Well I have been on LDN about 5 1/2 weeks now and I' not feeling very well. I kind of feel yucky. Is that normal at the beginning - my body getting use to things?

It took my bod awhile to get used to it. The first week was the worst. I'm still achy, though.

I had even considered quitting, but remembered I promised myself to give it a good trial period. It's been 4 months since I started.

I do have better stamina, so that's the tradeoff for the achiness, I guess.

What kind of "yucky" are you experiencing, jnet?

Well, It feels like an increase in symptoms. I'll probably start my monthly cycle next week lol - I always get an increase in symptoms. I should keep track of when I start but I don't, I just know it probably next week. My tile floor usually feels cold, now it doesn't - it feels dull. My bablance is bad but now it's really bad. I'm not sleeping very well. But I will do like you did and give it some time. I just get nervous.

Gazorpa is gonezorpa

http://crystalangel6267.webs.com/gazorpaldninfo.htm has all the files



You can Now get there via http://www.larrygc.com/gazorpa or http://www.larrygc.com/gazorpa.com

any of the above links will take you to the same page

:grouphug:

http://dailystrength.org/groups/ldn/news/view/1083940 has some info for new LDNers

you may find all your old symptoms come back for a few days in Reverse order as the body checks out old wounds to see if/what it can do

don't panic

people try to "take over" and that just complicates matters

But how long is a sufficient trial before you feel like you gave it a good shot really? (I know any answer can just be opinion since there hasn't been any in depth trials.) I tried it for 3 months in 2005 and never noticed any improvements/symptom control, but was thinking of giving it another try and have a new script for it from my neuro for 3 mg. I tried for a 1.5 mg script ,but this was my response from my neuro.

"Whether LDN works and what dose of LDN is optimal is unclear. The theory is low-dose and it is unclear whether 3 or 4.r or for that matter 1.5 is best is not known. I suggest using the 3 mg and if you have no trouble with that consider increasing. but again there is not published data that LDN works."

And my response to my neuro, which I'm still awaiting a response to:

"I think there's no published data on LDN because the money is not there to go forth with the trials. There's no money to be made off LDN even if they find out it's a good and reliable treatment for MS,Chrohn's ,etc. I find that so incredibly sad as a former nurse. I'll try the 3mg ,but if 4.5 mg would work best for me I'd need to get an entirely new prescription for it. I was trying to avoid that by getting one prescription for 1.5 mg. "


Thanks! :hug:

As I understand it symptom improvement is a "perk" that some, but not all, experience. The main objective with LDN, I believe, is to slow progression and that can only be verified through MRI's at varying intervals throughout the years. Sx improvement is always good.....at least you feel like you're doing the right thing in taking LDN but not everyone gets that benefit. Someone correct me if I'm wrong....but that's my understanding of it. :)

so if LDN can kick up some old Sx... would that be why i am having an increase in old ON Sx? i talked to my neuro about it and she tossed some solu-medrol to me just to be on safe side.

so far i still have nothing bad to say about LDN.. my only small gripe is it causes me to get less sleep at night but that is not affecting my day to day living... so i can deal with that..

What Larry and HereKitty say is true for some LDNers. Not all get a lot of symptom relief...I only had a little, because I was SPMS, when I started.

The one thing I had, from the very beginning was a feeling of well being. I thought it was just the placibo effect but, it never went away. I must have needed that raise in endorphins.:)

The important thing, to me, is that, except for an occasional stress or heat related flare, I have had no lasting exacerbations and very little progression of disability..(my growing older is what adds more to my disability than the MS.

I would say a good try time for LDN is probably 6 months to a year. I can't tell you how many times I threatened to quit LDN, in that first year but, everyone encouraged me to stay the course....and I am so glad I did. It didn't stop my MS and only gave me some symptom relief but taking it made me feel better.:)

I did have better stamina, balance, clarity of mind, when clsing my eyes in the shower, I didn't get dizzy and fall anymore and I had better bladder and bowel control.

I'll tell you what I was told.......Stay on, at least 3mg, stay the course and things will slowly get better. Maybe I talked myself into it, but that seems to have been the case for me.

I suppose there are those of you who may be allergic to Naltrexone or the filler or both and some of you may be more susceptable to the SX such as stiffness and insomnia. If you are allergic, then stop, but if you can make it through the first week or two of SX, then stay on the 3mg and later, try the 4.5mg.

Some of you sound just like I did, at first. I expected too much and saw the wonders it was doing for some others, like Larry ( we started LDN at about the same time and while I was struggling, he was seeing great sx relief and success). I believe the difference is, that he was RRMS and I was SPMS, and a few thousand years older.:D

LDN still works for me, in the way it should, so I'm on it for life.

Good Luck and Love to You All.:grouphug:

Yes, LDN is known to TEMPORARILY stir up old symptoms in some people. I think this is particularly true for spasticity. Here is more information on that:

http://ldn.proboards3.com/index.cgi?...lay&thread=148

I would suggest that you call Skip if you have any major concerns, because he is most experienced is what would be deemed "normal" transition. He would also be most educated on the best course of action, based on your disease history and dosage increases, etc.

LDN doesn't work for symptoms for everyone, but for those who persevere, it USUALLY does help out in this way too. Like Kelly said, the goal is to reduce relapses and progression . . . and symptom improvement is a BONUS.

Cherie