1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!

Valcyte - Day 10 and Counting

Blog entry posted by ArgyrosfeniX, Jan 22, 2012.

Hello again,

Today is day 10 for the Valcyte administration, and things have been going pretty well.

Most of my symptoms resolved around day 6-7 aside from generalized weakness. The was a wonderful feeling of energy even though there wasn't anything in the tank to back it up. I was able to do more around the house yesterday - able to help the wife clean house some and shoveled our short driveway (just long enough to have a full sized SUV on) while being only moderately short of breath. Am having a bit more difficulty today as I changed my dosing to 450mg twice a day on day 8.

This week at work should be relatively easy, so the dosage was changed to allow me to recover before next week's blitz of activity. Hoping to be fairly recovered by then. Maybe this will work out (crosses fingers, toes, arms, legs and eyes)...

There has been some thinking that if the energy comes back in the next few weeks and appears as if it will stick around for a while, that I might be able to exercise and regain some of the muscle mass I've lost the past 2 years (wouldn't hurt to loose some of the fat either). If that works out, I'm considering changing jobs to something I enjoy better - not one where I'm there due to energy restrictions. Would really like to go back to an ER job. :D

One other item to mention - I slept the other day! Like 11 hours straight! Haven't slept more than 4-6 hours at a time in several months. Felt so good - would love to have it happen more often!

=== BY THE NUMBERS: DAY 10 ===
Weight: 262.6 lbs

Activity Level: 4 - likely due to increased dosage

Current Dosing: 450mg, twice daily

Lab values of note: CBC - completely normal range for all values
ArgyrosfeniX

About the Author

Living with ME/CFS since the age of 16 (1989). Was persistent enough to get three Associates Degrees and get married through it all. Working hard to keep going for as long as I can before becoming bedridden. Current treatment plan is to use Valcyte for 2 years starting January 13th, 2012, then possibly switch to Valtrex for an indefinite period. "Here I am trying to live, or rather, I am trying to teach the death within me how to live." ~ Jean Cocteau
  1. ArgyrosfeniX
    Thanks for the information aquariusgirl! I'll be keeping a close eye on my Liver Function Test results. They were in the high range of normal just prior to starting. Hopefully, they won't elevate too badly!
  2. aquariusgirl
    MoJOey has posted something about this drug shutting down some pathway...so he said he was planning on supping methyl b12 and folapro/metafolin.
    As you prolly know.. a lot of us have have a block in the methylation pathway @ methionine synthase. We need to supp B12 and active folates to get it working. You need this pathway to work for yr detox system tto work. I think that's important when you're on drugs and experiencing die off..
    you need the liver to be able to clear whatever is being killed off...
    I just upped my dose of Valtrex & the extra burden killed my liver....and messed up my gut.. so I think liver support is important. For me, I'm gonna need Rifaximin to control the dysbiosis which is being aggravated by die off from Valtrx.
    Your mileage may vary.
    A muggy head can indicate a backed up liver.
    A hot castor oil pack can help in a pinch....I'm sure Brent is right.. It's the drug... but it may not be just the drugs effects you are feeling...

    FWIW>
  3. ArgyrosfeniX
    I feel absolutely awful on day three with just 450 mg...This terrible heaviness in my head.I wonder if it does not go with Cymbalta. Does it get easier or should I just stop it!
    muve - I highly recommend continuing for more than one week. That first week is the worst part of it. What you are feeling right now is likely the medication doing what it supposed to do - killing off viri! If you can hang in there for a bit long, it will very likely be worth it for you. At the time of this post, I'm about 2 1/2 weeks into the dosing - added 450mg after 1 week so now at 900mg daily. I haven't felt this much potential in a long, long time.

    I wish you the most luck in the world. Hang in there!

    Brent
  4. muve
    I feel absolutely awful on day three with just 450 mg...This terrible heaviness in my head.I wonder if it does not go with Cymbalta. Does it get easier or should I just stop it!
  5. justy
    Thanks, thats useful information. I have been ill since 1996, also on and off, so its hard to pinpoint exactly when it started. I'm at my most ill the last 3 years, although i was lucky to function at near normal for about 8 years.
    Take care, Justy.
  6. ArgyrosfeniX
    justy - I have consistent problems with my CFS since 1989. The symptoms have waxed and waned at times, but it has always been there so I'd have to say "ongoing" to your question. I've been lucky that I found a doctor that didn't require a positive test to prescribe - never tested positive for anything... All I had was my history which started as an active viral infection. Not sure how it works over in the UK though. Getting the prescription this time was much easier as it had already been proven to work for me from the first round of Valcyte in 2008. Don't remember my doctor needing much convincing the first time either -> just handed him a copy of the Montoya preliminary study and said "I want to do this."

    Good Luck!
  7. justy
    Hi, sounds like it's going well. Im keeping all my fingers crossed for you too, but not my eyes - they hurt enough already!
    I forgot, but from your earlier blogs did you say that you do have an ongoing or reactivated virus? sorry i dont seem to remember. I have thought about getting tested and trying to get a doctor to prescribe antivirals, but thats going to be pretty difficult to figure out here in the uk, although im beginning to wonder if it would be a good idea.
    Take care, Justy.