Small Fiber Neuropathy: Book Recommendation

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.

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When I clicked the Amazon link several other books on neuropathy came up. It's interesting that I never explored this possibility before as I've become used to assuming everything is on the Internet. Some of these books have promising tittles suggesting neuropathy can be cured and/or the symptoms ameliorated. So the reason for this post is to ask if anyone has read any of these books.

So rwinney, the book you mentioned sounds like it confirms the 'big problems' so many of us are having but does it offer any hope?
Thanks for posting.

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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.

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My internist, and maybe even my neurologist, told me that nerve growth is so slow it will not happen in one's lifetime. However, I read on the Internet, that there are 100 causes of neuropathy and that if the underlying cause is remedied, then in 50% of cases the neuropathy goes away. So who knows. I do know that the intensity of my pain varies with it having reached a 10 on a few occasions while on some days/nights it's below 3. My neurologist said this is 'normal' for neuropathies. I say BS. It just means that they do not have an understanding of the mediating variables.

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Hello John
Don't mean to be a pest but, if it's not too bold of a question, what is the monthly cost of maintaining this protocol? I did go thru the link and obtained good information. I plan to share it with my Neurologist and seek his input. Should be interesting as it is an opposite approach. Thanks again and have a nice day!

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Hi Rachel @rwinney -- that's not being a pest. ☺ I think the number is around 5 to 6 dollars a day when you average the cost of a 30 day supply but some of the items last more than 30 days. It's a great idea to run them by your neurologist. I ran them by my Mayo primary care doc who ran them by a Mayo pharmacist and the only comment I got back was the omega 3 and omega 6 were a little high. I kind of blew that away because I found a link on the Mayo site which I can't find again that showed higher values for therapeutic dosages for dealing with different health conditions.

Hope this helps! It is a gorgeous day outside - 71 degrees and sunny. Hard to believe Fall is right around the corner. I'm just hoping it doesn't get lost and Winter doesn't come early (hate it when that happens!).

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I am a nurse and have worked in the health insurance field for 2 decades, always trying to be a patient advocate. I advise everyone to go on the drug manufacturer website and check their patient assistance program. Many have a $0 co-pay coupon, with no financial info needed. Some are income based. Do your own research, often it will be very different than what the doctor's office will tell you as the drug companies have incentives for the physicians no to tell patients when there is a $0 or minimal co-pay available. Where there is a $0 co-pay you do not use our insurance, you simply print the coupon or take a picture of it with your phone and bring to the pharmacy. Also ask for home infusion it could be cheaper still. Another resource is a company called "Prescription Hope" it is income based, however worth looking into, if you qualify all prescriptions are $50/month supply. Again you do not use your insurance. Lastly, before you fill a prescription get the Mobile App of go the the website of GoodRx when you enter the drug name, it will give you a list of pharmacies and the cost of the drug, the difference between stores can be significant. Good Luck out there!

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