Third day on Valcyte. So far so good.

[RUkiddingME]

I know I posted this on another tread last week, I just pray so hard that all you Valcyters out there can experience the improvement I'm going through right now. It's not a dream. Even this week (week 16) II found myself standing in the garage talking to someone and realized I had been standing still for at least 15 minutes without feeling I was going to collapse. I had not felt normal standing up in 3.5 years. OI was one of my very first symptom when I got sick. Good luck, I want so bad for everyone to improve on this stuff!! I was practically in a coma for 6 weeks and one day I got up and the magic started.
http://forums.phoenixrising.me/index.php?threads/my-possible-valcyte-miracle.22847/#post-349928

 

[vamah]

I know I posted this on another tread last week, I just pray so hard that all you Valcyters out there can experience the improvement I'm going through right now. It's not a dream. Even this week (week 16) II found myself standing in the garage talking to someone and realized I had been standing still for at least 15 minutes without feeling I was going to collapse. I had not felt normal standing up in 3.5 years. OI was one of my very first symptom when I got sick. Good luck, I want so bad for everyone to improve on this stuff!! I was practically in a coma for 6 weeks and one day I got up and the magic started.
http://forums.phoenixrising.me/index.php?threads/my-possible-valcyte-miracle.22847/#post-349928

Thanks for the encouragement. I am feeling discouraged right now because I was feeling a lot better for a couple weeks, then I got back from a short vacation, completely crashed, and have felt awful since. I know it is my own fault. I felt good and I wanted to act like a healthy person so I did and now I'm paying for it. I have been on Valcyte for about 8 weeks now, so I know it's too early to expect to feel a difference, but I am an impatient person! Having a really hard time with muscle pain that makes it even harder to sleep than usual and no OTC paid meds seem to do any good at all.

 

[Matt_C]

can u tell us what u have been tested positive for eg cmv or hhv6 etc and any nk function testing?
Thanks for posting your experience, i hope u continue to post on this has all these experience help others make better informed decisions about this type of treatment. I hope u improves heaps, all the best.

cheers!!

Hi heapsreal, i'm from Melbourne and about to start valganciclovir (already on valaciclovir). I'll write a post to share my experiences, which so far are very exciting. I was just wondering where you order your valganciclovir from? I've been speaking with northwestpharmacy.com as they ship to Australia and also accept credit card. Their prices aren't the cheapest online and they are yet to inform me whether they can fill the prescription. I don't mind paying a bit extra to buy from a reputable company.,

Thanks