CFS: Antivirals: Improvement and Deterioration

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Dec 1, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. just wanted to give you and update on my antiviral therapy.

    i improved to about 30% about 3 weeks ago but since then, have deteriorated almost to my pre-treatment levels.

    i am experiencing a lot of nausea as well.

    i do not understand what is going on. i am no longer on valcyte due to liver enzymes. i was taken off the valcyte about 2 weeks ago but do not really feel that there is a correlation with my present state. i am on valtrex as well.

    i had a little stress 3 weeks ago with the death of my boss but not enough to have caused this.

    i am seeing dr. lerner this wednesday; i am worried that he will order more expensive testing :(

    i do wish he tested for enterovirus...


  2. deserella

    deserella Member

    I am so sorry to hear you are not doing well. I still felt awful after getting off valcyte. It took a good 2-3 months to get ride of all the daily side effects.

    I've been off valcyte since june and the biggest improvement I notice is my mood. I am not an emotional roller coaster. The valcyte does inflame the amygdala.

    I know my energy has been so up and down. For a few days I will have consistant energy and then I will be confined to the house for a week. It feels like my body want to get to better, but it's not quite there.

    I'm going to throw some ideas out there too. Are your salts low? If your blood pressure is low you need salt and to drink lots of water and it can really help take a layer off the fatigue.

    Has there been a change in the weather where you live? Do you have sinus problems- that can make you tired!

    God Bless and I hope you have someone to take care of you!

    love deserella
  3. ladybugmandy

    ladybugmandy Member

    hi all. thank you for the posts.

    i did not know valcyte inflames the amygdala...interesting..

    anchor...speaking of the heart, i did wake up on a few occasions with a dull ache on the left side of my chest and down my left arm.

    funny cuz the last time dr. lerner took me off valcyte i actually started to feel better.

    it is so hard getting better, start making plans for the future (again) and getting worse again! arghh

    will let you all know how the appt goes...

    all the best
  4. jasminetee

    jasminetee Member

    I know how disheartening it is to make plans for when you feel better only to end up feeling worse. CFS has the ability to overcome anything we try and that's what makes it so frustrating. It's possible that Valcyte did help your body but that CFS came back stronger again.