Saturday, May 29, 2010

My New LDN

In August of 2009, my LLMD wanted me to take LDN. I started it in August, but after a couple of nights (I'd guess 5) .... I couldn't continue taking it. It took me until September to actually get the nerve to take the LDN.

Well it wasn't long after that, when I stopped. The nightmares continued to wake me up. I am the kind of person that does not function of basically zero sleep. I'd fall asleep and then have a nightmare or very vivid dream. The dream would wake me up. I would be awake for hours and finally fall back to sleep in which the cycle repeated itself. I mentioned the difficult dreams in the next appointment and I thought if I just tried a little harder it would work. Well, it didn't. I just couldn't function because I wasn't getting good quality sleep.

So I stopped and put it on the back burner thinking that it didn't matter anyways. I began to get a little cocky thinking, what does he know anyways. It's my body and I feel great. So I stopped it. Um yeah. Apparently he knows a lot! (DUH JENNIFER) In March I had my blood work and of course I just found out the results weren't desireable. While I was there for my husband's appointment, we discussed that I have not taken the LDN because of the terrible lack of sleep it caused and he mentioned that in July he would have me start 1mg of LDN instead (which I'm sure THRILLS my reader Anna ... now I'm going back to old posts I remember the messages you left me.)

So when he read the results of my blood work, he immediately phoned in a prescription for the new 1mg amount. Well I decided that this was the perfect weekend to start. So last night, I took a deep breath and a deep prayer and started my LDN journey. First I will say that I did have dreams. I even remember a bit of one of them. It included a really small baby that I was trying to keep safe from four evil women that I met while at Sbarros. They kept stealing the baby and I kept rescuing her. I called her "Squirrel." The other part of LDN that drove me nuts was the NOT sleeping. Well I did wake up a few times last night, however it was storming here. So it very well could have been the storms waking me up. I feel pretty well rested this morning which is more than I ever felt on 4.5 mgs of LDN.

My husband is on the 4.5 and he said the dreams tapered off around week 2 so I'm hoping that after 2 weeks that my dreams will taper off as well. The good thing about the 1mg of LDN is that if in July my LLMD wanted me to try to increase it .. I'd have small increments to be able to try. 1mg to 2mg. So anyways ... wish me luck. I need for my immune system to kick in. I had not really been paying attention to how weakened it had gotten, but in teh last few weeks I keep getting an almost cold. I'll get the "cold" and after a few days, my immune system kicks in to fight it. I feel better for a day or two and then my immune system gets lazy and stops fighting for me so I get a new "cold."

The worst part is that I really want to see my family, but know that I shouldn't be around them for two reasons. One: I wouldn't want to give them something they couldn't fight off. Two: They could expose me to somethings that I couldn't fight off. Sometimes I think I should just live in a bubble. :P I'm so proud of me though. I started the medication the very day I got it! That is truly a first for me.

Edited to add:

I wanted to go and find out exactly what number I was looking for that encouraged my doctor to prescribe LDN so I'd know what to look for in the future. The thing he was looking for was "Natural Killer Cells," but what exactly does this look like on the paper? Well in Spectrum Labs, I believe it is the Absolute CD56.

First know that the normal range of Absolute CD56 for Spectrum Lab is 76 to 570. The LabCorp Range is much lower than that at 24 to 406. I imagine the closer to the MIDDLE point of the range would be better so to be clear: the MIDDLE point of Spectrum would be 323 and the MIDDLE point of LabCorp would be 215. (told you I'm a number's girl) With that said, here are my past results. I believe it was in the middle of 2008 when he discovered the benefit of testing all of these CD numbers (like CD 57 that a lot of Lyme doctors put stock into ... my doctor tends to put stock into the CD56 instead). To put all of these in perspective, my husband's number for this same test was 277.

Date: 8-31-2008 Spectrum Lab: 125 Range:
Date: 2-25-09 LabCorp Lab: 132 (range was diff than spectrum)
Date: 8-19-09 Spectrum Lab: 103
Date: 3-10-09 Spectrum Labs: 72 (first time it was LOW)

The %CD56 normal range at Spectrum is 4 to 27. The LabCorp range is much lower than that at 1.4 to 19.4. MIDDLE point for Spectrum is 15.5. MIDDLE point for LabCorp is 10.9

My %CD56 was only 8
My %CD56 was only 6 (at LabCorp)
My %CD56 was only 7
My %CD56 was only 6

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