Thanks for the advice on B-12. I'm taking the cyanocobalamin via injection. I'm pretty sure that it was up over 1000 last time I was tested. I'll try the methylcobalamin too. I'm open to anything that sounds reasonable - I just hate the idea of being on heavy drugs unless absolutely necessary. The natural, conservative approach sounds best to me.

Has anyone tried the Acetyl-L-carnitine? Not sure if its supposed to work for idiopathic neuropathy........

Liz

I started taking ALC a number of years ago - - 3 gm/day, in divided doses. I had initially thought it was helpful to some degree. I then started doubting its effectiveness and sometime last year cut back to 2 gm/day. After I did not notice any changes, I had concluded that ALC had not been effective.

This year, I cut back to 1 gm/day, and my symptoms (primarily pain and burning) got worse. After upping to 2 gm/day, I returned to my previous level. So it now appears that I am getting at least some benefit. However, I am not 100% certain of this. I will probably try cutting back again later in the year and see if the previous result holds.

For anyone taking ALC, it is important to supplement with alpha lipoic acid (ALA), which is a good idea to take anyway. ALC increases mitochondrial production, which can lead to higher levels of oxidative stress. The ALA helps to reduce oxidative stress. There has been a lot of buzz about this combo and a fair bit of research.

Here is a link that can be used as a jumping off point:

http://www.pponline.co.uk/encyc/alpha-lipoic-acid.html

I lost a lot of my research links due to the Braintalk crashes - I have retrieved some of the info - but it is just too time consuming to try and recapture all of it.

As to ALC being effective for folks with idiopathic PN . . . I seem to recall that the bulk of the studies were conducted in Germany and used subjects with diabetic PN. However, most of us on the board, including myself, think that the percentage of those with "idiopathic" PN who will benefit from any particular therapeutic agent would be about the same as the percentage of those with diabetic PN.

rafi

I wonder if many people are aware of the fact that taking antibiotics in the Fluoroquinolone class can cause P.N. (and other horrible body-wide side effects) shortly after, to months after finishing the script of antibiotics. These Fluoroquinolones are: Cipro, Avelox, Levaquin, Floxcin and several others. All the F.Q. antibiotics are neurotoxic and can cause many health
problems that can last for years. Cipro gave me PN that has lasted for a long time now. nacho

Thanks for the info on ALC/ALA. I think I will try it. Does it "get along" with other supplements (b12, biotin)?

Nacho - I had heard about PN from antibiotics such as Cipro. However, I cannot attribute my problems to that - I had not taken Antibiotics for ove a year when my symptoms started (and it was amoxicillin). But I'm glad you ID'd the cause of your troubles, so you can start recovery. Thanks for the heads up.

Liz

I sent you a private message, but since you are new, didn't know if you knew to look in the right hand upper side of the window to locate the "Private Message" link to open it.

Hope you are having a good and "dry" day. (This after we nearly got washed away in Texas last night. )

Cathie

B12 gets along with other things, but it is exceptionally tricky for the body to absorb, so to get as much as possible it is best to take it alone.

rose

Liz,

I take my sublingual B12 completely separate from any other supplements. I take my ALA/ALC combo on an empty stomach, 1-2 hours before each meal. I don't know if you can get away with this type of regimen - you will have to experiment a little and see.

I would recommend starting off with a low dose, by itself, with some food or a meal. If no problems after a few days, then you might try with an empty stomach. I am sure you will find the regimen that works best for you.

I hope you will post results if you do give it a try.

rafi