I've had to lower/increase the dosage of LDN when the weather changes, every year. The spasticity comes back (for me) in cold weather, but it usually takes me a few weeks (DUH!) every year to figure out what's going on . . . but when I do, I drop down to about 3.5 - 3.75mg, and I am good. I always work my way back up to 4.5mg within a few weeks though.

As far what happened last year with the infection, I had a broken root under a cap in my tooth. It took a while for my dentist to figure out what was causing the pain, but when he did he said that he could just keep putting this numbing med in so I could hold onto the tooth (molar) as long as I wanted.

What didn't occur to me is that every time it got "inflammed", it was actually infected.

Since I had that ongoing infection, my immune system got very weak. I think I got three bacterial infections, bronchitis, a couple of colds/flu's, some UTI's (with no notable symptoms, except MS ones), and I can't remember what else. ANY type of infection can cause us problems though.

My spinal lesions flared up every time I wasn't on antibiotics, and I was on/off them several times. When the lightbulb finally went on (about the tooth being the underlying cause), I had it removed. My spinal lesions quit acting up almost immediately, but by then I was left with some long-term (or permanent) damage, including heat sensitivity and numbness.

I am still at the same EDSS that I dropped to after 9 months of being on LDN, but I have more issues due to the 2007 infection year.

Cherie

Thanks, Cherie.

For those of us who don't know all the acronyms, here is a quick explanation of EDSS: http://www.mult-sclerosis.org/expand...atusscale.html

This thread is going to really help us LDN newbies avoid the pitfalls. Thanks for much for starting and maintaining it, Sally and Cherie. :hug:

Hi Chelsea, thanks so much for your report. So Happy you are doin so well on LDN..:)

I'm not surprised that your Friend had to dbl her dose of opiad pain med, if she was taking 25mg of LDN. It is, after all an opiad antagonist at that dose, especially.

At that dose, Naltrexone is working in a completely different way than the low dose works for us.. For us the 3 to 4.5mg works to, only block indorphins temporarily and then causes our endorphin level to increase, correcting our immune system so it does not attack our nerve myelin. (The simple explaination.:rolleyes:)

At 25mg, endorphins are being blocked for too long of a time to recoup. So, that dose would not work for us at all.

Keep checking in..:hug:

I got my prescription for LDN today!!! I'll start taking 1.5 mg. tonight. I take that dose for 3 weeks, then I start taking 3.0 mg. for 3 weeks, then 4.5 mg. for 3 weeks. I guess whichever dosage agrees with me is the one I'll stay on. I asked the doctor how I'd know if I couldn't tolerate the 4.5 mg. and he just said "oh, you'll know....just like you know when you're in labor." Geeze, I know what that feels like - I sure do hope this isn't as painful! :eek:

How long did it take for the vivid dreams to begin? I have some pretty vivid ones now...not scary just bizarre.

Not a problem, I didn't feel I could respond without reading the whole thread. I would have ended up responding 15 times. :rolleyes:


Nope different person, sorry. This friend is on LDN for MS, she takes 4mg. (My other friend is on 25mg specifically for PTSD.) Fentanyl and Morphine were the two that my friend with MS required twice the dose on. She stopped the LDN 3 days before surgery and did not start it again until she was done with the pain meds.


Yes that is what I mean. For example, my cramps are much more painful. My old shoulder and knee injuries from gymnastics are more painful. But my MS pain is almost non existent. If I get VERY stressed it comes back. I've learned to just take a Neurotin if I have to see my in laws, because I will need it.

My family has a huge history of drug addiction. Even before LDN I refused pain meds whenever possible. I didn't take any after my shoulder surgeries, once I left the hospital. So no, it has nothing to do with not having pain meds since I didn't have them before.


Nobody knows why it didn't work, but it was before LDN. It was during the diagnostic process when they did a Transesophageal echocardiagram to make sure my heart was okay. The Versed didn't work. On top of that the numbing stuff they used caused me to flare. This also explained my flaring after root canals. Any numbing stuff in the "kane" family causes me to flare.

I had esophageal spasms for a few weeks and couldn't eat. Twink will remember that... I accompanied her to my favorite eating establishment in the WORLD and I couldn't eat because I couldn't swallow. I had periodic issues with the spasms after... but not since starting LDN. Bentyl is what I used that finally worked to calm them down.

I started LDN in December and didn't have an issue. I don't like the cold but I dislike the heat much worse. I have always struggled with tolerating the heat.

My cognitive issues really are not that big of a deal, but they are to me. I won the spelling bee when I was like 10. Grammar and spelling has always been my strong point. Now it's not uncommon for me to mix up their and there... or spell something wrong that I KNOW how to spell. It's not a big deal, but it's like taking the ONE thing I was really good at away from me ya know?

Rochelle and Kitty, thanks. :)

There is no way I'm making another album. lol However there is no shortage of pictures on my blog http://upwithdownsutah.blogspot.com . You may not have seen that before since I was so worried about someone that wasn't supposed to know I have MS finding me. I gave up on that and told my in laws to get over it. :D I also still have my MS blog and recently started using it again. It may just turn into a "medical blog" and gets lots of attention now.

Funny how I always end up back here with you ladies when something comes up. lol

Yes, I do indeed remember your esophageal spasms, Chelsae!

And I remember that drive-in where they didn't believe in writing your order down on paper -- instead, they just memorized everything and pointed at you when it was ready.

I'm very happy to know that you are on LDN and having good results.

And Kelly, woohoo for receiving your first bottle! I think I'm kinda jealous that everyone else gets to increase their dosage after 3 weeks. :cool: I'm at 3 weeks right now -- maybe I'll take an extra capsule tonight, just to see what happens.

:ROTFLMAO: No, nothing like having a baby, Kelly.

And, even if you have trouble going up at first, you can try again later. 3.0mg gives you the protection, you might just get more satisfaction with symptoms on 4.5 mg, ONCE you adapt.

For me, the spasticity starts to act up when I am too high. I've said that so many times on this thread though that I don't think anyone wouldn't recognize that they need to go down (temporarily or permanently) on the LDN if that occurs. Having a baby is definitely worse though. :ROTFLMAO:

I know many people who've started at 4.5 mg with no problems what-so-ever. :cool:

The majority of people don't have the dreams . . . and you might not have any more then what you do already. I don't get them at night at all, just during my naps . . . and they aren't bad, more like "adventurous". ;)

Good luck tonight. You aren't likely to feel much of anything on 1.5mg so don't be too concerned (or excited) just yet. :)

Cherie

I don't know what he meant by that, Kell. The only thing I noticed when going up to 4.5mg, too soon, was a leg stiffness I didn't like. Most of the early LDNers started on 4.5mg and did just fine on it.:)

The vivid dreams, if you have them, will not happen all the time and really are not bad dreams, just vivid. Don't worry, too much, about that.:hug:

They still do that... though they do take plastic now Rochelle. Memorizing... it's amazing, I remember when I could do it!

Kelly, good luck. I didn't notice much until I got up to 3mg. When I MISS it... well, I'd rather give birth than deal with the pain it causes to miss it! But that's the only reference I can think of as far as labor. lol

Rochelle, I use liquid, so I was able to increase .5 at a time. 1, 1.5, 2, 2.5, 3, 3.5, 4.... I'm not sure I would have gone up so quickly if I had to double it each time.

But yes... I love my LDN. So much that I am perfectly willing to have a surgery knowing I can't have pain meds afterwards. I know I am the exception and most people don't get such drastic results. So I'm just thankful I'm one of the lucky few.

Besides, I am used to doctor's looking at me like I'm nuts. :rolleyes:

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

This was my experience as well. I did notice immediate improvement. But the broad scope of it didn't hit me until later. I noticed the spasms improve immediatly. But later I realized that the burning pain was also gone. The fatigue improved also until recently. Also the numbness improved as well. I was able to walk and do things again.

When I started getting sick this year I was terrified that the LDN was not working anymore. But then I missed one dose in July and found out that it was definitely working. Missing it induced serious pain, spasms, etc. After 9 months I am hopeful it will continue working this well.

Whaaat? Missing one lousy dose will do that to you?

*gluing reminder to my pillowcase*

It could just be me.... but yes it did. (Anyone else weird like me??)

When I flew to Minnesota in February I wasn't able to put it in the fridge...and I wasn't doing well by the time we got back. But actually missing a dose was totally different. Now there were other factors (very little sleep, uncomfortable hospital furniture, a tad bit of STRESS) and it may not have been all the missed dose... but either way, I'm not risking it again.

Oh, and I don't forget because I set the alarm on my cell phone. It automatically goes off every night at 11:30pm to remind me if I haven't taken it by then. :)

i have been too afraid of missing a dose so I have not had that happen to me as of yet

hope everyones week is going well, I have been very over tired not sleeping well plus the last week or so was a bit hectic

I have missed a day of LDN, here and there and it didn't seem to bother me. It's when I missed two days, because I was out, temporarily, that it hit me..:eek:

You can believe that I haven't made that mistake again..:D

Feel better, Frank.:hug:

Frank, you've had so much going on lately that it's to be expected that you'll feel overly tired. You need some rest!! :hug:

thats what I am thinking, cause while deb was in hospital thats where they wanted my kiester too. so instead she had to go in because of her new job, and had to get back asap. so it will probably take me a few more days to be back to my spastic self:Dancing-Chilli::Dancing-Chilli::Dancing-Chilli:

You have made a lot of changes in a very short period, Frank. Reducing some meds, the things going on at home, etc. I wonder how you feel you would have coped with those things if you hadn't got on the LDN, under the same circumstances?

Please feel free to disagree . . . just a thought.

Cherie

I am on the liquid too, and my pharmacist prepares a month at a time. The liquid has a much shorter shelf life . . .

I can tell by the 3rd week that the LDN is not as potent. Most times I try to refill it every three weeks, but there have been times I've pushed that out to the end. I notice the difference as soon as I get on the fresh batch.

I have missed a few days, on a couple of occasions, and it's not pretty. In fact, for a long while I was measuring only 2.75 mg accidentally, and that was at the same time as all the infections were going on in my body, and my spinal lesions were acting up. If my doc hadn't eventually asked me how I was measuring it, coincidentally, I'd never have thought to re-measure it myself. I'd still be measuring the wrong amount. DUH!

After a person stabilizes, it's a fun test to not take it for a day or two, just to see what a difference it is making. We tend to take things for granted after a while.

Cherie

I'm not sure why the pharmacist does this. I mix my own and I use the 50mg pills. This makes about 2 weeks worth. (Give or take a little.) It is still fine by the end of that time. But, any longer and it's not.

I would ask him to only make two weeks at a time but if your dose is lower he may already be using that 50mg pill. He could always cut it in half and do 25ml at a time. I did that for the first few months until I decided to see if the 50 would last. It did.

Oh and I can sympathize Cherie, I've got an infection right now and it's not pretty either. Talk about pain... *sigh*

He is not using the 50 mg pill to make my compound, he is using the PURE Naltrexone powder, without fillers. I am sensitive to several meds AND fillers, so we went with the straight drug compounded in distilled water w/ flavoring.

I am good till the end of the third week, and the "expiry date" on the bottle actually lists the date that is 21 days after I've filled it. It is my own fault that I sometimes use the fourth week, but that has saved me a lot of times too. I am a major procrastinator, so the fourth weeks is left there as a back-up for my incompetance. :D It still works, just not as well.

Hope you are getting antibiotics for your infection. Infection is BAD :mad: (at least for me).

Cherie

BTW, the major supplier of liquid LDN in the UK said they did some testing, and it can "supposedly" be kept out of the fridge for 56 days, and does not expire IN the fridge for 100 days (something like that anyway).

I actually wrote him a letter and told him that that is NOT my experience at all. :(

.... They did the scientific "tests" though .... :rolleyes:

Cherie

I am 5 days into taking LDN. I have learned from Frank’s experience (thanks, Frank ;)), and I have not really physically pushed myself. Today, however, I went to the grocery store unaided. I take my power chair for a trip like this, so I can only buy as much as I can fit in one of those little hand baskets. Usually such an outing wipes me out and by the time I get home and get the food put away I can count on being a mess of tremors and achy spasms. Today it was different. I am just as wiped out as usual, but the shaky, tremory feeling is strangely reduced. Though I feel weak as usual, my movements seem oddly smooth. What a nice change!

Will it continue? Who knows. Is it the LDN? Perhaps time will tell.

You should talk to him about making 2 weeks worth, since he's using powder it shouldn't be a problem for him to do that. A few more trips to the pharmacy, but worth it if it works well all the time.

And, I'm going to go in tomorrow for an antibotic shot. Not to worry.

Cherie I know what you mean that has been in back of my mind too, am trying to be positive and hope it is just the stress of last couple weeks,

I myself have to work harder on pacing I tend to over do it a lot, its just so dang hard to stop when I am getting something done for once, that's what i have to realize, is it will be finished sooner if I don't push so hard and just do x amount each day,

today wasn't too bad considering it started with an uncomfortable ex ray table and two and half hours of MRI's, I did not nap, I did spend a lot of time fixing a laptop so that was productive,

not sure if this over doing it is a sort of denial issue still or a foolish pride issue either way I am slowly figuring it out, its counter productive

hope you all have a pleasant morning

Are you of the impression that liquid LDN only has a two week shelf life, or is that your personal experience? Have you tried 3 or 4 weeks of prepared liquid and it didn't work for you after 2 weeks?

I know 3 weeks is fine for me, I just have to be more disciplined to not use that 4th week.

If I tried to move to 2 weeks though, I'd have MANY days without the drug. :eek: My pharmacy is only open till 5:30 daily, 1:00 on Saturdays, not on Sundays or holidays. Then, they only make the LDN up in the afternoon, and I have to give them a min of 4 hrs before the afternoon that I need it. It's not very convenient for someone unorganized like me, so I do end up using part of the 4th week sometimes. I really wouldn't consider changing that arrangement because of all the circumstances.

Good luck on the shot. I've never heard of an antibiotic shot??? What is that? Is it a one time treatment or ?

Cherie

You remind me of my friend in SC . . . he pushes himself so hard that I'd be afraid for him to get on LDN. This drug really does NOT protect us from ourselves. :rolleyes:

You really do have to learn to pace yourself, Frank. If LDN proves effective for you (and you'll never know that if you keep over-doing things), then this benefit will last forever. I remember pushing myself in beginning too, cause I was so afraid the energy wasn't going to be there next week or next month. I am several years into it now though, and I know tomorrow will come and the extra jobs will "keep". ;)

Cherie

I've taken LDN (1.5 mg) for three days now and I like it! I've felt better and have not needed a nap in the afternoon. Not sure if this is from me stopping the Neurontin and Baclofen or just extra energy from the LDN. I really don't care which it is, though! I'm just happy to feel better!

I'm not doing too much. Sort of trying to pace myself. Hope it continues! :)

Yes this has been my experience but you have to remember I don't have as much wiggle room. I am using 50mg pills. So I make 50ml at a time. 100ml would be 22 days worth and that is too much. 75ml would be 16 days and I figured it's just easier to make it as fresh as possible. Plus the bottle I use for it is only 50ml.

I'm making it myself though, which is different I know. :cool:

GREAT, Kelly . . . and that's only on 1.5mg. :Dancing-Chilli:

You've managed to ditch 2 fairly potent drugs, picked up one light one, and you are doing well . . . it's all good. :)

Cherie