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. 🙂
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.
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.
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. 😇
@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.
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
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
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
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.
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. 😉
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. 😉
@margottaylor, First and foremost, thank you for checking in about your November Mayo visit. I know it is often more challenging to wait without knowing than it is to deal with the outcomes. It is wonderful that you want to share your information with Connect members so that all may benefit. Knowledge is power, especially as we deal with many roads to travel on what for many of us, is a new and bewildering journey.
Secondly, thank you for the cogent manner in which you reiterated the mission guidelines that every mentor and moderator are committed to maintaining in their efforts to support and foster quality of life for members. May you have a day of comfort and ease. Chris
Connect
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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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3 ReactionsMy 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. 😇
-
Like -
Helpful -
Hug
4 ReactionsJohn, 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
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3 Reactions@pfbacon
That's totally amazing and despicable!
Jim
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1 Reaction15 years,
I have used a combination of essential oils for years that I concoct myself. I would be most interested to try your formula also.
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. 😉
-
Like -
Helpful -
Hug
4 Reactions@margottaylor, First and foremost, thank you for checking in about your November Mayo visit. I know it is often more challenging to wait without knowing than it is to deal with the outcomes. It is wonderful that you want to share your information with Connect members so that all may benefit. Knowledge is power, especially as we deal with many roads to travel on what for many of us, is a new and bewildering journey.
Secondly, thank you for the cogent manner in which you reiterated the mission guidelines that every mentor and moderator are committed to maintaining in their efforts to support and foster quality of life for members. May you have a day of comfort and ease. Chris
-
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Helpful -
Hug
4 ReactionsYes. My name is John S. I have tried a lot of things. I am going to try the stimulator. Has any body tried this, and did it help?
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1 ReactionHi John @johnsticco4 -- @jimhd has mentioned using the BR Burst Stimulator in the following post which is in the
> Groups > Neuropathy > Ideas for pain relief from Small Fiber Neuropathy (SFN) discussion:
-- https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/?pg=14#comment-340935