Sunday, October 19, 2008

I Wish...

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?

1 comment:

Renee said...

Reading about how discouraged you have been brings back the many times I myself have said,
"what's the point". It is hard not to get discouraged when we struggle with so many symptoms that are so devastating. It is impossible to be positive all the time ~ and it is not realistic either. Enough on my thoughts ....
What I wanted to share is that if and when you decide to have another Lyme test I would seriously recommend it be an IGENX lab test and that you go to a Lyme Literate doctor for this test and treatment to follow, as the diagnosis has to be clinical mostly due to how quickly the Lyme leaves the bloodstream and goes into the muscles, brain, etc. I hope I am not being to "pushy" here. I just know so many who were told the tests were negative when they did have lyme and years were wasted before they could get help. Like me :)
My thoughts are with you this day.