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.

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dbreed | @dbreed | Aug 11, 2018
In reply to @dbreed "@jamienolson in late 2007 my PA and doctor finally decided to test my IgG and IgM..." + (show)
@dbreed

@jamienolson in late 2007 my PA and doctor finally decided to test my IgG and IgM and ANA levels. Additionally, EBV was ordered. All were positive and high. Since then, the levels have remained active and high. In 2008 I was sent to a wonderful Rheumatologist who had the brilliant idea of putting me on Valtrex. Since then up until about 1month ago I was taking it. As I I had moved to another state and my new PCP kept “fighting” me on continuing me on Valtrex despite my records and blood work showing the positive lab values, he has stopped my Valtrex. He referred me to a local ID doc who sent a reply to my PCP saying he could manage me that I didn’t need to be seen at ID clinic. Slowly, my energy has been depleted. My muscles are extremely fatigued easily. I feel like all the great years I’ve had have been thrown away. I’ve gone from feeling great, being able to function, work, workout 5x/week to now being barely able to work. What can I do to convince this PCP that Valtrex does work. I’ve tried giving him literature, etc. he even has my records. Please help.

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@uldiver ty so much for the great information. I will definitely check into it. Truthfully, for the most part since 2008, my health status has been kept in check w/Valtrex. However, I didn’t look further into other possibilities as I put the DX out of mind and just pushed forward. I’m in the healthcare field too! My heart goes out to all of the folks on here who are searching for answers and desperately needing relief. It’s an awful chronic condition. However, it can be managed as long as we have the right medical professionals who recognize this is a real problem and treat patients accordingly.

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dbreed | @dbreed | Aug 11, 2018
In reply to @dbreed "@jamienolson in late 2007 my PA and doctor finally decided to test my IgG and IgM..." + (show)
@dbreed

@jamienolson in late 2007 my PA and doctor finally decided to test my IgG and IgM and ANA levels. Additionally, EBV was ordered. All were positive and high. Since then, the levels have remained active and high. In 2008 I was sent to a wonderful Rheumatologist who had the brilliant idea of putting me on Valtrex. Since then up until about 1month ago I was taking it. As I I had moved to another state and my new PCP kept “fighting” me on continuing me on Valtrex despite my records and blood work showing the positive lab values, he has stopped my Valtrex. He referred me to a local ID doc who sent a reply to my PCP saying he could manage me that I didn’t need to be seen at ID clinic. Slowly, my energy has been depleted. My muscles are extremely fatigued easily. I feel like all the great years I’ve had have been thrown away. I’ve gone from feeling great, being able to function, work, workout 5x/week to now being barely able to work. What can I do to convince this PCP that Valtrex does work. I’ve tried giving him literature, etc. he even has my records. Please help.

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@mrmie ty!!! Also, if you read my other responses, I thought I was responding to you. I’m new to this forum and keep forgetting to put the @ symbol to respond.

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Marianne | @mrmie | Aug 11, 2018
In reply to @aesmayo01 "I asked to be checked for Epstein Barr when I became too tired to eat and..." + (show)
@aesmayo01

I asked to be checked for Epstein Barr when I became too tired to eat and chew (at 240 lbs. that was a first). Sure enough I had reactivated Epstein Barr. Please friend me if you have info about this disorder. I am hoping to come to Mayo MN in October to assess my chronic pancreatitis, possible nonalcoholic cirrhosis, Memory issues and TIA's and possible MVD (usually a difficult to diagnose women's heart issue). I also deal with Type II Diabetes, GERD, IBS, a neck fusion in C4-7in my spine and 2 knees that need replacing. Oh and ruptured disc in back, Anxiety, Bipolar disorder and PTSD. I am open to support and to hear other's issues.

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Thank you! I was just thinking that I need a massage.

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dbreed | @dbreed | Aug 11, 2018
In reply to @aesmayo01 "I asked to be checked for Epstein Barr when I became too tired to eat and..." + (show)
@aesmayo01

I asked to be checked for Epstein Barr when I became too tired to eat and chew (at 240 lbs. that was a first). Sure enough I had reactivated Epstein Barr. Please friend me if you have info about this disorder. I am hoping to come to Mayo MN in October to assess my chronic pancreatitis, possible nonalcoholic cirrhosis, Memory issues and TIA's and possible MVD (usually a difficult to diagnose women's heart issue). I also deal with Type II Diabetes, GERD, IBS, a neck fusion in C4-7in my spine and 2 knees that need replacing. Oh and ruptured disc in back, Anxiety, Bipolar disorder and PTSD. I am open to support and to hear other's issues.

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@mrmie best thing for you.

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darkmatter53 | @darkmatter53 | Aug 19, 2018
In reply to @airsleeper "Hello everyone! My last post in July said I was headed to Mayo Clinic at their..." + (show)
@airsleeper

Hello everyone! My last post in July said I was headed to Mayo Clinic at their Rochester, MN campus in August. My wife and I spent three weeks in Rochester with me going to appointments. I can't say enough positive comments about Mayo, the doctors and staff, and the residents of Rochester! After numerous appointments, tests, and changes in appointments, the final result is a primary diagnosis of Idiopathic Hypersomnia. At first, I was was disappointed that Mayo doesn't recognize Epstein Barr as a chronic condition. However, their explanation made sense to me, and I am willing to accept their idea. I had been previously diagnosed with IH,
But Mayo made me feel better about my doctor and his treatment. Mayo doctors also didn't confirm some other diagnoses from my local doctor and took me off five medications immediately. I am feeling much better since I stopped taking medications that my body didn't need. The Mayo doc also sent my local pulmonologist his recommendation to revamp my medication dosage and/or change my medication to allow me to be able to stay awake better. Treatment for IH is just treating the symptoms...stimulants to keep me awake during the day. I see my local pulmonologist next week. Mayo also found a small issue with my pancreas, which I will be contacting a gastroenterologist locally for that. So do I think EBV is real? Yes! I also blame that virus for my IH, which the Mayo doc said was possible but it can't be determined. I still have a little brain fog and pain, but nothing like it was before my Mayo visit. I recommend anyone who has ongoing health issues to make a trip to Mayo Clinic. Insurance is accepted, and lodging options vary according to your budget. We opted to take our travel trailer because of the length of time we would be there. Autumn Woods RV Park provided us with everything we needed. I am still curious how this plays out. IH isn't curable, but it is manageable somewhat. I will be keeping up with everyone on here, and I appreciate everyone's concern and prayers during my trip.

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Don't understand Mayo not recognizing chronic/reactivated EBV when their own literature on-line says otherwise. http://www.mayoclinic.org/diseases-conditions/mononucleosis/expert-answers/mononucleosis/faq-20058564

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darkmatter53 | @darkmatter53 | Aug 19, 2018
In reply to @airsleeper "Mayo says it’s not a chronic virus. However, another doctor in Texas says research shows otherwise...." + (show)
@airsleeper

Mayo says it’s not a chronic virus. However, another doctor in Texas says research shows otherwise. Idk. Looking back, I’ve had these symptoms for 15+ years but was never diagnosed. I finally had to retire early because I would sleep all weekend and then make it to work Monday and Tuesday and maybe half day on Wednesday. Then I’d start all over after sleeping Thursday, Friday, Saturday, and Sunday. Mayo dismissed many diagnoses and I am feeling better, but it’s a total management thing. My daughter is better than me. Doctor says it’s because of the age. I wish your son the best. I highly recommend a visit to Mayo! I’d be glad to talk with you more about our symptoms and various treatments we have tried.

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Mayo does say it can be chronic. http://www.mayoclinic.org/diseases-conditions/mononucleosis/expert-answers/mononucleosis/faq-20058564

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darkmatter53 | @darkmatter53 | Aug 19, 2018

I do not understand. Does mayo Clinic recognized chronic/reactivated EBV? Here is their own literature which seems to say otherwise.
http://www.mayoclinic.org/diseases-conditions/mononucleosis/expert-answers/mononucleosis/faq-20058564

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estephanyacosta | @estephanyacosta | Aug 23, 2018
In reply to @cummings3 "My son is 17yrs. old and a senior in high school. He got the Epstein Barr..." + (show)
@cummings3

My son is 17yrs. old and a senior in high school. He got the Epstein Barr virus 14 months ago, which caused Mono with another relapse with it a month later. His doctor made him homebound from school for 4 months, due to the severity of this. He has been to see an immunologist and infectious disease doctor, but no help in solving this puzzle. Since diagnosed with Chronic Epstein Barr, he's been constantly fatigued, just doesn't feel great half of the time, and is constantly contracting other infections and viruses.

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Hello, its really hard to live like this more so at a young age. I am very sorry for what your son is going through, I hope that the treatment of the neurologist was successful and he does not have to endure this anymore. I would appreciate it with all my heart if you can give me your sons neurologist information. Thank you very much I hope you can reply cause am desperate.

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1 reply
mopete | @mopete | Aug 24, 2018

I am wondering what tests are done to diagnose chronic EBV and how they differ from regular EBV testing? I'm a 31 year old female who has suffered from fatigue, sore throat, and muscle weakness for the past 26 months. Prior to an immediate onset of severe flu like symptoms, and throughout my whole life, I was incredibly active, competing in half-ironmans, half-marathons, but more than that, just LOVED running, long distance biking and swimming purely for the join of movement. Since getting sick, I have been too weak to partake, and get too sick / bed ridden if I try to. I continue to work and remain moderately active (walking and yoga) but it's a struggle as I persistently feel weak and sick. I had mono when I was sixteen, recovered in a month or two, and had no lingering effects. My blood tests for EBV (VCA IgG, EA IgG and ENBA IgG) are all reactive. My mono screen test is also positive (I know that this doesn't necessarily mean anything, however, when I was tested in 2015 prior to my illness, it was negative).

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dbreed | @dbreed | Aug 24, 2018

@mopete your situation sounds a lot like my own and others. The bloodwork you’ve had done is good enough and proves the virus is active. Have they tried putting you on Valtrex? I’ve been on 500mg 2x/day for 10 yrs. in July a new pcp decided I shouldn’t take it and I proceeded to go back 10 yrs. I convinced him to put me back on 2 weeks ago and am back in business. Try and push your doc to put you on it. There’s plenty of literature.

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