Have you tried the new Protocol 525 product for neuropathy relief?

Hello @bunnynumbfeet, Welcome to Connect. I really never had pain with my idiopathic small fiber PN but was looking for something that might slow or stop the progression. I think the 525 protocol has helped slowed and possibly stopped the progression of my neuropathy but it's subjective on my part since I haven't had a followup nerve conduction study and I have never had a skin punch biopsy to corroberate that it's better now. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/

I think the folks who benefit the most from the 525 protocol are the ones who have a lot of associated pain and are on medications for the neuropathy pain. A member of the Facebook group shared how it helped them in another discussion here - https://connect.mayoclinic.org/comment/611196/

I have balance issues also. Some I think is related to my neuropathy and some to my age and other factors. I have been working on my balance problems with exercise to see if I can improve it. Here's a discussion you may find helpful -- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

Have you tried any exercises or physical therapy to help your balance problem?

Hello John. Thanks for the response. It's nice to be in touch. I did have a therapist come to the house a couple times a week then we did the kinds of exercises that you shared. Like most people, I despise exercising but it looks like that may be my last resort and will try it again. I will also try the 525 protocol. Thanks, Bunny

Hello @bunnynumbfeet, I don’t take all of the supplements in Protocol 525 due to drug interactions I have with a couple of the supplements. However, I do think the supplements along with a strict change in diet have reduced the sharp nerve pain I used to get. My overall muscle pain and numbness, however, continues to get worse. My neuropathy is due to autoimmune diseases, one of my medications, and liver disease (caused by one of my autoimmune diseases).

I joined Connect after I did a search for numbness and nerve pain, and have gathered a wealth of helpful information since. As the highly knowledgeable and ever helpful @johnbishop says, I too handle my numbness by pushing myself to walk and do exercises. These include several exercises I’ve found posted on Connect that can be done while cooking or other hanging around, watching TV, etc. Balancing exercises, standing on one foot, doing steps, walking backwards. All of this helps me to become accustomed to my numbness. I don’t think my numbness will ever go away and seems to just keep getting worse, so I believe that the best way to deal with it is to face it head on and challenge myself to get over being nervous about it, know my limitations, and practice, practice, practice.

As John mentioned, maybe a visit to a physical therapist would be beneficial. I’ve had occupational therapy for hand issues in the past. So, I do the exercises I learned from that in order to maintain stronger hand control. I suffer also from tremors, so these exercises are helpful for this as well.

Hang in there! I started becoming numb a year ago…starting in my abdomen, after liver transplant surgery. It moved down my right leg, feet, up my left leg, and now my arms and hands. It is definitely scary and unnerving. We’re all different, so you’ll need to find what works for you. But, Connect patients have a wealth of experiences to share, some of which you will hopefully find helpful.

Thank you so much for this kind and thoughtful note. I am so happy to have found this community. I have
really not given exercise the attention it deserves. It's something I've always hated but I'm trying to cultivate a different mindset. It's one of the few things I can do to help myself and will try to look on it as a positive action I can take instead of a chore to put off. Thanks for the encouragement. Bunny

To much for me. Do not have the patients to do it

Hi John, i did start the protocol for about a week but after reading about the potential dangers of high doses of alpha lapoic acid i stopped abruptly until i could gather more info. Apparently it binds to mercury in your body and carries it to brain, organs, etc. Have you heard of that claim? Any feedback is appreciated John. Thanks

Hi @lincolned, I have not heard of that but did find something that mentions the opposite but it's from 2002.

Mercury toxicity and antioxidants: Part 1: role of glutathione and alpha-lipoic acid in the treatment of mercury toxicity:
-- https://pubmed.ncbi.nlm.nih.gov/12495372/

Mercury toxicity is a bad thing but where did you read that high doses of ALA are bad and carry mercury into the brain?

I did find this information that says if you have a mercury toxicity health issue already it could make it worse - https://clubtbyh.com/2016/07/26/are-you-taking-alpha-lipoic-acid-please-stop-until-you-read-this/

The Surprising Connection Between Alpha Lipoic Acid And Heavy Metal Detox
posted on July 26, 2016 in ALA, From the Blog, Heal, Video Tips 98

This post is about Alpha Lipoic Acid (ALA) and its relationship to heavy metal detoxification in the body and brain, in particular mercury detoxification. This video is intended for those who have mercury amalgams or who believe they have toxic levels of mercury in their bodies.

I wanted to address this issue because ALA is a very common supplement. However, it has a role in metal detox that is not fully understood by many who take it, and can be very dangerous to your health if not used correctly. It can be extremely healing when used correctly.

ALA is present in many multivitamins, so you might be getting it without realizing it. Many of my clients are also taking this supplement in isolation, in high amounts, for brain health and longevity.

ALA Warning
Alpha Lipoic Acid (ALA) is a mercury-chelating antioxidant. If you have heavy metals in your body in significant amounts, it is not a good idea take large doses of any chelating agents unless you are aware of the potential side effects of redistribution (explained below) and you know how to take care of yourself should this occur. If you take ALA and start to feel fatigue, headaches, “burning brain”, rash, etc., I would stop taking ALA immediately.

What Is Alpha Lipoic Acid?
Alpha Lipoic Acid (ALA) is a naturally occurring antioxidant in the body and plays a role in energy production. It also chelates with mercury and other heavy metals to varying degrees. This means that it will bind with certain reactive heavy metals that it comes into contact with in your body.

In particular, ALA has an affinity to mercury. In other words, it has an especially strong “magnetic pull” to mercury. It will attach itself to mercury found in your body and brain.

It’s important to know that your body has stored away these reactive metals into remote places, like fatty brain tissue, bone, muscles, fat, organs that aren’t urgently “essential” for survival. This protects you from the damaging effects of these heavy metals.

When the mercury and other reactive metals are actively bound by ALA, the resulting compound is recognized as a neutral toxin that can be safely eliminated via your kidneys. This “neutral” molecule travels back into your bloodstream from wherever the ALA “found” the metal and bound to it, and your body is able to filter it out of your blood through your kidneys and eventually your urine.

Many people do not realize that ALA can do this. They are only taking it for longevity or for other reasons.

The big HOWEVER comes now:
ALA has a half life of 3-4 hours. This means that half of the ALA you took has been broken down into smaller compounds within 3 hours, and thus, is no longer strong enough to bind the mercury.

At the three hour point, half of the mercury that it has been pulled out of your body “storage” and was bound by ALA, is then dropped into your bloodstream, for your body to deal with. No ALA left in sight to bind to it.

This is called redistribution and it can be dangerous and damaging.

Redistribution can cause all of the same symptoms of mercury poisoning, all over again. There is a solution that I spoke about in the video. Keep reading…

also see you tube video: Robin Shirley CHHC "You need to understand alpha lipoic acid role in mercury chelation.
Please let me know what you think John

I think the only issue is if you already have a high level of mercury or have mercury toxicity. But that’s just what I interpret from reading the information.

Possibly John. but between seafood being part of my diet and amalgam in some old fillings i just wonder.....I was so excited about protocol possibilities but now i am leary. And I also thought that users should at least be aware of this.