Quote:
Originally Posted by APJH
Thanks so much for your response. I'm going to print out the list of meds you provided and take it to my doc next week. Let's see what he says.
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By all means. Just don't be surprised if he scoffs (he may or may not), but he shouldn't have any objections to your trying them. My own experience went something like this:
I got retested and a second opinion at a major medical center (which creatures do tend to be on the conservative side). The PN specialist there, who's supposed to be the best guy in the area, told me there was nothing to do, and gave me a prescription for gabapentin. Having done some homework in advance, I asked him about R-Lipoic Acid & Acetyl L Carnitine (I didn't learn of Pantothenic Acid until later) and his response was, "
Well, I've heard they're doing something with that in Europe, but we don't have any studies supporting it here. If the gabapentin doesn't work, I might mention those others to a patient if they want to [try them]." (That's actually pretty close to his exact words.) I don't know if it was just him, or that he's a cog in the AMA/Med school machine, but his response sounded pretty lame to me; Europe isn't exactly Lower Slobbovia. I
did manage to talk him into writing the prescription for a lower dose (again, from homework and previous experience).
Some of the more progressive doctors are on board, or getting on board, with these supplements; the more stodgy conservative Citadel dwellers aren't - they're quite frankly behind the times. I have no idea where your doctor may be on this; I hope he's one of the savvy ones.
My current doctor is much more open-minded/progressive, and we have a great rapport/relationship.
Links to studies and other information supporting use of these supplements can be found in the
PN Tips, Resources, Supplements & Other Treatments Sub-Forum, in the "
Sticky" threads at the top of this forum, or by searching
Google and/or
WIKIPEDIA.
I have the same philosophy as
MrsD's in that:
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When starting a new regimen for PN, it can be best to go slowly.
Now you know you are low in B12, so give this a while to work.
It might just fix everything, and you won't need much else.
Adding in RX drugs and a list of supplements may then cloud the issue. It is best to add in one thing at time, and wait a month or so to see if it works. RX drugs do not heal, they only block perception of symptoms.
The other supplements (including the B12) can lead to real healing.
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I tried B12 first (and I'm still taking it to keep my nerves fed), and after a month I began the R-Lipoic Acid (which worked very well for me). A month later I tried Acetyl l Carnitine, and after learning of it a few months after that, I added the Pantothenic Acid (B5) and had further improvement.
I mentioned the three of them together, and have no reservations about recommending trying them together, because there is so much evidence that they work in conjunction. Seperate or together is up to you.
By use of just supplements, lifestyle changes, and to a lesser extent diet, I've halted the progression of my PN and actually gotten some improvement.
http://neurotalk.psychcentral.com/post880426-220.html
Doc