I'd love to be one of those people that finds nothing but positive in everything. Feeling positive feels quite elusive these days as I find myself day after day back at square one.
I read Sue Jackson's essays and blog posts (is that the right term) about despair and other emotions that come up with this illness. It was really quite good. I recommend looking up the links she provided. There is also a book-shoot-I completely forgot the name but it looks good and I plan on ordering it from amazon or better yet-maybe the library will have it.
I'm feeling quite discouraged intermingled with intense irritation/agitation that feels beyond my control. I'm questioning my doctor's decisions. I want to be tested again for lyme. I want a second opinion. More than anything I want to have a sense of control over my life. Control is really an illusion when you think about it. I certainly thought I had everything under control. I certainly didn't expect this. And I certainly didn't expect to be dealing with this for another year.
I've been doing relaxation exercises while listening to my ipod on a daily basis. Today I didn't mainly because I'm having those feelings of "what's the point."
I've been doing a lot of research hoping to find some answers. I had a dream awhile ago where there was a pill that combined an antiviral, l-theanine, and an anti bacterial. I remember being really excited about this medication because it was going to help me. When I got up the next day I looked up l-theanine-I'd never heard of it before. It turns out it's an amino acid that has calming qualities in the brain and can even help boost the T cells in the immune system. Finding an anti viral that treats both HHV 6 and EBV is going to be the tricky part (other than Valcyte).
I emailed a doctor in New York (Dr. Enlander) about a study he is doing on HHV-6 and Valcyte. I was shocked to find a reply this morning. He said that Valcyte should be initiated for HHV-6 titers of 1:640 and above. Why doesn't my doctor know this?