Doctor Recommendations for Chronic active Epstein–Barr virus (CAEBV)

Hi Sue,

Please tell me, what are the diagnostic criteria to be diagnosed with CAEPV or intermittent recurring EBV? Do "they" use the EBV EA-D IGG antibody test? I asked for that test and my number is >150. I am waiting to get an appointment with an infectious disease doc in my area. I feel like they won't know anything about this anyway...we'll see.

Similar to many of you within this group, I have found that I have never been successful diagnosed nor had any successful treatment. I have been diagnosed with autoimmune diseases; hashimoto's disease, rheumatoid arthritis, thyroid disease, etc. It was thought that I had lymphoma for a few months and keep testing for it. It seems clear that I have chronic EBV as my AG AB IGG result of over 600 and have continued to climb over the years.

Does anyone have any good doctors to recommend in the Phoenix/Mesa area?
I am looking into the Mayo clinic and chronic EBV specialists in this area, so if anyone has any info that would help I would greatly appreciate it! Infectious disease specialist, immunologist, hematologist and naturopathic doctors are other routes I have looked into, so if you have any highly rated docs, please send my way. Thank you for your help and sending good vibes out to all those on here who are also suffering.

Can anyone recommend a specialist how treats Epstein Barr Virus near Pittsburgh, Pa? My 23 year old son was just diagnosed with EBV and has had a sore throat now for over 4 months. Tx!

There are no doctors in Arizona, including infectious disease doctors, who treat EBV or CAEBV. There are functional doctors/natural paths that will take your life savings in an attempt to treat it and you will be right back at square one, just poorer. You can join stuffthatworks.org which is a CAEBV support group and all who travel and spend their money trying help from Natural Paths are now broke and still sick and some even sicker. OZONE therapy is a big one everyone seems to be trying and after $10K, 40 treatments, they are back in the same boat. It sucks and I am sorry that this is all a negative response, but the truth is the truth even if it is negative. I put my faith in Lord Jesus Christ to get me through and He has not let me down. He made sure I had all I need. Although we suffer it is all temporary. I am letting nature take its course and getting ready for heaven.

Yes I have. There are 2 doctors witb Mayo that work with EBV patients and they are up in Minnesota, but there is no treatment for EBV/CAEBV so I am not sure why anyone would waste their time. My doctor told me there is no treatment and to see a psychiatrist for my symptoms. I still looked for a doctor to help me and she turned out to be correct. Also, I joined stuff thatworks.org and listened to the testimonials of several several people who have been to several natural paths, functional doctors and have spent their life savings only to be just as sick as when they started. So really even if there was an infectious disease doctor here in Arizona that took patients? It would do us absolutely and no good. But one can get a stem cell transplant in Panama

I have had high EBV titer since being diagnosed with ME/CFS over 30 years ago. I have a Primary Care Doctor,
Cardiologist, Nephrologist, Endocrinologist. Not one of these people has suggested any treatment for EBV or suggested seeing another type of doctor. The information I get from these people is that there is no treatment. Also, no one seems to know what EBV can cause. All this is puzzling to me particularly since I started participating in the Mayo Connect groups and have discovered so many people who have high titers. It seems
rather strange. Are there Mayo physicians doing research on what this disease can do to the body and how it
affects immunity? Are there physicians anywhere doing this research. If there are, they're not publishing material available to the the general public and apparently physicians don't know about this research or, I hate to say this, don't care about it. Tests for EBV should be included on all yearly blood tests that are given as part of wellness exams. They aren't. If they were, a pattern might develop. In the meantime, all of us with high titers are left to research on our own. Very peculiar for something that turns out to be fairly common and could affect our well-being. Also, consider the fact that we're in the midst of a Covid epidemic. None of this makes sense.

There is no treatment in the West for this disease. It is more prominent in Asia and they do HSCT stem cell transplants to kids who get EBV/Mono. Your son can get a transplant in Panama. My doctor referred me to Panama for help. Sorry to say it but your son has chronic EBV and will struggle with it for life. Every time his immune system is down he will get either mono, bronchitis, even pneumonia. Let's just pray it doesn't pretend to go dormant and turns into sCAEBV. That is what some of us have and what happens is you get over the mono finally and everything seems fine. It may be 10 years later even 20, but eventually, after it has hidden in organs etc, it decides to rage war with the immune system. It comes out of hiding and there is severe pain systemically, severe ice cold night sweats, anemia, bone and joint severe pain, heart palpitations and cardiac issues, lesions in lungs, spleen etc. Once CAEBV is diagnosed there is only a 13% chance of living another 50 months. only 20% of all stem cell transplants are successful and most die from complications from HSCT. Prayers for you and your son my friend.