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Tuesday, August 19, 2008

Multiple Sclerosis And Low Dose Naltrexone (LDN), Fact Or Fiction?

The internet can be a blessing to someone in my circumstances, giving an escape from the daily routine. It can also be so damn confusing it makes me want to cry. Low Dose Naltrexone, or LDN, is one of those things I read about. I have gotten stone walled on it every time I have brought it up. The one neuro even told me that if I gathered info for him, he would review it and get back to me. He had never heard of it! Now there is something that will make you want to cry. LDN is a drug used to block the effects of opiates and heroin. It then produces blah, blah, blah. I can't seem to find my neurology degree, or my bong, so I'm looking at this one on pure faith!

I read the stories about people who take LDN and on the 3rd day are MS free. They don't need canes, walkers, or zip lines to navigate their own homes. I see of 400 patients in a study, only 2 have relapses, and they are so minor it wasn't worth mentioning them. You have to have the drug made up special because of the dose. It was given at 50 mg for heroin addicts and I think MS'ers use either a 3 or 5 mg dose. Where are the clinical trials? Why isn't this a first option? Why don't some neuro's even know what it is? Don't tell me it's about money. Please don't say it's not worth doing trials for a 30 or 40 year old drug.

There are also websites out there that say LDN is a sham, a rip off, snake oil. That's cool, everyone is entitled to their opinion. I think I'd like to find out for myself. I took the neuro's advice with all the other medical advances, this time it's my turn. The gallons of steroids I've ingested didn't fix the problem, only lessened it for a brief time. My kids got to watch me hook up my IV bags on my very own IV pole, watch me give myself injections, why not take a pill before I go to bed. Do I continue with the Rebif injections, or should I stop them before I start? After I start? Never? I sure hope it isn't that last one.

My next step it putting together an information packet to take to my primary care doc in hopes she is more receptive to the path less traveled. We live about 3 miles from on of the few pharmacies that have pharmacists that do more than count out pills, they actually mix them. Why is this so complicated? Why isn't there an expert in my insurance plan? Will this be an Internet experience to look back on fondly, or one that will make me want to cry each time I think about it? Here's to hoping that in a few months you don't hear from me anymore, I don't have time to sit around playing on the computer, life is calling me again!


Anonymous said...

Hi there. Your blog popped up in my Google news alert! There are some very knowledgeable LDN users over on the MS board at NeuroTalk Communities forum. Here is the link to the MS board:

There is a sticky thread about LDN there and I'm sure that they'll be happy to answer any questions you have. Good luck!

awb said...

Thanks, I shall check them out.