When I started this blog I was just about to start treatment with Valcyte. But a twist in the road led me to treating lyme/babesia for the past 5 months.
Now I'm back to the Valcyte question. My doctor is an integrative doctor who specializes in cfids, lyme, and other chronic illnesses. He isn't hesitant to recommend alternative treatments but also relies on western medicine.
So I took notice when he said he thinks the virus (s) have a stronghold on me. It was pretty clear that not only did he want me to start Valcyte but he wanted me to start treatment now. There was a bit more of a sense of urgency about it then before.
I've been doing a lot of research again. It's a big tough decision. It's a toxic drug. Recovery can be dramatic for some though some people have had no result and some have become worse (small minority I think). On the one hand I have nothing to lose. On the other hand if I lose what little bit of functioning I have it's everything to lose. There's also the risk of cancer with the drug yet the risk of developing cancer with these viruses and my family history is most likely equally as high.
It will be interesting to see the results of the RNase L panel. I have to say I'm pretty tired of doctor's appointments, getting blood drawn, taking medications, herxing, dealing with side effects etc... but if it will get me better....
I did a 24 Hour Urine Cortisol testing starting yesterday and finishing this morning. Weds I did bloodwork to test for ACTH levels. Both of these tests will test my adrenal functioning.
For 24 Hours I had to pee in a cup and then keep it all stored in a huge vibrant orang container marked biohazard. Today I went to the lab to drop it off. Unfortunately there wasn't a parking place in front and I ended up parking a couple blocks away. It was a bit embarrassing walking with this bright orange container. I'm sure people driving by or passing me on the street didn't know I was walking around with a gallon full of urine.
Then I walked into the usually quiet lab only to find it crowded. Almost every chair was full. I walked up to the counter with my huge container full of pee hoping the lab tech would just take it from me. Nope. I had to sign in and then sit there. Amongst all those people. With the big orange container full of fluid marked biohazard sitting on my lap. I tried not to look people but I couldn't help notice people glancing over out of the corner of my eye. I'd quickly look at the person almost daring them to ask me what it was. They'd look away just as quickly. I hadn't showered. I didn't look well. I was dressed in sweats. About 3 people entered the lab at the same time. All of them had to find a seat. There was an empty one next to me. It was almost like musical chairs. Two of the people darted to the chairs farthest away from me and one unlucky man had to sit next to me. Boy did he move quickly once another chair opened up. I'd have done the same thing. After 20 minutes I was able to turn in my urine and leave.
It was quite humbling.
I haven't been feeling well. That's an understatement. It's clear that a virus has reactivated. I have a virus lodged in my brain. It freaks me out sometimes to think about it but ironically the freaking out is partly due to the infection itself. It's almost like reliving that moment in ET over and over. The one where young Drew Barrymore screams at seeing ET. ET in turn screams at her and they end up scaring each other. It's like the infection itself creates anxiety. The anxiety creates these interesting frightening potential scenarios in my mind. I get more anxious and then I'm off and running.
Thanks goodness one of my sisters' gave me a Playstation 2 for my birthday. I have to pace myself with it. But it sure helps break the cycle I can get into during the day. It's addicting.