DellaJeanne's Journal

Posted on 06/22/08, 11:35 pm
It's weird but I'm already taking for granted how much better I feel. I forget that if it wasn't for LDN I would be running to potty every hour or two, would be exhausted by the summer heat, would be burning up at night, and would have creeping numbness. It's like a scifi movie where they have an elixir that keeps them forever young and if they ever quit taking it they shrivel up into dust.

  To clarify what happened to me this summer. I got my new script in August and the neuro wanted me to try 4.5. so I asked for them in 1.5 capsules in case I could not handle the larger dose. I also changed from my local compounding pharm to Skips. i tried the 4.5 two or three nights and the stiffness was bad, so I went back to 3.0. After a few days I felt like the change of pharms was not good. I was having trouble with urinary frequency again. I changed to the homemade liquid my husband takes and stuck with that for a month, but it was not as good as the first capsules. I was also under a lot of stress as my mom was having cancer surgery and all my family was visiting. When I got my second month's LDN from Skips, I tried it again and it was as good as when I first started LDN in April.

Here is the old post about what I just said:

Posted on 09/13/08, 02:20 pm
My first LDN script was called in by my neuro to a local compounding pharmacy. It worked immediately and well to stop symptoms such as bladder frequency, nighttime temp fluctuations and fatigue. When I had to get a new script in July, I faxed it to Skips. My bladder got worse and my legs got hot at night. I switched with my husband who takes liquid LDN he makes himself. Thia was some better and I used it during August, but I was definitely worse than the first four months. I renewed my Skips script last week and tried it again--last night--and it worked great! First time in a month I only got up once at night. It could be a better batch, but I suspect it was that I should have expected a period of adjustment upon changing pharmacies and fillers.

Posted on 09/30/08, 10:43 am
Went to bed at 10 after my LDN and did not wake up til 5:45. Last trip to bathroom was about 9:45, so that was eight hours. Unbelievable.

Posted on 10/16/08, 11:08 am
Yesterday I experimented with my usual dosage, took two 1.5 caps during the day and one at bedtime. Urinary frequency, some fatigue, and hot feet were the result, not as bad as before LDN, though. This made me think that maybe we forget how much LDN is helping and should stop it for a few days just to see how bad off we would be. Not that I'm going to do that, but it is one way of seeing what it is doing for us.

Posted on 10/01/08, 06:22 pm
I've been taking one zanaflex at night since starting ldn. I need to explain that last February I took tamiflu when I caught the flu and while taking it all my spasticity disappeared. I was up to three Zanaflex a day to control it, but I stopped it completely after the Tamiflu. When the stiffness in my legs came back with LDN, I tried different things but eventually went back to Zanaflex--only one at night. Lately I have been going a long time at night without waking to go to the bathroom. However, the Benadryl I take for allergies and Zanaflex I take for spasticity combine to knock me out so that I cannot even move at night. This causes me to sleep in one position and wake up with a stiff neck and sore joints in the morning.

Last night I decided to skip the Zanaflex and found I had a hard time falling asleep, but I was easily tossing and turning and shifting body position. I had thought my disability was preventing that much mobility; however, now I think it was the knockout power of the two drugs I was taking. When I did wake up in the middle of the night and went to the bathroom, I was no stiffer than any night; in fact, I was fairly limber. This is leading me to conclude that possibly the Zanaflex was keeping me spastic. I am thinking that by getting off this med I may return to the looseness and lack of spasticity I had after the tamiflu. 

10/17/08 10:08am

two weeks without zanaflex and I have little spasticity. Last night I went to 4.5, first time to try since August. I was not stiff this morning. This is weird, but I am sticking with 4.5 until further notice.

Third night on 4.5 and all is well. No more leg stiffness in morning than usual and much less than when I was taking zanaflex (tizanidine).