Hi, new to this chat string. Reaching out for a support group for my son.
He is 21 and has been chronic EBV reactive for at least two years. It has gotten worse this year. We recently did a bone marrow biopsy And thankfully, it came back with no cancer, but we still have the chronic EBV that is just ripping through his system on a daily basis. He has multiple Symptoms on a daily basis in the evening his fever Spikes to 103 with cold chills. His appetite is a hit or miss every day. He has a persistent cough like he has bronchitis, but we know that his lymph nodes in his lungs are swollen and has been. He can’t work and is extremely tired most of the time. He has his good moments and then he has not so great moments, especially when he’s pale. Many times he turns white as a sheet. His hemoglobin is in between 5.3 and I think the highest it has gotten Was 8.0. We’ve had multiple transfusions since March and two hospital stays. When he got the bone marrow biopsy last week, he ended up being sepsis come to find out. It was a surface bacteria that got into his system by way of the insertion of the Biopsy that One through us for a loop.
So basically this next week, we are going to see the oncologist again to see what his options are for the next step. I know that this virus cannot be killed, but something has to give on the symptoms.

Any suggestions or common Situations would be so helpful at this point. My son has no one to talk to that shares the same experience.