Multiple Sclerosis (MS) Support Group

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brianap 04/27/2010

Today my neurologist said he would write me a perscription for LDN. He would like me to try Tsyabri, but I'm just not too sure about it. Too many issues with the injectables and the Rebif did not seem to be doing too stellar of a job. He said its up to me what I go on. I said I want to think about it and maybe stay away from the strong stuff for awhile, but in the mean time I'd like to try LDN. He said sure.
So I've heard about the lucid dreams in the beginning. And possibly flare ups of old symptoms. Is that always the case? Any other side effects? Any contraindications, mainly wine, or any OTC medications. I am not sure what dosage he will call in. Is it good to titrate it? Can I cut the pills in 1/2?
I'm really excited to try it, just want to make it smooth and get anyone else's experience. I was on Ribif most recently, been off for 6 weeks now.
Thanks.

deleted_user 04/28/2010

hi...I am taking LDN too. I started on March 12 at 1.5mg for the first 3 weeks then upped to 3mg.

I did remember my dreams more. and my calves ached for about two weeks...but that has, for the most part stopped now.

Here are two sites that should answer most all of your questions.

'www.lowdosenaltrexone.org'
'http://crystalangel6267.webs.com/myresearchonldn.htm'

best of luck!

deleted_user 04/28/2010

Have been taking LDN for about 5yrs this is my experience...

First week or so, major sleep disturbance, but also a complete end to troubles with bladder. Energy now better & remission contines (10yrs now).

No needles, few if any side effects.

Beemergirl 04/28/2010

I was on most of the CRABs for 5 years with - as you said - less than stellar results. The last one I was on was Rebif - but not for long because I couldn't tolerate it. I never even considered Tysabri....just had enough with injecting poisons into my body - that didn't seem to be helping me at all - in fact they seems to be making things worse. I started LDN on 4/5..... I started with 3.0 mg doses..... and have had no side effects to speak of.... I was worried about the dreams, but they haven't been terrible at all....they are not bad or good - I just remember them more - if that makes any sense. The only other thing to mention is that I notice my legs spasm more often than usual - but nothing excessive and I expect that to subside in time. I know you absolutely cannot take LDN with any narcotics...the other stuff I am not sure about - in general always check with your doctor before taking anything. Good luck!

brianap 04/28/2010

Also for anyone on LDN, did you have any other therapy at the same time, how long were you on it. What did it do for you. Andy changes in MRI?

My dr says there are no studies of how it might efect disease course and no one wants to spend the money on one to find out. I was wondering if everyone who has or is taken it could have their progress tracked by their neurologist and that at least might provide some "scientific data" and possibly get enough attention to warrant some funding for a study.

Thanks

deleted_user 04/28/2010

here are a couple of sites that may help you.

"http://ldn.proboards.com/index.cgi?board=forum"

This one you can read the experience of over 200 people using LDN for MS.

"http://ldndatabase.dabbledb.com/page/cancer-researchcopy/ddXxiaHj#focus:MTc5NzA1MDAwLTY0NjM4/page:dHJ1ZQ=="

LarryLDN 04/29/2010

http://www.dailystrength.org/groups/ldn is my LDN group here on DS

http://www.larrygc.com/mystory is my 7+ yr long LDN story

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