My neuro just kind of shook his head when I asked him about it, but agreed to humor me and prescribe it. I explained to him that I understood there were no studies proving LDN did anything, that maybe it was all a placebo effect..But I was feeling so bad even a placebo would have been acceptable..

I've been taking it almost 3 years (I think ), and I really like it. If I go over 4mgs though, my bladder goes into little spasms. Nothing painful, but really annoying, so I stay at 3.5. Most bladder issues have improved, I have a better overall feeling as well. For me though, the best part was being able to dream again. Sounds crazy, but that alone makes me feel better when awake..

Hi guys...

Here's the scoop. And it's big.

I spoke this morning with Dr. David Gluck who runs the naltrexone info site. He's 75 years old, though from his voice I thought he was in his mid 40s.

I can only tell you that I was blown away on his depth of kowledge on the subject.

He knows about every study being done everywhere in the world and what the results are showing. Before they are officially published.

What he told me is that LDN is being found to be helpful in all conditions related to a misbehaving imune system.

It has been helpful in conditions ranging from cancer to autism, as well as the more obvious MS and Krohn's.

Most important to me, he told me that it has been effective in stopping Progressive MS.

As a progressive sufferer, I was led to believe that there was no current treatment that had any effect on it.

Given the description of my condition and reaction to the treatment, he was adamant that he believed that my condition was over. All I would have to do is keep taking the LDN.

The only other important drug that is contraindicated for LDN users is opiods. Stopping the LDN for one day before taking opiates eliminates even the possiblity of interactions.

Bottom line folks, today I was given permission to hope for a future again. This is probably the most signifigant day of my life and the consequenses are only now just beginning to sink in.

I'm too overwhelmed at the moment to go into detail, but trust me, when I'm done, EVERY PMS Patient will know about this option. One would be crazy not to give it a try.

It should be the first line of defense for all MS patients and it is currently the ONLY line of defense for Progressives.

Please help me spread the word. Someone else please make a special post with this info.

I'll be back with a lot more later.

Cheers!

Joe

Thanks, Joe, for coming here to Neurotalk....Welcome!!

Around here, the word has already been spread and I and others try to keep it an open topic. We discuss all of the MS therapies, meds and their efficacy, here at NT.

LDN is NOT a cure, Joe, and, even though, I appreciate your enthusiasm, please don't overrate it. I am on it now for 5+ yrs. and I love what it has done for me, just as you are discovering......but, I still have MS. LDN does not go back and undo the permanent nerve damage, already done by MS.

I firmly believe that LDN does stop or, at the very least, slows the progression of MS. I say that, not because it has been proven scientifically, but, from my exerience only.

I, like you, would love all PwMS to try it for year to see if it helps them. too.

Thanks again and do come back to let us know how you are doing and Welcome to the Family.

Narcotics, codeine and the interferons (for now) are not recommended with LDN. Copaxone is apparently ok, and I so know of some who've used LDN with one of the interferons too. They are currently wrapping up a trial that included people on Beta, Rebif, and Avonex, so they should have some idea from that whether they are compatible.

LDN has been somewhat of a miracle for me over this last 3+ years, and I was in pretty bad shape when I started. I don't think it works as well for everyone, but it is pretty obvious for some of us that it is working.

I've heard people on Tysabri claim that that drug has improved their disability significantly, and I know that LDN has that affect for some people too. Does that mean that it has repaired damage . . . I don't know. Why else would a disability that someone has for 2 or 5 yrs suddenly go away, then come back within days of going off the med, then go away again when they start using it again?

It took a several months for me to realize that the shelf-life on LIQUID LDN was only 3 weeks, and that leaving it out of the fridge was not a good plan (for me). Many people who've tried to raise or lower their dosage are keenly aware what "works" for them . . . so clearly it is doing something for some of us!

I believe that I would be in much worse shape by now, if it wasn't for the LDN. I don't think this med can save us from ourselves, ie. we can still overdo things or cause harm by not treating an infection, etc. . . . but for many, I think it can improve symtoms and stabilize the disease as much as we could hope for.

Like any drug though, I don't think it works as well for all PwMS (and/or perhaps other diseases it is used off-label for).

NO doctor has the right to refuse a rx for it, if we DEMAND it.

Cherie

I decided after reading about some successes with LDN that I would pursue it. I made 2 phone calls this morning to 2 neuros and left messages. One is actually gone until next month, so I called the other and just received a call back. (That was FAST!)

He said he doesn't and won't prescribe LDN until double blind studies have proven its effectiveness in pwMS. I should also mention that he has his own Tysabri infusion clinic. Tysabri = $$$. LDN = $0.

I'm not usually a conspiracy theory-type person, but it just makes me wonder, you know?


Now what?

Have you tried your PCP? Also, you could call Skips pharmacy in Fla ( he is the best compounder of LDN, IMO) and ask him to reccommend a Doc, who may do phone appts for scripts of LDN.

http://www.skipspharmacy.com/

I live in Ohio and call a Doc in Penn, every 4 mos., have a phone appt with him and he calls or faxes my script to Skips and they mail it to me. I use my credit card with both.

I also pay for my DD's LDN script, which she gets from her PCP. She has been in total remission since starting LDN, over 3yrs ago...

There will never be the kind of trials on LDN that there have been on the drugs that can make the pharmas billions of $$. I think that is common sense, really. He knows that.

I'd be curious whether he would rx Baclofen, Ritalin, or any of the other "symptom" drugs that we use "off label" . . .? In fact, I bet they've never even double blind tested Wellbutrin on MS.

If there's a will there's a way.

Cherie

Thanks, ladies.

I will call my PCP here in town who likes to throw pills at everything. I'll bet he would prescribe it!

If not, then I will definitely use that link to Skip's Pharmacy.

Thanks so much! I'll keep you posted!

Dangit! The doc won't be back until tomorrow, so the soonest I would hear back is Tues. evening.

His nurse had never heard of it, so I told her to look it up on Wikipedia or the LDN website.

If you get your PCP to write the script, I'd still have them fax it to Skips or give it to you and you can send it to Skips and arrrange for them to send the meds to you. Not everyone knows the proper way to compound LDN.

Good Luck..