Monday, May 21, 2007


I know from all of your e-mails and comments that many people are waiting to hear how I'm doing on my new Valtrex treatment. I've been almost afraid to discuss it for fear of setting myself up to be disappointed (or jinxing myself, as my kids would say!)

I had about a month of feeling pretty crummy, but I hesitate to attribute that to Valtrex. It's not known to cause a "herx" reaction (i.e. an initial worsening due to virus die-off), plus I've had a very stressful month. I've had way too much going on with work, home, and family. My husband and I had a minor crisis which caused a significant amount of stress one week. We've also had trips to visit family and family staying with us - both enjoyable but tiring.

Than came last week, my fifth week on Valtrex. I felt really, really good all week long. In fact, I've now had about 8 days straight of feeling good, and I'm cautiously beginning to wonder if maybe this is a positive response to the anti-viral treatment.

The problem is, of course, that CFIDS is defined by unpredictable ups and downs, so it's always difficult to assess the efficacy of a new treatment. Also, I know that stress affects me quite severely, and last week was the first week in a long time when I didn't feel stressed. So, is it cause or effect? Am I feeling good simply because I'm less stressed or am I less stressed because I'm feeling better? See why I've been avoiding this train of thought??

Whatever the reason is, there's no denying how wonderful this past week has been. It's not only an improvement in my physical symptoms. This past week, I have experienced a clarity of thought and an enthusiasm that has been missing for a long time. It's subtle - something I didn't even realize was missing - feeling sharp and engaged. I'm having trouble putting it into words, but I just feel more like me, like the old me, the real me. It makes me wonder how much of the "emotional" effects of CFIDS (feeling down, lacking motivation, etc.) are really biochemical.

I've always said that I've been fortunate to have only very mild brain fog. Sure, I feel sluggish when I'm badly crashed, but otherwise my only indication of cogntitive dysfunction has been difficulty with word finding (a tough one for a writer!). I wonder now, though, whether my thinking has been more affected than I assumed. Many of the people on the immune support message boards taking Valcyte mentioned that the first improvement they noticed was in their cognitive function. Maybe these mysterious viruses affect us even more than we thought.

So, I'm still waiting and watching but feeling pretty optimistic. Now, don't get me wrong - I'm still napping every day, needing at least 9 hours of sleep a night, and feeling worse if I do too much - but any improvement is welcome.

I went for my week 5 lab tests today and will have a phone conference with Dr. Levine next week. I'll keep you posted!

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