Wednesday, July 25, 2007

Update on my anti-viral treatment

Sorry to be so silent lately. I've been very, very sick. I've probably spent less than 15 minutes total on the computer in the past week, just to quickly check for urgent e-mails. My current rough state might be good news, though.

Two weeks ago, I had a follow-up phone consultation with Dr. Levine. In case you're new to my blog, she's the doctor who tested me for various viruses and for immune system function back in March. She found that I had higher than normal levels of HHV-6 (though my EBV and CMV levels were normal), and we decided I would try Valtrex, an anti-viral medication that works against HHV-6 but is much less toxic than Valcyte (which is effective against both HHV-6 and EBV).

So, I've been taking a low dose (500 mg/day) of Valtrex for the past four months. I have had some mild improvements during that time. The improvement has been subtle, difficult to notice on a day-to-day basis, but slow and steady when I look back at my records (I note how I feel each day, on a 1 to 5 scale, on a calendar). Also, both my husband and my mother commented to me recently that I seemed "more like myself" lately.

When I spoke to the doctor two weeks ago, we decided that I would try increasing the dose since the Valtrex seems to be working and I'm tolerating it OK. So, I doubled the dose to 1000 mg/day. Ever since then, I've had severe CFS symptoms almost constantly - sore throat, aches, exhaustion, sleep dysfunction - all my "normal" symptoms but as bad as my worst days every day with very low stamina. I've spent most of the past week in bed or on the couch (thankfully, my kids have been with their grandparents this week).

The good news (I hope) is that this characteristic worsening of symptoms on an anti-viral medication is supposed to be a good sign. Everyone who's taken Valcyte for CFS has reported the same sort of initial reaction. The theory is that this is a "herx" reaction, a temporary worsening caused by the drug killing off lots of virus in cells and tissues that then floods the bloodstream, triggering the typical CFS over-reaction of the immune system.

Despite my incapacitation, my spirits have been good. I'm hoping that this means that the drug is working for me and that I'll experience some improvement once I get past this stage. I'm sure things will get much more difficult for me tomorrow, when my kids return home. I love them and miss them, but I've really needed this complete quiet and peace this week.

I'll try to keep you posted on my progress and plan to post some general information on viruses, anti-virals, and CFS tomorrow. That's more than enough for today!

1 comment:

  1. You are so strong to be doing this while having the responsibilty of being a mother! I am on week 6 of valcyte, but I am so lucky to be in the care of my parents (i'm only 22). Take care and I hope you start feeling energetic:)