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

My neurologists didn’t recommend having a biopsy and claimed that it is far from being a “gold standard”.

The article below address some of the difficulties with using this test. https://jnnp.bmj.com/content/93/9/915

The table below from another article claims that 30% of people with SFN get normal test results.

@ea1 - Thank you for sharing this information. I went for many years before seeking a diagnosis and my Mayo neurologist also did not use a skin punch biopsy as part of my testing for SFN. If you have the link to the article with the table/chart, I would appreciate being able to read it.

Updated response -- I found the article that shows the table - Thank you!

-- Utility of Skin Biopsy in Neuromuscular Disease:
https://practicalneurology.com/articles/2019-aug-july/utility-of-skin-biopsy-in-neuromuscular-disease

@aemedic and @bovic21, The Protocol 525 figures out to be $7.33/day at $220/month. Before the person who started the Facebook group worked with a local pharmaceutical firm and created the Protocol 525 by combining a few of the supplements together for fewer pills, we used to have a list of links that we all used for ordering mostly from Amazon. The problem I had with ordering each supplement is that you were always running out of some vitamins before others due to the quantity of capsules in each product. So it was more work to stay on top of ordering so you didn't run out. Right now the group is in an interim and they are working on a new blended version of the protocol which is why you see the different products by brand name. Hoping you both get relief however you order the supplements!

@johnbishop
I see on the Protocol Facebook page that there is a new blend coming out called Protocol 626.
John do you know if there is a change in the ingredients of this new blend? Or is it just a change in how the capsules are loaded?
And also, I couldn't find anywhere if consuming Medical Marijuana gummies for pain and relaxation is ok while taking the Protocol? I see drinking alcohol is not recommended, but couldn't find anything on marijuana.
Thanks for your help!

Hi @bovic21 - Searching through the FB group using 626 and reading the different comments, this is my understanding.

I'm pretty sure the ingredients are the same. When the protocol first came out in 2014 it was a lot to swallow at 28 capsules tablets caplets and gel caps daily. In February of 2020 the Protocol 525 was introduced, the first blended version, 525 equaling 12. The 525 supply was depleted and they went back to more pills but same or better quality ingredients. They are now working on the new blended version (626) and targeting the same number of pills (12). The plan is to work toward getting a liquid blend for better bioavailability but the 626 version will need to be out at least 18 months before a liquid can come about due to the expense of the project and development.

I think there are members that are using or have used Medical Marijuana for ailments they have along with their neuropathy for pain relief. I did stop all alcohol myself due to not wanting to make my neuropathy worse.

Hi @lisette43, Welcome to Connect. I do add Turmeric and Ubiquinol along with the Protocol 525 to hopefully help with my PMR and other conditions I have. I also started adding some Vital Proteins Collagen Peptides daily to my first cup of coffee to help with my thin skin and nails. The only warning I'm aware of is the ramp up version of the 525 for new users for the R-ALA because if you've never taken it before starting at 1200 mg daily can cause some people discomfort. I also would print out a list of the ingredients and discuss them with your doctor to make sure there aren't any problems with any medications you are currently taking. You might also want to read through the FAQs on the product website here - https://theprotocol525.com/faq/ where you can copy a list of the ingredients to share with your doctor.

Since I was already taking close to the R-ALA amount in the protocol before I started the new 525 I didn't need to do the ramp up. I think the discomfort that some folks had was with stomach issues. I would be interested in hearing how it goes for you after you start on the protocol. The group has been holding Zoom and Facebook live meetings once in awhile that you might find helpful. They normally have an announcement in their Facebook group feed of when they are having a Zoom meeting. Here is a post by another member on the protocol that you may find helpful - https://connect.mayoclinic.org/comment/611196/.

If you have any other questions about the protocol 525 I would be happy to share my experience and what I know about it.

Hi John

With numbness like yours I have just started on the 525 (more-or-less). One question: Why is NAC not part of the protocol? It seems to be recommended by others suffering from neuropathy.

Hello @mct, Welcome to Connect. I don't really have an answer for you other than one of the ingredients of the protocol is similar - acetyl-l-carnitine.

"Acetyl-L-carnitine (ALCAR) may help reduce the severity of chemotherapy-induced peripheral neuropathy. High-quality evidence is needed to evaluate whether ALCAR may benefit the treatment of peripheral neuropathies associated with diabetes or caused by antiretroviral therapy."
-- https://lpi.oregonstate.edu/mic/dietary-factors/L-carnitine

Here's some more info that explains why it's part of the protocol.
-- The Therapeutic Effects of Acetyl-L-Carnitine on Peripheral Neuropathy: A Review of the Literature:
https://www.naturalmedicinejournal.com/journal/therapeutic-effects-acetyl-l-carnitine-peripheral-neuropathy-review-literature
Do you mind sharing a little more about your neuropathy diagnosis and how long you've had it?

What is 625? Is it same for people with GERD and seizures?