1. < Neuropathy
Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
Rachel, Volunteer Mentor | @rwinney | Apr 21, 2020
In reply to @jeffrapp "Thanks for the info, John. I'm interested in the Protocol. In his flyer, he states that..." + (show)
@jeffrapp

Thanks for the info, John.
I'm interested in the Protocol. In his flyer, he states that "the Protocol has brought relief to hundreds of people".
I imagine that some of the participants in this forum are also among the hundreds of people who have tried the Protocol.
However, I don't recall many people commenting on their use of the protocol here (I don't participate in FaceBook). This seems odd, especially if, in fact, the Protocol is so successful.
I'd like to hear comments from people who have tried it, successfully or not.
Perhaps that should be a new, separate topic.
Jeff

Jump to this post

@jeffrapp I've used this Protocol since last September and understand your concern. I felt the same way about it and am not completely sold on it taking all my troubles away. It has not yet done so yet, I also have not followed it to the tee which will always leave me wondering. I can attest to there being benefits from many of the supplements. I researched each one to understand their potential benefit. Nothing would be harmful to me. My Neurologist recommended about 4 of the items for neuropathy. I'm on the fence as I believe its contributioning in a positive way to my neuropathy and overall well being but, the jury is out on whether it will resolve all my issues like some testimonials declare. Either way, I will continue to use it as a blue print.
Rachel

REPLY
2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Apr 21, 2020
In reply to @rwinney "@jeffrapp I've used this Protocol since last September and understand your concern. I felt the same..." + (show)
@rwinney

@jeffrapp I've used this Protocol since last September and understand your concern. I felt the same way about it and am not completely sold on it taking all my troubles away. It has not yet done so yet, I also have not followed it to the tee which will always leave me wondering. I can attest to there being benefits from many of the supplements. I researched each one to understand their potential benefit. Nothing would be harmful to me. My Neurologist recommended about 4 of the items for neuropathy. I'm on the fence as I believe its contributioning in a positive way to my neuropathy and overall well being but, the jury is out on whether it will resolve all my issues like some testimonials declare. Either way, I will continue to use it as a blue print.
Rachel

Jump to this post

PS: I dont participate in fb either (to read all testimonials) but, was able to navigate use through some links.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Apr 21, 2020
In reply to @jeffrapp "Thanks for the info, John. I'm interested in the Protocol. In his flyer, he states that..." + (show)
@jeffrapp

Thanks for the info, John.
I'm interested in the Protocol. In his flyer, he states that "the Protocol has brought relief to hundreds of people".
I imagine that some of the participants in this forum are also among the hundreds of people who have tried the Protocol.
However, I don't recall many people commenting on their use of the protocol here (I don't participate in FaceBook). This seems odd, especially if, in fact, the Protocol is so successful.
I'd like to hear comments from people who have tried it, successfully or not.
Perhaps that should be a new, separate topic.
Jeff

Jump to this post

Hi Jeff @jeffrapp, I'm pretty sure there are 10+ members on Connect that have sent me private messages asking about the protocol in the past several years but not many posted followup information. Quick update on my story -- I have idiopathic small fiber PN diagnosed in mid 2016 but numbness symptoms have been around for 20+ years. I just didn't start searching until 2016 when I found Connect and shortly afterwards found the closed Facebook group. The reason being I only have the numbness and the doctor told me before I was diagnosed that if I do have nerve damage there was nothing that could be done anyway. It started getting worse around 2016 which is why I had my primary care setup a neurology appointment at Mayo. They confirmed that I had nerve damage and gave me the idiopathic small fiber PN diagnosis but told me there was no treatment for the numbness.

I started taking the protocol in Sept 2016 and after 2 months noticed that the numbness which was just below the knees was now just above the ankles so I continued to take the protocol because it seemed to have slowed and possible stopped the progression. This is subjective on my part because I've had no additional testing but figured it's not worth the time and money to be retested. Still taking the protocol and fast forward to this year and a few months ago I noticed a slight tingling and feeling coming back to the bottom of my feet. So I'm feeling better about it myself. I know the group is also planning to see if they can get a liquid version of the protocol produced since some members have issues taking pills...which led to the new 525 protocol.

Hopefully other members here who have tried the original protocol can share there experience. I will check on creating a new discussion.
John

REPLY
1 reply
jeffrapp | @jeffrapp | Apr 21, 2020
In reply to @rwinney "@jeffrapp I've used this Protocol since last September and understand your concern. I felt the same..." + (show)
@rwinney

@jeffrapp I've used this Protocol since last September and understand your concern. I felt the same way about it and am not completely sold on it taking all my troubles away. It has not yet done so yet, I also have not followed it to the tee which will always leave me wondering. I can attest to there being benefits from many of the supplements. I researched each one to understand their potential benefit. Nothing would be harmful to me. My Neurologist recommended about 4 of the items for neuropathy. I'm on the fence as I believe its contributioning in a positive way to my neuropathy and overall well being but, the jury is out on whether it will resolve all my issues like some testimonials declare. Either way, I will continue to use it as a blue print.
Rachel

Jump to this post

Thanks, Rachel. Yours was exactly the kind of comment I was interested in.
As with so many other treatments (medical or not), your assessment of the Protocol was a big, resounding "maybe". In so many ways, this disease is maddening.
I hope others will chime in.
Jeff

REPLY
1 reply
jeffrapp | @jeffrapp | Apr 21, 2020
In reply to @johnbishop "Hi Jeff @jeffrapp, I'm pretty sure there are 10+ members on Connect that have sent me..." + (show)
@johnbishop

Hi Jeff @jeffrapp, I'm pretty sure there are 10+ members on Connect that have sent me private messages asking about the protocol in the past several years but not many posted followup information. Quick update on my story -- I have idiopathic small fiber PN diagnosed in mid 2016 but numbness symptoms have been around for 20+ years. I just didn't start searching until 2016 when I found Connect and shortly afterwards found the closed Facebook group. The reason being I only have the numbness and the doctor told me before I was diagnosed that if I do have nerve damage there was nothing that could be done anyway. It started getting worse around 2016 which is why I had my primary care setup a neurology appointment at Mayo. They confirmed that I had nerve damage and gave me the idiopathic small fiber PN diagnosis but told me there was no treatment for the numbness.

I started taking the protocol in Sept 2016 and after 2 months noticed that the numbness which was just below the knees was now just above the ankles so I continued to take the protocol because it seemed to have slowed and possible stopped the progression. This is subjective on my part because I've had no additional testing but figured it's not worth the time and money to be retested. Still taking the protocol and fast forward to this year and a few months ago I noticed a slight tingling and feeling coming back to the bottom of my feet. So I'm feeling better about it myself. I know the group is also planning to see if they can get a liquid version of the protocol produced since some members have issues taking pills...which led to the new 525 protocol.

Hopefully other members here who have tried the original protocol can share there experience. I will check on creating a new discussion.
John

Jump to this post

Thanks, John! @johnbishop.
I'd classify your response as an enthusiastic "perhaps".
I also have small fiber PN like you do, but mine is quite painful. Mine was diagnosed with a skin biopsy, so there is anatomic evidence of nerve damage. This leads me to question any treatment which purports to "cure" the disease, which would require evidence of the nerves growing back, or at least a halt in progression. Treatments like Lyrica are not supposed to be curative, so they don't count in this discussion.
I suppose the only way to prove something works is to take a treatment for x months (3, 6, 12? Again, nobody knows), then repeat the nerve biopsy. I don't have any indication that this approach has or is being tried. It would be an expensive, time consuming and somewhat painful experiment.
Thanks again John for your hard and useful work on this and other topics.
Jeff

REPLY
2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Apr 21, 2020
In reply to @jeffrapp "Thanks, Rachel. Yours was exactly the kind of comment I was interested in. As with so..." + (show)
@jeffrapp

Thanks, Rachel. Yours was exactly the kind of comment I was interested in.
As with so many other treatments (medical or not), your assessment of the Protocol was a big, resounding "maybe". In so many ways, this disease is maddening.
I hope others will chime in.
Jeff

Jump to this post

@jeffrapp Correct.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Apr 21, 2020
In reply to @jeffrapp "Thanks, John! @johnbishop. I'd classify your response as an enthusiastic "perhaps". I also have small fiber..." + (show)
@jeffrapp

Thanks, John! @johnbishop.
I'd classify your response as an enthusiastic "perhaps".
I also have small fiber PN like you do, but mine is quite painful. Mine was diagnosed with a skin biopsy, so there is anatomic evidence of nerve damage. This leads me to question any treatment which purports to "cure" the disease, which would require evidence of the nerves growing back, or at least a halt in progression. Treatments like Lyrica are not supposed to be curative, so they don't count in this discussion.
I suppose the only way to prove something works is to take a treatment for x months (3, 6, 12? Again, nobody knows), then repeat the nerve biopsy. I don't have any indication that this approach has or is being tried. It would be an expensive, time consuming and somewhat painful experiment.
Thanks again John for your hard and useful work on this and other topics.
Jeff

Jump to this post

Hi Jeff @jeffrapp - I should add that even the members of the protocol group don't call it a cure but say it's a drug free treatment for rolling back the symptoms of PN. When the new 525 was being developed they asked members who have shared their success story in the group to send in a 1 to 2 minute video of their success with the protocol. I was hoping they would add these to the website so that non Facebook folks could relate to the different diagnosis of each the members sharing and how it has helped them. They are having a live Facebook discussion tomorrow evening at 6pm so I will try to see where that is at and if there is a possibility they can store the videos where a link could be shared to view them.
John

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Apr 21, 2020
In reply to @jeffrapp "Thanks, John! @johnbishop. I'd classify your response as an enthusiastic "perhaps". I also have small fiber..." + (show)
@jeffrapp

Thanks, John! @johnbishop.
I'd classify your response as an enthusiastic "perhaps".
I also have small fiber PN like you do, but mine is quite painful. Mine was diagnosed with a skin biopsy, so there is anatomic evidence of nerve damage. This leads me to question any treatment which purports to "cure" the disease, which would require evidence of the nerves growing back, or at least a halt in progression. Treatments like Lyrica are not supposed to be curative, so they don't count in this discussion.
I suppose the only way to prove something works is to take a treatment for x months (3, 6, 12? Again, nobody knows), then repeat the nerve biopsy. I don't have any indication that this approach has or is being tried. It would be an expensive, time consuming and somewhat painful experiment.
Thanks again John for your hard and useful work on this and other topics.
Jeff

Jump to this post

Jeff - I was diagnosed with Small Fiber Polyneuropathy via skin punch biopsy as well. Mine was from a B12 deficiency to which my Dr said its possible, maybe, that my nerves could regenerate in over a 2-3 year span. Symptoms for 3 1/2 years, diagnosis a year, no improvement just decline. I mean I guess I will still keep hope alive. Every once in a while I may have a few hour stretch where all is calm in my body and I think...THIS IS IT! But, not.

REPLY
Mentor
Rachel, Volunteer Mentor | @rwinney | Apr 21, 2020
In reply to @johnbishop "Hi Jeff @jeffrapp - I should add that even the members of the protocol group don't..." + (show)
@johnbishop

Hi Jeff @jeffrapp - I should add that even the members of the protocol group don't call it a cure but say it's a drug free treatment for rolling back the symptoms of PN. When the new 525 was being developed they asked members who have shared their success story in the group to send in a 1 to 2 minute video of their success with the protocol. I was hoping they would add these to the website so that non Facebook folks could relate to the different diagnosis of each the members sharing and how it has helped them. They are having a live Facebook discussion tomorrow evening at 6pm so I will try to see where that is at and if there is a possibility they can store the videos where a link could be shared to view them.
John

Jump to this post

And you said you were retired John! 😊

REPLY
summertime4 | @summertime4 | Apr 21, 2020

@johnbishop Hi everyone. I see the subject is the Protocol. I had seen your post several months ago about the Protocol. At first I thought it was exercises or other therapy or vitamins. Yes, I found it is actually vitamins of sort and as reading more found it was also a "Product" and had it's own website and all. I was taken back by the price of these products and how long you would have to use them before you saw some relief or what. I cannot afford their product even for short time. I cannot spend much money for over the counter products either. I do take vitamins and am prescribed Vitamin B12 shots. Even with this I am told my neuropathy has progressed and this is the reason for constant, awful numbness of legs and feet. I used to have the tingling and feelings of little bugs crawling on my legs. I was told I have progressed past that the numbness and will stay with me. I go off the chart with anxiety. I constantly feel like my legs and feet are encased in cement or I have to take heavy socks off that I do not have on. I am frightened as I was just told that information yesterday by my physical therapist. I will say that the water therapy feels good and I am fortunate that I can have this even with the shut downs. Can I get more information from the group in regards to progression and where I might be going from here. Thank you. If I were able to I would certainly look into trying the "Protocol" I also get desperate for relief.

REPLY
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