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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@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

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Replies to "Hi Jeff @jeffrapp, I'm pretty sure there are 10+ members on Connect that have sent me..."

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