1. < Neuropathy

Has anyone benefited from treatment claimed by Neuropathy Clinics?

Posted by avmcbellar @avmcbellar, Sep 15, 2020

Has anyone benefited from the neuropathy treatments claimed by clinics! I see advertisements on television saying there is help for people who sustained 15% or less nerve damage. Most insurance plans cover the cost including Medicare. I called the clinic to learn more information. The clinic does an initial exam to determine the percentage of nerve damage. They offer help to resolve the neuropathy through a series of visits incorporating exercises. They will determine how many visits to the office will be needed for therapy from the start. I was just curious if anyone has tried this.

Interested in more discussions like this? Go to the Neuropathy Support Group.

jeffrapp | @jeffrapp | Sep 16, 2020
In reply to @johnbishop "Hi Jeff @jeffrapp, No I think it's always appropriate to discuss claims made to see if..." + (show)
@johnbishop

Hi Jeff @jeffrapp, No I think it's always appropriate to discuss claims made to see if they add up. I can only share my experience and tell you that I did a lot of research on my own and was taking most of the supplements already. I also learned that some of the supplements that I was taking were not high quality and some like the Alpha Lipoic Acid I was taking was mostly the synthetic inactive stuff and not doing the body any good. I do follow some of the older members in the group who were bedridden and found relief from all of their symptoms and were able to get off of the prescribed seizure medications for the neuropathy pain. I believe the controversy you are referring to is from the Facebook group Bob left because of issues with the current Admin. I was also a member in the other group and it was a neuropathy support group in name only. The person running that group created a bogus Ripoff Report that you can Google and get all the details including Bob's response and some comments by people that it has helped. He also shared a captured YouTube video of the guy that filed the bogus report. Ripoff Report is another dubious organization (IMHO) that lets any disgruntled person say whatever they want with no consequences and no way for you to clear your name if you are the target without thousands of dollars of legal fees.

That said, I know it may or may not help everyone even though it's helped me. I donate to the Help Another Member (H.A.M.) program when I am able. The program gives new members in need a one month supply to get them started and sometimes more than one month when possible. The H.A.M program is totally a members supported program and continues to help new members when funds are available. One negative comment I've heard over and over and can be viewed differently depending on your beliefs or frame of mind is if you join the Facebook group and don't read the introduction and start asking basic questions covered in the new member introduction without trying to search the group, the moderators have no patience and will tell you that they expect you to do your part and read and learn like everyone else. Tough but I can understand it and everyone needs to do their own research to avoid scams because they are out there.

Bottom line for me is that all of the supplements in the protocol are legit and have been identified by different research organizations/papers to help with neuropathy symptoms. The group had a page with links to all of the supplements on Amazon because of their 2 day delivery and availability. If you purchased the items using the links, Amazon gave a small percentage to the group like they do for any charitable organization and you can actually select which 501c3 you want to receive the percentage of each purchase you make and not use their links by searching for the same product. Now that they have the 525 product, the process is much simpler and less pills to swallow which benefits everyone on the protocol. I don't see that they make much profit if I was paying an average of <$10/day vs $6.44/day for the 525. I'm sure they are making a profit which part of goes to the member investors and the H.A.M. program which is OK by me, especially since the bottom line cost for me is the same between old and new.

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Hi John@johnbishop
Whew, that was a lot of work for you.
Thanks for the response, and for being so complete.
Based on your information, it appears that Protocol525 should be another consideration for @avmcbellar.
I'd be interested in replies from others who have had experience with this product.

REPLY
1 reply
avmcbellar | @avmcbellar | Sep 16, 2020
In reply to @jeffrapp "Hi John@johnbishop Whew, that was a lot of work for you. Thanks for the response, and..." + (show)
@jeffrapp

Hi John@johnbishop
Whew, that was a lot of work for you.
Thanks for the response, and for being so complete.
Based on your information, it appears that Protocol525 should be another consideration for @avmcbellar.
I'd be interested in replies from others who have had experience with this product.

Jump to this post

@jeffrapp Hi. The Protocal525 looks promising, the only issue I currently have is the monthly cost. I will keep it in mind for the future. For now I am taking the ALA and ALC capsules which seem to help decrease the burning pain. My neuropathy is manageable having it only on the left side of my body. It resulted from the last surgical repair of my ruptured AVM(ArteroVenousMalformation). I have been cured of an AVM but now I am left with its symptoms of muscle weakness, dizziness, lack of balance or coordination, diplopia, and motion sickness. I am also dealing with the newest diagnosis of neuropathy. It has been a long journey in getting to this point with the medical staff not knowing or having answers for me. Today marks my 4th anniversary of the AVM. Thank you everyone for the comments with your experiences. Your input has been a tremendous help with me making my health decisions and conclusions. You guys are awesome! Toni😃

REPLY
Hank | @jesfactsmon | Sep 17, 2020
In reply to @johnbishop "Hi Jeff @jeffrapp, No I think it's always appropriate to discuss claims made to see if..." + (show)
@johnbishop

Hi Jeff @jeffrapp, No I think it's always appropriate to discuss claims made to see if they add up. I can only share my experience and tell you that I did a lot of research on my own and was taking most of the supplements already. I also learned that some of the supplements that I was taking were not high quality and some like the Alpha Lipoic Acid I was taking was mostly the synthetic inactive stuff and not doing the body any good. I do follow some of the older members in the group who were bedridden and found relief from all of their symptoms and were able to get off of the prescribed seizure medications for the neuropathy pain. I believe the controversy you are referring to is from the Facebook group Bob left because of issues with the current Admin. I was also a member in the other group and it was a neuropathy support group in name only. The person running that group created a bogus Ripoff Report that you can Google and get all the details including Bob's response and some comments by people that it has helped. He also shared a captured YouTube video of the guy that filed the bogus report. Ripoff Report is another dubious organization (IMHO) that lets any disgruntled person say whatever they want with no consequences and no way for you to clear your name if you are the target without thousands of dollars of legal fees.

That said, I know it may or may not help everyone even though it's helped me. I donate to the Help Another Member (H.A.M.) program when I am able. The program gives new members in need a one month supply to get them started and sometimes more than one month when possible. The H.A.M program is totally a members supported program and continues to help new members when funds are available. One negative comment I've heard over and over and can be viewed differently depending on your beliefs or frame of mind is if you join the Facebook group and don't read the introduction and start asking basic questions covered in the new member introduction without trying to search the group, the moderators have no patience and will tell you that they expect you to do your part and read and learn like everyone else. Tough but I can understand it and everyone needs to do their own research to avoid scams because they are out there.

Bottom line for me is that all of the supplements in the protocol are legit and have been identified by different research organizations/papers to help with neuropathy symptoms. The group had a page with links to all of the supplements on Amazon because of their 2 day delivery and availability. If you purchased the items using the links, Amazon gave a small percentage to the group like they do for any charitable organization and you can actually select which 501c3 you want to receive the percentage of each purchase you make and not use their links by searching for the same product. Now that they have the 525 product, the process is much simpler and less pills to swallow which benefits everyone on the protocol. I don't see that they make much profit if I was paying an average of <$10/day vs $6.44/day for the 525. I'm sure they are making a profit which part of goes to the member investors and the H.A.M. program which is OK by me, especially since the bottom line cost for me is the same between old and new.

Jump to this post

@johnbishop @jeffrapp @avmcbellar
I did the research of the Protocol 525 last fall hoping it might help Linda, my wife. The person who does almost all of the instructional videos, Bob, had a very off putting, almost arrogant demeanor. Very difficult to sit through his LONG obnoxious stream of consciousness style talks. But I ordered a month of everything for the protocol from the group. Linda started on the ramp up of the r lipoic acid. She had a bad reaction to this after 2-3 days of 1200 mg/day and stopped RALA altogether. It took 2-3 weeks to get over the reaction, which was mostly much more severe neuropathy symptoms. We still have the hemp oil (part of the protocol) which she did start to take but then stopped as well. Anyway, bottom line, she did not like it and I felt guilty because I had been the one trying to push it on her.

She is now back to taking 300 mg RALA per day I believe. Protocol 525 may very well work for others, I am not trying to knock it in any way, it just was not for Linda. Best, Hank

REPLY
cyndya | @cyndya | Sep 25, 2020
In reply to @johnbishop "Hi Jeff @jeffrapp, No I think it's always appropriate to discuss claims made to see if..." + (show)
@johnbishop

Hi Jeff @jeffrapp, No I think it's always appropriate to discuss claims made to see if they add up. I can only share my experience and tell you that I did a lot of research on my own and was taking most of the supplements already. I also learned that some of the supplements that I was taking were not high quality and some like the Alpha Lipoic Acid I was taking was mostly the synthetic inactive stuff and not doing the body any good. I do follow some of the older members in the group who were bedridden and found relief from all of their symptoms and were able to get off of the prescribed seizure medications for the neuropathy pain. I believe the controversy you are referring to is from the Facebook group Bob left because of issues with the current Admin. I was also a member in the other group and it was a neuropathy support group in name only. The person running that group created a bogus Ripoff Report that you can Google and get all the details including Bob's response and some comments by people that it has helped. He also shared a captured YouTube video of the guy that filed the bogus report. Ripoff Report is another dubious organization (IMHO) that lets any disgruntled person say whatever they want with no consequences and no way for you to clear your name if you are the target without thousands of dollars of legal fees.

That said, I know it may or may not help everyone even though it's helped me. I donate to the Help Another Member (H.A.M.) program when I am able. The program gives new members in need a one month supply to get them started and sometimes more than one month when possible. The H.A.M program is totally a members supported program and continues to help new members when funds are available. One negative comment I've heard over and over and can be viewed differently depending on your beliefs or frame of mind is if you join the Facebook group and don't read the introduction and start asking basic questions covered in the new member introduction without trying to search the group, the moderators have no patience and will tell you that they expect you to do your part and read and learn like everyone else. Tough but I can understand it and everyone needs to do their own research to avoid scams because they are out there.

Bottom line for me is that all of the supplements in the protocol are legit and have been identified by different research organizations/papers to help with neuropathy symptoms. The group had a page with links to all of the supplements on Amazon because of their 2 day delivery and availability. If you purchased the items using the links, Amazon gave a small percentage to the group like they do for any charitable organization and you can actually select which 501c3 you want to receive the percentage of each purchase you make and not use their links by searching for the same product. Now that they have the 525 product, the process is much simpler and less pills to swallow which benefits everyone on the protocol. I don't see that they make much profit if I was paying an average of <$10/day vs $6.44/day for the 525. I'm sure they are making a profit which part of goes to the member investors and the H.A.M. program which is OK by me, especially since the bottom line cost for me is the same between old and new.

Jump to this post

My husband is about to give The Protocol 525 a try. As his spouse, I've been a member of that group since 2017 just reading studying the science behind it and reading other people's journeys Decided to stay a silent member to allow my husband the time to make his own decision if he wanted to try it or not. He has advanced ankylosing spondylitis and is numb from his crotch to his feet with recurrent shocks. He is on loads of gabapentin and wants off of it so badly. Will advise if he finds relief and improvement after 6 months, providing he does well with all the components. I am hopeful as I hate to see his suffering.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 25, 2020
In reply to @cyndya "My husband is about to give The Protocol 525 a try. As his spouse, I've been..." + (show)
@cyndya

My husband is about to give The Protocol 525 a try. As his spouse, I've been a member of that group since 2017 just reading studying the science behind it and reading other people's journeys Decided to stay a silent member to allow my husband the time to make his own decision if he wanted to try it or not. He has advanced ankylosing spondylitis and is numb from his crotch to his feet with recurrent shocks. He is on loads of gabapentin and wants off of it so badly. Will advise if he finds relief and improvement after 6 months, providing he does well with all the components. I am hopeful as I hate to see his suffering.

Jump to this post

Hello @cyndya, Welcome to Mayo Clinic Connect. Thank you for advocating for your husband. The hardest part for me when I first started on the original protocol 4 years ago was the hemp oil. Now I'm used to it and just gulp all 1.5 oz down the hatch and drink water afterwards with the capsules. I hope it brings your husband some relief from the pain. There are also a few other discussions you may find helpful:

- Have you tried the new Protocol 525 product for neuropathy relief? https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/
- ankylosing spondylitis: https://connect.mayoclinic.org/discussion/ankylosing-spondylitis/
- Ankylosing Spondylitis + Osteoporosis: https://connect.mayoclinic.org/discussion/ankylosing-spondylitis-osteoporosis/

If your husband finds relief and improvement, can you provide an update in the 525 discussion above?

REPLY
jessielee | @jessielee | Mar 26, 2022
In reply to @helennicola "Lois/John, one of the methods used in these treatment centers is “photobiomodulation” which is the use..." + (show)
@helennicola

Lois/John, one of the methods used in these treatment centers is “photobiomodulation” which is the use of low level laser/light therapy which is proven to have a positive effect on cell mitochondria. I think you can buy a device on line for $200 and do it yourself. I don’t know if can cure neuropathy but believe it can possibly help some. I had undergone a demonstration last year in which one of these devices was used on my neck to erase wrinkles and I was amazed, the results lasted for about 4-5 months. I was told it could be used on all body parts and would also help with pain reduction. Unfortunately I could not justify the cost at that time. ($5000) Helen

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I got socked over 6 grand for this quackery, which also included a TENS machine. It had absolutely no effect on my condition. Beacon of Life in Royersford, Pa.

REPLY
mojosinking | @mojosinking | Apr 16, 2022

Is there not a single person or doctor out there that has a real or valid answer for this problem?

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Apr 16, 2022
In reply to @mojosinking "Is there not a single person or doctor out there that has a real or valid..." + (show)
@mojosinking

Is there not a single person or doctor out there that has a real or valid answer for this problem?

Jump to this post

Welcome @mojosinking, I'm hoping we can get your mojo rising but I know how you must be feeling. I had a feeling similar to what you are expressing when I was first diagnosed with neuropathy. I think the real answer for any patient is to educate themselves and learn as much as they can about their condition and what treatments are available. This will help you have those conversations with your doctor and hopefully find something that will help your symptoms. Bottom line that I have learned is that there is no cure for neuroathy but there are a lot of businesses out there willing to take your money when you are in pain and want to believe their advertising.

Here are some other discussions where members have shared their experiences and what has helped them:
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/

I shared my neuropathy story in the discussion above. Here is a link to my post - https://connect.mayoclinic.org/comment/310341/
Can you share a little more about your diagnosis, symptoms and any treatments you have tried?

REPLY
dlmdinia | @dlmdinia | Apr 17, 2022
In reply to @johnbishop "Toni @avmcbellar here is the one I contacted in the Minneapolis area - https://realiefcenters.com/. They make..." + (show)
@johnbishop

Toni @avmcbellar here is the one I contacted in the Minneapolis area - https://realiefcenters.com/. They make it sound really good and they have customer testimonies but they show some charts for each person for where they were before they started treatment and how they are doing after treatment. Doesn't mention how many treatments, how much it cost or how they measured their success. I'm just really skeptical even though I've read and watched their videos - Really, pinwheel & tuning fork tests used as standard neuropathy tests?? RUN Forrest RUN because life is not a box of chocolates when you have neuropathy. 🙂

Jump to this post

Sorry it's so late, but I just now found your post. I participated in a clinical trial for neuropathy at UIHC in Iowa City IA last summer. The PhD in neurology tested me every 2 weeks, and the "tuning fork" is indeed a legitimate tool using the vibrations to test nerve sensitivity. I don't know what you mean by "pinwheel" but sharp and blunt pins were also employed. So, not quackery.

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Apr 17, 2022
In reply to @dlmdinia "Sorry it's so late, but I just now found your post. I participated in a clinical..." + (show)
@dlmdinia

Sorry it's so late, but I just now found your post. I participated in a clinical trial for neuropathy at UIHC in Iowa City IA last summer. The PhD in neurology tested me every 2 weeks, and the "tuning fork" is indeed a legitimate tool using the vibrations to test nerve sensitivity. I don't know what you mean by "pinwheel" but sharp and blunt pins were also employed. So, not quackery.

Jump to this post

Welcome @dlmdinia, I agree that the tuning fork can be a legitimate tool to test nerve sensitivity. I was being a little flippant with my response and didn't mean to offend anyone. I was specifically talking about the dubious help and high cost of so called neuropathy clinics. I do think that a tuning fork is not a definitive test for neuropathy although it may provide information on nerve sensitivity. Again, it's just my non medical and personal opinion from my own research.

This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed -- https://www.youtube.com/watch?v=3FrQ7Glvgok

Neuropathy Commons aslo has some information on the criteria for diagnosing which I think the skin punch biopsy is the gold standard -- https://neuropathycommons.org/diagnosis/diagnosing-peripheral-neuropathy

I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. Have you been diagnosed with neuropathy? Do you mind sharing a little more about the outcome of the clinical trial, did it help you find a treatment?

REPLY
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