LizaJane,

As Mrs. D mentioned, I have now been taking ALC for quite some time. There may be some confusion about all the different forms and name for this supplement. It is my understanding that insurance companies will no longer pay for any capsule form of the supplement because it is available over the counter - this is true whether it is acetyl-l-carnitine or the Carnitor (fumarate version). I know my insurance company told me that - not sure about all the others.

The levocarnitine I hear about in prescription form is intravenous l-carnitine, which is called levocarnitine. I wonder if your friend is taking it that way?

I have stuck to ALC for a couple of reasons. First, the positive studies that have been done have all used, to the best of my knowledge, that form. Second, it appears to be better absorbed from the GI tract. Of course, intravenous l-carnitine would be a whole other matter.

I kept increasing my dosage until I got to 3 grams/day. I took it in 3 doses, on an empty stomach. I felt that there was some initial improvement (symptomatic) but that did not continue. I now have doubts that it ever was effective. I have cut back to 2 grams/day and have not seen any changes. I will likely cut back to 1 gram/day - and down the road, I may even discontinue it for a bit.

It is very clear that ALC has had no effect whatsoever on the course of my illness. I can track the dying back process as the PN spreads further up my legs. However, I have not had significant symptomatic or functional changes during this recent progression.

rfinney