Okay everybody. I know what LDN is, but what little I've heard is not good. When did you decide to go on it, did you ask your doctor or did he suggest it, what symptoms does it help??????

Doxie

What negative things have you heard about LDN? I'd be interested to know your source because I've been hard pressed to find anything negative about it anywhere....hard as I've looked!! Of course, if it was coming from your Neuro that doesn't surprise me........they don't like anything that challenges their "supreme knowledge of everything neurological"....

I decided to start taking it after reading all the posts in this thread.....and no, my doctor wouldn't even listen to me about it, so I found a way to get it without his blessing. It's not a money making med for the pharmaceuticals so most Neuros won't even research it...even if their patients ask for it.

It's been a huge help to me...helps me with most all of my MS sx, especially the fatigue. I take a Provigil maybe once a week now...and only take 1/2 of a capsule whereas I was taking one or two whole capsules a day before! It's helped with my cognitive abilities, my balance, my tremors. It's just helped me so much all around.....I cannot imagine not being able to take it.

This is what I've heard through the NMSS-We have received a number of inquiries about the use of low dose naltrexone (LDN) as a treatment for multiple sclerosis. There are currently no published data from controlled clinical trials to support the use of naltrexone in MS. Further study is needed to determine if this is a safe and effective treatment for people with MS. This was in 6/08. All the other "negative" stuff have been in other MS magazines or MS books that I have. I also have heard the positive things. I'm going to talk to my neuro about in January. If she won't prescribe-any suggestions.

OH that "negative" stuff...

yeah, LDN has a big negative effect on their wallets

we've been running a live study of LDN in Humans with all sorts of diseases. MS is no longer the biggy! there's less and less of us each day... but our numbers haven't gone SMALLER, all the other disease usage has grown larger.... Crohn's, Psoriasis, Celiacs, all sorts of cancers, sarcoidosis, ALS, altzheimer's, and growing daily, AUTISM

And the AUTISM usage PROVES it's NOT placebo. Parents apply a transdermal application cream WHILE their YOUNG CHILDREN sleep. So 1. they don't know they're on anything, 2. they wouldn't know what they were on anyway.



I'm on it since 4/17/2003 for my MS, 3.0 MG

My DAD is on it since 3/28/2007, 13 days after being Given SIX months to LIVE. They put stents in his kidneys. They did chemo for 6 months, every Tuesday, and he took LDN 4.5 MG every day. He said he felt dead on Wednesdays, but by Monday's, ok. In September they did a CT scan, rushed him into the operating room, REMOVED THE STENTS, told him his tumors shrunk in half, they never saw that before on their chemo, and stopped the chemo immediately.

3 months later they declared him in remission and stable.

3 months after that, the next 6 month mark, they did another CT scan; on LDN only, his tumors shrunk in half again.

So I no longer care what anyone says. and my brother is on it since 4/07 for sarcoidosis, he was going downhill fast. he's now stable.



oh, btw, I added more to the playlist from 2008 conference... http://www.youtube.com/view_play_lis...CAC&playnext=1

Actually if you go to www.lowdosenaltrexone.org there is a lot of information on the trials. There was one trial done where the conclusion was that it was "safe". Another great site for help is www.gazorpa.com

Best of luck to you!

Well I have been on LDN about 5 1/2 weeks now and I' not feeling very well. I kind of feel yucky. Is that normal at the beginning - my body getting use to things?

It took my bod awhile to get used to it. The first week was the worst. I'm still achy, though.

I had even considered quitting, but remembered I promised myself to give it a good trial period. It's been 4 months since I started.

I do have better stamina, so that's the tradeoff for the achiness, I guess.

What kind of "yucky" are you experiencing, jnet?

Well, It feels like an increase in symptoms. I'll probably start my monthly cycle next week lol - I always get an increase in symptoms. I should keep track of when I start but I don't, I just know it probably next week. My tile floor usually feels cold, now it doesn't - it feels dull. My bablance is bad but now it's really bad. I'm not sleeping very well. But I will do like you did and give it some time. I just get nervous.

http://dailystrength.org/groups/ldn/news/view/1083940 has some info for new LDNers

you may find all your old symptoms come back for a few days in Reverse order as the body checks out old wounds to see if/what it can do

don't panic

people try to "take over" and that just complicates matters

But how long is a sufficient trial before you feel like you gave it a good shot really? (I know any answer can just be opinion since there hasn't been any in depth trials.) I tried it for 3 months in 2005 and never noticed any improvements/symptom control, but was thinking of giving it another try and have a new script for it from my neuro for 3 mg. I tried for a 1.5 mg script ,but this was my response from my neuro.

"Whether LDN works and what dose of LDN is optimal is unclear. The theory is low-dose and it is unclear whether 3 or 4.r or for that matter 1.5 is best is not known. I suggest using the 3 mg and if you have no trouble with that consider increasing. but again there is not published data that LDN works."

And my response to my neuro, which I'm still awaiting a response to:

"I think there's no published data on LDN because the money is not there to go forth with the trials. There's no money to be made off LDN even if they find out it's a good and reliable treatment for MS,Chrohn's ,etc. I find that so incredibly sad as a former nurse. I'll try the 3mg ,but if 4.5 mg would work best for me I'd need to get an entirely new prescription for it. I was trying to avoid that by getting one prescription for 1.5 mg. "


Thanks!