On Sat, 6 Mar 1999 20:42:57 EST John Gooch <[log in to unmask]> writes:
>Does anyone want to say anything or any praises for this?
>I am still trying to find out what it is and how it works for PD.

John,
        I sent the following to the list in January. Hope you and others find
it of some help...
Judith
-----
Queuing up hope for Q-10 | Parkinson's study looks at coenzyme to retard
disease

Cheryl Clark -- STAFF WRITER
18-Jan-1999

A dietary supplement sold in health food stores is the subject of a $2
million federal grant
to a UCSD researcher who thinks high doses of a purified form of the
substance might
keep patients in the early stages of Parkinson’s disease from getting a
lot worse.
        "Our hope is that we might be able to slow the progression, and
someone who had
the disease for 10 years would function as if they'd only had it for
five," said Dr. Clifford Shults, UCSD professor of neurosciences and
principal investigator of
the study.  "Their mobility would be better, and their response to
medication better, too."
        The supplement, Coenzyme Q-10, occurs naturally in mitochondria,
the
so-called power plants that generate energy in cells.
        For more than 15 years, small doses have been synthesized in
pill form
and sold over the counter in health food stores and drugstores as an
anti-oxidant
and free-radical fighter, in hope that it can fight heart disease and
cancer, although no
studies have proved that it can.
        A bottle of 120 tablets of 30 milligrams each can cost between
$15 and $40, and
officials say its sales have slowly grown over the years.
        In patients with Parkinson’s disease, mitochondrial function is
impaired, leading
to the decline and death of nerve cells that produce dopamine, a
neurotransmitter lacking
in patients with Parkinson's disease, researchers have found.  Lack of
dopamine leads to
the tremors and stiffness that characterize Parkinson's.
        In 1997, Shults and fellow UCSD neuroscientist Dr. Richard Haas,
along with Dr.
Flint Beal, chief of neurology at Cornell University School of Medicine,
measured levels
of Coenzyme Q-10 in Parkinson's patients and found them significantly
lower than levels
in non-patients of the same age and sex.
        Beal and Shults then tried to see if they could mimic the
disease in mice. In the
1980s, researchers discovered that MPTP, an ingredient in an intravenous
drug used by
addicts, caused the same tremors and rigidity seen in Parkinson's
disease.  MPTP also
was found to be toxic to dopamine-producing nerve cells.
        First, Shults and Beal gave groups of mice either a standard
diet or a diet laced
with Coenzyme Q-10, then followed that with MPTP. They discovered that
mice fed Coenzyme Q-10 had significantly greater levels of dopamine than
mice that were fed the standard diet alone.
        If they could duplicate those results in humans with Parkinson's
disease, they just
might be onto something, the researchers thought.
        The question would be whether Parkinson's patients -- who
sometimes have
trouble absorbing medications -- could ingest enough of the high dose
substance to make
a difference.
        Shults gave a variety of high dose Coenzyme Q-10 to 15
Parkinson's patients and
found no significant side effects except minor urinary changes.  What is
more, the
researchers found comparable increases of the substance in the patients'
blood and an
increase in mitochondrial activity, the part governed by Coenzyme Q-10.
        In late 1997, Shults applied to the National Institute of
Neurological Disorders
and Stroke in Bethesda, Md., the arm of the federal government that
allocates research
money for Parkinson's disease.  Last fall, he received $2 million and
the go-ahead to
recruit 80 early stage Parkinson's patients for a three-year study of
Coenzyme Q-10.
        Shults, who directs San Diego's National Parkinson Foundation
Center of Excellence at University of California San Diego, said
considerable progress has been made in Parkinson's treatment.
Medications such as levodopa can control some of the symptoms, such as
the resting tremors, slowness and rigidity.  A surgical procedure called
pallidotomy shows promise for people suffering from severe forms of the
disease.
        But nothing has been found to prevent further deterioration of
nerve cells, Shults
said.
        "The goal we've really started pursuing is to try to develop
protective treatments,"
Shults said.  "Our study is the first federally sponsored one to look at
this compound in a
systematic fashion."
        Dr. Dee Silver, a La Jolla neurologist and medical director of
the Parkinson's
Disease Information and Referral Center of San Diego County, applauded
the effort,
saying, "There's a lot of basic investigative evidence that this drug
has a possibility of
reducing progression."
        As word spreads among patients, some are already heading to the
stores to buy
the substance, Shults and Silver said.
        But in Shults' study, the doses will be 10 to 40 times the
amount in most
store-bought tablets, "much larger than one might be able to easily
afford," Shults said.
And the amount of Coenzyme Q-10 in the experimental doses, which Silver
and others
said can vary in the store-bought products, will be much more tightly
controlled.
        Those enrolled will receive one of three doses, 300, 600 or
1,200 milligrams per
day, or a placebo.  They will be recruited at centers in Los Angeles;
Chicago;
Philadelphia; Baltimore; Atlanta; Portland, Ore.; St. Louis; Rochester,
N.Y.; Kansas City,
Mo.; Albany, N.Y.; West Bloomfield, Mich.; and Charlottesville, Va.
        Only patients with early stage Parkinson's will be enrolled to
avoid interference
with other drugs and cell deterioration in patients with severe diseases
that could confuse
results.
        Shults said patients will not be recruited in San Diego, but San
Diegans may be
able to participate through the University of Southern California in Los
Angeles.
        Shults and others worry that because only 80 patients are being
recruited and
because of the potential for "holistic hype" on the Internet, other
patients will rush to buy the drug, washing down hundreds of pills a
day.
        "I've gotten zillions of calls from people about this, wanting
to know if it works,"
said Gerry Graf, Costco's five-state regional pharmacy supervisor, who
heard Coenzyme
Q-10 discussed on a recent radio show about Parkinson's disease.
        "People need to understand that we don't know yet if this works
or has side effects
in these high doses," Graf said.  "We really have no idea.  Instead of
doing a little study
on their own, people could be killing themselves."
        Shults echoed Graf's concern.
        Kimberly Seidman, West Coast director of the National Parkinson
Foundation in
Los Angeles, said patients are calling her asking questions about
Coenzyme Q-10.
        "They ask if they should take it, and my response is very
clearly that there's no
evidence that it can make a significant difference.  We always tell
people to talk with
their doctors first."
        Seidman, whose late father had Parkinson's disease, has been
taking small doses
of Coenzyme Q-10 herself as a precaution since she met a San Fernando
Valley physician
and Parkinson's patient who took the compound after reading that it
might help his heart
murmurs.
        "He was pretty sick and getting ready to retire.  His gait was
slow and he was
stooped over," and other symptoms of Parkinson's were starting to
worsen, she said.
"After he was on Coenzyme Q-10 for six months, he dramatically
improved."
        While he never regained full function, he maintained an
improvement for several
years, she said.
        Seidman lost touch with him.  But she is delighted that Coenzyme
Q-10 is being
subjected to a scientific trial.

Copyright Union-Tribune Publishing Co
--
Judith Richards, London, Ontario, Canada
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