Is anyone in Southern CA taking LDN? I haven't been able to find an MD,
yet, who will prescribe LDN for PD. Would like to talk to anyone in CA
who is taking LDN.
Nick
Caregiver for Oanh, 15 yrs pd
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Old drug, new use? Naltrexone in tiny doses shows promise in
treating many diseases.
Mail Tribune March 10, 2008 <!--6:00 AM-->
When Destiny Marquez finds a good thing, she wants other people to
know about it.
These days the Medford woman has been talking to anyone who will
listen about a drug called naltrexone. It's been widely used to treat
opiate addiction, but that's not what captured her interest.
Marquez came across naltrexone while she was trying to help her
father, Bentley Lyon, who's been struggling with Parkinson's disease for
18 years. His symptoms had been increasing, and he started to decline
rapidly after suffering a stroke during surgery.
A friend had told Marquez that she'd heard some Parkinson's patients
were getting relief from their symptoms by taking extremely low doses of
naltrexone, or LDN. Marquez and her mother, Elizabeth, balked. Although
the drug had been tested and approved by the federal Food and Drug
Administration for addiction treatment, it had never been tested for
treating Parkinson's.
"We said 'No,' " Marquez recalled.
When Bentley's condition continued to deteriorate, mother and
daughter asked him to give LDN a try. By then they had done some
research on their own, and learned that the drug was gaining favor not
only among Parkinson's patients, but also as a treatment for other
diseases, including multiple sclerosis and Crohn's disease.
Marquez said her father started taking 3 mg a day late in 2004, far
less than the 50 mg that's prescribed for addiction treatment.
"It was like a miracle," she recalled.
Marquez said the spasticity in her father's left leg disappeared
over several days, and his caregiver said he stopped complaining about
back pain.
Speech is difficult for Bentley, 78, a former Marine and marathon
runner who worked as a forester and wrote two mystery novels, but he
said LDN "stopped the progression" of his symptoms. Naltrexone
apparently works by stimulating the body's own immune system, said Dr.
Ian Zagon, a professor of neural and behavioral sciences at Pennsylvania
State University.
"It's very simple," he said, "but it took a while to figure out."
Zagon said research over the past two decades indicates the body's
immune system is orchestrated by its own naturally produced internal
opioids. Large doses of naltrexone block the body's opioid receptors,
eliminating the high derived from drugs. In extremely small doses,
however, naltrexone seems to block the opioid receptors just long enough
to prompt the body's hormone system to produce more of its own natural
endorphins, which somehow encourages the immune system.
"We're working with the body's own chemistry," Zagon said. "This has
nothing to do with chemotherapy."
The drug's off-label use began to grow just as the Internet became a
major source of information exchange. There's now an LDN home page
(www.lowdosenaltrexone.org), a Wikipedia entry, and forum pages where
people exchange information and their own experiences with the drug.
Naltrexone's efficacy for Parkinson's or other autoimmune diseases
could be established by subjecting it to a new round of clinical trials,
the same rigorous, expensive, time-consuming studies that were performed
when it was approved for addiction treatment. Unfortunately, there's
little incentive for drug manufacturers to spend the money. Naltrexone
has gone generic, and lost the patent protections that would make it a
profitable drug for treating autoimmune diseases.
"It doesn't behoove the pharmaceutical companies to develop it,"
Zagon said.
As a generic drug, it's also incredibly cheap. Most patients can get
it for about $1 a day.
Zagon would like to see someone provide the funding for new clinical
trials for LDN, but in the meantime, some studies are already under way.
The National Multiple Sclerosis Society has funded a study that will
look at high- and low-dose naltrexone treatments in mice with a disease
much like multiple sclerosis, and the National Institutes of Health has
funded a phase II trial using LDN in patients with Crohn's disease.
Phase II trials involve as many as several hundred people, but they fall
short of the randomized phase III trials in which some people get the
drug and others do not.
Marquez has seen how the drug has helped her father, and she hopes
one day someone will do the research that will determine its efficacy.
"We're not the only family talking about this," she said. "We're
trying to share this information because it buys you time.
"We've got to tell the world this drug is incredible."
Naltrexone is not suitable for all patients, even in extremely low
doses, said Dr. Ian Zagon, a professor at Pennsylvania State University.
People with liver problems, for example, should not take naltrexone, and
there are other caveats.
"People (who are considering naltrexone) should be under a
physician's care," he stressed.
If a physician rejects a request for low-dose naltrexone, the
patient may want to look for another physician who may be more aware of
new research, Zagon said.
Destiny Marquez can be reached by e-mail at: [log in to unmask]
Reach reporter Bill Kettler at 776-4492 or e-mail:
[log in to unmask]
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In the body of the message put: signoff parkinsn
