How we all doing on LDN?

A board to discuss Low Dose Naltrexone (LDN) as a treatment for Multiple Sclerosis

How we all doing on LDN?

Postby PhireX » Wed Feb 23, 2005 4:21 am

LDN area on this board has been a little quiet lately, thought I'd liven it up..

So how we all doing on it?

I started last night, just took second dose, have nothing to report really. ;)
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Postby LindaR » Wed Feb 23, 2005 7:05 am

I've been taking LDN since September of 2004. I do notice that I sleep better at night because I am not waking up to urinate and that my legs are no longer restless. I have not had any relapses since my initial one in January of 2004.
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Postby adjanimals » Wed Feb 23, 2005 2:50 pm

Today, 2/23/05 marks 4 months on LDN at 4.5 mg. Still haven't seen the dramactics some state. Such as getting out of there wheelchair and walking. But I do feel better. No more brain fog, sleeping great, no problems from the start. Bladder and bowels much better, getting up at night maybe once compared to every 2 hours. Attitude is a whole lot better, 6 months ago I could care les if I lived or died. Still use a scooter but, transfering , getting in & out of bed, in & out of the shower, on & off the toilet is all improved. Actually want to get get back to work, been out since June, 04.
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not too great start on ldn

Postby gibbledygook » Fri Feb 25, 2005 6:30 am

Hi,

I started LDN (3mg) on Saturday 19 Feb 2005. I almost immediately had much greater stiffness in my right leg and hand. The spasms at night have also become worse. My temperature is also strange at night with a hot/cold shivery sensation. I believe that adverse reactions may occur for a while but can't remember for how long...any ideas?

Alex
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Postby PhireX » Fri Feb 25, 2005 10:21 pm

No idea- do you take any other medication aswell, that might help.

PhireX
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combination therapy

Postby gibbledygook » Sat Feb 26, 2005 3:37 am

hi,

I have also been taking 200mg of minocycline and am taking a weekly injection of avonex (doh!). I suspect the latter may be removed from the therapy quite soon but my doctor was very reluctant for me to stop the avonex initially.

I think quite a few people find that the LDN is initially problematic especially if there have been leg spasm problems before...Has anyone else had spasm problems on LDN?

Alex :roll:
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Postby PhireX » Sat Feb 26, 2005 4:48 am

Hmm you only take 3.0 so it's not like you're taking 4.5, cant offer suggestions re: the leg spasms.

I'm not one to tell anyone to go off their "proven" therapy, that's totally your decision. However, as we all know, Bihari doesnt recommend to be on any interferon therapy while using LDN.
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Postby flora68 » Sat Feb 26, 2005 9:09 am

I just started LDN a little over 2 weeks ago, on February 10th, and I'm doing fine...actually a little better , definitely sleeping better. But I'm so happy and relieved to finally be on LDN, that my mood may be influencing my physical state. In fact I'm sure it is. I started smiling incessantly and feeling better overall as soon as my doc handed me my prescription!

Anyway, LDN is what I take now for MS as well as supplements like Turmeric. I started on 3mg, and I'll be on that for a month or two until moving up to 4.5 mg.

Until about a year ago, I was on Copaxone, and on Avonex before that. :roll: And my plan is to never, ever again get talked into taking any more bizarre, uber-expensive injectables with the nightmarish side effects.

I have faith in LDN and am very comfortable with my decision to take it. I can't say I ever felt that way with the previous therapies, and I wish I hadn't ever taken them in the first place. Damage was done. But that's in the past. At the very least, I don't believe that LDN can do me any harm.
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Is it the LDN?

Postby flora68 » Fri Mar 04, 2005 9:34 am

Guys, I've been thinking.....I've been feeling and walking so much better lately that I'm beginning to suspect that it really is the LDN, and not just the placebo effect. (Although my respect for the placebo effect remains undiminished..... :wink: )
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Postby PhireX » Fri Mar 04, 2005 10:43 pm

Who knows,

Glad your doing better though. How long you been taking it for now?
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be here now

Postby flora68 » Sat Mar 05, 2005 12:48 am

PhireX wrote:Who knows,

Glad your doing better though. How long you been taking it for now?


Thanks, PhireX! I've only been on LDN since February 10th, and on the 3mg dose at that.

I don't know what to think. I went into this LDN thing totally ready to be very, very patient, and not expect anything to change anytime in the near future.

But since starting LDN, I started noticing improvement in different areas, and the improvement in general really seems to have accelerated lately, to the point that I just can't write it off to placebo+luck anymore.

Come to think of it, my son's best friend noticed it this afternoon too, especially the way I kept offering to get up to get things for them, two perfectly able-bodied 32-year olds. For a long time it's been the other way around.

First I noticed I was sleeping for longer stretches, and waking up feeling actually rested and even slightly energetic. That part could possibly be related to my menopause hormones finally having settled down, but that wouldn't explain why I can walk so much better, and why I found myself almost bounding up my dauntingly steep front steps tonight!

There are only three steps, but they're unusually steep, and until tonight, I always had to hold onto the railing really carefully with both hands, using my forearms too, if you know what I mean, to kind of help pull me along.

And since my left side is weaker and semi-numb, I've always had to step up to the next step with the right foot, then I'd barely be able to bring the left foot up to meet it, then up with the right foot again, and then drag the left up to meet it, etc. I guess from my neighbors' viewpoints, I'm at my pathetic worst when I'm struggling up those steps.

But tonight I just automatically walked right up the steps, 1-2-3, just like I would have before MS. Even now, when I get up from this chair to walk across the house to move laundry along, it's unusually easy, no real effort at all. I'd forgotten how that feels. Wow!

I wonder whether this'll last awhile, or whether it'll go away all of a sudden. Guess time will tell. :?

But even if this does go away, it's OK because right now I'm having a great night; a totally unexpected return to "normal", for however long.

Like I said, I assumed that LDN would help me, eventually. But I sure wasn't looking for anything to happen yet, figuring that it'd take ages to correct my immune system in any tangible way.

I'm ordinarily very cynical about miracle cures and whatnot, and I sure want to be objective about this, but I hadn't even dreamed of feeling "normal" again, even briefly....
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Postby TIMGDI » Sat Mar 05, 2005 3:29 am

Hi Folks,
I had a GREAT holiday in Florida. Everything went well good food,spot on weather and people great :lol: .

I did not see a doctor over there but saw my own neuorolgist on my return to the Uk and he gave me script for LDN. I ordered it last Thursday and it arrived on Tuesday.
I've started on 3mg, so far no side effects and possibly several positive things but early days yet so I don't want to say too much yet :wink:
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LDN update

Postby Andy » Tue Mar 08, 2005 3:57 pm

:D Been on LDN 3mg now for one year and have no intention of stopping, the nightly visit(s) to the bathroom have ceased and the feet/ankle pains have nearly all gone...just a little bit of an ache now and then.
I still need two sticks to get about outdoors but only one indoors....and when around shops I use the wheelchair.
Off on holiday/vacation in four weeks to Scotland....this monster is not going to stop me :twisted:
Even had my car converted to hand controls and I now have alot of my independance back.........I would encourage converting to hand controls if foot controls are difficult....very easy to drive...if anybody wants more info on this please reply here :wink:
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Postby Arron » Tue Mar 08, 2005 4:18 pm

Andy, so wonderful to see you. I remember very distinctly when you first joined us and learned about LDN via the forums. I'm so glad our community was helpful to you.

All our best,
-arron
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby CCmom » Thu Mar 17, 2005 2:08 pm

My son has been using LDN 3 mg since June of 2004. Initially, we saw great improvements, however, he was using Rebif immediately prior to starting LDN, so it's hard to say where the Rebif left off and the LDN started up. :roll:

He had increased energy, no heat intolerance, and overall improved mood. (Depression was very severe with Rebif) He was never able to increase to 4.5, due to excessive stiffness.

In December, he had his gall bladder removed. Several things have transpired to make the deterioration in his health and MS symptoms questionable. He's had other stressors in his life besides the surgery, and has admitted to not taking the LDN as prescribed. (He's almost 17, and some nights it is just out of my control...) He also had to have some 4.5 capsules recompounded into 3 mg caps in order to continue taking it after we lost our phone consult doctor and could not get anyone else to prescribe. So, before I go any further, know that there are alot of factors involved here.

Since December, he has not done as well as he was. He's had transient problems including optic neuritis, numbness, drop foot, etc. and missed alot of school. I cannot say whether it is that the LDN isn't working or whether it is related to any or all of the other factors involved, however, I do know of several other people using LDN who are having problems as well, without the "outside" factors to take into consideration.

Several of us are wondering if your body develops a "tolerance" to LDN. Dr. Bihari claims that "old symptoms" can revisit, and that when this happens, these are not to be considered attacks. Certainly, the symptoms my son has had are much milder than any of his earlier attacks were, but if it is truly halting progression, then I do not believe any of this should be happening at all to people who are taking it properly from a reputable compounder.

I admit that I am also very puzzled by the phone consult doctors seeming to drop out one by one. Granted, I knew it wasn't ethical when I did it, but I find it highly suspicious that they are dropping out, one by one.

My son is still taking LDN. He started Copaxone along with it earlier this week, and he's tolerating that well so far, even giving the injections himself with the auto injector.

I'm not sure what we will do when we run out of LDN. The new neuro is considering prescribing it, but wants us to go without it for a month and see if we notice a difference. I don't have alot of faith in the Copaxone, but I'm starting to feel the same way about LDN, so it's hard to say. Just too many people are having problems with it, and with a relapsing remitting disease, all of the success stories may or may not be remissions. We just don't know. And we won't until the trials are done.

This is in no way meant to bring anyone down or change anyones opinion on LDN. I do believe that it helped my son initially, and so do many others. I do not believe it halts progression, but believe it to be of some benefit to MS sufferers, although I cannot tell you why.

I just think that it's important that we put the success stories and the not -so- successful stories out on the table for all to make an informed decision. With my son and all the things that have been going on, it's hard to make a realistic statement regarding LDN. But too many others are having poor results to suit me right now, so I can't blame it all on the outside factors.

The thing is that when we join these groups for LDN, only the ones who are having good results are still there to talk about it, the others have moved on long ago. LDN is no more of a crap shoot than the rest of these MS meds in my opinion, but doctors don't see it that way.

Good luck to all. I will definitely keep you posted!

Kim
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