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

After my 2nd Covid shot I was walking to my car and could not walk a straight line. I got to my car and literally reclined my seat, rested for 30 minutes, drove home and went to bed. I slept for 4 days getting up intermitently to walk to the bathroom. My legs were so weak in my calves and thighs, I would just fall back into bed and sleep forever. After 2 months of this I went to my family physician and she ordered an EBV. I had had 2-bouts of it; once at 17 (stage 5 & hospitalized) and then at 58. Now 70 Y/O, still working and once very active, I am doing everything I can to stay vertical. I do cardio in the gym pool for 45 mins. but cannot climb up the steps to get out of the pool, my legs are like jelly with no muscle strength. My numbers have hardly changed in over a year. I did the green diet for 5 days and saw no change, no sugar in the diet and primarily organic chicken diet with organic vegetables. I have good days and bad days, but still am so weak and still need to nap. Everyone says this will pass, but I do not want to spend the rest of my life saying this will pass. I need relief! Any help is welcome.

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.

Hi @bbresson, welcome. I moved your question about recommendation for EBV specialists in the Phoenix area to this existing discussion:
- Doctor Recommendations for Chronic active Epstein–Barr virus (CAEBV) https://connect.mayoclinic.org/discussion/ebv-chronic/

I did this so you can connect with other members like @bt123 @kefnb @tricia13 @seehawkeye @mrmie @cknight @lesd70 who may be able to provide recommendations and answer questions for you.

You might also be interested in this related and active discussion:
- Treatment for chronic Epstein-Barr virus (EBV) https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/

Bresson, If Mayo Clinic is an option for you, here is more information about how to submit a request for an appointment online: http://mayocl.in/1mtmR63

It sounds like you might benefit from the multidisciplinary approach of Mayo Clinic.

Thank you

Does the Mayo Clinic take CAEBV patients? Every infectious disease doctor I’ve called has said they don’t treat it. My primary care doctor said that it’s not a real thing and no one treats it. I don’t really know for sure if I have it. My IgM, VCA, and EBNA are all positive after 4 years but no one has done the DNA test on me. Does the IgM being positive mean that I have it? I am honestly so lost and hopeless! If anyone has answers/can help it would be greatly appreciated!

Dear @baileygjcar,
Your worried post is the first thing l read this morning, opening my laptop. It makes me immediately upset, and l must say that l, unfortunately, know all too well what EBV is and l can say that because of the Epstein-Barr virus, my life changed forever many years ago. Besides, it caused what l today for sure know is the reason for me being terribly ill for the most part of every given year (Chronic Fatigue Syndrome, also known as CFS/ME).
So, for your doctor to be so ignorant and arrogant and dare say to you that "it's not a real thing" ... makes me say ... if it is not a real thing l wish for him to get it today ... (l am NOT a mean person, and l don't exactly go around wishing anything on others), but this careless answer of his to you - a patient who obviously has put her/his trust in him, and is being brushed away in such an arrogant and unacceptable way, is more than l this morning can take.
Please do not feel alone. Do know that EBV unfortunately is all too real and that l am very sorry that you have such a piece of junk as a primary doctor.
All my best to you.

Thank you so much! It can be so isolating when no one around you has been through what you’re going through so sharing your story is so appreciated!

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.

CFS/ME center at Stanford University. Long waiting list there and you have to meet the criteria for that. They DO know about the connection with EBV. And they may know of EBV specialists to recommend. Stanford used to have an one of the few EBV specialists in the country there but he was fired. I don't know if they have a new one. If my symptoms don't resolve soon...they are on my list to call for a recommendation. Sounds like Mayo could help too.

How did they diagnose you for ME/CFS over 30 years ago? I am very surprised they didn't at least put you on an antiviral? Or did they and it didn't help?

Hello, I see this comment was posted over two years ago. Did you ever find a specialist?