Ahhhh, this seems like a nice and quiet place to post ;>)
Just to say that I vary my dose between 3 and 5 ml per night. I take LDN in solution (aka liquid LDN), which is 1mg LDN dissolved in 1mg solution, the physics or chemistry of which is beyond me
The reason I do this is that I feel better at 5 ml - but struggle to sleep. Since I believe that sleep’s very good for a body, particularly one under attack, I actually spend most of my life on 3 ml.
I’ve been on LDN for over 5 years now and had only one disabling relapse in that time with no progression. But I’m RRMS and follow a relatively healthy lifestyle in between packets of crisps and bottles of wine.
CRISPS…I DO NOT BELIEVE IT!!
You probably wouldn’t believe it if I told you I’ve been known to steal nachos from people’s plates in restaurants before now
It’s a terrible weakness to have to live with.
Well, it’s been excellent for my bladder. I’d recommend trying it for that alone. I do sleep better and I’m about as accurate as Lollipop in my measuring, but that’s because I have to make up my own from Naltrexone capsules (long story but LDN doesn’t exist as a listed drug everywhere).
I take it with Rebif (beta-interferon) and it’s fine to take both - just check out the excellent information at the LDN Trust website.
I take Rebif to stop my relapses and LDN to help with symptoms. I’m not going to make any claims for it, as all I can do is talk about it from my own experience. As it happens, it turned out that my MS isn’t progressive, but it’s been 12 years this year and it took 9 years to discover this.
However, just because my MS isn’t progressive, doesn’t mean that it’s not aggressive and I have had some rotten relapses - the last one was in 09, on LDN alone as I’d run out of Rebif after a move. I won’t risk LDN on its own again- but that is just my experience. Unfortunately, all you can do is try it and make up your own mind -but be prepared to take the risk of relapsing.
And crisps? Lolli - you bad girl!
Just wondering what symptoms improved with ldn. I want to try it but I am nervous.
My problems are, fatigue, bladder, cognitive issues, weakness in right leg, lightheadness. Feel like I have the cold/flu everyday. I feel crap everyday and only that I have energy at nightime for a few hours.
I am not on any DMD at the moment.
Advice would be great.
The rather unhelpful answer is that ldn can help all of those symptoms, or none of them. The only real way to find out is to try the drug, and the good news is that it is highly unlikely to any harm. Take a look at the testimonials on www.ldnresearchtrust.org and see if you think it might help.
All anecdotal evidence of course, but quite useful nonetheless.
That I do believe - but I know you tried to avoid the cheese and just get to the jalopenos
I have too much adrenaline - it has caused terrible problems over the years and LDN does seem to help with the endorphin boost that it gives me.
I’ve had several investigations for a tumour (called pheochromocytoma) but no one’s found it yet. Lots of 24 hour urine collection to assess the levels of adrenaline, but they can’t find the tumour and have decided that it’s from an MS lesion somewhere.
When I’m tired or have a little blip of MS symptoms, I get a horrid pulsing feeling up my spine, which actually makes me twitch. After so many years, I’ve learned to live with it. I also flush red for no reason and get hot, but any stress makes me feel terrible - but this isn’t permanent. It’s only when the adrenaline levels rise or the MS becomes active.
In my case, intravenous steroids stop the adrenaline levels from making my blood pressure worse, so I have orders to go to hospital when/if I have another relapse. I haven’t had steroids since 09.
When I had oral steroids, this type of steroid delivery seemed to make the MS symptoms much worse.
One of the awful true-isms about MS, is that what works for one person, won’t for another. You’ve had a massive dose of steroids, which is enough to mess anyone’s body up.
I’d give LDN a try. It can really help with symptoms. It can make them feel worse and all you can do is try it and see - but start on a low dose or ask for help at the LDN Trust.
I can explain the rational for double dosing since it was explained at the Birmingham LDN conference.
One explanation for what makes LDN work is that it boosts your endorphin levels. However whilst this may make you feel better it may not be the actual mechanism that controls sicknesses like MS.
Some work going on at Stanford University in connection with Fibromyalgia suggests another factor rather that endorphins may be the real sickness control. The theory then goes on to say that the problem with a single dose per day is that the endorphin boosting effect is what becomes the limiting factor to the dose that can be taken. Since this effect only lasts for about 4 hours then if you take more than one dose a day then you can increase the intake of the active ingredient and achieve more benefit or indeed some benefit for those who do not benefit from one dose of 4.5Mg.
All this is unproven and of course it makes the assumption that LDN works the same way on MS as it does on Fibomyalgia which is again unproven.
However it does seem that some people with MS that did not respond to the single dosing regime do respond to double dosing in this way.
Clearly if you try experiments like this on yourself without expert guidance then there may be unknown risks but on the other hand if you are going downhill and do not respond to LDN and can not find any treatment you do respond to it may be worth trying.
However if LDN is working for you why experiment i.e. if it is ant broke don’t fix it.