Saturday, April 11, 2009

first month starting out with valcyte

*week 1*
so i am starting out on 1 pill a day (450 mg). so far i'm not feeling any difference. with valcyte you are supposed to feel a die-off effect, taking form in increased fatigue, nausea, achiness, headache, weakness, ect.
so hopefully i will be feeling something later on. (funny how i'm hoping to feel worse? haha)

*week 2*
still not feeling much different, although i am sleeping a bit more. on average i would sleep about 12 hours, and now i'm up to about 13 on a daily basis. i still manage to get my daily exercise in. i play frisbee with my parents for about 30 minutes a day. it's such a perfect exercise because it's not too active, but it involves stretching and a bit of cardiac. plus you get constant breaks when you don't have the frisbee.

*week 3*
oh wow. i sleep SO MUCH now. i usually fall asleep about 12-1 am, and then sleep until about 4:30. i don't feel much worse, no nausea, no achiness, but i'd say increased fatigue, brain fog, weakness. not too much worse though. i am having bit of a "bowel change" though. haha.

42 comments:

  1. Hi, Leslie -

    I noticed you recently started following my blog. Thanks for visiting!

    I guess you know from reading my blog that my almost-15-year old son has CFS also (so does my 11-year old son).

    I know two other teen girls who I've gotten to know through my blog. Their moms both blog about their experience with CFS. I thought you might enjoy getting to know them.

    One is Jessica, who's 15 or 16. Her Mom's blog about her CFS is:
    http://www.a-timetoheal.blogspot.com/

    The other is also Jessica (Jessie), 16. Her' mom's blog about CFS is:
    http://livingchronically.wordpress.com/

    (you can let both of them know you found them through me)

    It's great that you're trying Valcyte. I thought you'd be interested to know that the herx reaction is usually worse the longer the infection(s) have been present. So, if you've only had CFS for a year or so, your herx reaction might not be too severe or last too long. Good news, right? From what I've read, treating viral-induced CFS with anti-virals - as soon as possible - is the best treatment. I wish you luck with it - I'll be very interested to follow your progress.

    Nice to "meet" you!

    Sue

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  2. Hi Lesley,

    Just checking in to see how your doing with Valcyte. In case you're having a rough time (I see you started in March or April?) I just wanted to let you know it does get better and its worth it.

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  3. Hi, just started my own CFS blog, and came across yours. I, too, first got ill with Glandular Fever (or Mono) in Nov 2007. Hope you don't mind me reading your blog!

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  9. How's it going with Valcyte? I have EBV and HHV-6 as well and have been taking Valtrex for 3-4 months. I seem to sleep at least 10 hours a day now.

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