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Brain Collins writes:


>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.

Brian, I have a couple of friends who were very young onset (early 20's) and
have been using levadopa in its various formulas for over  20 years. I
wholeheartedly agree with you that these men have consistently overmedicated
themselves, both because they have been over-prescribed by their MD's, and
because as the PD progressed the fear of immobility stole reason from them.
Both are in very deteriorated mental states, too unpleasant to discuss. I
believe that the extremely advanced PD is the root cause of the deteriorated
mental ability, and that the consistent high level of levadopa has produced
a sort of "sinemet psychosis". I can not prove this of course, but I wonder
if things would be different if either had used any products to protect
themselves from free radical damage, or to nourish the environment in the
brain, or to increase function by means other than sinemet.

Snip, snip...

>2. You clearly believe that whatever you do with Sinemet now will affect your
>   response to Sinemet in later years.

I believe the reason for decreased response to sinemet in later years is
because of diminished ability to respond, in other words, fewer cells
remaining in the substantia nigra. That is why preserving the health of my
substantia nigra, the entire brain in fact, is my first treatment priority.

Snip,snip...
>
>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.

I had dyskinesia the first time I took sinemet. I have been consistently
over-prescribed. My first neuro, a prominent PD specialist argued me to the
mat on the breaking of the CR debate, until I showed up in his office
dyskinesia-free for the first time. He asked how I had accomplished that, I
said "I break the CR". Re: build-up. I had a continuous problem with
dystonia in my legs in the late afternoon, my second neuro, who actually
listens to her patients, suggested that I might be getting what she called
"CR build-up" over the course of the day, and suggested that I use CR in the
AM, and switch to regulars at noon to be more accurate in dosing...this
solved the problem immediately. That is the only build-up effect I have ever
heard of.

Snip,snip...


>   That's why I gave up Eldepryl. It's bad enough being a PWP, without
>   being a speed freak as well.
>
>
I love eldepryl! I was applying for the GDNF trials in Philadelphia and was
turned down because I was using eldepryl...the interviewer said that most of
their subjects who were using Eldepryl dropped out of the study when the
drug finally washed out of them because they felt so much worse. I'm with
Dennis Greene on this one, give me liberty and give me Eldepryl!!

BTW, I have used sinemet for 2 years now, I would not consider giving it up
completely unless something else came along that could enhance my ability to
move with similar effectiveness. But I now use half as much as last year, no
dyskinesia, and that wretched sleep disorder is almost completely gone. I
sleep 7-8 hours most nights now. I firmly believe that sinemet is the big
culprit in the sleep disorder.

Be well,

Kathie Tollifson
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