If you have EBV and HHV6 Co-infection, according to Dr Lerner, you need Valtrex plus Valcyte. Note that everyone has HHV6, so you only need Valcyte if HHV6 titers are
elevated. If you are going after EBV only, Valtrex is sufficient. Also note you should test for bacterial co-infections and treat them first if needed. Dr Lerner recommends minimum Valtrex/Valcyte treatement for one year. Improvements start no earlier than 4-6 months.
All is detailed here, if you haven't already seen it:
http://www.treatmentcenterforcfs.com/documents/MECFSTreatmentResourceGuideforPractitioners.pdf
I have EBV only, HHV6 titer is IgG 1:32 and IgM negative, and no bacterial co-infections so according to Dr Lerner's protocol, Valtrex only is sufficient for me. As recommended for patients >80 kg, I took 1,500mg four times a day.
I took it for 5 months, after which my kidney function started to deteriorate, so I had to stop it for the last 2 months. In that time I switched to Famvir and Brivudine, the latter doesn't affect the kidney at all. I now try to go back to Valtrex (actually I'm using a German generic).
I had some significant improvement in the 5 months in which I took it. Especially my joint pain in the hip region almost disappeared entirely, PEM improved, my heart seems to benefit. That's why I want to go back to it as soon as possible. Brivudine and Famvir also appeared to be effective, but for Valtrex, there is the most scientific evidence, so I want to go back to it if I can.
Regarding your questions:
Did side effects abate when improvement kicked in?
I didn't have a lot of side effects in the first 3 months. Note that Dr Lerner mentions that a worsening of symptoms (Herxheimer reaction) can occur in the first 2-4 weeks, this is not a toxicity. Instead it indicates good response.
After 4 months, I started to have side effects, because my kidney function was affected. They disappeared after stopping it for 2 weeks, but improvements also disappeared.
So in my case, there is no simple yes or no. It's complicated
Did you get a good result in your first year?
I got pretty good results for some symptoms in the first 5 months. Other symptoms like fatigue, energy didn't improve much. But most improvement is expected to occur after 6 months, so I hope that happens when I can continue Valtrex.
Did you improve more in later years?
Can't comment.
How much remission or improvement have you gotten?
Joint pain in the hip almost disappeared completely (I had a hard time even walking a few steps before), PEM improved, heartbeat was more regular, palpitations improved.
Are relapses less severe?
When I stopped Valtrex after 5 months, I had the feeling that most symptoms start to return after 1-2 weesk, but less severe. Though they may get more severe when I don't take it for a longer time.
Do you still get PEM/PENE?
I'm not familiar with PENE, but I have much less PEM!
Are you doing just Valtrex or Valcyte too?
Just Valtrex.
Anything you'd like to add?
What I think caused the kidney problems after 3 months was that I started Vitamin D and calcium supplements. I would advise anyone, if there is no medical reason, to take only moderate calcium, Vitamin D and phosphate including in the diet.
Hope it helps you a bit