Hello all! I have Severe CAEBV. I've been steadily worsening probably since about 2014. Recently, all I've been able to do is work from home (my own business), activities of daily living and otherwise bed bound essentially. Now...just in the last couple of weeks working is becoming very difficult. I've just let go of a large client and likely will need to cut back even more. It's possible I may not be able to work at all soon...and no disability insurance. Kicking myself about that one. I've been working with a specialist here in CA who treats ME/CFS, but nothing we have done has helped. I was on an anti-viral called Valtrex for a while and it helped enormously. I even had a day of feeling totally normal but unfortunately, after about 9 months, the EBV became immune to the medication. I apologize, but at this moment, I'm too sick to read through all the information on this thread. Wish I could. So I'll just ask - is there anyone on here that has been Severe with this, meaning, too sick to care for their kids. Too sick to work and has found a lifestyle protocol, including everything / anything - supplements, medications, diet, etc. that has helped them? If so, what is that protocol? And - has anyone who is severe found any doctors anywhere in the US that has helped them? This virus is truly taking over my body at this point. It seems work will be the last thing to go. It has already taken everything else from me and I live alone. Thank you and I will check back for any responses.