Treatment for chronic Epstein-Barr virus (EBV)

This is a follow up on my CEBV condition. At 64 I believe I have had this illness for all of my adult life. It has only been in the past twelve months that the illness had progressed to a point that it was difficult to function. I had almost 20 UV treatments which seemed to help at first but then stopped helping with my fatigue. Back in April I thought I had my old self back but it didn't last long.
A new development over the past two months has been red irritated eyes. Two eye doctors I saw said my allergies were acting up. After several rounds of steroids both in eye drop form and pills the redness wasn't going away. My allergist thought that I possible might be having a reaction to some of the medicines I have been on and not due to environmental issues. I met with another eye doctor this week and after she reviewed my medical report she concluded that this was a direct result of the EBV. Finally an eye doctor who knew something about EBV. I did know that the virus has caused my blurry vision but hadn't heard anyone report about red eyes and some eye lid irritation. I'm now on Acyclovir the antiviral medicine and a eye drop perscription. The eye doctor believes this will clear up my eye issue.
Has anyone else had eye issues from EBV? I have read that others were also using the antiviral medicine. I'll report back the results next week.

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This is a follow up on my CEBV condition. At 64 I believe I have had this illness for all of my adult life. It has only been in the past twelve months that the illness had progressed to a point that it was difficult to function. I had almost 20 UV treatments which seemed to help at first but then stopped helping with my fatigue. Back in April I thought I had my old self back but it didn't last long.
A new development over the past two months has been red irritated eyes. Two eye doctors I saw said my allergies were acting up. After several rounds of steroids both in eye drop form and pills the redness wasn't going away. My allergist thought that I possible might be having a reaction to some of the medicines I have been on and not due to environmental issues. I met with another eye doctor this week and after she reviewed my medical report she concluded that this was a direct result of the EBV. Finally an eye doctor who knew something about EBV. I did know that the virus has caused my blurry vision but hadn't heard anyone report about red eyes and some eye lid irritation. I'm now on Acyclovir the antiviral medicine and a eye drop perscription. The eye doctor believes this will clear up my eye issue.
Has anyone else had eye issues from EBV? I have read that others were also using the antiviral medicine. I'll report back the results next week.

Jump to this post

Hi, all! I have been on a similar journey to you all for the last 8 or so years. I caught mono in high school, and not long after I went to college I became ill with the first of my chronic symptoms. It first started with swollen lymph nodes, migraines/sinus headaches, congestion/runny nose/sputum, constant low grade fever, raynauds syndrome, chronic fatigue then eventually progressed to sinusitis. I felt like my body was in constant over drive 24 hours a day. I tried every antibiotic and steroid I could and found no relief. I was also constantly getting sick with other visurses (strep, stomach virus, flu, pneumonia, etc) After seeing my immunologist/allergist he ran tests that showed my ebv levels were high, and explained to me that also discovered my T cells do not work properly. I was also told my I was also not allergic to anything but dust. He also ran ANA tests and they all came back negative. I then went on to see an infectious disease doctor. All of my tests came back fine. Next stop was an ENT. They performed surgery on my sinuses and that helped a bit, but later the infections came back. These symptoms have remained for the most part, but there have been new chronic symptoms that have been adding on top of the existing over the past few years. I also started to struggle with IBS, extreme migraines through out the week, and dry eyes. The dry eyes have gotten so bad since last year that my eye pain is constant. After seeing several eye specialists I have learned that the symptoms of dry eyes are the response to inflammation. I also now have 1 droopy eyelid. My neck (lymph node) pain has increased, low back pain, joint pain, constant dehydration, ulcers in my mouth, and low brain function/foggy thinking. I’m currently 27 and just retested for ebv. And yet again, it’s incredibly high. I’m starting to read the medical medium book and take it seriously because I feel like the virus is taking over my entire body. My next step is to find a naturopath that knows something of CAEBV as well. Will keep you all posted on the book and scouting out a naturopath.

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Hi, all! I have been on a similar journey to you all for the last 8 or so years. I caught mono in high school, and not long after I went to college I became ill with the first of my chronic symptoms. It first started with swollen lymph nodes, migraines/sinus headaches, congestion/runny nose/sputum, constant low grade fever, raynauds syndrome, chronic fatigue then eventually progressed to sinusitis. I felt like my body was in constant over drive 24 hours a day. I tried every antibiotic and steroid I could and found no relief. I was also constantly getting sick with other visurses (strep, stomach virus, flu, pneumonia, etc) After seeing my immunologist/allergist he ran tests that showed my ebv levels were high, and explained to me that also discovered my T cells do not work properly. I was also told my I was also not allergic to anything but dust. He also ran ANA tests and they all came back negative. I then went on to see an infectious disease doctor. All of my tests came back fine. Next stop was an ENT. They performed surgery on my sinuses and that helped a bit, but later the infections came back. These symptoms have remained for the most part, but there have been new chronic symptoms that have been adding on top of the existing over the past few years. I also started to struggle with IBS, extreme migraines through out the week, and dry eyes. The dry eyes have gotten so bad since last year that my eye pain is constant. After seeing several eye specialists I have learned that the symptoms of dry eyes are the response to inflammation. I also now have 1 droopy eyelid. My neck (lymph node) pain has increased, low back pain, joint pain, constant dehydration, ulcers in my mouth, and low brain function/foggy thinking. I’m currently 27 and just retested for ebv. And yet again, it’s incredibly high. I’m starting to read the medical medium book and take it seriously because I feel like the virus is taking over my entire body. My next step is to find a naturopath that knows something of CAEBV as well. Will keep you all posted on the book and scouting out a naturopath.

Jump to this post

This is a follow up on my CEBV condition. At 64 I believe I have had this illness for all of my adult life. It has only been in the past twelve months that the illness had progressed to a point that it was difficult to function. I had almost 20 UV treatments which seemed to help at first but then stopped helping with my fatigue. Back in April I thought I had my old self back but it didn't last long.
A new development over the past two months has been red irritated eyes. Two eye doctors I saw said my allergies were acting up. After several rounds of steroids both in eye drop form and pills the redness wasn't going away. My allergist thought that I possible might be having a reaction to some of the medicines I have been on and not due to environmental issues. I met with another eye doctor this week and after she reviewed my medical report she concluded that this was a direct result of the EBV. Finally an eye doctor who knew something about EBV. I did know that the virus has caused my blurry vision but hadn't heard anyone report about red eyes and some eye lid irritation. I'm now on Acyclovir the antiviral medicine and a eye drop perscription. The eye doctor believes this will clear up my eye issue.
Has anyone else had eye issues from EBV? I have read that others were also using the antiviral medicine. I'll report back the results next week.

Jump to this post

This is a follow up on my CEBV condition. At 64 I believe I have had this illness for all of my adult life. It has only been in the past twelve months that the illness had progressed to a point that it was difficult to function. I had almost 20 UV treatments which seemed to help at first but then stopped helping with my fatigue. Back in April I thought I had my old self back but it didn't last long.
A new development over the past two months has been red irritated eyes. Two eye doctors I saw said my allergies were acting up. After several rounds of steroids both in eye drop form and pills the redness wasn't going away. My allergist thought that I possible might be having a reaction to some of the medicines I have been on and not due to environmental issues. I met with another eye doctor this week and after she reviewed my medical report she concluded that this was a direct result of the EBV. Finally an eye doctor who knew something about EBV. I did know that the virus has caused my blurry vision but hadn't heard anyone report about red eyes and some eye lid irritation. I'm now on Acyclovir the antiviral medicine and a eye drop perscription. The eye doctor believes this will clear up my eye issue.
Has anyone else had eye issues from EBV? I have read that others were also using the antiviral medicine. I'll report back the results next week.

Jump to this post

This is a follow up on my CEBV condition. At 64 I believe I have had this illness for all of my adult life. It has only been in the past twelve months that the illness had progressed to a point that it was difficult to function. I had almost 20 UV treatments which seemed to help at first but then stopped helping with my fatigue. Back in April I thought I had my old self back but it didn't last long.
A new development over the past two months has been red irritated eyes. Two eye doctors I saw said my allergies were acting up. After several rounds of steroids both in eye drop form and pills the redness wasn't going away. My allergist thought that I possible might be having a reaction to some of the medicines I have been on and not due to environmental issues. I met with another eye doctor this week and after she reviewed my medical report she concluded that this was a direct result of the EBV. Finally an eye doctor who knew something about EBV. I did know that the virus has caused my blurry vision but hadn't heard anyone report about red eyes and some eye lid irritation. I'm now on Acyclovir the antiviral medicine and a eye drop perscription. The eye doctor believes this will clear up my eye issue.
Has anyone else had eye issues from EBV? I have read that others were also using the antiviral medicine. I'll report back the results next week.

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My husband developed CAEBV about a year ago and we've been trying to get in to see an ID Doc for almost a year. I have a feeling its a waste of time though because we don't have the best and brightest in my town. there is very little information and research on this virus in the medical literature, unfortunately, BUT they are looking for candidates for studies. I'm discussing that possibility with my husband. in the meantime ANY helpful strategies to deal with this debilitating illness is greatly appreciated!

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