Epstein Barr Virus (EBV) Community
can you help
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This patient support community is for discussions relating to Epstein Barr Virus (EBV), chronic EBV, and infectious mononucleosis (mono).

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can you help

I had mono when I was 30.  9 years later, I had a bout of something that is described in CF (it was diagnosed by a small-town doctor as depression).  I was diagnosed with Pneumonia and Bronchitis when I was fifty.  I have not had medical coverage for several years. Flu/colds are severe and last a long time. About three months ago, I had a cold.  My glands under my chin have been swollen ever since and my voice has become very hoarse. There is a swelling and soreness on my left side, under my ribcage.  I started looking up the hoarseness and ended up seeing a reference to Epstein Barr - Mono.  My mother gave me an article on CFS, when I was so sick at 39. That was the first time I heard of EB.  I haven't seen a doctor, as I am a retired senior on a fixed income.  I might be on the wrong track, but the info I have gotten so far, is the only thing that mentions the throat and side pain and mono together.  I would appreciate any suggestions you could give me.
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Avatar_f_tn
Firstly, generally mono (caused by Epstein Barr virus) doesn't usually give you mono like symptoms once you have had it but you can be infectious to others. As for chronic fatigue syndrome. They are undecided as to whether Eptein Barr vrisu or Human Herpes virus type 6 causes it or not. They haven't named any specific virus but there seems to be an association with it. To have CFS you have to have at least 4 symptoms, see below:

The main symptom of CFS is extreme tiredness (fatigue), which is:

New
Lasts at least 6 months
Not relieved by bed rest
Severe enough to keep you from participating in certain activities
Other symptoms include:
Feeling extremely tired for more than 24 hours after exercise that would normally be considered easy
Feeling unrefreshed after sleeping for a proper amount of time
Forgetfulness
Concentration problems
Confusion
Joint pain but no swelling or redness
Headaches that differ from those you have had in the past
Irritability
Mild fever (101 degrees F or less)
Muscle aches (myalgias)
Muscle weakness, all over or multiple locations, not explained by any known disorder
Sore throat
Sore lymph nodes in the neck or under the arms
If you do have 4 or more of these symptoms it could be chronic fatgue syndrome. But you should rule out lowered immunity, depression, muscle or nerve disease, tumors, and see if your white blood cell count is abnormal and get an MRI.
I know you don't have insurance but I don't know what else to say if you can't go in to see a doctor.In any case it seems like you have lowered immunity for some reason. This happens to all of us as we age but it could be due to a underlying problem.  Well, I don't if this helped.
By the way, were you in the military or work with dangerous chemicals, radioactivity or radiowaves? Could you have gotten Gulf War syndrome? My neighbor has symptoms like these and is fatigued after coming back from Iraq.


6 Comments Post a Comment
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Avatar_f_tn
Firstly, generally mono (caused by Epstein Barr virus) doesn't usually give you mono like symptoms once you have had it but you can be infectious to others. As for chronic fatigue syndrome. They are undecided as to whether Eptein Barr vrisu or Human Herpes virus type 6 causes it or not. They haven't named any specific virus but there seems to be an association with it. To have CFS you have to have at least 4 symptoms, see below:

The main symptom of CFS is extreme tiredness (fatigue), which is:

New
Lasts at least 6 months
Not relieved by bed rest
Severe enough to keep you from participating in certain activities
Other symptoms include:
Feeling extremely tired for more than 24 hours after exercise that would normally be considered easy
Feeling unrefreshed after sleeping for a proper amount of time
Forgetfulness
Concentration problems
Confusion
Joint pain but no swelling or redness
Headaches that differ from those you have had in the past
Irritability
Mild fever (101 degrees F or less)
Muscle aches (myalgias)
Muscle weakness, all over or multiple locations, not explained by any known disorder
Sore throat
Sore lymph nodes in the neck or under the arms
If you do have 4 or more of these symptoms it could be chronic fatgue syndrome. But you should rule out lowered immunity, depression, muscle or nerve disease, tumors, and see if your white blood cell count is abnormal and get an MRI.
I know you don't have insurance but I don't know what else to say if you can't go in to see a doctor.In any case it seems like you have lowered immunity for some reason. This happens to all of us as we age but it could be due to a underlying problem.  Well, I don't if this helped.
By the way, were you in the military or work with dangerous chemicals, radioactivity or radiowaves? Could you have gotten Gulf War syndrome? My neighbor has symptoms like these and is fatigued after coming back from Iraq.


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Avatar_m_tn
I was replying and my computer dropped it.  I don't have CFS now.  I had it in the past and it was misdiagnosed. I have researched the throat and left side pain thoroughly online and references keep being made to EBV and CAEBV.  One reliable source stated that after mono, some people are not immune and experience bouts of "mono like" sympyoms, sometimes for years and can, if unchecked, lead to some cancers.  At this point, I'm trying to learn the specific tests for EBV related and CAEBV, so that I don't go on a wild goose chase.  I know I have to see a doctor.  I'll check possible, local sources for help for that.  I agree that something is compromising my immune system.  Thank you so much for your reply.
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Avatar_f_tn
Oh I see, I mistook your question. Yes some cases of old mono or Epstein Barr virus can lead to Burketts Lymphoma I believe. But it is rare. I hadn't heard or read that you can get EBV symptoms chronically except for the reference to chronic fatigue. Generally they say you don't . I'll look again or you can at the CDC website and perhaps medscape etc. Also, the left side pain is because your spleen gets enlarged with mono. I also have a extra large microbiology reference book that may have more information on chronic or latent outbreaks of Ebstein Barr virus. Lowered immunity though is a possibility.
more later,
mkh9
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Avatar_f_tn
Hi again, I just opened my microbiology book and yes there is an "association" with Epstein Barr and some lymphomas. Associationas you probably know but I'll point out , is when the organism is there  when you have the disease but they don't know for sure it causes the disease. Although, if the statistics are really strong you can believe that it probably does cause certain types of lymphomas in certain populations. So, rarely, you can get severe chronic disease and  if immunosuppresssed you can get benign to malignant lymphomas. The Burketts lymphoma I mentinoned is in children usually in Africa, and  New Guinea.and in China Squamous cell carcinoma. They actually find the virus in the tumor. But that doesn't always mean it is the cause rather than it likes the type of tissue it seems to be a factor in "proving" since it is there then it caused it. There are some other rare B cell tumors but you have to have had a transplant or HIV or be very immunocompromised. But, here is one to note, EBV is associated with half of Hodgkins lymphomas and some gastric and salivary gland and lung cancers. So, that particular statistic makes me think the association is very strong to suggest that could cause Hodgkins but they don't know for sure yet. I guess since you have pain in the spleen area it would good to get a complete blood count (they would see atypical lymhocytes). Since you seem to get pneumonia and so forth your immune system could be low. Altthough again as we age we get more immunocompromised naturally. That is why the have the Pneumovax vaccine for elderly people so they won't get pneumonia. That is something to think about. I don't recallt he age for that possibly 65 or older. If you have any questions or you want the references I'll give them to you. Remeber these things are rare. But, they can check your blood to see if anything looks off. I hope this helps.
mkh9
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Avatar_m_tn
I think I found a test for CAEBV- for some kind of PCRs - I'm also keeping your blood test suggestion.  I certainly hope I don't have it.  In addition to what I'm trying to pinpoint, without a doctor's help, my brother died of throat cancer last fall and my mother was diagnosed with cancer in Feb. this year. I don't want to share this with my family yet (although she has commented on the noticeable change in my voice.)
I can't thank you enough for your time and effort and prompt reply.
God Bless You.
Bookson
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Avatar_f_tn
I'm so sorry for your losses. We also lost 3 people in the family in the last couple of years. I hope you don't have it either. Did your brother smoke or use tobacco? Do you? I hope not. But better to be safe. Let me know what you find out.
mkh9
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