Has anyone benefited from treatment claimed by Neuropathy Clinics?

Hi Toni @avmcbellar, You will notice I changed your title a little to better describe the discussion. When I was first diagnosed with neuropathy I did look into one that advertises a lot and a friend's wife who is a little older than I am went there on a regular basis and thought it helped her. I looked into it myself and thought it was more of a dubious type of treatment. They were using a combined treatment of infrared/LED therapy on the leg plus massage and something else. When I called to discuss the cost and get more information, I was told everyone is different but it usually works withing 8 to 12 treatments at $75 to $145 a pop depending on the time they spent but there were no guarantees. I still get mailings from them for a free lunch to discuss the treatments (another red flag - no free lunch 🙂). I wished it weren't so but there are a lot of businesses out there making money from the pain and suffering of folks with neuropathy.

Beware Expensive Treatments of Peripheral Neuropathy -- https://www.foundationforpn.org/5179/

Maybe there are some folks who have tried it and it helped but I've not met any yet.

Yes, there are a lot of charlatans and snake oil salesmen about in this wild world of ours. I just googled "neuropathy pain relief clinics" and there were 7 separate centers on the first page alone (and about the same number on page 2), along with the "Beware Expensive Treatments..." article John references (thankfully that shows up early in the search). 20 million neuropathy sufferers in the U.S. alone are a BIG market! And they attract both the good and the bad as far as people who want to help (maybe a little more of the bad than the good?). I am just guessing that the Mayo pain program Rachel @rwinney is attending next month might be as good as any of these types of programs are likely to be. Hoping so, anyway.🤞 Best, Hank

@johnbishop thanks. Sounded too good to be true. I don’t know what 15% or less nerve damage means in terms of the stage of neuropathy. I believe all the “free” is promoted to lure people for a service the company is providing. The benefit is to find people with the right insurance that pays for the service. This is their method for gaining customers. I see that when companies do “free screenings” for blood pressure checks. They are looking for potential customers. Same here with the clinic. They are hoping to bring in more people by providing a “free lunch”. I am also leery. Do these companies really care about the people or is this a monetary gain for them? Thanks. Toni

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. 🙂

@johnbishop
No, but life might be a box of chocolates for some of these con artists, unfortunately. It's the same with the supplements. I remember when Linda started her neuropathy journey we ordered all sorts of neuropathy supplements that supposedly "cured" neuropathy. At best they were ALA, B1, B12, and maybe a couple herbs. At worst they ended up causing pain with some wacko assortment of goodies someone must have figured made sense for PN with no research. We learned the hard way the first year, then found out you have to deep dive into the internet yourself to get the best answers that are out there. What a trip! Hank

Yes, I am familiar with the one n Minneapolis, but it was a few years ago. At that time, and I actually made an appointment, they were saying that you probably would need at least 10 treatments to see if the treatment was effective. The cost of each treatment was $250, not covered by insurance. I never went back, although I know of a few people who did go through with the treatments and found some reduction in pain. But then if the pain comes back, you need to go for more treatments. Check them on their website. They now have clinics in 7 states. Realief Neuropathy Center

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

@johnbishop, you may find this inappropriate, but I'd like to add the Protocol525 to the discussion. This is another program that makes very positive claims (like some neuropathy clinics) that @avmcbellar may want to explore.
This combination of ingredients is being promoted as a "discovery" by Bob Diamond after many years of experimenting with various supplements. He has founded a 501 C (charitable) corporation, and claims that his efforts are simply to help other people, not to make money for himself. This all may be true.
On the other hand, a cursory web search will find many areas of controversy involving him personally, with legal and other battles ongoing.
I am not a participant in Facebook, so I don't have access to his Facebook group. I know others on this forum do. They may want to chime in with their experiences and personal impressions.
From my limited perspective, what I know about the protocol, the group and Mr. Diamond seems a little slick and in your face. None of this means that the protocol doesn't work, nor that Mr. Diamond isn't exactly what he claims to be.
All 501 C corporations have to file public tax returns. This may be one avenue available to determine whether in fact the protocol is a charitable service or a money making proposition.
What do others here, with more experience think?

Jeff, I had the same thoughts, I think the “placebo” effect” has helped some and I do believe that most of the supplements can help rather than harm one’s health, but am skeptical of the heavy cheerleading type of promoting on Facebook. Helen

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.