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First to bring anyone who cares up to date:
As a result of readings on the list, I self prescribed 100 mg of CO Q10. Then
someone posted the URL of the NOAH site and there I saw that studies were
being conducted at 10 sites in the country (stage three trials) to test the
neuroprotective properties of the supplement. Think of it. Not something to
ease the symptoms but rather something to slow (maybe halt?) the progress of
the disease. Three different dosages/day were being double blind tested for
16 months: 300, 600 and 1200 mg. I immediately called my neuro and asked him
if he had any objection if I upped from my 100 mg self prescribed to 300 mg
(there's a limit to the decisions I, an engineer will take on my own
medically). He said fine. I told most of this to the list a while ago and
asked if anyone knew of an inexpensive source of the supplement. Two members
both replied with the same source, Lifewise Naturals, 1-800-643-9558 (honest,
I'm not shilling for them), where they have three levels of pricing depending
on quantity, but at any level, almost 1/2 of the cost in my local drugstore.
I bought 12 bottles of 60 each 100 mg capsules, the best price level they
have. So now I'm taking 300 mg a day and it occurs to me that while I wait
for the GM1 Ganglioside people to make up their minds if they will accept me
into their study (another neuroprotective study), I might as well see if I
can get accepted into one of the CO Q10 studies so I spoke with the people at
the study sites in both Albany, NY and Philadelphia, PA, each about
equidistant from me. As it happens I do not qualify for the study because
they want newly diagnosed pwp who take no medication, a difficult find since
the study runs for 16 months and one needs medication during that period,
they would of course be advised to start but would then have to drop out of
the study. Had a longish conversation with the RN Ph.D. at the Phila site and
we agreed that I would be an unofficial study member and fill her in from
time to time on how I was doing. This last after a discussion of possible
downsides of increasing to 1200 mg/day, of which she said none had been
reported by any sit e during the current trials and as far as she knew, none
had been reported during the phase 1 &2 trials (although one of those trials
might have been with people with Huntington's Disease). She told me they do a
blood test every three or four months checking the liver function in
specific. All in all, the conversation was much freer than I would have
anticipated and I presume that speaks to her own self-confidence. So, I went
to see my neuro this afternoon (previously scheduled appointment to discuss
the progress of my attempt to get off Sinemet by substituting Requip - but
that could be the subject of another post if anyone cares), and told him of
my conversation with Ms. Reichwein (that was the RN Ph.D.) and suggested that
I wanted to try 1200 mg. He agreed, although he suggested I titrate up 100
mg/week until I get there and he gave me an order for a blood test on a
month. So ends another long tale of learn from the list to be proactive - at
least for now!

Regards,

Paul H. Lauer (who despite everything, misses Janet and her posts very much -
please come back if you're up to it)