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Valcyte Round 2 - Month 11

Hello gang,

My apologies for not updating my blog in such a long time. There has been some very good and not so good times and I just didn't quite know what to make of it... Still don't lol. As I promised with this Valcyte blog is that I would write about the good, the bad, and the ugly and that's what I'm going to keep doing.

Ok backtracking to Christmas. I had the best in years! I did crash in the chair on Christmas morning but bounced back. My in- laws spent it with us and I was able to participate in most activities and meals. It was amazing!!

My doctor ordered me to stay on Valcyte an extra six months and I am due to come off end of June.

The winter was great as we didn't really get winter here in Western Canada which is a first. We usually have brutal winters!! One day I even got my husband to take me to our local park and attempt to skate! Yep I was able to skate on my own for about two minutes. It was the most amazing feeling ever! I love skating.

I was doing well, leaving the house more than I had in five years (short outings with minimal walking) but still napping every single afternoon for up to three hours. Then BAM!! RELAPSE

Two and a half months later and I am able to type about it. It was scary as I could not imagine being bed ridden again!! This relapse was different. I had sore throats, low grade fevers, chest congestion on top of barely able to walk in my house. My heart rate has been elevated the whole time when upright. Couldn't do anything.

I am one of those ME/CFS patients with an upregulated immune system too weak to show symptoms for anything. Haven't caught anything (or at least didn't show symptoms) since "the cold" that got me in this mess in the first place 5.5 years ago.

Why is it happening now?? We don't know. A lot of people get the sore throats and fevers on a regular basis but why now. Could my immune system finally be starting to work??

I also had pollen allergies- never had them before...

Anyway two and a half months later I started to drive again this week and am feeling better overall but not quite as good as before this relapse. My heart monitor alarm still goes off constantly when standing and until my heartbrate can stay under 106 (my anaerobic threshold) while moving around I won't feel as good as before this relapse but I am very hopeful.

I went for a saline IV this week in the hope that it would help with the orthostatic intolerance but it didn't.

I fly up to the US for a follow up in June and will let you know what's next for me.

In the meantime I keep smiling and am extremely happy that this relapse wasn't for the long term.

P.S. For those of you reading this blog for the first time you can't see the very first entries. Here is my intro http://forums.phoenixrising.me/index.php?entries/valcyte-2013-intro.1346/

Valcyte- 900 mg daily
LDN - finally upped my dose to 4.5 mg nightly from 3 mg x3 years
Trazodone- 50 mg nightly for sleep


HHV6 1:160. High
Pre Valcyte 1:320

EBV EA 1:38 High
EBV Viral Capsid IGG. 4.77. High
EBV Nuclear AG. EBNA IGG. 4.2 High


Thanks for sharing. I am working with my son who has had EBV for over a year. All his numbers are high as well. Please keep us updated when you can.. Be well Bill

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