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>I for one, am desperate for NADH info, as I feel others are, and would
>gladly wade through the "sub-group's" postings, to benefit from your
>research and debates while waiting for your group's conclusions.
 
 
 
>Btw  As for the "NADH vs Q1 vs Q10 confusion factor."
>Couldn't any member of your "sub-group" look into a Bio Chem book,  find
>the answer and post it for us?  It seems to me that facts are confused not
>theories.  When my daughter looked into her sister's Bio Chem book we found
>that co Q10 is ubiquinone and that NADH, coenzyme 1, is Nicotmamide adenine
>dinucleotide.  I believe they are different enzymes although both are used
>to produce energy in our bodies.
 
 
"Well, let me say this about that" as Richard Nixon would say. First off,
lest there remains any doubt, CoQ10 and NADH are two different substances,
although both seem to play a role in energy production. CoQ10 is readily
available in health food stores, and although pretty expensive compared to
most supplements, cheap compared to NADH. Studies have shown CoQ10 to be
effective in the battle against heart disease and cancer. The recent
bulletin from the Life Extension Foundation cites a 1995 study in
"Experimental Neurology" called "CoQ10 Protects Brain Cells Against
Neurotoxin Induced Injury  That Causes Parkinson's Disease". I haven't
located that study yet, so I can't speak of its content. Sure sounds like
good news though!
 
NADH is the tongue-twisting enzyme referred to above, and there is very
little documented study of its effect on PD except for the Birkmayer study,
which was very impressive. My experience with NADH has run the gamut from
hate and dread to extolling its virtues to all who will listen. I believe
the most difficult aspect of NADH is that we have little guidance about how
to use it or even how much to take. My first trial was a flop; I dove in
with the exhilaration of a fool, determined to get better fast. I used too
much too quick and suffered most of the side effects available to me. It was
torture. Even in that failure I realized that NADH somehow complemented the
sinemet, and probably would allow me to cut back. Trial #2 wasn't much
better, as I already had a fear of sleep deprivation caused by NADH (I
thought), so I gave up at the first sign of increased sleep disorder.
 
Trial #3 has borne many desirable benefits, and I am now in my third month
of continuous use, and consider NADH one my anti-parkinsonian drugs. I
started this time VERY slowly (1/2 tab a day) for more than a week, which
had little effect. I increased to one tab, went into the insomnia thing, but
hung in there. By paying careful attention to the interaction of NADH and
sinemet, I have adjusted my sinemet down by 100 to 150 mg a day, which is a
good % since I was only using 400mg per day. At some point, my whole drug
experience changed, I started to sleep better than ever, my dyskenesia
virtually DISAPPEARED. My restless legs diminished to almost nothing.
 
I have been stable using 1 1/2 NADH per day, plus 250+ mg sinemet. I dropped
one parlodel, since the NADH seems to extend the sinemet, which is what I
use parlodel for. I have thought of eliminating parlodel, but I have read
that parlodel actually has a neuro-protective effect, so I will think a
while longer. I have cut back from 2 Eldypryl a day to one every other day.
The amazing thing is, when I prepare my drugs for the day, I don't need a
suitcase any more.
 
I urge anyone who is going to try NADH to remember that you have the rest of
your life to adjust to this drug. Just as you did with any of your standard
meds, you will have to experiment with what dose works for you. Go slow.
There seems to be a pretty wide window of tolerance, from my 1 1/2 per day
to Jeff Carper's amazing 4 per day. I now have two friends from my Young
Onset group who are using NADH. One has been on for about a month, up to two
a day, and has been very happy with the results. The other just started a
week ago, but has already cut back his sinemet by about 25%. He says he is
not nearly as confused as he was last week. (He's not)
 
Placebo? Who cares? After the flurry of interest in a self-run double blind
study, I concluded that I didn't want to know if it's a placebo effect. I
felt so much better, I wasn't ready to jeporadize the benefits. I will tell
you that when I accidently use too much sinemet (I have to break the pills
so it is hard to exactly regulate my dose), and get into the dyskinetic
million mile per hour thing again, I am so grateful that I hung in there
with the NADH. As Joyce says, "What a way to live"
 
I hope this documents my NADH testimony...sorry it's so long, but we have
established that everyone has a delete button. If anyone wants more info, ask.
 
Kathie Tollifson
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