hi Friend in Pain...🙏

Thank you for talking to so so many of us.

Questions mostly?
Before taking the Protocol ,
Will assume?
No Dr. Advice?
No problems with another organ?
No intoxication?
How’s your day in day out eating
Affected?

Any sleeping ?
other issues??
Any cost above 299$

Looking for your comments ok

Be safe

REPLY
Carlos Sierra | @carlossierra1287 | Mar 29, 2022
In reply to @johnbishop "Hi Carlos, It is a big decision. The cost is around $7.40/per day and it's not..." + (show)
@johnbishop

Hi Carlos, It is a big decision. The cost is around $7.40/per day and it's not covered by insurance but then no supplements are covered by insurance. I ran it by my Mayo Clinic primary care who sent the list to a Mayo pharmacist for comments. The only concern shared with me was he thought the Omega 3 amount was a little too much but probably wouldn't hurt me.

If it were me trying to make the decision and the doctor told me not to take it I would want to know why not and what science based evidence do you have to support why I shouldn't take it. Then I would compare with research studies that are currently available for each of the supplements they are worried about. My decision would be based on my own concerns of the side effects, cost to me and how well my current medications are working to relieve my symptoms.

Most of the supplements in the protocol are listed on the Foundation for Peripheral Neuropathy - Supplements for Neuropathy section and have been shown to help with neuropathy through clinical studies - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

Jump to this post

Thank you Sir.

Will try it and keep posted.

If all the MEDS currently and previously tried have not yet killed this
older man, 😂, see no reason why not.

Blessings.

Ps
The big decision is in making it.

Good night

Blessings and again thank goodness
To have located you and the many others I have yet to be in contact with.

REPLY
kmst1994 | @kmst1994 | Apr 29, 2022

I have read through this entire thread with great interest. In my reading I have come across two stories of success @johnbishop and @aemedic. I am so glad to hear this 525 protocol has provided improvements for you both. I would be interested to hear if others have also experienced improvements while taking this protocol. Thanks!

REPLY
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