Hello Everyone,

Thank you so much for all of your posts. Reading this thread from beginning to end has been really helpful in providing the information that was needed to make the decision to give LDN a try. The information has also helped to be able to discuss that choice intelligently with my PCP and the MS clinic (who contacted my neuro on my behalf).
My PCP only had info on naltrexone being used on label at 30-50mg for addictions; so he wanted to check into it before writing a script for LDN. While I waited for him to do that I also had a call in to try and get the prescription through the MS clinic and my neuro who only comes to my area every 6 months.

In the end it was my MS clinic neuro who agreed to write the script, but first I had to hear the statistics from his side on the lack of evidence supporting its use. Fair enough. I heard how the results of a double blind study that was done in 2010 revealed no improvement in the participants, as well as his personal observation that no change had been reported in the 12 or so patients that he had prescribed LDN for thus far.

It makes me wonder if those who had tried LDN in the double blind study and in his practice as well, had taken LDN following the protocol as recommended here and on the LDN information sites, because the script my neuro has written is for 4.5mg, and simply states to take it once a day. If others had taken it during the day instead of at night, I can see how the results would be less than optimal. Ah well, it just goes to show how valuable this site and doing our own research really is, so thank you again.

So with the info I've gathered from this thread and the LDN sites I will need to alter the dose a bit as the script has been written for 4.5 mg caps. I would like to start with 3 mg/night so by opening 2 of the capsules, mixing the powder up well and dividing the resulting 9 mg into 3 separate doses, that should provide 3 mg for 3 nights each time I open the capsules like that.

I haven't decided yet if I will mix the contents of the 2 caps into water or something thicker like pudding/jelly and then just take a third of it for each dose. I'm a little concerned that it might not dissolve evenly if I mix it in water or that having it sit in pudding/jelly for a couple of days might not be a good idea either.

I did speak with the pharmacist who is does the compounding and found out that he has LDN in 4.5 caps already done up and that lactose is the filler. He said that unless I am really sensitive to lactose, that it shouldn't cause any problems. I do have regional enteritis (right now in full flare with bleeding etc), but I agree with the pharmacist that such a small amount of lactose wouldn't make it worse or cause a reaction. I am not super sensitive to lactose but do react to it, so don't drink milk and avoid foods that contain it in any great quantity.
Suggestions based on your experiences in this respect are appreciated.

Taking the LDN between midnight and 3:00 am will not be a problem as I can not sleep or lie in bed for more than 2 or 3 hours at a time due to pain and spasms, then I always get up for an hour of yoga/stretching around midnight. By 1:00 am I can then go back to bed and sleep for around 3 hours so I think that I will take it around then.
Again your thoughts on this would be very much appreciated.

Sure hope that this helps, even in a small way as I am at my wits end. Neuro-muscular system and gastro-intestinal system have been in full flare for the last 2 weeks, thanks to a couple of concurrent infections (tooth and lung), and inflammation in these systems are out of control. I can't take steroids, anti-inflammatory or most pain meds because of GI/liver stuff, so have been off of all meds like that.
Baclofen hasn't been working very well either and it makes me feel depressed and suicidal at high doses, so I've cut back on that as well and only take 5-10 mg at night.

I have to drive 90 minutes to the pharmacy that has the LDN and can't do that until tomorrow, so I'll be taking the first LDN dose on Friday night.
Wish me luck.

With love, Erika