Saturday, May 31, 2008


This might be an interesting post. My brain fog is really bad today along with some weird mood symptoms which turns out can be more signs of herxing. I have felt awful, awful, all day. I couldn't listen to music and I've mostly layed silently here on the couch. I don't have the muscle aches but the only way to describe what I've been feeling is that I never want to feel it again. I couldn't sleep last night-last time I looked at the clock is was 2:35 a.m. even with the Doxepin. I now know it was a precursor to a bad day.

I really get it now about how you can tell that kids don't feel well sometimes only from their mood-they get irritable, apathetic, etc...It seems that my age has changed. The second number is now silent so I'm four. The second number just no longer exists. I find myself saying and doing things that I probably did when I was four, or um, maybe younger. The second number acts as a distant observer watching myself but powerless to exert any influence about making me act my current age. In light of the 5th Amendment (is that the one), I won't cite any examples. We'll just leave it at that. 'nuff said.

I was looking more closely at my bloodwork and the numbers tell a different story than what I originally thought when I first saw them. My white blood cell count has dropped in the past few months-from 7.1 to 5.8 which brings it to the low normal range. With this illness anything near the high/low range is actually considered abnormal. I know enough about bloodwork to know that some fluctuations are normal but this drop needs further investigation. Also, my tsh level is rising from 2.72 to 3.77 which, according to the new reference range set by the endocrine association is considered high which means my thyroid is not functioning properly. Darn it. When I talk to the doctor on June 17 I'll ask him about thyroid meds. He had suggested a trial of thyroid medication during my initial evaluation. I already know my adrenal glands are shot. The other significant change is my platelet count has dropped from 272 to 239. I don't know what all the blood stuff means but I do know it means my body-every system- is being affected by some pathogen, most likely multiple pathogens. In fact the whole cbc panel has decreased but the other decreases are not significant.

I finally heard back from the director of the HHV-6 Foundation. I emailed her again with my new test results. Her opinion was that my HHV-6 Titers are too low to warrant going on Valcyte. That coupled with my dropping white blood cell count means I will have to find another way to get well. Valcyte can cause white blood cell counts to drop to dangerously low levels. She made suggestions about more tests to get and again stressed getting an endoscopy to test for enterovirus. She also recommends testing for echoviruses, and something else.

Each time I think I'm on one path towards getting better, the road changes and I find I have to negotiate different territory. I just want to have something that is treatable. As I was trying to get to sleep last night I found myself obsessing about what more I can do to get some improvements. I know I need to do something about my immune system. It's not working right.

I don't understand why this had to happen. I just don't.

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