Treatment for chronic Epstein-Barr virus (EBV)

Hi EBV sufferers! I wish I had seen this earlier, but I just came across it today. First of all, I want you to know that you're not alone in your misery. I was a senior in high school when I had my first episode of mono. I ended up missing almost half of the school year. Couldn't stay awake. No energy. My whole body was affected. At age 22, it happened again. The doctors gave me prescriptions for to combat the fever, upper respiratory, headache, sinus infection, etc., but nothing helped! I went to another doctor for a second opinion and after an examination and some other tests, the diagnosis came back as Epstein Barr Virus. Unfortunately, I also found out that I would have to live with this for the rest of my life and I had even higher chances of developing mononucleosis again and again and again. I never know when this virus is going to rear its ugly head, but finally, after 30 years of struggling I have my life back. Two years ago I was at the end of my rope. A friend of mine introduced me to some of the most amazing supplements from Plexus Worldwide that I have ever tried.

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.

Hello, thank you for the kind words. It is very hard to see a teenager struggle with this horrible illness and has been for 3 years now. The name of his neurologist is Debbie Turner at Semmes Murphy Clinic in Memphis, TN His autonomic dysfunction caused by the EBV seems to be improving with Alpha Lipoic Acid that she put him on last November. However, the chronic fatigue is still debilitating for him and he still deals with feeling sick often.... there are good days and bad.

Hello @cummings3,

I'm sorry to hear about your son's diagnosis, but I'm so glad you chose to come to the Connect community to seek support and get some answers.

For now, I'd like to introduce you to @jenchaney727, @suesiegel, @arriba, @aman_23_23, @copiela, @jatl, @cheryldotson, who have all discussed Epstein-Barr Virus (EBV), and I sincerely hope they will return with some more insight.

Here is some more information from Mayo Clinic: http://mayocl.in/2iYRh3v

@cummings3, chronic fatigue is one of the symptoms of this condition; could you tell us a little more about your son? How old is he? What other symptoms does he have?

Hello my name is Charlie @nomadkazoo new to this form. I'm 57 2015-2016 lived through 10 mo mystery illness. My head spins every time I review this lost period of time. Numerous Doctors and testing no direction found, issues from heart racing out of control to black outs, numerous infections, fatigue,bulging disk back neck. roving pain to swelling of extremities, grinding lansing head pain. mental fog, pain full burping lasting hours.
Late 2015 my daughter read article on EBV. Asked to be tested,results were very high Doctor in charge didn't no what to make of numbers. Referral to communicable disease specialist was made. After review and appointment was put on trial medication for herpes patients.
Worked for 3 weeks till med ran out,asked if we could continue with med, no was answer it was a trial and sent me on my way lost.
By accident through my wife's business we were introduced to and energy healer. From first visit with remedy to back to work in three weeks. Was told could take up to two years for my system to heal. Past two years have been up and down with a variety of illness. Wrote it off to fact my entire system was weakened and I still healing.
My concerns is that we only put a band aid on the EBV, for I'm out of work again with no help from local Doctors, had to demand test for EBV when told was not necessary. Numbers mirror past results, condition and issues same with couple new twist. Have not been able to visit energy healer she unavailable till 09/06 for reading. I'm not sure at this point if she can fully contain this health problem.
Is their help for me at the Mayo Clinic I need to work I need to get off this human hamster wheel.

@nomadkazoo Hi Charlie. I totally get your frustration. I left a job I loved a year ago because I simply could not work. I basically had a relapse on a relapse. I have not gone to Mayo for the EBV. Maybe someone will chime in who has. I'd recommend becoming a part of a few EBV support groups. There are some on facebook. It's a great place to learn what has helped some people. Keep in mind EBV can affect different organs/systems so what works for one person may not work for you. You are your own best advocate. Unfortunately as you already know, conventional doctors either don't acknowledge it or don't know how to treat it. What antiviral med were you on? You may want to find a new doctor. I just told my nurse practitioner today that I have read that Valtrex can be helpful for some. She said she would look into it. Some have been helped by diet and supplements. it is a tough journey but hang in there!

Hello my name is Charlie @nomadkazoo new to this form. I'm 57 2015-2016 lived through 10 mo mystery illness. My head spins every time I review this lost period of time. Numerous Doctors and testing no direction found, issues from heart racing out of control to black outs, numerous infections, fatigue,bulging disk back neck. roving pain to swelling of extremities, grinding lansing head pain. mental fog, pain full burping lasting hours.
Late 2015 my daughter read article on EBV. Asked to be tested,results were very high Doctor in charge didn't no what to make of numbers. Referral to communicable disease specialist was made. After review and appointment was put on trial medication for herpes patients.
Worked for 3 weeks till med ran out,asked if we could continue with med, no was answer it was a trial and sent me on my way lost.
By accident through my wife's business we were introduced to and energy healer. From first visit with remedy to back to work in three weeks. Was told could take up to two years for my system to heal. Past two years have been up and down with a variety of illness. Wrote it off to fact my entire system was weakened and I still healing.
My concerns is that we only put a band aid on the EBV, for I'm out of work again with no help from local Doctors, had to demand test for EBV when told was not necessary. Numbers mirror past results, condition and issues same with couple new twist. Have not been able to visit energy healer she unavailable till 09/06 for reading. I'm not sure at this point if she can fully contain this health problem.
Is their help for me at the Mayo Clinic I need to work I need to get off this human hamster wheel.

I'm sorry for the pain you and your son are suffering. I was Dx with Epstein-Barr nearly 30 years ago. It was a refinement of my previous diagnosis: Chronic Fatigue Syndrome. I have now been refined further to Fibromyalgia. Personally, I think they are all the same. They are Syndromes, not Diseases because there are no conclusive tests to prove or disprove them and therefore no legitimate treatment, just palliative IF you have the right Dr. I am 70 years old and have suffered from lack of energy as long as I can remember. The only thing Drs ever found that was treatable was I had pernicious anemia...an iron and vitamins B deficiency anemia treated with supplements. I was 16 then and still get vit B shot monthly and, when iron and ferratin levels are too low also weekly IV infusions. Your son should have those 3 blood levels checked as it mimics symptoms of the "Syndromes" but is treatable if monitored. As far as CFS, E-B, and Fibro treatment for the symptoms telies on your Dr and a large majority of them consider them nonexistent or psychsomatic. From Mt long experience I would recommend you abandon your search for E:-B symptoms and Dave yourselves serious frustration time and clinical depression for your son and have him checked for anemia, kidney disease and heart abnormalities. Lastly, if you end up with the only diagnosis being "all in his head" have him start a very serious exercise regimen..it seems counterproductive but actually works quite well in boosting energy. I know it JURTS, I still cry every day but the after effects are worth it. Start with 30 min daily, half weight resistance and half cardio (important to do both every day). If he cannot stand 30 minutes at once do 15 minutes twice. Work up to at least 45 min nonstop or 60 minutes of he's moving slowly. Swimming is great if he has or develops any muscle aches and/or joint pain otherwise it usually isn't rigorous enough. I assure you he is not going to want to do this but if he wants some of his energy back and doesn't want muscle wasting this is the only option Drs have for him. Get the tests first to rule out anemia, heart and kidneys before he gets too good at the exercising but I'm sure he has shortness of breath with exertion currently so he'll start slowly anyway. I promise the results will be quite helpful but not 100% of what he'd like (be sure to tell him girls find muscles quite attractive). Good luck to you both, especially Mom since you'll be the Evil Enforcer for awhile. For muscle aches after exercise, if he has, ibuprofen, NO aspirin or pain killers known as NSAIDS like Alleve, Advil and definitely no opoids, they suck away your energy and the pain won't be that bad regardless of what he may say. Every day B4 my routine I remind myself I'm in training for the Olympics and I won't get there if I miss a day..no pain, no gain. My msg to your son is If you want something you don't have you're going to have to do something you haven't done!

Ditto w/fibromyalgia. Actually diagnosed with that in 1979. I am 69 and agree that all these are the same animal. Vitamin D levels are low in my case. Exercise is absolutely the key and it helps! I just go on and fight through it and that works for me. Never give in or will end up not moving. Hang in there.