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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]>