Let me start by saying that I don't really endorse conducting a clinical trial with a study group of one (myself). I'm a scientist - an epidemiologist - so I love data and scientific evidence in the form of big, rigorous studies. However, we are lacking that kind of research for LDN, in a bad way.
I'm also a person with multiple sclerosis that is sick (really, really sick) of some of these MS symptoms. After years of kind of monitoring what is happening with LDN (mostly through stories on the Internet, a few articles in MS-specific publications and a couple of presentations at conferences), I've decided to try LDN and blog my results.
Please remember (I will keep reminding you), that "studies" with an enrollment of one person are actually "anecdotes," so do not take anything I say as evidence of anything except my experiences with this therapy. You may or may not have similar results. I'm not endorsing anything, just telling my story of what happened to me.
To fill you in about me, here are the basics: Diagnosed with relapsing-remitting MS in 2004. Started Copaxone June 2006 and am still on it (although Copaxone is not contraindicated for use with naltrexone - unlike the interferons - there could still be some sort of interaction, as pointed out by one astute reader; therefore, mine might be a different experience than someone only using LDN). A couple of bad relapses, none since starting Copaxone, but worsening, horrible, awful, brain-numbing MS-related fatigue, which is driving me to do something.
I got the prescription for LDN from my neuro at the end of last month. I dragged myself in there, practically weeping from frustration about my fatigue and related cognitive issues. I was ready to go back on Provigil, but (as he was standing up to go) asked, "Would you still think it was stupid for me to try LDN?" (He had turned me down two years ago.) To my surprise, he whipped out his prescription pad, wrote a script and we traded - I handed the paper with "Provigil" written on it back to him in exchange for one that read, "Low Dose Naltrexone - 3 mg."
After taking the prescription to my local drugstore (mostly to see the reaction of the pharmacists) and getting it handed back to me (I was not disappointed - raised eyebrows, whispering amongst themselves, and a brisk shake of the head), I tracked down a compounding pharmacy and ordered my drug. That will be the subject of another entry, as it turns out that there are some important considerations in getting your LDN and it is best to go to those who are familiar with using LDN for MS.
Read the full articles/blogs:
- Low Dose Naltrexone as a Treatment for Multiple Sclerosis
- Julie's Low Dose Naltrexone Journal: Days 0 and 1
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well Doc Julie, have to say I’ve got some concern about your experiment with the LDN…will be paying close attention to your journey and doing further study.
I am quite interested in the LDN as a person with long-term PPMS. What I haven’t seen yet are any posts from people who have been using LDN for longer than a month and a half. What gives, do these people not exist? Does LDN cause some kind of problem that’s not talked about?
It would be nice to not be so heat and fatigue bound, let me tell you. But I’d like to know about the folks who have been using this stuff for some time now. Hope this isn’t some kind of “Flowers for
Algernon” kind of thing where in late stage everything comes apart and we’re ready for the rest home. I’m certainly not.
Mike
Dear Mike –
Check out the comments attached to this blog specifically: Julie’s Low Dose Naltrexone Journal: Days 0 and 1. There are several people here who have been on it for a number of years. From looking at all the accounts that I have seen, it seems that the effects are sustained over a long period of time and improvement even continues (in those for whom it works, that is).
Julie,
I have been on LDN for a little less than a year. I had been on Avonex with 4 major exacerbations in one year. The following year, I backed it down to 4 less major exacerbations by blasting each one with hyperbaric oxygen. Then I started the LDN and have only had 2 minor hits in the past year. My fibromyalgia is virutally gone, my energy levels are up, and I have far more clear thinking ability…I only wish I had found this 30 years ago before so much damage was done. I am scheduled to talk with one of Humana’s Administrative Law Judges late this month–trying to get insurance to start covering this for people…this is the least expensive, least risky, most effective medication I have used. I hope you have had a similar experience.
Julie, The “way” you write makes me think that you know Jesus!
I HOPE THAT YOU DO!
For 16 years after a surgical fusion of a broken right wrist in 1995 I woke up “not knowing who I WAS”!) I had had several silent strokes during the operation. Many, many, many unpleasant symptoms plagued me, but I taught my fourth grade class for another 15 years while experiencing them.I felt that “a Mack Truck had run over me”, and the worst symptoms were (are) total body pain, and “Dead Man Walking ” Fatigue. No doctor wanted to see me. No one (including family) thought I was “genuine”; “You are faking it”, they’d say. Unbelieveable. because for 35 years I had hardly missed a day running, swimming, biking, and lifting weights.(can no longer do hese things, of course.) Retiring from teaching in 2001 I went to bed for two years, and slept for some 365 X 2 DAYS (TWO YEARS).I LIVED ON OTC STIMULANTS BEGINNING YEAR THREE, AND STILL USE THEM PRESENTLY SO I CAN CONTINUE TO HELP AROUND THE HOUSE, AND BE WITH MY THREE GRANDSONS. Also to clean house and shop. BUT I am USUALLY SICK. I RECALLED THAT I WAS SICK FROM THE DAY I WAS BORN UNTIL I STARTED WORKING OUT in Junior High. AH HA! MISSING ENDORPHINS!THIS IS MY 15TH/16th year OF BEING WEAK, FATIGUED,
AND SICK. HOPEFULLY MY LAST DAY? WHY MY LAST DAY? I HAVE RESEARCHED AND RESEARCHED ALl OF MY DISEASES AND SYNDROMES, AND TODAY I PICKED UP MY FIRST LOW DOSE NALTREXONE PRESCRIPTION!! I WILL TRY TO KEEP YOU INFORMED. AS YOU KNOW, NOT MANY (NOT ANY) DOCS KNOW OF ANYONE FOR
WHOM LDN HAS NOT WORKED! IF I’VE MISSPELLED WORDS, HAVE POOR SENTENCE STRUCTURE, ETC. IT IS BECAUSE I AM STILL “DEAD MAN WALKING,” AND MY BRAIN IS ONLY “HALF THERE” (AS YOU UNDERSTAND). I’M GLAD THAT YOU FOUND LDN, AND PRAY YOUR MS WILL KEEP RELENTING. HAVE NO ENERGY TO CORRECT THIS!
GRATEFUL THAT YOU ARE BETTER, THO I KNOW YOU NOT! I STILL WISH YOU THE BEST GOOD LUCK, AND GOD BLESS YOU, JULIE! ENDORPHINS, ENDORPHINS, ENDORPHINS! i BEAT MYSELF UP WORKING OUT TO KEEP FEELING GOOD (GREAT) OR 52 YEARS. I AM NOW 68 YEARS-OLD (GOING ON 96 OR 97?).i STUDIED LDN FOR FIVE YEARS, AND FINALLY FOUND A WILLING PHYSICIAN TO PRESCRIBE LDN! I’M PRETTY EXCITED! KEEP HELPING OTHERS WITH YOUR WRITING!
jh
smead@webtv.net (Included is the “jh” at top).