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Blog entries from RUkiddingME

RUkiddingME has a total of 13 entries.

  1. RUkiddingME
    First of all I could just cry because I wrote this huge update, my battery died and lost the entire entry. Oh well what's done is done. I will try to remember most of what I had typed. My short term memory is the absolute pits. Long overdue update... The first month of Round two went well, I actually was functioning better than the past winter and Spring. Month 2,3 and 4 weren't so good. I...
    RUkiddingME, Nov 18, 2014
  2. RUkiddingME
    Hey guys just a very brief update. I originally started Valcyte January of 2013. My doctor origininally didn't want me on it for more than 6 months but since I tolerated it so well, I was able to stay on it for a total of 15 months which brought me to April 2014. I have to say that between October and April there was no more progress, long story, carbon monoxide issue ( see previous blog...
    RUkiddingME, Sep 5, 2014
  3. RUkiddingME
    Sorry I am way overdue for an update. Late in the Fall 2013, I noticed a deterioration and was not doing as well as I was during the summer. I slowly kept getting worse to the point where I was bedridden most of January and February. I couldn’t understand as I have never heard of someone relapsing while still on Valcyte (seems to happen after the treatment is stopped) Turns out that chronic...
    RUkiddingME, Apr 6, 2014
  4. RUkiddingME
    Hello gang, Well, as I had hoped I am driving again!!! :thumbsup: My hubby got me a used little car to get around in and I only drive on good days. I can't explain how it feels after three long years!! Tonight I even drove to our local grocery store and was easily able to walk the produce section. I was squealing with joy and my 16 year old daughter was afraid people would think I was crazy!...
    RUkiddingME, Oct 5, 2013
  5. RUkiddingME
    Week 34:thumbsup: Well guys you guessed right! I haven't been updating my blog because I am too busy living, what a feeling!!! Having been stuck in a house for 3 years, unable to do anything, the majority of the time being mostly bedridden and unable to look after myself, this improvement is miraculous. I have improved since my last update. Still hard to say what level I am functioning at...
    RUkiddingME, Sep 1, 2013
  6. RUkiddingME
    Hello Gang; Sorry I haven’t posted any updates lately. I think I was waiting to see if there would be more change in my improvement, I also wanted to wait to receive all my lab results. I am still doing really good on the Valcyte with no side-effects whatsoever. I went from being bed ridden 90% of the time before Valcyte to being out of bed and dressed most of the day with a 2-3 hour nap in the...
    RUkiddingME, Jun 2, 2013
  7. RUkiddingME
    Hi gang; I just typed a real long update and deleted it by mistake so I’ll try to remember what I wrote. I have been delaying posting an update in case I would jinx my miraculous progress but I think it’s safe to say that VALCYTE IS WORKING!!!!! RECAP: Week 1-6 no side-effects, no worsening (able to get downstairs a couple of hours a couple of times a week) Week 7-12 Completely bed...
    RUkiddingME, Apr 20, 2013
  8. RUkiddingME
    Hey gang, just a quick update. I have been completely bed ridden and not doing well at all for 6 weeks. Not seeing an end in site. I'm leaving for vacation on Sat morning. Wish me luck because I have no idea how I'm going to pull that off. I am still hoping for a miracle.
    RUkiddingME, Mar 28, 2013
  9. RUkiddingME
    Hello gang: I am still tolerating the Valcyte itself very well. My labs remain completely normal. Week 5, 6 was more of my usual ;able to get downstairs in my house a few hours a week and a couple of short outings outside the house (quiet meal/medical appointment). I did have a few short dizzy spells and some head tightness episodes. Week 7- Caught my very first cold in 3.5 years (since onset...
    RUkiddingME, Mar 11, 2013
  10. RUkiddingME
    Hello Gang; I can't believe I've already been on Valcyte for one month. I am now down to 900 mg once daily (with meal) and still having no problems. Sometimes I wonder if the pharmacist messed up and gave me suger pills because I'm tolerating this way better than I ever dreamed of! :thumbsup: I had my last weekly labs done on Sunday and haven't heard from my family doctor which means...
    RUkiddingME, Feb 2, 2013
  11. RUkiddingME
    Hello Gang: I'm thrilled to report that there is nothing to report!!! I'm on day 17 on the loading dose of Valcyte 900 mg twice a day and I have not had any problems whatsoever. I just got the results of my weekly blood work and EVERYTHING is NORMAL!!! Even my Lipase level that was quite elevated last week is right in the middle range of normal. I'm not sure what all this means because for a...
    RUkiddingME, Jan 22, 2013
  12. RUkiddingME
    Hello gang; I have been on Valcyte for a week and so far so good. I have had no side-effects whatsoever from the medication so far. I did go for my first weekly blood work yesterday and just got a call from my doctor's office asking if I was having abdominal pains because my Lipase level is high. My GP had checked off a lot of tests and I'm pretty sure I've never had this test done before so...
    RUkiddingME, Jan 14, 2013
  13. RUkiddingME
    I am finally on Valcyte and will be blogging my experience on this site, good or bad Here's a little bit about ME I am 44 years old. I have had CFS for more than 3 years. Before I became ill I had a life that was amazing in all aspects, family, work, social life and health. I had a great casual job in the medical field, I attended boot camp classes twice a week, I played on a recreational...
    RUkiddingME, Jan 14, 2013