1. < Infectious Diseases

Treatment for chronic Epstein-Barr virus (EBV)

Posted by cummings3 @cummings3, Jan 23, 2017

My son has been suffering with Epstein-Barr virus (EBV) for over a year. I have taken him to an immunologist and infectious disease doctor with no answers. He is always tired and never feels well. He has relapsed with Mono twice in the last 10 months.

Interested in more discussions like this? Go to the Infectious Diseases Support Group.

Mentor
Lori, Volunteer Mentor | @loribmt | Jun 14, 2021
In reply to @sfdm13 "I have had Hashimoto's Thyroiditis for many years. A little over four years ago I was..." + (show)
@sfdm13

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.

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Hi, @sfdm13 Welcome to Mayo Clinic Connect! In this community based forum, we’re not medical professionals so we can’t diagnose health problems or prescribe treatments. We’re members just like you who share personal experiences and insights to help find answers, give suggestions and offer encouragement.

Epstein-Barre Virus is another of those pesky, tiny viruses that can cause a world hurt… It’s so prevalent, that from what I’m reading, 95% of the world’s population carry this virus. However, most people can have the virus but their immune system keeps it in check. It’s the underlying root-cause for mononucleosis and can pose chronic issues for anyone with a weakened immune system.

You also have Hashimoto’s thyroiditis, an autoimmune disorder in which your immune system creates antibodies that damage your thyroid gland. The symptoms from both of those diseases look like they overlap and have to be exhausting for you! No wonder you’re trying everything you can to find a solution! I’m so sorry for what you’re having to go through.

I had a stem cell transplant for an aggressive leukemia and EBV is one of the most dangerous side effects of the transplant should it become active. I’ve been doing a bit of research since seeing your question regarding the use of a SCT to treat EBV. And most articles are about treatment of the EBV-Post transplant for people with either hard tissue transplants or bone marrow.
There were only 2 research papers I could find that mentioned SCT as a treatment for EBV but then I couldn’t find any current information; one dated 2002, another 2009. What I can tell you is that a SCT is arduous and not without its own risks and side effects.

Where did you hear about using SCT to treat EBV? Are you being given any medications for EPV symptoms? Here is a link to our EBV discussion group.

https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/

Are you under current treatments for Hashimoto’s? We have several discussions in the Autoimmune disease group regarding Hashimoto’s Thyroiditis and treatments.

https://connect.mayoclinic.org/discussion/hypothyroidism-vs-hashimotos/
https://www.mayoclinic.org/diseases-conditions/hashimotos-disease/symptoms-causes/syc-20351855

REPLY
clutch | @clutch | Jun 28, 2021
In reply to @justamom "Both of my sons were diagnosed with CEBV and CFS/ME. It permanently changed the paths of..." + (show)
@justamom

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!

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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.

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1 reply
Moderator
Amanda Roe | @amandajro | Jun 30, 2021
In reply to @clutch "I realize this is an older post. But when I go to the CFIDS website, I..." + (show)
@clutch

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.

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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?

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1 reply
clutch | @clutch | Jul 1, 2021
In reply to @amandajro "Hello @clutch. Here is some information on CFS and how you can request an appointment at..." + (show)
@amandajro

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?

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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".

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1 reply
suewilliams64 | @suewilliams64 | Jul 5, 2021
In reply to @clutch "Yes, I have sought treatment locally, at Duke, and at Mayo Clinic in Jacksonville. I was..." + (show)
@clutch

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".

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So so sorry about your CFS. I had mono twice last year and was left with chronic CFS! I’m 56. I tried everything and after 30 blood draws and 25 doc appointments with infectious disease etc they came up with ZIP all. Nothing. My girlfriend got me on Asea redox ( through the company in Utah not dubious Amazon or eBay) and I started it two months ago! Huge difference in my energy and a slow steady improvement every single day. Also has helped with sleep and mental clarity. They have Md’s on call and 400 test studies continue to show its efficacy. It’s been a life saver!! The doctors have no answers and piling on meds only keeps you down along with a burdened liver. I read Anthony William and followed his protocol in cleanse to heal! Also a huge help. I hope this helps and message me if you have questions.

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klomprez | @klomprez | Jul 30, 2021

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?

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Moderator
Amanda Roe | @amandajro | Jul 31, 2021
In reply to @klomprez "I was diagnosed with mono in November (2020), after weeks of fatigue and just feeling off...." + (show)
@klomprez

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?

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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?

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1 reply
klomprez | @klomprez | Aug 1, 2021
In reply to @amandajro "Hello @klomprez and welcome to Mayo Clinic Connect. Thank you for sharing your healthcare journey. This..." + (show)
@amandajro

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?

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I have not, but I do have an appointment with a hepatologist at SLU in December and I'm waiting to hear back from Infectious Diseases at WASH U.

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msdickson71 | @msdickson71 | Aug 10, 2021

I first contracted mono at 40 during grad school and it nearly killed me. Here I am 10 years later and it just keeps coming back, over and over and I am not seeing any really viable treatments. This is the 5th time now and I’m almost 3 months into this bout…just frustrated and tired.

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seehawkeye | @seehawkeye | Sep 16, 2021
In reply to @seehawkeye "I have been testing consistently positive for chronic EBV since 2013. I can’t tell that I..." + (show)
@seehawkeye

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.

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It’s been a while since I posted but I thought it might be helpful to give you an update. If you recall, I mentioned I had been tested many times over the past few years for Epstein Barr. The blood tests were always antibody tests. My results were off the chart and based on the results, I was categorized as having Chronic Epstein Barr. I sent these results to one of the top Epstein Barr specialists and I received a response telling me, with respect to the Epstein Barr, I should get a viral load test done. Well, the results came back with a normal reading. I still need to review the results with my immunologist, but I take this as very good news on the virus front. The important point here is that if you have high antibody readings (separate from Igm, which mine has always been low), you should ask your doctor for an EBV viral load test. I hope everyone is otherwise doing well.

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