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Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: Oct 28 4:54pm | Replies (3050)

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@johnbishop

Hi Rosy,
I certainly can understand how you feel and what you have been through. I also have idiopathic small fiber PN and have had it for over 20+ years only bothering to get it diagnosed in 2016 because of the numbness seemed to be spreading faster. I don't have pain so have not needed medications but have spent a lot of money on many things that have not helped. What got me started looking at nutrition as the answer to at least slow or stop the progression of the numbness was a book by Dr. Terry Wahls - The Wahls Protocol. She has an amazing story that you can read here: https://terrywahls.com/about/about-terry-wahls/.

Full disclosure ☺ -- The group is working on their own product to be available sometime in 2020. This came about because many of us really have a problem taking so many pills - 22/daily. The new product will combine some of the supplements into about half of the number of pills which hopefully will make it better and the cost should be about the same - around $6/day.

I honestly don't know if the protocol will work for you even though it has helped myself and many members of the group. It is definitely worth a try if nothing has helped you in the past. I don't believe it's an overnight thing where you start taking the supplements and the next day your symptoms are gone. I think it does take awhile and you have to stick with it. I didn't see any difference until after 2 months on the protocol when my numbness seemed to decrease. I haven't had any progress since then but it also hasn't gotten any worse for me which is what the neurologist told me would continue to happen.

Hoping you have a great weekend also. ☺

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Replies to "Hi Rosy, I certainly can understand how you feel and what you have been through. I..."

My 2 cents on the protocol...I feel that unless you have adverse health reactions to any of the protocol supplements, it cant hurt. Alpha Lipoic Acid and Acetyl L Carnitine (also B12 and CoQ10 for headaches) were all referred by my neurologist. He wont/cant speak on the other products due to lack.of medical evidence but I've done my own research. Brewers yeast so far is my only long term concern so I take half the dose for now. Truth is...
when there is no medically proven evidence, we have no choice but to live on hope and a prayer. 😇

I haven’t posted in awhile deciding to wait until I’d progressed further with my visits at Mayo which started two weeks ago. For those of you who knew I was going, just know I’ll post more when I know more.

But I wanted to weigh in briefly on some of the recent posts about scams and the Protocol group.

It seems that John and other MayoConnect mentors wouldn’t be recommending treatments such as The Protocol or Myofacial etc if there wasn't evidence behind the treatments, albeit somewhat anecdotal.
After all their names are associated with Mayo Clinic, which has its ethical and medical reputation behind this blog site.

We all have to make our own choices about what to try and not, and yes it’s exhausting and can be very disappointing. But the value of a blog like this is to share information and learn options (conventional and unconventional) that our “regular” docs might not know or support yet.

Let’s keep trying and sharing and give our docs the good feedback so they can get on board. Maybe eventually they’ll be able to push the insurance companies in the right direction too. 😉

Thank you John for all your info about The Protocol. I placed my order today and I'm all excited to begin a new transition into a happier and healthier lifestyle. I'm looking forward to 525 with less pills to take but I need to start now. 🙂