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Monday, November, 23, 2009
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What does anyone know about LDN?

tellnhelen
tellnhelen
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Mature African-American woman

Recently had acuite exacerbation..I've had other episodes but none...

09/25/09
tellnhelen
Topics:Low Dose Naltrexone

I have now read a considerable number of fantastic testimonals about low Dose Naltrexone.  There is no scientific data or clncal trials.  I've pretty much decided to try it.  Does anyone know a reason I should not go there?  What is your experience?

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Vicki
Vicki
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Writer with Progressive MS and severe Osteoporosis

I was diagnosed in 1989 after seven years of living with seemingly...

Monday, September 28, 2009

Hi tellnhelen,


What a good question! There is so much anecdotal information about LDN, and much of it quite positive, but there has been liitle or no published data about clinical trials, and clinical trials are the basis of FDA approval.  That may be changing.


The National MS Society says they get inquiries, but studies are needed to determine the safety of LDN.  And we may be seeing more LDN studies very soon. I recently read about two different studies that have recently been completed.


First, there was a small study in Italy of Primary Progresive MS that had promising results.  Only one patient continued progressing, spsticity was reduced, and concentration increased.  Their data indicated LDN is safe, but it was a small, short study. 


Second, Dr. Bruce Cree of the University of California, conducted a study with positive results on several counts.  Where the Italian study was limited to PPMS, the UCSF study found LDN benefits did not differ by type or age.  Several patients had "vivid dreams."   Dr. Cree said "To our knowledge, this is the first patient-funded clinical trial in MS."  How exciting is that!?!


So, to answer your question, the pro-LDN inormation is largely anecdotal, but the stories I have heard are positive.  Clinical data, as you said, is sparse.  Talk to your doctor.  Please let us know your decision and the results.  Good luck.

re: What does anyone know about LDN?
tellnhelen
Monday, September 28, 2009 at 06:23 PM

Thanks for responding.  I really found your post on walking aids to be quite helpful so thanks for that too.

I asked my question because I am on the verge of starting LDN.  This could be an important change for me.  I have read a lot of antidotes about LDN.  They are almost all positive. Since there is no clinical data my decision is intuitive.  I will speak to both my drs but I think they are too conservative to support an “out of the box” solution.  I expect this will be an out on a limb decision.

I will be attending the LDN2009 conference at NIH next month.  I hope to get more information before I try to get one of my doctors to write an Rx.  So for now I’m trying not to be excited at the prospects of improving.  Again thanks for what you contribute.  I do read your post.

 

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