Two Week Update

Whew, where did the week go? Both of my sons were home sick this week, so it was almost impossible to get anything done. Craig had bronchitis; Jamie had your run-of-the-mill CFIDS crash. Both are doing fine now. They went back to school yesterday, just in time for a 4-day weekend! This is the first crash Jamie's had since mid-October, and he only missed two days of school this time. Absolutely amazing compared to how sick he was last year.

So, I'm sure you're wondering whether the Valcyte is working for me. I'm wondering, too! I've been on it for two weeks now. From what I'd read, I was expecting a sudden worsening of my symptoms as an indication that the Valcyte was working (this is called a herx reaction, common when treating a long-standing infection). I felt pretty crummy for the first week and a half, with really low stamina. I couldn't really tell if this was my "worsening," though, since I'd been in a crash since January 1. Yes, it was worse than "normal" for me but not much different from how I'd felt all month. I was feeling a little down, thinking I'd had no reaction to the medication at all, and it wasn't going to help me.

Then I began exchanging information with other CFIDS patients on Valcyte. THANK YOU to all the people who told me about the message boards at Immune Support!!! Reading about other people's experiences and other doctor's approaches has made a huge difference for me. If you're interested, there are several discussion threads specifically about Valcyte and other anti-virals. You have to register, but it's free and quick.

One thing I learned is that Dr. Montoya is using a much higher dose of Valcyte in the Stanford trials than I'm on. At first, I worried that my dose was too low, but I've learned that some doctors are using lower doses to try to minimize the initial worsening. I'm also wondering whether a lower dose might be appropriate for me since I'm not as severely ill as most of the people Dr. Montoya is treating. I've had CFIDS for just under 5 years and function at about 40-50% of what I could do before getting sick. It's bad, but I know that there are plenty of people with CFIDS who are much sicker, even bed-ridden. I've also done a lot already to help improve my immune system function, which could help me to better tolerate the anti-viral treatment.

So, bottom line is that I'm still not sure whether the Valcyte will work for me. I had three very good days (in a row!) this week, but I'm crashed today after a shopping expedition yesterday. Next week, I'll go to the lab for blood tests to monitor how I'm reacting to Valcyte, and then the week after, I meet with my doctor so we can decide whether to continue the treatment. After what I've learned this week, I'll also talk to her about the dosing.

If you're interested in learning more about treating CFIDS with anti-virals, Dr. Martin Lerner is another doctor who's done a significant amount of work in this field. His website includes an excellent summary of his research (click on Professional Publications).

So, I'll rest up today and hope for a decent weekend.