I think that getting the dose right is key though. For me it was the sort of thing I had to build up slowly and my preferred dose is now 3.5ml (3.5mg) per night. If I take too much I noticed that my mobility suffered a bit and I felt more tired than normal.
The research I did at the time also suggested that you are better off taking it in liquid form as some of the filler material used in the tablet forms wasn’t always up to scratch.
I originally got my script via e-med (http://www.e-med.co.uk) and the drug from Dicksons Pharmacy in Glasgow UK, but now that my GP has heard about my results she now does the script for me bless her.
Hope this helps and good luck to everyone!
- Getting to Know You...
- Posts: 11
- Joined: Sun Aug 09, 2009 2:00 pm
- Location: The Netherlands
It's a hard decision to change/lower dose or quit completely.
Are there more people with PP with increased symptoms after 1.5 month, continued and now are glad they did?
I thought that I would chime in. I have been takin LDN since October. I started with 1mg capsules and felt stronger than I have felt in a long time.
I then assumed that more would be better, and had my neuro prescribe me 3mg, in liquid form. Since taking the 3mg, I have found myself regressing.
I just ordered another batch of 1 mg capsules, so we'll see if that brings me back to where I was.
I was looking forward to the vivid dreams, but I haven't experienced them.
By the way, when I asked my doc, (Dr. Calkwood in Mpls), for a script, he was leary about its effectivenes, but he said, "Well it can't hurt you," and wrote it up.
As long as there is a compounding pharmacy near you, there shouldn't be any problem getting it.
- Family Elder
- Posts: 2197
- Joined: Mon Sep 11, 2006 2:00 pm
- Location: Dayton, Ohio USA
Apparently, an initial increase in spasticity is not uncommon.
Here's my experience:
DON'T TAKE IT DURING THE DAY.
I won't do that again. Made me feel like shit every afternoon. After talking with the man Skip, I have restarted in the evening again and it's much better. Still waking occasionally at 4:00 or 4:30, but amazingly don't feel unrested (I get up at 6:00 anyway). So far I like it.
- Family Elder
- Posts: 1125
- Joined: Wed Jul 29, 2009 2:00 pm
- Location: Slovakia, Europe
I had really big problem with fatigue in 2008.
My symptoms were even stronger the first day with LDN. I was starting to get better - to have more energy since the second day. My fatigue was getting better.
I was taking 3mg the first 14 days and after 4,5 mg always after 9 pm. I have not had any strange dreams.
I am VERY happy with LDN.
I do not plan to stop that soon.
No relapse since I started with LDN - it means for a year.
I order it via e-med as well.
No way I can get it in my country
I have never been on any DMDs.
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
It took maybe more than 3 months for me to notice, but I mostly see the difference if I miss a day - I feel much weaker and I need at least 2 more days to recover...
Very cheap and no any side effects; so it is a yes (for me). But everyone is different.
I never went on any of the CRABs medications, as I wasn't diagnosed in the same country as where I lived, and finding a local doctor took a long time. By the time I did, I was waiting for a stem cell treatment.
After the treatment, I stopped taking the LDNs. It seemed silly. Now, I will note at this point that it takes 6 weeks or more for results from a stem cell treatment to start to show.
In two weeks my spasming increased from a rare event to a constant problem, and I started falling so often while walking that I reluctantly bought a walking stick to keep on me.
Once I realized that this might be a change because I stopped talking the LDN pills, I started again. In days my spasming was down to even less than it had been before, and while I am still carrying the walking stick with me, my legs seem to be as reliable as they were before the infusion.
I didn't realize how much the LDN was doing for me. Where I thought it was just doing no harm, I now know that it was helping me significantly.
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