Tuesday, April 10, 2007

Still Here!

Yes, I'm still here. The past two weeks have been a whirlwind of activity here. I traveled to NYC for my appointment with Dr. Levine (more on that in a moment). We went to Maryland for a wonderful, relaxing camping weekend with friends. It was so low stress that I actually managed a 2-hour hike with everyone and still felt good the next day! I was amazed and wondered if that burst of stamina was the result of my brief Valcyte trial...but the past week brought me back to reality.

My boys had their Spring Break last week, so we had a few days at home between trips and then drove 8 hours to visit my family in Rochester for Easter. It was wonderful to see my family, but the trip completely exhausted me. I sleep so poorly when I travel, despite all my various medications that work so well at home (unless we're camping; I do OK in our camper). I was a mess today and spent most of the day in bed, but now I'm beginning to perk up a bit. Can you see why I haven't had time to write?

There isn't much to report yet on my visit to Dr. Levine because I'm waiting for her to call me. I gave her a brief recap of my illness and told her about my aborted trial with Valcyte. She said I could try Valcyte again, this time at the full dosage being used in the Stanford studies. Then she took a LOT of blood to run tests for various viruses as well a a full immune system panel. I was excited about this because I've wanted the immune system panel for awhile now, but my own doctor said she wouldn't know what to do with the results.

So, I'm still waiting for Dr. Levine to call back with the results of my blood tests. She said she might end up trying some other anti-virals or additional medications based on the results. I have a list of questions for her when she calls. I want to make sure I fully understand the risks involved before taking the high doses of Valcyte. At the same time, after this exhausting weekend, I'm eager to try something - anything that might offer some hope. I'm really sick of being sick.

I was catching up on e-mails this morning and saw more useless CFS studies. I'm so fed up with seeing precious research money being spent on proving that CFIDS isn't depression (it's been proven many times already) or on minor treatments or supplements that offer only a tiny improvement. This morning, I saw a very lengthy treatise on "managing CFS through pacing." I don't want to manage this illness; I want to get rid of it! The glimmer of hope that there might be a chance for recovery makes me impatient with all these management strategies (even though they have helped me a bit over the years).

OK, enough ranting for today. I need to go pick up Craig from school. I'll write more soon.


  1. I know what you mean about all the different studies of this and that to help manage CFS. I want a cure, too!
    Glad you could see the doctor in NY. Will be anxious to hear more.

  2. Anonymous8:37 PM

    Wow to be able to go on a 2 hour hike, to travel out of town to a CFS expert, to be sick only 5 years - I know it is difficult and you want your life back. How fortunate you are to have some good time. Try 20 years and too ill to travel and too poor to travel. I'm not getting any CFS care really. Sorry this is so neg. but maybe it will put things in perspective.

  3. Anonymous3:49 PM

    That's great news that you can follow Montoya's protocol with Dr. Levine. I'm on my 4th week with it. I've started sleeping around the clock.