Thursday, November 09, 2006

Low Dose Naltrexone

I have been diagnosed with Multiple Sclerosis for 10 years now. I am guessing I had it much earlier. The first time I felt symptoms was in the late 80's. I went to the doctor with numbness in my left arm and I mentioned I was dropping things. He said I had carpal tunnel syndrome and told me to take Advil around the clock for 4 weeks and come back to be checked. Did I mention he did a test on me where you close your eyes and stand erect. As I kept falling to the left he said, "now concentrate, if you can't do this then something serious is wrong". I kept falling and then I said "well maybe I can't do it because I had taken allergy medication this morning". Needless to say he didn't do any further tests and I came back in 4 weeks. Of coarse the symptoms were better, so everyone concluded I had carpal tunnel syndrome. The problem persisted on and off for years. I thought I was having problems because I loved to cross stitch and felt maybe I was just over doing it. Then in 1996 my mom died. It was an extremely stressful time. A couple of months after her death, I can still remember driving in our van and wondering why I couldn't not see out of my left eye. I thought I had injured it somehow. At the time we had an HMO and I had to go to my family doctor first. He didn't see anything wrong with the eye. He sent me to an ophthalmologist who ran several tests. After 3 hours and a consult with another doctor he came in and told me there was nothing he could do for me and that I had to go to a neurologist. I said "why"? He said for the possibility of demylenization disease, then he promptly left the office. I sat there stunned and wondered what that meant. As I was standing in line to pay for the office visit a nurse came up to me and said do you have any questions? I said "well...yes, what is demylenization disease"? She said "MS". I can still remember the feeling I felt. I was so horrified. All I could think of was Annette Funicello who was recently diagnosed with Multiple Sclerosis. Then I started to be worried that I would be blind in my left eye.

To catch us up to what the post is suppose to be about I am going to skip ahead. I was diagnosed with definite relapsing-remitting multiple sclerosis. At this time, in our city they were doing nothing for multiple sclerosis. As time went by and I became educated I began to understand that the standard treatment for MS was one of the "ABC" drugs. One year, about 4 years later, I had 3 pretty major episodes. I went to a new neurologist who did all the standard tests. I had more spots on my brain and was definitely coming out of an episode. So she put me on Betaseron. This is a every-other day injectable interferon. I was told that I needed to take this medication to slow the progression of the disease and to avoid a wheel chair. Of coarse I knew this was standard treatment so I agreed to take it. I mean what other option did I have? For the first 10 months I had horrible side effects. Flu like symptoms, which means fever, chills aches and pain. I was instructed to take it at night and take Tylenol to help with the symptoms. After 10 months I was able to go to the standard dose, up until this time I was on a 1/2 dose. Things went along for about 5 years but I steadily became worse. I didn't have any major episodes, but I did have some mild ones. I had about 6 weeks where I could not write very well, I was declining in my ability to walk and be active. I was visibly discouraged and my neurologist wanted to give me anti-depressants. I tried to tell her that I was not having trouble because I was depressed that I was depressed because I could not do the things I wanted to do. About 6 months ago I had another bought with optic neuritis, this time it was my right eye. I had to go to the hospital for 4 days and have an IV Methylprednisolone drip over 6 hours each day. This seemed to help as it cleared faster than the first attack I had over 10 years earlier. But what was interesting was how wonderful I felt after the treatment. I thought it was because of the steroid, but have come to think it was because I stopped the Betaseron for about 6 days. After I began the Betaseron again my side effects came back with a vengeance. I felt like I was trying to walk through water all the time. My limbs were heavy, I was always running a fever, I was gaining weight-all in all I felt terrible. I was even thinking about a wheelchair. Then I went in to my family doctor because I had another case of bronchitis (2 time in just a few months). He asked me if I ever thought some of my symptoms and sicknesses were due to the Interferon I was on. Then he told me about a drug he was told about from another doctor, Low Dose Naltresone. He gave me a DVD and some information. Honestly I thought...."here we go another weird CURE for MS". I took the information and went home and watched the DVD.

Needless to say I was astounded. Astounded that there was a drug out there that no one talked about. One that had vertously no side effects and really seems to work! I don't want to get into the political reasons why drug companies may not want us to know about this, but I will just say that Betaseron cost around $1,600 a month and LDN cost about $30.00 a month. Anyway, I took the information to my neurologist, but I could tell she didn't want to talk to me about it, I believe it is because it is not a recongized treatment for MS by the FDA. Anyway, after a week or so of agnozing about my options I decided to stop the Betaseron and went to my family doctor to get the LDN prescribed. I can't believe the difference in my quality of life. First of all almost immediately upon stopping the Betaseron I could walk. I had no muscle pain anymore. I could get up out of a chair without pushing myself up. I could do more physical work without having to rest. My general countance is happier. My fevers stopped and get this....after 2 weeks off the Betaseron I lost 25 pounds (without even trying, doing NOTHING different) Everyone notices how good I look and feel. I was off the Betaseron for about 10 days before I received my LDN in the mail. You see you have to have it prepared for you from a compounding pharmancy. I use Skip's in Florida. They sent the LDN and even a goodie bag of candy! I started taking it (a 3 MG dose) a week ago. I really can't believe the difference in my general well being. LDN doesn't cure MS but it claims to stop the progression. I am being causously optamistic. All I know is that 3 weeks ago I couldn't walk without pain and I was considering buying a wheel chair. I was running a fever on a regular basis. All I could think about was how bad I felt and how I didn't want to feel like this the rest of my life.

One purpose for this blog is to share my experience. If you have any automunine disease, please look into LDN. You have nothing to loose. There are no side effects, except possible sleep disturbance in the first couple of weeks. I haven't even had that. LDN is a real treatment option that thousands around the world have been using. You don't have to struggle with the side effects of the traditional drugs. If you would like to read a book that has a great testimonial in it read "Up The Creek With A Paddle" by Mary Anne Boyle Bradley.

I don't know if anyone will read this or if it will be lost in cyber-space, but I am trying to tell people my story in hopes it will help. Feel free to e-mail me if you have any questions or want more detailed information.

Have a great day!


Debbie said...

Hi Pam,

It's been a few months now since you posted this and I'm wondering how this drug is working for you now. I've just started on betaseron myself with yesterday being the 1st day on the full dose injection. Not feeling too great today.


Tamara said...

I was diagnosed with MS about 1 1/2 yrs. ago. I have been taking Betaseron. I recently stopped taking it, and already feel better. I had been having dark/depressing thoughts in the last 6 months. How is the LDN working for you now? Any side effects so far?

Anonymous said...


My name is tracey. Just started LDN
2 days ago. After 1st pill next morning could feel my feet. First time to really feel them in about 5 years. Was staying week and worn out. I was diagnosed in 2000. Went through Avonex a few years. Then started on some products through They were natural.
Did very well. Was very strict on what you ate, etc. etc.
Happen as always to be checking for cures or whatever is new out there and ran upon the LDN. Had my
2nd pill last night. Already have more energy. Still get worn out around 3:00 pm. Am still working and raising 2 of 4 children. Wish I could live without stress that seems to work me over more than anything. Cannot wait till end of month and see what happens. Thanks for letting me share. Tracey