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Old 11-17-2013, 01:39 PM
ashleyk ashleyk is offline
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Join Date: Oct 2006
Location: New England
Posts: 262
15 yr Member
ashleyk ashleyk is offline
Member
 
Join Date: Oct 2006
Location: New England
Posts: 262
15 yr Member
Default Gave up on LDN

I hate to throw cold water on this but some of you may be interested in my wife's experience with LDN. I was one of the origional posters on LDN (see my posts here under ashleyk). My wife was dx with PD about 10-11 years ago at age 54, tremor dominate. My time line on all this is beginning to fade so dates are ballpark numbers. Thinking I could fix her, I began looking at drugs/treatments on line. I came across the LDN site about 10 years ago (they had initially believed she had MS). I found a Dr. S... in Pa who would write the Rx. My wife began faithfully taking an LDN capsule every night for 7 years. My belief in LDN was supported more by the research done by Dr's. Hong and Lieu at the NIH and not by the reports of people at the LDN forum.
My wife stopped taking LDN about 2-3 years ago. She said she was progressing. I was unhappy to see her stop but it's her decision to make. For the past 2 years she is about where someone with PD would be after 10 years of dx. She is on 100mg stalevo 9 a day plus 4mg neupro patch and a sinemet rescue pill when needed. She has off periods that can last for over an hour and is reluctant to eat because of this. She has lost about 30 lbs and is very thin. She has dyskinesia at the other end and can be a little pscho. She has also had a number of bad falls.
If anyone wants to follow the LDN route, you are better off using 1/2 tsp Dexthromethorphan (cough syrup), it's much cheaper and easier to get. DXM has been studied by Dr. Hong and has the same results as LDN in rats.
John
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"Thanks for this!" says:
wxxu (11-17-2013)