Treatment for chronic Epstein-Barr virus (EBV)

Were you able to get an appointment at the Cleveland Clinic? I put in a request, and haven't heard back from them yet. They wanted to know what kind of doctor I want to see. I have no idea! I need them to tell ME who I need to see. I told them all my symptoms that I have been experiencing for 16 months and how this condition has completely changed/ruined my life, and who do they recommend? I was hoping they would have some experience in this area, as no doctor in my vicinity seems to know anything or be able to help me in any way.

Hi,
Mayo Clinic & Cleveland Clinics were of no use. They would not see him, even after sending all his records. He is going to another Dr at John’s Hopkins in February.....so no knew news....still experiencing ALL the same symptoms. Sorry.
Will keep you posted....

Thanks

We didn't try it.

I'm so sorry to hear this. They will probably deny me, too, then. Yes, please let us know what they have to say at John's Hopkins. Thank you!

If you are willing to travel, that opens up options. I’m just starting the process of getting a better assessment of my condition to better understand what treatment, if any is available. I will send along what options based on what I know. If anyone has the appetite for reading research, I can send some very good papers. Just let me know. That is where I learned about the connection between CD8 deficiency and chronic EBV, vitamin D deficiency and autoimmune diseases. There is also a link between EBV and certain cancers such as lymphomas. This is well established. But it does not mean because you have chronic EBV you will get cancer. I know that the diagnostics are changing and there are emerging therapies for that could be helpful someday and perhaps soon. Honestly, I was shocked when I first saw the chronic EBV and CD8 deficiency on my first test. I don’t even remember getting mono so I was surprised I couldn’t clear the infection or at some point it got reactivated. My test results never changed since the first time I took it almost ten years ago. My doctor ignored it and she she specialized in oncology when she lived in another state. What I am saying is we need to take responsibility for our health and welfare, proactively seek knowledge, answers and treatments. Our condition and that of loved ones is relatively rare, especially in the US, so we cannot expect most doctors to k ow what to do with it. Lastly, chronic EBV is not connected to chronic fatigue. That was established long ago. However, if you are concerned you have chronic fatigue, research was recently completed at Stanford that established biomarkers for this condition. So, chronic fatigue is real and it’s not in one’s head and it can be finally be diagnosed. I can provide a link to the research if anyone is interested. Stay safe.

The research I read says most people have been exposed to it best most are able to clear it in the US meaning they will not test positive for chronic or reactive EBV. Chronic EBV is considered rare by researchers in the US.

I would definitely try - you never know! We have to advocate for ourselves. Having spaces like this one is great to get others perspective and options! Stay well -

Thanks seehawkeye! Anything you can provide is greatly appreciated!

Hi again,
Could u please explain the CD8+ T-cells?? Thanks!