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memecat28
@memecat28

Posts: 2
Joined: Feb 08, 2018

Is chronic reactivated EBV different from chronic active EBV?

Posted by @memecat28, Wed, Feb 7 7:16pm

I was just told I tested positive for all Epstein Barr Virus tests, except for the one that says you were recently infected. I was told I have Chronic Reactivated Epstein Barr Virus, and that I would be referred to an infectious disease doc. I started to research and everything keeps coming up with Chronic Active Epstein Barr, which seems to be a rare form and serious. Are these two forms different?

Liked by bandolsmom

REPLY

@memecat28, welcome to Connect and thank you posting this question. Because my own knowledge is also limited, I did a bit of research on Mayo Clinic’s website. I was able to find a response from James M. Steckelberg, M.D. of the infectious diseases department:

“Most cases of mononucleosis are caused by infection with the Epstein-Barr virus (EBV). Once you’re infected with EBV, you carry the virus — usually in a dormant state — for the rest of your life. Periodically, however, the virus may reactivate. When this happens, the virus can be detected in your saliva — but you’re not likely to become ill. Rarely, reactivated EBV may cause illness in people who have weak immune systems, such as those who have AIDS.

Mononucleosis rarely leads to a serious condition called chronic active EBV infection, which is characterized by persistent illness more than six months after the initial mononucleosis diagnosis.”

I am not a medical professional, but I interpret reactivated as testing positive again but likely without symptoms and active EBV as having persistent symptoms that do not go away, which can be serious.

@memecat28, you mentioned you did your own research so I apologize if this is repeat information. If you don’t mind sharing, are you currently experiencing symptoms?

Liked by nacc

I was diagnosed in May 17 with EBV Mono. Dr. said maybe 6 months and i am still experiencing fatigue. I am 56 yrs old . It has changed me completely, im always tired so i try to plan very little anymore. My body is in constant pain anymore and I think it is due to Mono. Every muscle aches on me besides the arthiritis in hands feet etc. I prefer to sit still and not move , this was not me prior.
Who should i see , does this sound the same for someone else?

Liked by nacc, peachybelle

@JustinMcClanahan

@memecat28, welcome to Connect and thank you posting this question. Because my own knowledge is also limited, I did a bit of research on Mayo Clinic’s website. I was able to find a response from James M. Steckelberg, M.D. of the infectious diseases department:

“Most cases of mononucleosis are caused by infection with the Epstein-Barr virus (EBV). Once you’re infected with EBV, you carry the virus — usually in a dormant state — for the rest of your life. Periodically, however, the virus may reactivate. When this happens, the virus can be detected in your saliva — but you’re not likely to become ill. Rarely, reactivated EBV may cause illness in people who have weak immune systems, such as those who have AIDS.

Mononucleosis rarely leads to a serious condition called chronic active EBV infection, which is characterized by persistent illness more than six months after the initial mononucleosis diagnosis.”

I am not a medical professional, but I interpret reactivated as testing positive again but likely without symptoms and active EBV as having persistent symptoms that do not go away, which can be serious.

@memecat28, you mentioned you did your own research so I apologize if this is repeat information. If you don’t mind sharing, are you currently experiencing symptoms?

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I am. I complained of chronic fatigue to my doctor at my new patient appointment and she ordered an array of tests. Everything came back normal except for vitamin d was low and the EBV tests were positive. I don’t really remember a point in my life I wasn’t tired, it was always just explained by life corcumstances. My previous doctor told me my intermittent chest pain, palpatations, muscle pain, fatigue and general malaise was all anxiety. My new doc has actually listened to me and ordered tests. Lately I have just been very fatigued and my lymph nodes are swelling off and on and I occasionally have a low grade temp.

It has been 9 months for me and I still take naps and now i have widespread pain throughout my body as if arthiritis as taken ovet my entire body .Its hard to walk and I just don’t want to move my body at all because of it. Before Mono i was a non stop person.I cant get anyone to truly heear me who specializes in this

Liked by nacc

I too have been feeling the effects for six months. I’ve gone to numerous doctors. Right now I waiting for an appointment with a doctor to start (I hope) the Light UV blood treatments. Once I have some more information about this therapy and other related therapies I will pass it along. It has taken me a while to find a doctor who will address my fatigue issues. I’m certainly not the person I used to be. I went from being very active to no physical activities.

@michellebelle

I too have been feeling the effects for six months. I’ve gone to numerous doctors. Right now I waiting for an appointment with a doctor to start (I hope) the Light UV blood treatments. Once I have some more information about this therapy and other related therapies I will pass it along. It has taken me a while to find a doctor who will address my fatigue issues. I’m certainly not the person I used to be. I went from being very active to no physical activities.

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Oh thank you for the reply and keep me posted. Its just nice to have others validate what I’m experiencing.

Anyone experience having a enlarged spleen on and off after have mono or EBV? i had mono about 13 years ago. Mine is currently enlarged , but i have no other symptoms. Typically i have this feeling when stressed, sick or i drink. I know the feeling as when i had Mono it was extreme and my spleen was significantly enlarged and throbbed. This has been going on for the past 13 years and finally i went into the doctor during one if its episodes. They can feel my spleen. I am getting blood work and will have imaging done this week. The doctor doesn't think it is cancer as it has been going on to long without any other symptoms. i have had my full blown blood panel done several times over the past few years and everything has been normal. I am nervous but feel this may be the EBV in me that keeps striking when i am worn down and week. any thoughts?

My husband was diagnosed with CAEBV about a year ago & our doc referred us to an ID specialist. Unfortunately, we didn't know the guy was semi retired, & we couldn't seem to get in. So now, he's finally gotten in to see another ID Dr., who is running all the same labs as before. So we have to get the diagnosis confirmed. Was hoping to find out more info…
Anyway, initially he had mono symptoms for several weeks & then seemed to be doing really well for a while. Here lately, he feels bad, and I've noticed he looks pale when he exerts himself, tho his blood work has not shown he's anemic. Anyway, so glad there is a forum here and hoping to find some good treatment options for him.

Liked by Jamie Olson

@acapulcoheart

I was diagnosed in May 17 with EBV Mono. Dr. said maybe 6 months and i am still experiencing fatigue. I am 56 yrs old . It has changed me completely, im always tired so i try to plan very little anymore. My body is in constant pain anymore and I think it is due to Mono. Every muscle aches on me besides the arthiritis in hands feet etc. I prefer to sit still and not move , this was not me prior.
Who should i see , does this sound the same for someone else?

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Sounds exactly like me. I have an awesome PCP who listens and acts. Symptoms began before April but then intensified so I knew something serious was wrong. He ran labs, then referred my to a rheumatologist and then to a Oncology/hematologist in the department I actually work in! I had horrible unexplained bruising all over my body, they just appeared. Diagnosis: Chronic Reactivated EPV. I would start with finding a good PCP. If I didn’t have a good Primary Care Doc I would likely have a mental breakdown as well. He told me today that this illness could last up to a year or become Chronic Fatigue Syndrome which lasts forever. I hope to hear more from you as your symptoms seem so similar and I’d like to hear how you’re managing. Blesssings

@lauraeinga

My husband was diagnosed with CAEBV about a year ago & our doc referred us to an ID specialist. Unfortunately, we didn't know the guy was semi retired, & we couldn't seem to get in. So now, he's finally gotten in to see another ID Dr., who is running all the same labs as before. So we have to get the diagnosis confirmed. Was hoping to find out more info…
Anyway, initially he had mono symptoms for several weeks & then seemed to be doing really well for a while. Here lately, he feels bad, and I've noticed he looks pale when he exerts himself, tho his blood work has not shown he's anemic. Anyway, so glad there is a forum here and hoping to find some good treatment options for him.

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@lauraeinga Has your husband's ID doc recommended any treatment?

@acapulcoheart

I was diagnosed in May 17 with EBV Mono. Dr. said maybe 6 months and i am still experiencing fatigue. I am 56 yrs old . It has changed me completely, im always tired so i try to plan very little anymore. My body is in constant pain anymore and I think it is due to Mono. Every muscle aches on me besides the arthiritis in hands feet etc. I prefer to sit still and not move , this was not me prior.
Who should i see , does this sound the same for someone else?

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@christinemorse I hope you are feeling better. Have any of your doctors recommend treatment for the EBV?

I tested positive for EBV in 2016 despite the fact I had mono while a teenager. Quite frankly, most doctors do not understand this disease or shrug it off with the belief that mono only comes once. If any out there truly know of a good doctor that understands EBV can become reactivated. please let us know. I live in florida

darkmatter53, I too live in Florida and am always trying to find medical doctors who understand and treat EBV. I am currently seeing a Natural Medicine doctor who is treating me for EBV. I under went ultra violet treatments which works for a while and then I fell right back to my old ill self. Now I'm being treated with amino acid peptide shots. So far I don't feel any difference. Reply and let me know where you live. I did find a practice in Tampa that I was willing to travel to for treatments. I live in The Villages between Ocala and Leesburg.

@michellebelle

darkmatter53, I too live in Florida and am always trying to find medical doctors who understand and treat EBV. I am currently seeing a Natural Medicine doctor who is treating me for EBV. I under went ultra violet treatments which works for a while and then I fell right back to my old ill self. Now I'm being treated with amino acid peptide shots. So far I don't feel any difference. Reply and let me know where you live. I did find a practice in Tampa that I was willing to travel to for treatments. I live in The Villages between Ocala and Leesburg.

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Hi, I live in winter haven. I am going through the bad cycle right now. I am trying natural supplements but no improvement noted. I may request my doctor treat me with antivirals but he is a conservative doctor. thanks for your response. Regards, Frank

@michellebelle

darkmatter53, I too live in Florida and am always trying to find medical doctors who understand and treat EBV. I am currently seeing a Natural Medicine doctor who is treating me for EBV. I under went ultra violet treatments which works for a while and then I fell right back to my old ill self. Now I'm being treated with amino acid peptide shots. So far I don't feel any difference. Reply and let me know where you live. I did find a practice in Tampa that I was willing to travel to for treatments. I live in The Villages between Ocala and Leesburg.

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Hi Michelle, Please keep me posted on your condition and good luck with your treatments. I have lived with this stuff for 18 years now. Seems more like 40. Have they found any other infections with you?. So far the only thing they have found on me is the Epstein. And even then, some of my doctors say it is an old infection. Go figure. Anyway, good luck….regards, Frank

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