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← Return to Treatment for chronic Epstein-Barr virus (EBV)
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Treatment for chronic Epstein-Barr virus (EBV)
Infectious Diseases | Last Active: May 20 9:53am | Replies (651)Comment receiving replies
Wish that I had some great advice for you, also! My son was diagnosed with chronic EBV last year and is struggling with constant illnesses and fatigue. He never feels well and is supposed to be leaving for college in the fall. His primary care doctor has tried to get him in with infectious disease at Vanderbilt (after getting nowhere with local ID doctors), but they rejected his case. I called the Mayo clinic to try and schedule an appointment, but they do not see chronic EBV patients... only Chronic fatigue. We are in the process of trying several different supplements and seemed to have success, until a few weeks ago. He was hospitalized with a horrible bacterial virus that they are blaming on a tick bite? I am going to continue to take anyones's advice with the supplement recommendations in hopes to find something that helps! You may want to get your foot in the door at the Mayo clinic for your Chronic Fatigue Syndrome and take it from there.
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@cummings3
I have had this awful disease since I was about 10. I am 58. Diagnosed at about 48. Had lump removed at 30 & they assumed it was cancer, but it was Histiocytosis. Read if u have CAEBV, u will get Histio. My saviors are Tramadol, a daily Acyclovir & Triple-Antibiotic. My flare ups have dwindled to 3 days in bed occasionally if I overdo it. One leg is now shorter & I have had tons of cortisone shots. I put Triple-Antibiotic salve in my nose with a q-tip when going out & don’t get sick anymore! (I got a cold/bronchitis every month b4 this). My partner has cancer & also doesn’t get sick anymore by using it! I have “shocks” in different parts of my body now, localized pain still & cold sores here & there. I am still suffering way too much still & use a scooter, so wanted to see what others do & wanted to share my tmts. I had to come to terms with my limitations, eat healthy & rest often. One dr gave me Presnisone (5-10mg) for vacations & it worked super, but drs all said it will just make things worse. Hoping this can help you all! Teach ur brain that this is ur new normal & just live the best u can!