Ok ya'll....I took my first 1.5 mg dose of LDN last night. I didn't sleep well but I never have so it wasn't anything unusual. I didn't want to take any Tylenol PM with my first dose - I can always nap during the day if I get too sleepy but I'm really trying not to.

The only thing I noticed is that the "itchies", which I seem to always have at some point on my body, seemed to be all over me last night and I just could not get comfortable. Now, this could be from me stopping the Neurontin and the Baclofen OR from me tapering down my dose of Zoloft. Or from a combo of all three! I have an itchy back most of the time and my Neuro said it's definitely the MS.

The only difference I notice today is that my right leg doesn't hurt - and it had been hurting 24/7.

My goal is to stop taking the Neurontin, Baclofen and Zoloft altogether. I will still have my thyroid med and my BP med. And of course the LDN.

I was just so tired of pumping my body full of different chemicals - I probably glowed in the dark when I was on everything!

Can't wait to take my second dose tonight!! :)

OMGoodness, Kelly. What are we going to do about you ‘n Frank?

While LDN might ultimately help with a lot of the symptoms that you take Neurontin, Baclofen and Zoloft for, it is highly unlikely to help much until you are at a therapeutic dosage (at least 3.0mg), and stable for a while on it. If you manage to wean off all those potent drugs with only 1.5mg of LDN, then you probably could have done without them anyway.

As far as the itchies, I still get them even on LDN. Mine are limited to a few select spots, and are intermittent, but they are troublesome when they come on (usually stimulated by heat). I have found ice packs very helpful, but that isn’t a good option when you have many spots that are bothering you. In that case, I’ve used antihistimines.

The MS-itchies are misfired pain signals, and (if this is not due to the other changes you’ve made with meds) LDN CAN stimulate some symptoms to flare up at first, usually only for a few weeks. For Sally, it was stiffness, for me it was spasticity . . . but I've heard of all sorts of fairly minor “stirrings” that have occurred. The theory is that LDN is busy wrestling up our immune system (my explanation, not “official”), so we may go through some transitory changes for a little while. These will calm down within a few weeks, OR if they occurred when you upped the dosage, you may decide to try again later . . .

According to Dr Bob Lawrence (a major proponent for LDN), the more official reason that this may happen is as follows:

I didn’t sleep well for the first few days that I moved up on the LDN, each time, but I was never worse for wear the next day (still had more energy then pre-LDN). Additionally, I had had terrible bouts of insomnia over the years, but once I stabilized on LDN, that has not been a problem for me any more.

Glad to hear your leg pain is gone. I had had terrible leg and arm spasticity for years, and it was almost gone within a few days. Also, I noticed great improvement in my bladder function quite early on.

Silver Lining, I ran across this too:

So it sounds like perhaps the “increased pain” phenomenon might be a transient thing . . . although you and your friend weren’t on any of those meds, right?

Cherie

(BTW, my cholesterol dropped to normal levels, and stayed there, after several months on 4.5mg LDN ... but that’s another story.)

I've had the "itchies" for quite some time now - they just seem more noticeable at night when I'm trying to go to sleep. I've always had them on my back - that spot that can't be reached from above or below...:rolleyes:...right smack in the middle. I've become quite the contortionist!

I don't feel the need for a nap today even though I didn't sleep well last night. I've finally come to the conclusion that I'm just one of those people who doesn't need a lot of sleep. If I can get 4-5 hours of consistent sleep a night then I'm good to go. When I was on Neurontin and Baclofen I was napping all the time. I feel much better now that those two drugs are out of my system. Now to just get off the Zoloft.

Cherie - No neither of us were on any of those meds. We are probably just weird, I'm always the 1% that something happens to. MS is the most "normal" diagnosis we've gotten in my family. :rolleyes:

I have noticed the last few days that my imaginary bug bites and itches are back with a vengance. I'm not sure why. But if they really drive me nuts I take a neurontin. I would go ahead and do that if it keeps you from sleeping.

I am the same way as far as sleep goes. Went to bed at 3am, woke up at 8am...have more energy than anyday I sleep more than 6 hours. I am exhausted if I sleep that long. It allows me to spend more time with my kids because I can get most of the cleaning/laundry done while they sleep for 5 hours before I do, so I don't have to do it during the day. My fatigue is much better on LDN.

I'm also the same way with food. My body, literally seems to not need it. It is not unusual for me to forget to eat for days on end. I don't get tired, or weak or dizzy. As long as I keep drinking I am just fine. This was an issue even before LDN and Wellbutrin, so although they probably aren't helping it they aren't making it worse.

My doctor says I'm just incredibly weird. It doesn't take a medical degree to figure THAT out! :p

The doctor told me that I might "forget" to eat!! I laughed! He said "no, I'm serious" and he had my undivided attention at that point.

Ever since I have stopped the Neurontin and Baclofen I have noticed that I don't have much of an appetite. I think they were making me hungry. I gained 37 pounds while on those two meds. If the LDN helps me take it off then that's a bonus - it's not my reason for taking it.

Even if I get sleepy this afternoon I won't nap. I'd rather go to bed at 9 PM and see if I can sleep. The doctor said that OTC sleep aids like Tylenol PM can be taken while on LDN. If I need to I'll take it...I'm just trying my best not to take any more than I have to. :)

Hahaha! Me "forget" to eat! That's fuhney! :D

Okay, I doubled my dose of LDN last night (I've been 3 weeks at 1.5 mg.)

I actually slept much better and missed my 4 o'clock "wake up and take my thyroid pill". Yippee!

I'm going to make peach jam (the freezer kind) today. Yum! I doubt I could have done it before LDN. Just didn't have the ambition. I've got the peaches, pectin and containers. Wish me luck!

Sounds like 3.0mg is good for you then, TT. :highfive: Cool that you slept well, but perhaps you are going to want to move your thyroid pill-taking time? :eek:

Ambition and a "can do" attitude IS something that comes for many of us who take LDN. I remember being so scared that it was just a false high, and I would crash any day. I didn't :D, but I did have to learn to pace myself with this new-found energy.

I have a friend with MS who pushes himself WAY too hard, even without LDN. I would be very afraid if he got on LDN actually, because I'm sure he'd kill himself! :cool:

Cherie

Right now I can report (day 3, 3mg) that there has been no major change in my condition. That having been said, I also must report that my hand tremors are largely gone. I suspect if I got over heated, or if I got rattled or something, the tremors would probably come back. I guess we’ll just have to wait and see.

For some, it takes time, Marion...Hang in there:hug:

Congrats, Twink, sounds good..:hug:

Kell, don't forget to eat..:D :hug:

Frank, are you pacing yourself? :hug:

Some changes are insidious, and it's when you look back over several months that you realize that some symptom went away.

I happened to get very obvious symptom improvement from the get-go, which was really a major "bonus" since that's not why I got onto the LDN. However, there were changes that took weeks or months to notice too, and it wasn't until I looked back that I realized "that" was gone.

.... Then there are those of us who get immediate symptom improvement, like this way too young lady (24 yrs old) I was in touch with who was PPMS. She had been bedridden for months, unable to sit in a wheelchair, and had been cath'ing for a long time too. Within a week she could spend several hours sitting up, and her mom said that she was able to urinate on her own already (not completely, but mostly). Eventually, that decreased the number of UTI's she got, which helped her overall health in many ways.

The main "goal" is to slow the progression of the disease though . . .

Cherie