If you Doc prescribes it, it could be paid by your insurance...Some do, some don't because of the off lable use.

It took three years of pestering my MS doctor to get him to give me a script for LDN. Persistence is a GOOD thing.

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

Hi Erika, welcome to the club. Much luck is wished to you, that LDN helps you as much as it has helped me and even more.. It's not a cure, but has helped me to feel better and stronger, for the last 10 years.

I agree, your Doc is not following protocol and you are wise to note that. My Pharma(Skips) uses Avicel as a filler, because Lactose was causing allergic reactions in some. Lactose is the orig filler recommended by Dr Bahari, but not all can take it. Just be sure it is a fast release filler!!

Don't expect too much and give the LDN at least 6mos to a year before giving up on it. I couldn't live without it, now that I know how it has kept my disease so stable for the 10 years I've been on it, after giving up on ABCRs.

It's simple to me how it works...I raises my Endorphines (Nature's pain killers and energy boosters) and I just feel better. At first, like everyone else, expected more and was disapointed that I wasn't cured. I did feel a bit stronger and healthier though, so I stuck with it. It has never failed me, IMHO!

Good luck!!!

Thanks Sally. I really appreciate your posts in this thread as you seem to have the most experience with LDN.
Last night was the first dose of the LDN. I emptied two of the 4.5 mg capsules onto a plate, mixed it all together and then mixed it with exactly 3 tablespoons of yogurt. I took one tablespoon full of the mixture at midnight.
Nothing to report as to changes but I didn't expect any so early on. It was a restless night as per usual and the body was not happy following the 90 minute drive to the pharmacy, a bit of shopping and then the 90 minute drive back again. So it goes with living in a small town. A lot of things are only available in the nearest city which is 90 minutes away.

What I did find interesting was that even the pharmacist didn't seem to know that LDN needs to be taken at night or in the wee hours of the morning for best results. His advice was to take it once/day, and he only off-handedly mentioned that most people take it at night. Maybe at some point someone will do a double blind study starting with a 3mg dose, working up to 4.5 and assuring that it is taken between midnight and 3:00am.
Now the findings of that sort of a study might prove interesting, wouldn't they?

With love, Erika

My current neuro who prescribes LDN often told me it didn't matter day or night. I mentioned what everyone says about last thing before sleep here & why, he then said he doubts it and also doubts LDN does anything.

I didn't last a week cause I exercise too much to not get a good nights sleep.
I'll try it again, with lunch meds. The dreams were fun for the most part.

Hello EddieF

My neuro basically said the same thing, but having read through this thread and also checking out the links to LDN before hand, his response to my request for it as well as the instructions on the bottle (4.5mg take once/day), had me thinking that if the neuro is prescribing the starting dose and how to take LDN incorrectly, then the expected results can't really be expected, can they?
I chose to go with the suggestions made on this thread by those who had on the ground experience with LDN.

With all due respect, the way in which you are/were planning to take it might not be the best, as it does not take advantage of when the endorphin release occurs, and so the dose may miss influencing the biofeedback loops for increasing over all production and also for increasing the number of receptor sites to endorphin on the cells.
If I understand the LDN info correctly, this happens during sleep and usually somewhere in the middle of the sleep period.

Further, I do know that the endorphin release that occurs as a result of exercise or other stress requires extremes of stimulus (metabolic imbalance due to muscle fatigue, pain, severe emotions like fear, love, rage etc), for the endorphin to be released in appreciable amounts. For sure some is released during 'regular workouts' but it is at the point when muscle fatigue moves into failure that most of the endorphin is released; and thus functions to allow the tissue to keep on working. In addition, at those times, the endorphin is generally short lived as it requires the stimulus to continue for its levels to remain high.
At the same time, adrenalin is also present during extreme stimulus and so physiology in general is quite different than when the body is asleep; as in 'fight & flight' (sympathetic nervous system dominance) as opposed to 'rest & restorative' (parasympathetic nervous system dominance).

I'm not sure on this but I suspect that when the body is under the influence of adrenalin and is thus in the "fight or flight" state, it may not have the same capacity to alter its basic functions at that time with respect to endorphic adaptations.
This follows along the same lines as the reasoning behind ensuring adequate rest periods are taken between workouts. It is known that the rest period is required for exercise to be beneficial; for if that were not the case, one who chose to exercise continuously would just get stronger and more efficient as they went along...and that is not the case in practice.
The way it works is this: the stress of exercise creates an imbalance (muscle fatigue and possibly inflammation), and that is compensated for by increasing the size and efficiency of muscle tissue; but that adaptation happens during the resting phase, and also occurs mostly during sleep when growth hormone levels and prostaglandins 1 & 3 (body's own alkalizing anti-inflammatory agents), are highest.

I wanted to share these thoughts on LDN because I'd hate for anyone to miss out on the potential benefits of it, simply because the suggested protocol wasn't followed.
With respect to the sleep thing, yeah...I don't know. Mine was/is so messed up that I don't think that it could have gotten much worse by taking LDN or anything else for that matter. I've always had good and lucid dreams; so haven't noticed a difference there.

With love, Erika

I've been meaning to get back on this thread and share the experiences that I've had with respect to starting on LDN 1 day short of 2 weeks ago, but I thought that it would be best to give it at least a 2 week trial first though.

I'm happy to report that the experience thus far has been a very positive one. It did take a little experimentation to find my "sweet spot" with respect to timing of the LDN dose; and in the end it turns out that for me, around midnight is the best.

By then I've had around 2 hours of actual sleep and then around 1:00 I lay back down and at least try to get another 3 or 4 hours in. This usually occurs in 30-60 minute stints, but I do get it now where before LDN, it wasn't always the case...even with Baclofen to control the spasms.

There are still nights when I hardly sleep at all, but thinking back, these were also the nights that I took the LDN earlier or later than midnight. So even if it is in a slight way, I think that the LDN has improved the quality and the quantity of sleep that I get.

Here are some of the things that I've noticed:

- fewer and less severe periods of cog-fog (this is a HUGE thing for me, and I'd stay on it just for that reason)

- less fatigue during the day, but when it does hit, OH Boy...It's like it has been saved up or something. Good that this occurs at the end of the day when it does occur, as I just take advantage of it and get some extra sleep in. Doing that does seem to mess up my already messed up sleep cycle-times though. I figure that it will sort itself out so like always, I just take one day and night at a time

- less need for recovery after physical activity and I can go for longer periods without having to rest

- less neurological stuff in general; shooting pain, buzzing, etc. although I have had a few days in the past 2 weeks when my feet and lower legs went numb. I have no idea if I was heading into a TM flare, or if it was just a carry over from past ones or what. I also don't know if LDN interfered with the progress of it in anyway. Generally, when I get that symptom it does last for longer than it did though.

- less hair falling out of my already scantily tressed pumpkin (LOL)

- more balance in general but I'm still unsteady when the fatigue hits and maybe a little more so

- more sensitivity of the teeth; I have no idea why that would be, as my oral hygiene, diet etc has not changed. It's another wait and see thing.

- more and longer periods of clearer vision; but also more extremes in vision; either really good or really bad

- more muscle twitching; its not painful, just annoying

- more perspiration (Ok for your decorum sensibilities, Sally? -LOL), and more need for deodorant (Sorry...there's no nicer way to say it than I can think of right now.)

That's about it, but I'm looking forward to seeing how increasing the dose goes when the time comes. I know that I'm not ready to do that yet though.
I did try on three occasions to go with 4.5mg (because I was either too uncoordinated to prepare the 3 of the 3 mg dose from 2 of the 4.5mg capsules, had forgotten to do it before hand, or was just too tired/lazy. The wonderful thing is that there were those different reasons. Before starting LDN, it would have been all of them together.

Anyway, it seemed to make me a little too 'speedy' in the morning, as well as less tolerant of situations as well as others by the afternoon (ie; cranky, moody). Very few medications are worth that side effect in my world.

Will keep you posted.

With love, Erika

Thanks so much for that post to Eddie and for all others who question the time thingy.

I'd like it printed in gold please..

Happy you are doing so well and also noting the subtle but good changes with LDN. BTW, I was on 3mg for about 2+ yrs before I could successfully switch to 4.5mg. My legs would stiffen up on 4.5?

As mentioned in another post, I think that LDN helped the body to recover from a long day of driving (8+ hrs), which was followed by another 3 hours of fooling around with a flat tire, arranging for a tow truck and more driving. At the end of that day I was exhausted, uncoordinated, and dizzy and vision was blurry and dim. The worst symptom that increased was in the legs; and they were quite weak and spastic. To make it up a flight of stairs I had to use my walking stick and my free hand on the stair above; so I sort of crawled up them like a little kid.

Normally I would have expected to be 2-4 days recovering from fatigue, spasms, pain, dizziness and sleepless nights; but within 24 hours these symptoms were very much reduced and things were pretty much back to how they were before I had set out on the trip.
I slept fairly well in a strange bed, when normally that would have been impossible with the symptoms that were going on at bed time; yet by the next morning the body was well on its way to recovery. I did take it easy for most of the next day and did need to take Baclofen for the leg spasms, but before being on LDN, I would have been incapacitated physically and mentally.

What I found most surprising was the total absence of cog-fog during the drive, the flat tire episode and a round of visiting with family after all of that. By the time I got to bed I had been up for around 18 hours. Yet, even with other symptoms, the brain was receiving and processing information throughout it all with not so much as a blip even during the worst of the fatigue and spasticity; which is amazing compared to how things have been for over a year.
The next morning cognition was still good and I was able to arrange for a tire replacement for the truck. The other symptoms had improved enough so that I was also able to drive there and deal with that without any problems; all in a town that is not very familiar to me.

One thing that I was hoping LDN might help with is hair loss from low thyroid function; but so far not much change in that department. I did notice being a little hyper after about the first week of LDN and so I stopped taking a nutritional support (L-tyrosine), for the thyroid/pituitary/adrenal axis and that's when the hair started to fall out; so I'm going to try taking it again at a lower dose than I was taking before.

All in all, LDN has really provided the most benefit when compared to everything else that I've tried, including PT, meds and nutritional pharmacology. I'm very happy with the change thus far and even if nothing else improves, getting cognition back is enough. That has given me my life back.

With love, Erika