Finally--something that really seems to help with neuropathy!

[lpas]

Just wanted to pass this info along in case it helps someone else.

Earlier this year, when I was still in the middle of XELOX, my neuropathy really wasn't that bad. To be honest, I thought I was one of the lucky ones who was going to get by without much impact. Then about a month after my last infusion, the numbness really set in in my feet and hands. Suddenly, I was dropping things on a regular basis and stumbling on the stairs. I could barely fasten my necklaces, buttons were a challenge, and I had to swear off the iPad because the screen was too cold for my fingers. All this was in spite of the L-Glutamine I took throughout chemo, which was specifically intended to prevent neuropathy.

I was complaining about the problem at an appointment a few weeks ago, so my new doctor (ND) suggested I try Acetyl L-Carnitine to help with nerve regeneration. I took it for about a month and didn't notice much difference. Was about to give up, but he recommended I give it a little more time. Fortunately I listened because over the past 2 weeks or so I'm suddenly noticing a significant difference. The problem isn't gone, but I've definitely gotten a lot less clumsy, my handwriting has improved, and things like buttons are getting easier. I'm also using the iPad again! Of course, I can't say for sure that the improvement is a result of the L-Carnitine. Maybe I would have seen the same improvements with passage of time, but on the off chance that it really is the pills, I wanted to pass this info on to others. One of the things I like best about the approach is that it's actually intended to heal the neuropathy, as opposed to just treating the symptoms like gabapentin, Cymbalta, etc.

FYI, here's what I've been taking:

http://www.amazon.com/Vital-Nutrients-Acetyl-L-Carnitine-Health/dp/B003U581MG/ref=sr_1_82?s=hpc&ie=UTF8&qid=1449604514&sr=1-82&keywords=acetyl+l-carnitine

Per the doctor's instructions, I take 4 capsules 3x daily away from food. He said it's very important to take this at least 30 minutes before meals or 2 hours after, otherwise it doesn't work. I try to take one dose before breakfast, one before lunch and one as I start to make dinner. You can probably find a cheaper brand but Vital Nutrients is one of the few companies that submits to rigorous third-party testing to ensure a pure and standardized dose in every capsule, which is why I try to stick with them when I can. You also need be sure you're getting in the full recommended amount. He said smaller doses aren't likely to do the trick.

For those who are interested in the science, here's some research that supports the approach:

http://ar.iiarjournals.org/content/25/4/2681.long

Has anyone else had luck with this? Would be curious to hear others' experiences. In any event, hope this helps someone!

[Lisa90]

I just have a question, no input (sorry!) - do you think taking it while still on chemo will help prevent neuropathy?

I'm really glad to hear your symptoms are improving though! Awesome!

[juliej]

Lpas, I use Acetyl L-Carnitine for neuropathy, but the liquid formula not capsules. One tablespoon has 1000 mg and I take 2-3 tablespoons a day. It was suggested by my sports medicine doc (I'm a runner) to help regrow the nerve ends in my toes. Thought I'd let you know you weren't alone!

[jean60]

Interesting! I am so glad you are getting relief.

juliej, has it helped you?

Jean

[lpas]

I just have a question, no input (sorry!) - do you think taking it while still on chemo will help prevent neuropathy?

I'm really glad to hear your symptoms are improving though! Awesome!

Hi Lisa,

I didn't talk to my doctor about this since I'm off chemo for the moment, but the research article I linked seems to suggest it may also be useful as a preventative (without reducing the effectiveness of the oxi). I think it could be worth a try if your oncologist approves.

[JDinNC]

Ipas...

How interesting that you mentioned Acetyl-L Carnitine. When I got neuropathy after completing Chemo , my oncologist said it will disappear after 8 weeks. I knew this wasn't going to happen so I researched and learned about Acetyl-carnitine and Alpha Lipoic Acid for my neuropathy. I started using them for a short while before my GP put me on Gabapentin. I will admit the gabapentin helps the symptoms but does not improve the problem. I will have to dig out my bottles and try again.

Thanks for the dosage amount...I never know if I'm taking to much or not enough.
Also would you mind asking your ND about Alpha Lipoic Acid if he feels this also helps...I did read not to take this one while on Chemo.

Thanks..Jan

[cathy123]

Glad you are finding some relief!

[vilca11]

I am so glad that you have a relief! And it is so great that you posted this info! I do not have neuropathy, but so many people have - this is priceless advice for them, lpas, thank you!!!! Hugs, vilca

[Ajane]

Ipas, So glad to came across your post tonight. It's been ten weeks since my last round of Folfox and surprisingly to me this past week the peripheral neuropathy took a turn for the worse. My Oncologist recommended I try the "neuropathy cocktail" first, but said nothing about taking the L-Carnitine AWAY from food. Thanks for pointing that out!!! Fortunately, tomorrow is only day three for me so I'm not too far a long. FYI: the "cocktail" my Onc recommended was:
500mg L-Carnitine x 3 daily
100mg Lipoic Acid x 3 daily
Vitamin B complex once a day
50 mg Vitamin B-6 once a day
I was told it would take at least a month before I'd probably feel any benefit....and that was only IF I was part of the 50% who seem to find relief from the CIPN cocktail.

Seems I recall reading here or somewhere else about others having success with B6 and B complex. I'm hopeful.

[Ajane]

Ipas, so after looking at the link and seeing the dosage, am I to understand that your Doctor recommended 2000mg of the L-Carnitine three times a day? If that's right, I need to up my dosage!

[Badass]

Great thread! Thank you all so much.

Just ordered some L-Carnitine and ALA. I found an interesting discussion on Amazon regarding L-Carnitine quality and I am posting the link here for those who might be interested in "pharaceutical grade."
http://www.amazon.com/review/R2U3XNAM99 ... &store=hpc

Jane