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DiscussionSmall Fiber Neuropathy: Book Recommendation
Neuropathy | Last Active: Nov 25 6:00pm | Replies (67)Comment receiving replies
Replies to "Ok. I'll give it some thought. Thanks a bunch! Last question regarding the protocol...is it basically..."
Hi Rachel, The protocol is a criteria of specific supplements of the highest available quality. The protocol was put together by trial and error by the groups leader who then started the closed Facebook group with the desire to help others in the same situation. The group is not a business but they are a 501c3 non profit organization and they do help some less fortunate members with a kick start supply of the supplements through the donations of other members. The website - http://solutions2pnpd.com/ has the links to purchase each of the supplements through Amazon and their are links for the US, Canada, and the UK. There are also members in other parts of the world that have found where they can buy equivalent supplements of the same strength or better and they maintain a list of where to buy in their Files secton of the Facebook group. For the US, the only supplement the group sells is the Hemp oil and that's because early on a lot of us got expired/spoiled hemp oil ordering from Amazon and their different distributors. So the Facebook groups leader became the middle man with the manufacturer of the hemp oil in Canada and gets drop shipments to his house in Florida where he has a commerical refrigerator and can store a small supply to ship directly to members. I think a small charge is added above the actual cost of the hemp oil and this money is put into the Help Another Member (HAM) fund.
I can understand folks who are skeptical as I am always skeptical until I figure it out for myself. I was looking for an alternative treatment and something more natural since I already knew there weren't any drugs that address numbness for neuropathy. I joined the group when it was less than 500 members and it's now close to 9K members. It doesn't cost anything to join, read the new member welcome which explains what the group is about and how to start. Then you have access to all their research by using the Files section of their Facebook group and you can read and determine if you think it will help or not. I don't have the pain and only suffer the numbness but I still worry about the progression of my small fiber PN. I'm 3 years taking the protocol and I feel that my PN has not gotten worse. Granted after the initial 2 months when it seemed to receed a little I haven't made any further progress as far as getting rid of the PN. I was hopeful but it only reinforced to me that there is no cure for PN. The best I can hope for is to slow or stop the progression. I think each member has to make the decision for themselves by learning as much as they can about the disease/condition and doing what they can to make it better.
Good luck whatever you decide. I know this is a awful and painful condition for a lot of members and their are a lot of scams out there taking advantage of us so it does pay to be careful and check things out first.