Treatment for chronic Epstein-Barr virus (EBV)

@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.

@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.

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.

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.

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.

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.

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.