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 softball team in the summers x 14 years, I hiked, biked, played golf, sang, played guitar,played tennis, crochet, sewing, modelling, travelling. All done in moderation and for fun. I could be a mom and a wife. I could attend my daughter's functions and drive her to ball practice and spend quality time with her. I could go on dates with my amazing husband and hang out with wonderful friends.
My perfect life has been stolen from ME . My life since having CFS has been non-existent. Within a year of getting sick I was already in a wheelchair, spent 9 months completely bed ridden last year and have been completely house bound for the past two years with absolutely no social life or any life outside these four walls except going to doctor's appointments and travelling to US, doing everything in my power to get better. Some days I have needed help being spoon fed and have to crawl to get to the washroom. I can't read books anymore, listen to music or ride in a car with my eyes open due to cognitive overload. Despite all of this I maintain a sense of humor, great friends and most off all the support of my family. We laugh everyday. I love life and can''t wait to live again.
My current functioning level: 10-15 %
Daily Valcyte Dosage for three weeks(Montoya Protocol)
900 mg with breakfast
900 mg with supper
My viral numbers:
Natural Killer Cells: 9 LU
Positive HHV6 - PCR and viral culture
EBV VCA IgG, IFA 1:640
EBV EA 1:160
HHV6 1:320 Same three numbers to fit criteria for Dr. Montoya's study
No swollen lymph nodes
Labs: High Lipase Level
3 mg Low Dose Naltrexone
5 mg Hydrocortisone
37.5 mg Trazodone
Valcyte 2013- Intro
Blog entry posted by RUkiddingME, Jan 14, 2013.