just got LDN Rx

DizzyDean · Family Member Joined: Jun 02, 2007 Posts: 30

Another important factor is to make sure that your pharmacy chooses an appropriate filler. I do not know the details but I am pretty sure that delayed release is not appropriate. You might contact Skip's Pharmacy in Florida, I believe that they use a lactose free immediate release filler.

Mardie · Getting to Know You... Joined: Nov 30, 2007 Posts: 23

Yes, fast

release filler is correct. Skips pharmacy is a good choice and they are very experienced with LDN. Good luck! Hope your results are great! Mary Very Happy

jake · Getting to Know You... Joined: Sep 07, 2007 Posts: 14

7 months now on LDN. Still having occasional nights where I am nearly symptom-free. It happened once relatively early in the night, while the kids were in bed but still awake. One of them saw me walkng past his bedroom w/ no cane, walker, or anything, and he sprang up out of bed & made the frantic announcement to his siblings. They were so happy. That experience alone was worth all these months.

Anyhow, I just got my dose increased to 4.5mg (thanks, Mardie! Wink

). The new Rx hasn't even arrived from Skip's yet. I'll post sgsin w/ any changes in symptoms.

jake · Getting to Know You... Joined: Sep 07, 2007 Posts: 14

Another month, no change from previous.

jake · Getting to Know You... Joined: Sep 07, 2007 Posts: 14

10 months total on LDN, continuing to deteriorate, MS wise. I'm going off LDN. I wish everyone luck, but it's doing nothing for me.

Tekla · Newbie Joined: Jul 27, 2008 Posts: 5

Hi - I've been taking LDN since summer of 2005. I started at 3 mg, went to 4.5, then back to 3. The reason why I reduced the dose was a recommendation from the main website that persons experiencing spasticity due to MS should stay at 3 mg. I believe it makes a difference.

I've experienced some increased disability since 2005 and started Copaxone, but I still take LDN for its benefits on fatigue, bowel and bladder control, and mood. It also seems to boost my metabolism.

Skip's uses Avicel for filler. Here's a good explanation of fillers: http://www.gazorpa.com/LDNFillers.html

If you battle Candida on a regular basis, you might request Acidophilus as your filler. I always prefer that my pills multi-task. Laughing

watergypsy · Posted: Wed Jul 30, 2008 5:02 am Post subject: ldn not working as well as it did

Jake, do you remember this 2007 posting of yours:-

Posted: Tue Nov 06, 2007 5:23 am

It happened again last night. Same time as when it happened before(approx. 1AM), got up to go to BR, walked length of house twice w/ no aid.
________________________________________

Still looking for answers, I found it trawling through old postings – now compare it with mine of Thu Jul 21, 2005

“The thing that puzzles me is that, whilst I need a walking stick if out during the day and can cover only a relatively short distance, from about 7.30 pm there is a marked improvement. Now, this is BEFORE I take my daily ldn. If I went out in the evening with my husband, I would not need the reassurance of the stick.

Even stranger, between 9.30 pm (30 mins. after ldn) and bedtime (around midnight), I can walk a quite brisk ½ mile or more, without any help at all because this improvement increases even more from about 15 minutes after taking my 3mg
I can’t decide if this is because last night’s ldn is wearing off, thus causing my endorphin level to be still falling or because today's 3 mg. is already having an effect. The improvement is wonderful, albeit not a lot of use if you live where, for most of the year, it is dark at that time and the normal working day is finished!”

Have you figured it out yet Jake? I’d really love to know because this is doing my head in. Like Tekla, I have reduced to somewhere between 1 and 2 mg because of dreadful spasticity and I’m using liquid now instead of capsules. I’m terrified to stop altogether because I could not bear the return of the fatigue or the bladder problems.

I have heard that using a transdermal form of ldn removes the spasticity altogether because the ldn is not going through the gut but I cannot find anyone prepared to supply this to someone living outside the US.

Thoughts anyone, particularly anyone who is using ldn without it causing legs to behave like fence posts!

wg