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 ridden, unable to do much of anything except eat, personal hygiene and watch about 30 minutes of TV per day. Meals brought up to me. By the Thursday I am really worried about the upcoming trip on Saturday as I am not seeing an end in sight of this crash. I wake up on Friday morning and feel somewhat better. I am able to finish the packing I have been working on slowly for weeks, I am moving around better and feel more awake. Not to gross anyone one out but on that Friday I had three abnormally large bowel movements (viruses leaving body?? Lol). I got up to go to the airport on Saturday and I am not feeling too bad at all! I rested a lot on both flights.
- This is where the magic begins!!! Sunday morningI got up, felt somewhat rested, got in bathing suit and in the pool!!! I was holding on to the floaty and crying tears of joy!!! I had jokingly told someone I was hoping for my own resurrection on Easter Sunday and i think I got my wish!! lol. I had an absolutely amazing week! I was up and dressed every day. I felt more alive than I have in over three years! I even was able to go out for dinner 4 times during the week. I had a good nap every afternoon. I had packed a lot of summer clothes in case, you know, in case of a miracle and I don't spend the week in pyjamas and in bed and I ended up wearing every outfit!! I know you are probably all thinking, vacation, sunshine = feeling better, mind over matter kinda situation. But I have to tell you that I was in Florida again 4 months ago (before Valcyte) and spent the majority of the week bedridden, feeling like crap!
- Back to reality. The trip took us a total of 15 hours to get home. I was mostly in bed for the first several days, so afraid that maybe this past week had just been an amazing dream! Well… drum roll….. By the end of the week I’m back to how I was in Florida!!
- Feeling better everyday. I am dressed and downstairs, able to do a bit of dishes. Went out for lunch! (although I am still getting the sensory overload when I am out in busy surroundings). I am able to read a chapter a day! (had to stop reading well over a year ago). This morning I even cooked breakfast for my daughter.
This is so much more than I could have ever dreamed of! I know it could still be a fluke as there is always some fluctuation with this illness but I truly believe it’s the Valcyte finally kicking in. Ever since finding out about the viruses 1.5 years ago I have been determined to get my hands on Valcyte including flying to the US. Having the identical viral numbers for HHV6 and EBV as the subjects in Dr. Montoya/Kogelnik's original study and not having any co-infections etc.. I always had a gut feeling that Valcyte was for me.
Even if this is short-lived, I am cherishing every new memory I am making outside my dreaded bedroom!!! YIPEE HOORAY!!!
Functioning level: 30%
Labs from November, 2012
Natural Killer Cells: 9 LU
EBV VCA IgG, IFA 1:640
EBV EA 1:160
Positive HHV6 - PCR and viral culture (July 2012)
No swollen lymph nodes
Brain MRI: NORMAL
900 mg Valcyte with breakfast
3 mg Low Dose Naltrexone
5 mg Hydrocortisone
25 mg Trazodone
Valcyte 2013- Week 15
Blog entry posted by RUkiddingME, Apr 20, 2013.