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Mentor

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

Posted by John, Volunteer Mentor @johnbishop, Apr 21, 2020

I have used the original version of the Protocol 525 product (https://theprotocolworks.com/) since 2016. I have idiopathic small fiber peripheral neuropathy with the only symptom being numbness in both legs. When I started taking the protocol, the numbness was just below my knees. After 2 months, the numbness seems to be just above the ankles which is subjective on my part with no additional testing. I do feel it is a win-win for me as my neuropathy has not progressed like I was told it would by the neurologist. I have continued taking the protocol in hopes that it may continue to roll back the numbness symptoms. I have noticed some new feeling in my feet in the last 2 months. Some feeling has returned to me feet and they seem to feel better lately although I still have the numbness – hard to describe the difference.

The Protocol 525 is not a cure for neuropathy. It treats the pain and discomfort symptoms of neuropathy without the drugs which have their own side effects. Have you tried the Protocol 525 or the original protocol? Did it help? If yes, how? If no, please share.

Note: I have no commercial investment in the protocol and I am sharing this information as someone who has found some degree of relief using this combination of supplements. I also discussed these supplements with my Mayo primary care team before I started taking them. The care team sent them to the pharmacist for review who did not have any major concerns for me taking them.

*** Edited Oct 3, 2023 ***
For more information and a list of the ingredients, please see the frequently asked questions on the Protocol's website here - https://theprotocolworks.com/faq/.

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

helennicola | @helennicola | Feb 23, 2021
In reply to @johnbishop "Hi Helen @helennicola - Yes I take all of the Protocol supplements which includes both fish..." + (show)
@johnbishop

Hi Helen @helennicola - Yes I take all of the Protocol supplements which includes both fish oil and hemp seed oil. The R-ALA capsules in the Protocol contain 600 mg Na-R-ALA but also combine some of the other supplements to reduce the number of capsules we have to take. The other supplements in the same capsule are 83.5 mg DFE Folate, 200 mg Magnesium, 4000 mcg Vitamin B12. This is in 2 capsules and the Protocol calls for 2 of these in the morning and 2 in the evening.

A card is included with the Protocol so that you can share the information with your doctor.

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Thanks John, I recently started hemp seed oil capsules besides an omega 3 cream which I take but it seemed to give me a headache, not sure I need to be taking both so I stopped it. I also take 600mg. RAla. B12 (not as much) and a low dose B Complex plus D and ALC. Helen

REPLY
helennicola | @helennicola | Feb 24, 2021
In reply to @johnbishop "Hi Helen @helennicola - Yes I take all of the Protocol supplements which includes both fish..." + (show)
@johnbishop

Hi Helen @helennicola - Yes I take all of the Protocol supplements which includes both fish oil and hemp seed oil. The R-ALA capsules in the Protocol contain 600 mg Na-R-ALA but also combine some of the other supplements to reduce the number of capsules we have to take. The other supplements in the same capsule are 83.5 mg DFE Folate, 200 mg Magnesium, 4000 mcg Vitamin B12. This is in 2 capsules and the Protocol calls for 2 of these in the morning and 2 in the evening.

A card is included with the Protocol so that you can share the information with your doctor.

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John, Toni, Chris, Hank, etc. I just read of a 3rd company working on a drug to treat neuropathy: Disarm, recently acquired by Eli lilly, Regenacy and Winsantor. The technologies seem promising, let’s hope it doesn’t take forever to get something to market. Helen

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sunnyflower | @sunnyflower | Feb 26, 2021
In reply to @johnbishop "Hi Helen @helennicola - Yes I take all of the Protocol supplements which includes both fish..." + (show)
@johnbishop

Hi Helen @helennicola - Yes I take all of the Protocol supplements which includes both fish oil and hemp seed oil. The R-ALA capsules in the Protocol contain 600 mg Na-R-ALA but also combine some of the other supplements to reduce the number of capsules we have to take. The other supplements in the same capsule are 83.5 mg DFE Folate, 200 mg Magnesium, 4000 mcg Vitamin B12. This is in 2 capsules and the Protocol calls for 2 of these in the morning and 2 in the evening.

A card is included with the Protocol so that you can share the information with your doctor.

Jump to this post

HI John, Helen @helennicola, my Neurologist told me to use the S and R ALA. I get it at Amazon: https://www.amazon.com/gp/product/B01EIMRXQE/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
I don't notice any improvement in my sting/burn/numb/pins&needles. They are still just as brutal as ever. Have you or anyone you know of, had any improvement in these Sxs? John, you have numbness but not the pain right? I also asked this question a little while ago on an existing discussion in the neuropathy group. Thanks so much and take the best of care, Sunnyflower PS: My neurologist recited some studies that led her to advise the S and R ALA.

REPLY
3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Feb 26, 2021
In reply to @sunnyflower "HI John, Helen @helennicola, my Neurologist told me to use the S and R ALA. I..." + (show)
@sunnyflower

HI John, Helen @helennicola, my Neurologist told me to use the S and R ALA. I get it at Amazon: https://www.amazon.com/gp/product/B01EIMRXQE/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
I don't notice any improvement in my sting/burn/numb/pins&needles. They are still just as brutal as ever. Have you or anyone you know of, had any improvement in these Sxs? John, you have numbness but not the pain right? I also asked this question a little while ago on an existing discussion in the neuropathy group. Thanks so much and take the best of care, Sunnyflower PS: My neurologist recited some studies that led her to advise the S and R ALA.

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Hi @sunnyflower, Yes I have numbness in my feet and a little above my ankles. It was a little below my knees when I started taking the Protocol. I've not seen any studies saying S-ALA is just as effective as R-ALA or na-R-ALA which is what the protocol uses. It would be interesting to find out what your neurologist cited. Here's just one of many articles I've read supporting using R-ALA. I'm no chemist or expert but it's my understanding the S-ALA is the synthetic byproduct of producing R-ALA so it's cheaper not to remove it. I could be way off base though.

(R)-Lipoic Acid: Unique ‘Mitochondrial Antioxidant’ Fights Premature Aging: https://nutritionreview.org/2019/07/r-lipoic-acid-unique-mitochondrial-antioxidant-fights-premature-aging/

REPLY
1 reply
sunnyflower | @sunnyflower | Feb 26, 2021
In reply to @johnbishop "Hi @sunnyflower, Yes I have numbness in my feet and a little above my ankles. It..." + (show)
@johnbishop

Hi @sunnyflower, Yes I have numbness in my feet and a little above my ankles. It was a little below my knees when I started taking the Protocol. I've not seen any studies saying S-ALA is just as effective as R-ALA or na-R-ALA which is what the protocol uses. It would be interesting to find out what your neurologist cited. Here's just one of many articles I've read supporting using R-ALA. I'm no chemist or expert but it's my understanding the S-ALA is the synthetic byproduct of producing R-ALA so it's cheaper not to remove it. I could be way off base though.

(R)-Lipoic Acid: Unique ‘Mitochondrial Antioxidant’ Fights Premature Aging: https://nutritionreview.org/2019/07/r-lipoic-acid-unique-mitochondrial-antioxidant-fights-premature-aging/

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Thanks John!!

REPLY
helennicola | @helennicola | Feb 26, 2021
In reply to @sunnyflower "HI John, Helen @helennicola, my Neurologist told me to use the S and R ALA. I..." + (show)
@sunnyflower

HI John, Helen @helennicola, my Neurologist told me to use the S and R ALA. I get it at Amazon: https://www.amazon.com/gp/product/B01EIMRXQE/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
I don't notice any improvement in my sting/burn/numb/pins&needles. They are still just as brutal as ever. Have you or anyone you know of, had any improvement in these Sxs? John, you have numbness but not the pain right? I also asked this question a little while ago on an existing discussion in the neuropathy group. Thanks so much and take the best of care, Sunnyflower PS: My neurologist recited some studies that led her to advise the S and R ALA.

Jump to this post

Hi Sunny, sorry the ALA didn’t help, maybe you need to try the RAla, I know it helps me because it is usually very fast acting. I have been taking it for 3 yrs. since the onset of my SFN. Helen

REPLY
1 reply
Catcando | @catharbert | Feb 26, 2021
In reply to @johnbishop "Hi Helen @helennicola - Yes I take all of the Protocol supplements which includes both fish..." + (show)
@johnbishop

Hi Helen @helennicola - Yes I take all of the Protocol supplements which includes both fish oil and hemp seed oil. The R-ALA capsules in the Protocol contain 600 mg Na-R-ALA but also combine some of the other supplements to reduce the number of capsules we have to take. The other supplements in the same capsule are 83.5 mg DFE Folate, 200 mg Magnesium, 4000 mcg Vitamin B12. This is in 2 capsules and the Protocol calls for 2 of these in the morning and 2 in the evening.

A card is included with the Protocol so that you can share the information with your doctor.

Jump to this post

How long have you been taking this and what kind of changes/results have you seen as a result of taking it? Thanks for sharing.

REPLY
1 reply
sunnyflower | @sunnyflower | Feb 27, 2021
In reply to @helennicola "Hi Sunny, sorry the ALA didn’t help, maybe you need to try the RAla, I know..." + (show)
@helennicola

Hi Sunny, sorry the ALA didn’t help, maybe you need to try the RAla, I know it helps me because it is usually very fast acting. I have been taking it for 3 yrs. since the onset of my SFN. Helen

Jump to this post

Hi Helen, I am taking the R and S ALA. Take care, Sunny

REPLY
Hank | @jesfactsmon | Feb 27, 2021
In reply to @sunnyflower "HI John, Helen @helennicola, my Neurologist told me to use the S and R ALA. I..." + (show)
@sunnyflower

HI John, Helen @helennicola, my Neurologist told me to use the S and R ALA. I get it at Amazon: https://www.amazon.com/gp/product/B01EIMRXQE/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
I don't notice any improvement in my sting/burn/numb/pins&needles. They are still just as brutal as ever. Have you or anyone you know of, had any improvement in these Sxs? John, you have numbness but not the pain right? I also asked this question a little while ago on an existing discussion in the neuropathy group. Thanks so much and take the best of care, Sunnyflower PS: My neurologist recited some studies that led her to advise the S and R ALA.

Jump to this post

@sunnyflower
Hi Sunny, it seems like, from what I have heard from different people, that some people have a definite effect from RALA and some people absolutely don't. I personally am in the "don't" category, however I take it for it's supposed synergistic effect with acetyl l carnitine, from which I derive a noticeable energy boost. Now, Lori @lorirenee1 is an example of someone who says emphatically that she HAS gotten a positive benefit to her pain from taking RALA. So, who knows? Linda takes it and she notices nothing as well. Best, Hank

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 27, 2021
In reply to @catharbert "How long have you been taking this and what kind of changes/results have you seen as..." + (show)
@catharbert

How long have you been taking this and what kind of changes/results have you seen as a result of taking it? Thanks for sharing.

Jump to this post

@catharbert - I've never had pain with my neuropathy just the numbness. I've been taking the Protocol 525 starting with the previous version which were the same supplements but we were taking twice as many pills. That's when the groups leader and some key members sought out a local pharmaceutical company to combine the supplements into fewer pills. I first started taking the protocol in Sept 2016 and my numbness felt to be just below my knees and seemed to be progressing. By December of 2016 the numbness seemed to be improving and was just above the ankles but it feels like it hasn't gotten much better. At the same time it hasn't gotten any worse which is what my neurologist said was going to happen so I've just accepted it as my new normal.

This past year I have had some days where my feet feel close to normal meaning I have some sensation and feeling in them but not quite what I would consider normal. I also have to wear 20-30 mmHg compression socks for mild lymphedema in my legs and they do tend to make it worse but it's still better than it was and better than the alternative.

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