• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Should I push for Valcyte?

leokitten

Senior Member
Messages
1,595
Location
U.S.
@nryanh94 I’ve always had similar EBV antibody results as you, in addition to very high CMV and HHV-6 IgG every time I’ve been tested.

I took Valcyte for 2 years or so after being diagnosed with ME and Famvir during the same time and for even longer. It made IgG antibody levels go down somewhat and during that time it was the only time EBV EA-D became negative. But, like many people, I didn’t notice any improvements in my symptoms, though I was constantly overexerting and crashing due to work.

After stopping the antivirals eventually EA-D came back up to high and IgG levels of all viruses went higher again. Maybe it was because I was constantly overexerting and crashing during this entire time. So my advice would be if you do take Valcyte you might want to make sure you really rest and pace the entire time to have any chance of benefiting from it, but it could also not matter and the the moment you stop things get worse again.
 
Last edited: