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Old 11-14-2006, 07:37 PM #1
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Default LDN Study Authorized by NMSS

LDN Website Update - November 13, 2006
www.lowdosenaltrexone.org / www.ldninfo.org

Latest News as of November 2006:

Two New LDN Studies Planned at Eminent US Medical Centers

Pending institutional approvals, the year 2007 may finally see US clinical studies of LDN in
multiple sclerosis and in fibromyalgia. A crossover study at the University of California,
San Francisco, is being planned by neurological researcher Bruce Cree, MD. If approved,
some 80 patients with MS will be involved. Contributions would surely be welcome and can
be made by contacting the Clinical Studies Manager at UCSF, Dr. Elena Koryeyeva, at
415-514-2467. In addition, a post-doctoral scholar at Stanford University's Neuroimaging
and Pain Laboratory is hoping to launch a clinical study on LDN for fibromyalgia this
coming year.

Animal Research at Penn State Uses LDN and a Model of MS

The National Multiple Sclerosis Society has confirmed that the NMSS "recently awarded a
small Pilot Award to Ian Zagon [Ph.D.] at Pennsylvania State University in Hershey, PA for
the term of 09/01/2006 through 08/31/2007 in the amount of $44,000. The title of his
project is 'Role of opioid peptides and receptors in MS.' This study will be treating an
animal model of MS daily with either a high dose of naltrexone or a low dose of naltrexone
to determine whether naltrexone influences disease course." For Zagon's description of the
project, please see the linked Clinical Trials page.

Mali Plan for LDN HIV Clinical Trial Gains Support

Jaquelyn McCandless, M.D., an autism specialist who has pioneered the use of LDN for that
disorder, has taken on the mantle of U.S. Medical Consultant/Coordinator for the Mali LDN
HIV+ Study. Motivated by a special interest in the very difficult conditions of many women
and children in Africa, Dr. McCandless and Dr. Zimmerman, her husband, are trying to
raise philanthropic donations for the study. They will visit Mali from December 4th
through the 12th in order to work with the LDN Project health team there, which will
conduct the research project.

(Corresponding changes have also been made to the "Clinical Trials for LDN" and "The
Developing Nations Project" pages.)

LDN Website Editors
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Old 11-14-2006, 07:43 PM #2
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It's about time IMO...
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Old 11-15-2006, 09:53 AM #3
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I keep on asking the question as to why a researcher would be testing a drug like LDN, that's been out in the market for a couple of decades, on that poor EAE mouse??!! We know that that EAE is not the same as human MS and there aren't any safety issues with naltrexone (used at 30 x the dosage with addicts) so what does Zagon hope to learn? Was this something that the NMSS insisted on in order to get this tiny grant?

It seems that going into human trials for a medication that thousands of MS patients are already using with very few problems is the path to go.

Harry
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Old 11-15-2006, 06:12 PM #4
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I hear you Harry, but it looks like Dr. Zaigon, at Penn State, will do a comparison study between High Dose and Low Dose Naltrexone.

I really don't know what that will tell them, except to show the difference in mechanisms between the two doses??

I think some Doc from NMSS had the results of a mouse study, that showed LDN had no effect on the MS like Mouse illness. But the study was done with High Dose Naltrexone, so wasn't a fair test.

A lot of people complained about that NMSS report, so maybe that's why they are OKing the comparison study....makes sense, anyway.

I hope the mouse study shows enough to go on to the Human study, then, of just LDN/low dose naltrexone.
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Old 11-15-2006, 06:27 PM #5
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Finally..............
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Old 11-15-2006, 06:32 PM #6
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Quote:
Originally Posted by BBS1951 View Post
Finally..............
I think that it's us LDN proponents, bitching to the NMSS, that may have done it, BBS. And Yes, It's about time...past time.
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Old 11-16-2006, 07:52 PM #7
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Sally,

Quote:
I think some Doc from NMSS had the results of a mouse study, that showed LDN had no effect on the MS like Mouse illness. But the study was done with High Dose Naltrexone, so wasn't a fair test.
I hear ya but that study supposedly shows that high dose Naltrexone doesn't help a mouse which has been induced with EAE. And that tells us what?.....absolutely nothing about what LDN may do for human MS patients!!!

Quote:
I hope the mouse study shows enough to go on to the Human study, then, of just LDN/low dose naltrexone.
Why to I suspect that if LDN doesn't do anything for that poor MS mouse, the NMSS will come out and say, "see, told you...LDN doesn't help MS"! To my knowledge, there hasn't been one drug that has helped that mouse that has gone on to benefit MS patients....yet they keep on working with that mouse decade after decade. Kind of makes you understand why MS research results over the years have been pretty dismal!!

Take care.

Harry
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Old 11-18-2006, 11:02 AM #8
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Quote:
Originally Posted by Harry Z View Post
I keep on asking the question as to why a researcher would be testing a drug like LDN, that's been out in the market for a couple of decades, on that poor EAE mouse??!! We know that that EAE is not the same as human MS and there aren't any safety issues with naltrexone (used at 30 x the dosage with addicts) so what does Zagon hope to learn? Was this something that the NMSS insisted on in order to get this tiny grant?

It seems that going into human trials for a medication that thousands of MS patients are already using with very few problems is the path to go.

Harry

I agree with Harry here.

But...I've never thought that the usual type of clinical trials will prove LDN's effectiveness beyond a doubt to anyone anyway. I mean, people are still arguing about the risks vs. benefits of the CRAB meds after a gazillion dollars worth of clinical studies. Even Mayo has doubts that the benefits are worth the risks and expense for early, mild MS patients.

I've always been skeptical about the statistical evaluation of a disease that both relapses and remits on its own, both with and without drug treatment, of patients who cannot be positively diagnosed with it, and no one quite knows what it is anyway.

So, I'm not counting on these current studies, which appear to be the beginning of about 20 years' worth of piddly little fake MS mouse trials, to convince my doctors to finally prescribe LDN for me.

When I took LDN, I found the improvements subtle, gradual, and very difficult to measure with any statistical certainty. I only know that lots of stuff felt better.

My brilliant idea has always been for some enterprising entrepreneur to recognize the potential bucks in marketing LDN as a mild supplement type of thing. They should do some wide open investigative trials on a wide variety of humans to identify exactly what effects LDN has on people, sick or not.

What easily measurable symptom does LDN help the most? Fatigue? Brain fog? Mood? Bladder problems? Heat sensitivity? For me, it worked for them all. Pick the one it does best, get it approved for that symptom, market it to the general public, and it will be available to us all, just like other inexpensive supplements.

If LDN becomes more readily available, the effects on MS progression -- if indeed there are some -- will become obvious enough to warrant a real trial.

The situation now is that, even if they finally come up with a few tiny trials that show promise, there's no way LDN will ever be proven to the extent of the big money meds and allowed to compete as an "MS med" against their marketing forces.

I personally didn't notice that LDN had any effect on my MS progression either good or bad, although I also think that progression is nigh onto impossible to measure anyway. But I do think LDN at least has the potential to save us from taking so many symptom meds.

My other idea is to convince our doctors to try a little LDN for awhile so they can see how harmless it is and feel a bit of the benefits for themselves. Hahahahaha...
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I got an "instant" dx of both MS & HNPP in July, 2003, but had likely had MS for at least 30 years by then. I've never taken any prescription meds for either MS or MS symptoms (except 1 yr on LDN).
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Old 11-18-2006, 05:20 PM #9
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I like the way you think, Susan.
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Old 11-19-2006, 12:38 PM #10
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It's good that we can finally say "the NMSS may be recognizing the potential of this drug". Other then that, I really don't anticipate anything coming out of this meager token that's been awarded.

It doesn't seem to matter that the mainstream drugs we have to choose from are fairly ineffective; many people and doctors hang their hats on the fact that they have at least been trialed/scientifically proven (to be mostly ineffective).

It probably just comes down to "hope", in many cases, and we all need that!

Every drug or treatment option we have available to us, has the potential to be "the one" that offers us (as individuals) some advantage though. So, as long as the potential risk doesn't outweigh the benefits, and the cost isn't too silly, they are worth trying IMHO; trialed or not.

Cherie
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