Treatment for chronic Epstein-Barr virus (EBV)

I have had Hashimoto's Thyroiditis for many years. A little over four years ago I was diagnosed with EBV. It has since been diagnosed as Chronic Active EBV. I am 73 years old, female. It has never gone dormant. Has always been active, and my numbers are very high. My antibodies are greater than 750. Have also had many, many health issues. Would a stem cell transplant help? We live in a rural area in Hillsboro, Tn. therefore there are no specialists close to us. My doctor has been in touch with two in nearby cities, but they do not treat what I have. Also, what is the life expectancy? Thanks for any info.

Both of my sons were diagnosed with CEBV and CFS/ME. It permanently changed the paths of their lives. The sadness is beyond words. I'm thankful to have found this group that have been through the same life altering issues. One thing I would like to mention to each of you suffering from this debilitating illness is the possibility of Lyme Disease and co-infections. It mimics symptoms so closely that my son has gone undiagnosed properly for years. While he has been 100% positive for EBV with back to back recurrences along with other infections like many of you, he now is still dealing with the virus on top of Lyme and several co-infections. I now know why he was never improving. Instead, he has gotten far worse.
I'm mentioning this because it may help someone or save someone from further suffering if by chance they too, have more than EBV. The standard testing is highly inaccurate and it caused years of life to be lost. There is still a long road ahead. Igenex Lab finally was the far more accurate test and it has helped many people. The EBV and Bartonella were positive. Others were borderline and yet he had every symptom. If you look up Lyme Disease and find information showing that you may have symptoms, please refer to the ILADS website for detailed information and find a LLMD ( Lyme Literate Medical Doctor). Also, if you or your loved one tests negative per the most accurate lab testing and you need a doctor specializing in CFS/ME, there is a website entitled CFIDS that will also help you to find a doctor that actually understands CEBV and CFS/ME that WILL listen and help! These illnesses both can damage the organs and the autonomic nervous system as well. That is a fact. Joint pain, memory issues, sudden drops in blood pressure with a high pulse rate happen. Spleen, liver, pancreatic inflammation can occur. Seeking a physician trained in specifically these illnesses is your best bet! I've found infectious disease practitioners that do not at all understand either one if they have not been formally educated with CME in Lyme Disease or CFS/ME. There are pediatric and adult doctors that treat both and they are MD's. I hope this helps someone. Keep hope and know you are not alone and no one asks for nor deserves to suffer any of these illnesses. Both of my sons missed their highschool memories and so much more. Thank you to all who have shared such great information here. I've learned a great deal. Blessings and wishes for restored health and peace to all!

I realize this is an older post. But when I go to the CFIDS website, I see no mention of finding an appropriate provider. Can you please post a link to that information? Thank you.

Hello @clutch. Here is some information on CFS and how you can request an appointment at Mayo Clinic, if that is helpful. I am not sure of the other website you had reference.

- Chronic Fatigue Syndrome:
https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490
Have you sought care for this before?

Yes, I have sought treatment locally, at Duke, and at Mayo Clinic in Jacksonville. I was turned downed at Mayo. Ir was like the minute I uttered "chronic fatigue ", it was an immediate "No".

I was diagnosed with mono in November (2020), after weeks of fatigue and just feeling off. I've been the same since. I still have an active ebv infection and continously elevated liver enzymes and wbc. I've been sent to multiple specialists, all of whom have said they don't know how to help me and referred me to yet another specialist. I have been sick a long time and I'm frustrated and suffering financially from being too sick to work. Who can help me?

Hello @klomprez and welcome to Mayo Clinic Connect. Thank you for sharing your healthcare journey. This has had to be a very exhaustive experience for you.

You will notice that I have moved your post into an existing discussion on Epstein-Barr so that you can better connect with members like @suewilliams64 and @sfdm13 who have recently shared also being diagnosed with Epstein-Barr so you can share with one another.

Have you been seen by a specialist at a teaching hospital by chance?

I have been testing consistently positive for chronic EBV since 2013. I can’t tell that I have it though. I don’t have any mono symptoms. But, I do have health issues and I am concerned that EBV can cause certain cancers and autoimmune conditions. So, it’s important to address it. You need to know why you are testing positive for chronic EBV. For me, it’s low CD8+ T Cells (mine run around 9-10% where normal is around 30%). As a result, I can’t clear the virus. Have you had any CD4/CD8 testing? I would ask for that test. Baylor has a program where they can give you CD8 cells marked for EBV, which could help people like me to overcome it. Its still in the testing phase and I don’t yet know under what circumstances it is appropriate treatment. I’m going to look into this and will let all of you know. I know there is another treatment but it’s very risky and only used in very severe cases. I also mentioned that U of Utah has determined that a common drug called spironolactone inhibits viral replication of EBV. That could be an option. I know of no other solution. There is a lot of bad advice out there regarding how to deal with this, some of which was mentioned in these threads (I.e., something about starving the virus). I would focus on what the researchers are doing.