On Sat 11 Jan, Kathie Tollifson wrote:
> Ron Reiner writes:
> >
> >You are right about not knowing the side effects of Acetyl-L-Carnitine
> >(except what I've read informally).  However, I do know the side effects (at
> >least for me) of Sinemet and Permax.  I never want to go through either of
> >those again as long as I can avoid it.  My condition has steadily improved
> >since my diagnosis by taking myself off of the medications suggested by my
> >Neuros.  I stuck with Eldepryl because of its potential neuroprotective
> >effect.  Meanwhile, I am OD'ing on antioxidants (Vit E/Succinate, Lipoic
> >Acid, Pycnogenol etc) in the likely futile hopes that they too will delay
> >the progression.  I'm not sure what the side effects of these things are,
> >but I know they are far less severe than the stuff prescribed to me.
> >
> >                Ron Reiner (48 + 1.5ys)
> >
>
> I agree with this 100%. The known side effects of long term sinemet use
> (like the 40 years I may be looking forward to) are so ugly as to not be a
> good topic for discussion. Goal #2 of my personal approach to treatment is
> to reduce sinemet-use by almost any means possible, and in fact this is my
> gauge of the success of any supplement "can I take less sinemet?" Goal #1 is
> to stop whatever ongoing damage it may be possible to stop, and reducing
> sinemet figures into this also. If I was in my 60's or older, my approach to
> treatment would probably be different, but for us young'uns in this mess for
> the long haul, I'll take my chances with well-researched supplements before
> I buy the guaranteed hallucinations, dyskinesia, etc. caused by sinemet.
>
> Another anti-oxidant fiend,
>
> Kathie Tollifson
> [log in to unmask]
>
>
For  Kathie

Hello Kathie,  I have to say that I disagree profoundly with what you have
written above. I think you are scaring yourself unnecessarily:

1. What long term side effects of Sinemet do you think there are? I have
   admittedly only been using it for 17 years, but I have yet to see ANY
   side effects. Now I am making an important distinction here - I often
   suffer the adverse effects of getting the dosage wrong. but let's at least
   recognise that this difficulty in judging the dosage is due to Parkinson's
   not Sinemet. We all keep on getting worse, unfortunately, and this (the
   loss of more and more dopamine-producing cells) is the cause of our
   problem with Sinemet. Refer to my chart A for an explanation.

2. You clearly believe that whatever you do with Sinemet now will affect your
   response to Sinemet in later years. I disagree completely. I have the
   backing in this from many neurologists.   The only reason that I can
   find for this strange view is that some doctors see long term PWPs having
   problems with the dosage (as in point 1.) and assume that this due to the
   Sinemet (wrong) and then make a wild leap in logic and invent some sort
   of 'burn-out' effect, so if you use it now, it will not be available later.
   There is not the slightest evidence for this view. Don't you think that if
   it was true, pathologists would by now be reporting some sort of burn-out
   effect in the brains of people taking Sinemet. It's been in use for over
   40 years!!
3. Dyskinesias are the result of taking too much Sinemet. I am continually
   on the lookout for evidence that there might be a build-up effect if you
   regularly take excess Sinemet, but I find no evidence to support this. I
   have speculated that hallucinations, which are reported to be a side-effect
   of Sinemet, may only manifest themselves in an overdose condition. On
   the other hand, they may be the hallucinations which are quite commonly
   experienced by advanced PWPs without any help from Sinemet at all. What
   I Do know is that the nearest that I have come to an hallucination is
   the vivid dreams when I was told to take one Eldepryl before bedtime.
   That's why I gave up Eldepryl. It's bad enough being a PWP, without
   being a speed freak as well.

I would like to know how you came to have the views that you have about
Sinemet Kathie. After all, I consider myself a fairly young onset PWP as well.
( Diagnosed at age 40,  first symptoms age 33.), and although the opinions
which I have listed above, are held very strongly, my mind is not closed, and
I am always prepared to listen to opposing viewpoints. And then declare them
to be rubbish. (Strike that last sentence- that's just my sense of humour!)

Regards,
--
Brian Collins  <[log in to unmask]>