Full Thread

Mike (New York City, New York) on 02/09/2009
4 out of 5 stars

I have been taking Acetyl-L-Carnetine for a couple years to combat my peripheral neuropathy. It has been recommended by a neurologist in New York. My feet are progressively doing worse but I don't know how much worse they would be without it. I also take Alpha Lypoic Acid. I take about 3000mg of Acetyl-L-Carnetine a day. I am looking for whatever works. I have the neuropathy through anti-hiv meds and possible from the virus itself.

Replied By Robert (Manhattan, New York) on 02/10/2009

Hi Mike you may try seeking the help of Qingcai Zhang, M.D. He has a long history in treating chronic viral diseases with modern Chinese herbal medicine and is based (I believe) in NYC. http://www.sinomedresearch.org/drz.htm

Replied By Brad (Owensboro, Ky) on 01/14/2012

I am not saying anything conclusive yet, but I have been taking Acetyl-l-carnitine for three days. I had numbness, tingling and sometimes burning in my feet. I have been taking 800mg daily. After three day they feel remarkably better. I will post further as time goes on.

Replied By Timh (Louisville, Usa) on 01/16/2012

Brad, Acetyl-l-Carnitine is very similar molecule to Choline and has remarkably similar action on the body; so you might get the same results by supplementing some kind of Choline product (Soy or Sun Lecithin is a favorite). Either will work, but do not use both as they will only compete against each other.

Replied By Gord235 (Vancouver, British Columbia) on 10/04/2017

I too have been taking ALC (750mg/day) together with R+ALA (600mg/day) and have experienced some relief although I believe it's the R+ALA that has helped the most out of the two. My greatest progress so far has been made with B12 so I am obviously deficient in this area. I am now on to Serrapeptase. If you scroll way down you will find where I have started a thread on this relatively new treatment. Good luck to all on your journey toward an effective treatment.

Replied By Gord235 (Vancouver, British Columbia) on 10/10/2017

Update: I have been able to cut back on the B vitamins (1,6 and 50 complex) although I still take 2 X B12 5000mcg/day. I have increased the ALA (r+alpha lipoic acid) to 800mg/day as it seems to be helping the most.

I also take N-Acetyl-L-Carnite 1500mg/day and Calcium/Magnesium 2X 133/167mg/day.

This protocol has eliminated 90% of the pain and I believe it is the ALA that is helping the most. Best wishes and good luck to all in their search for relief.

Replied By Rosy Giana (A) on 10/29/2017

I was taking alpha lipoic acid for many years until recently when I read that it depletes vitamin B1 which showed up as very low in my blood test. I am taking Benfotiamine, a form of B1, and discontinued the ALA. As it was, I really never noticed any difference when I was taking it. We all have different types on neuropathy, mine is idiopathic. I am now looking into nightshades.

Replied By Soazburrolady (Az) on 10/30/2017

Hi Rosy,

It was so interesting to read your information regarding ALA and the connection to depletion of Vitamin B.

About 4 months ago, I quite literally woke up with symptoms of Peripheral Neuropathy - numbness, tingling, weakness in feet, lower legs, hands, and forearms. It was particularly alarming to me as my mother had PN so severe that she needed a walker to ambulate.

After reading the info on Earth Clinic (my first go to! ) and some other sites, I did what I always do - which is use the "shotgun approach". I started on B complex, benfotiamine, niacinamide, sunflower lecithin, passion flower, evening primrose oil, and St John's wort. I also increased my B6, B12, and ....ALA. I have experienced such a lessening of symptoms - many days are symptom free, that I am reluctant to change the regimen. However, I will surely research a bit more on the ALA. I do think the benfotiamine has been really beneficial. I initially took a B1, but after more research, was convinced that benfotiamine is a better choice. Thanks for posting!

Replied By Gord235 (Vancouver, British Columbia) on 11/07/2017

Hi Soazburrolady, Interesting to read your post. I've used a similar shotgun approach with much success and have achieved a 90% reduction in pain. I take B1-200mg/day, B6-200mg/day, B50-200mg/day, B12-10000mg/day, R+ALA-400mg/day, NAL-Carnite-1500mg/day and last but not least, Serrapeptase-960000SU/day. If you scroll way down you'll see where I've started a thread on Serrapeptase. Youtube has lots of info.on this.

Replied By Art (California ) on 11/08/2017

In reply to Gord235 (Vancouver, British Columbia), Did you actually mean, B12-10,000 mg/day? That is a huge dose that would require you to take pills all day long to achieve! Most B-12 supplements are sold in tablets containing MCG (microgram) doses, but even at that, 10,000 mcg is a lot of B-12 per day. The B-12 supplement I take is 2,500 mcg and that is considered a high dose supplement. It would take 4 of these per day just to achieve 10 mg! I get that the B vitamins will pass along quickly, but 10,000 mg per day seems impossible to take. The other B-12 supplement I have is only 1,000 mcg per tab.

Art

Replied By Lily (Kelowna) on 03/24/2021
You may want to consider taking METHYLCOBLAMINE Vit.B12, sublingually. The type of B12 you take & how it is delivered to your system makes a large difference.

Replied By Clatterbuck (Beltsville, Md) on 07/10/2021
I urge caution when taking methylcobalamin. I have pernicious anemia and receive monthly shots from my doctor. I tried some oral methylcobalamin and it made me feel really awful. I felt anxious, irritable, and had horrible insomnia. Fortunately these side effects only lasted for 24 hours. I'll never take methyl anything again.

Replied By Wyandotte (Canada) on 05/01/2022
I tend to agree with you. Not all "improvements" in supplements (or anything else) are necessarily better than old fashioned remedies.

Replied By Novella (Lyons, Colorado) on 07/21/2023
For those who, like myself, have the MTHFR genetic mutation, certain substances meet to be methylated. For me, B-12 is one of them, and so is folate. It would be wise for people to see what their genetic status is. One could be wasting money on supplements that do them no good. I now use methylcobalamin and methyl folate.

Replied By Gord235 (Vancouver, British Columbia) on 12/14/2017

Hi Art,

Sorry, I meant to say B12 - 10,000mcg not mg.

Replied By Gord235 (Vancouver, British Columbia) on 01/01/2018

Update:

Since my last post I have learned that taking antibiotics can lower B12 levels and that a B12 insufficiency can be the cause of peripheral neuropathy in up to 7% of cases. I had surgery recently and was on antibiotics for two weeks. This may account for the dramatic improvement I experienced once I started taking a B12 supplement.

As a result of this new information I have returned to my regimen of taking B1- 2X100mg/daily, B6 - 2X100mg/daily, B12 - 2X5000mcg/daily as well as ALA - 4X200mg/daily and Serrapeptase - 10X120,000SU/daily. Although not completely rid of symptoms the frequency and intensity of pain has been reduced by 90%. I anticipate that I will eventually be able to reduce the number of things I am taking but feel certain that the B12 will be the last thing to go as it has been the only thing to give me overnight relief. I wish everyone well on their search for a cure.

Replied By Gord235 (Vancouver, British Columbia) on 04/10/2018

Update: Since my last post, I have stopped taking Serrapeptase as it didn't seem to be making a difference. I have now switched to CBD (cannibis oil) which which is reducing the pain level in my foot as well as eliminating the Edema swelling in my leg. I plan to continue taking Vitamin B12 (1,000 mcg/day)as it was the first thing to give me relief in the beginning. I have stopped taking Alpha-Lipoic Acid as it didn't seem that effective.

Replied By Gord235 (Vancouver, British Columbia) on 04/23/2018

Update: I made a mistake and bought ALA without the R+ and the pain in my foot returned so I have gone back to my original protocol of R+ALA plus B1, B6 and B12 vitamins. I had also cut back on the B vitamins so this might have been a contributing factor to the return of the pain. I noticed that as soon as I started back on the R+ALA and B vitamins the pain in my foot went from a 9 out of 10 to a 5 out of 10. Lesson learned - once you find something that works don't stop taking it.

Entire Thread

You must be logged in to love this post! Please sign in:

You must be logged in to follow this post! Please sign in: