Under 60 or over 80 degrees, and I start having problems.

Cherie

It took me a few years to figure out there was a pattern , but that's why I always mention it to people on LDN.

I am on liquid LDN, so I can adjust easily.

Cherie

Good for you, Marion. I lost 30 lbs the first summer after starting on LDN . . . but it coincided with going off A/D's too. Since it fell off so easy, I don't think I can credit LDN with much of that . . . except that I was probably only able to go off the A/D's because of using it.

I didn't regain enough stamina to cause pain from my bunions , but they don't bother me much anyway.

I'm sure the exercise will do you well . . . but slow and steady, k?

Cherie

I got most of my improvement in symptoms almost immediately, but I started on 3.0mg. Many people start out at 1.5mg (you can ask the pharmacy to make it up this way ... 2 * 1.5mg instead of 1 * 3.0mg), as some have found their body adjusts better if they start out slower . . .

Yes, it can take 9 - 12 months to feel the full effects of LDN . . . and not everyone gets symptom management benefit either. Sometimes the symptom benefits are very hard to notice too . . . until you look back to the month or several months prior.

The GOAL of using LDN is to slow progression and reduce (even stop) relapses, and most everyone seems to benefit in this regard. I used to have relapses every 3 months, and I have had one in 3 1/2 yrs (due to an untreated infection). Infection and over-doing things (in a BIG way) can still cause relapses, even on LDN.

I think it helps to stay connected to people who are using LDN, when you are going to try it. There are "tricks of the trade" which can really help with adjusting to this med (like don't "up" it during Sept/Oct, or how to know if the dosage is right for you, or when to try to up it, etc.). I had a friend walk me through the first several months, and that really helped.

Cherie

Hi Frank and Cherie,
Thanks for your responses and for the tips, Cherie. I was part of the LDN Yahoo group for a long time prior to going on it last time and for the whole time I was on it. I did write in to the group a bunch of times with questions etc.. but they weren't very nice when you suggested their drug of choice didn't work for you. Right away it had to be something else causing it, whether the filler not a high enough dose, etc.


Like I said, I was on 3 mg. I did however, start out the first few days @ 1.5 mg and got my LDN from Skip's in 1.5 mg capsules. I think it can't hurt to try it again, right? I have some left from before, but I suppose it has lost it's effectiveness by now. I'll let yous know when I start it and how I'm doing on it. I'm glad to see how many of you are noticing improvements on it.

It's too bad you had that experience.

The points they made, about fillers and compounding pharmacies, etc. are legitimate. I don't buy mine from Skip's cause I am in Canada, but I always recommend that others do because I know he is reliable. It sounds like you did all the right things though . . . but it doesn't work for everyone (and/or not necessarily right away) with symptoms.

I wasn't expecting any improvement in symptoms, to be honest. I had had MS for about 14 yrs, and had had some pretty bad attacks that left a lot of damage . . . so I thought I was a lost cause. I really just went on it because I had nothing to lose, and I was hoping it would slow progression. I was one of the lucky ones, for sure.

One thing I learned, and only recently, is the part about everyone adapting at a different pace. If you go back about 3 or 4 pages on this thread, Sally and I were talking about whether 1.75mg was "enough", and during that research I read that some people might take quite some time to adapt to any increase in dosage above 1.0 mg. I am very sensitive to meds, and only had about 2 weeks of side-effects when I started at 3.0 mg. It seems some people might experience that for several weeks, and I can see how that would be discouraging.

That's why I think it might be worthwhile for you to start out at 1.5mg this time, and take it much slower then last. You are on Copaxone anyway, so LDN will just be double-protection, with hopefully some long-term affect on symptoms. No need to rush . . .

I understand that Naltrexone has a short shelf-life, something like one year . . . so I agree you should get a fresh batch.

Good luck, and take it slow (especially if you have trouble with cold/spasticity).

Cherie

Hi Des..

I was a member, years ago, of the same group. It's true that there were some gun-ho LDN members there, who made you feel like crap, if you dared to question LDN's Efficacy..

As Cherie said, the stuff about fillers, peeps were allergic to and not using a proper compounding Pharmacy, were and still can be a real problem.....However their people skills left a lot to be desired.

I think giving it a new try with your Copaxone is a dandy idea. Give it a little longer, this time and check in here, often. We promise not to holler atcha..

Frank, how ya doing with the pneumonia?? Any better?

Are you continuing to take your LDN, while Ill? I hope so, unless you are on an opiad for pain.

Frank, GET INTO THE HOSPITAL!! Pneumonia is not something to mess around with, especially when we have MS.

Cherie

Frank, you heard Cherie! Now GIT!

Keep us updated, k? We care about you.