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Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: 3 days ago | Replies (2973)

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@johnbishop

@rosy33 I have to disagree with you. I have no idea what doesn't sit right with you but I have been a member of the group since it's early start in 2016 and it is most definitely not a scam. To start with, it is a not for profit 501c3 organization registered in the State of Florida. The second thing is that the only supplement the group currently sells is the Manitoba Hemp Oil. They only did this because members were getting expired/bad hemp oil when ordering online through Amazon due to shelf life and stocking by the companies. The person who started the group has a commercial size refrigerator and made a deal with the hemp oil manufacturer to direct ship quantities to his address where he can refrigerate and keep them fresh until a member orders them. Any profits from the sale of the hemp oil to members goes to a Help Another Member program (H.A.M.) which the group started to provide members who cannot afford the protocol a 30 day supply until they can purchase it on their own. I regularly donate money to support the program myself. I would not give my money to support anything that is a scam to people with neuropathy.

If you do a search of the group on Facebook using the phrase #theprotocolworks, you will find the stories written by each of the members who have been helped and no longer struggle with their pain symptoms from neuropathy. You can also find my story in the group. I've also posted how it has helped me in a post earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985. They also are no longer dependent on pain medications and have been able to taper off. You can also search the Files section of the group to find the different supporting research for each of the supplements and how they help with providing the nutrition needed by nerves.

To your point, there are definitely a lot of scams out there taking money from people suffering from neuropathy and you have to do your own research and make your own decisions based on what you believe. I can tell you that the group does have some haters since the person that started the Solutions to Peripheral Neuropathy Pain & Discomfort group was a member of another group that had some issues which is why he started a new group for folks that were interested in getting off of the brain numbing medications that continually need to be increased to make the pain go away (my words/thoughts). The group may not sit well with some people because they want you to do your own research in the group before asking questions. They've had quite a few bad actors from the other group that will join with fake names and spread discontent.

Here's the link you are referring to which is a report written by another groups Facebook group's member/leader. If you read the rebuttals you will have a better understanding of how this so called scam report came about:
https://www.ripoffreport.com/reports/bob-diamond/internet/bob-diamond-solutions-to-pn-neuropathy-treatment-group-scam-bob-diamond-social-influe-1370243

Happy Friday and hoping for a pain free day for all!

John

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Replies to "@rosy33 I have to disagree with you. I have no idea what doesn't sit right with..."

Hi John,
I read your message and I really want to believe. I've wasted so much time and energy trying all the different programs. The latest is with my doctor for daily vitamin packets which turned out to be something I can't use because of the high amount of B6 in the multi. All together that farce cost me a total of $600, $400 for the office visit and $200 for the vitamins that I can't use. I just get so that I find it hard to trust people anymore. I have idiopathic PIN for 20 years and have not been on any prescription meds for the past 10 years. I'm trying to research a way to help with healthier nutrition and vitamins because I really believe it starts in the gut. I plan to use the vitamin packets I have left sans the B6. I will order the Protocol once I do that. Thank you for your message and I hope you have a happy weekend. 🙂

John, there is a PR company in Washington DC that specializes in smearing non-profit organizations. They are hired, of course, by for-profit companies that want the non-profit out of the way so they can do something less-than-kind to make more profit. They did a massive ad campaign saying that the director of Goodwill Industries makes millions of dollars a year (he doesn't, he's a retired minister who makes less than $100,000; my husband got to know him when he was on the Board of Governors). They started the scandal that ASPCA backed legislation to kill shelter animals (they certainly didn't). The company starts a new non-profit org that sounds like 'concern for animals' or 'citizens for equality' or something along those lines - the accusations are made by the new non-profit which folds soon after they are discredited but some damage is already done. People on facebook repost the headlines and stories from newspapers that no one has heard of.
A relative of mine accidentally met the guy who owns the company when she was working for Humane Society in Washington DC. The same company also starts rumors about medical procedures when a competing company hires them to. Peggy