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Strange mono results

Hello! I would greatly appreciate any advice.  For the past 4 months, I have had swollen lymph nodes in my groin (that come and go) and two small ones in my neck (that remain constant, do not get bigger or smaller).  I finally went to the doctor last week and she ran some blood work, including EBV and CMV.  She called me back to say that they all came back normal, and because I've had the swollen nodes for so long with no infection, she was referring me to a hematologist.  I saw the hematologist a few days later and he could barely feel the swollen nodes but since my doctor had, he wanted to do a full body CT scan and more blood work.  He called me the next day to say that my monospot came back positive and to cancel my CTs, that I have mono.  My question is, how can I have mono if my EBV & CMV were negative?  I am reading now about false positive monospots due to lymphoma and leukemia and I am freaking out.
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1415174 tn?1453243103
Hepatitis, Toxoplasmosis, Lupus are some of the other reasons for a false positive Monospot test. Do you have  a dog or cat?

From the CDC
"Testing paired acute- and convalescent-phase serum samples is not useful to distinguish between recent and past EBV infections. In most cases, the antibody response occurs rapidly during primary EBV infection. The clinical findings of infectious mononucleosis occur in conjunction with the appearance of IgG and IgM anti-VCA antibodies. However, the antibody pattern is not stable before symptoms appear."

That is why I mentioned the Early antigen, Nuclear and VCA is better to check.

Regards,
mkh9
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1415174 tn?1453243103
Monospot is not that specific. They are not supposed to use the mono spot test as a diagnostic tool by itself. Rather if you have all the other symptoms positive then it can help point the way in diagnosis. If you don't have mono it isn't useful. The more useful tests if the EBV early antigen, EBV nuclear antigen, and viral capsid antibodies. This  type of testing can show better results for EBV. Your EBV IgG and IgM didn't have this information did it?  If not the doctor really should have done that kind of testing. I would ask for it in my opinion. It is more accurate. Regarding the lymph nodes in your neck. You can have those for about 4 months after mono. If the doctor is basing the diagnosis on the lymph nodes and the monospot with no fever and no sore throat no swollen spleen I don't agree. You had it before so you can't get it again. Did you tell him you had mono in the past?
mkh9
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Avatar universal
So based on both sets of results, I haven't had a recent infection with cmv or ebv, so I don't understand why I tested positive on the monospot twice now.
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Avatar universal
9/16/14: CMV IgG AB 6(H)
7/25/14: CMV IgG AB 5 (H)

9/16/14: CMV IgM AB 0.30
7/25/14: CMV IgM AB 0.20

Monospot - POSITIVE

EBV IgG and IgM all <0.2
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1415174 tn?1453243103
Also, sometimes the doctor tries to see if you had no antibodies before and after and that is not the case either with the CMV. igG.
mkh9
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1415174 tn?1453243103
Usually IgG is for past exposure. IgM is present exposure. Almost all of us have been exposed to CMV as a child. So I would really worry about it. To tell if it is a new infection you would have to have a 4 fold rise in the value from IgM to IgG over about a month or two. So one point means nothing. Did you have the IgM done for CMV too about a month before this IgG test? if not it looks like past infection.
mkh9
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Avatar universal
That's ok! It doesn't give a range.  It just says

9/16/14: CMV IgG AB 6(H)
7/25/14: CMV IgG AB 5 (H)

I am assuming H means high, but it doesn't have the word positive by it.
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1415174 tn?1453243103
Sorry I just got your message. That is good about the EBV results. What are the normal ranges for the CMV that did? I can look up the general ones but they vary some from lab to lab. The small change in the IgM doesn't make a difference. It depends on what the normal range is.
mkh9
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Avatar universal
hello! thank you for all your help.  i had the blood work repeated.  still positive for monospot.  but ebv iGg and iGm are still negative - both <0.2.

Cmv igM was 0.2 and now is 0.3.  Cmv igG was 5, and is now 6.  
Helpful - 0
1415174 tn?1453243103
I would say get your blood tested at a different lab if you can. The mono spot will probably still come up positive but just realize it is probably false positive. So you can do it to see if it comes up negative this time or skip it. It isn't recommended or necessary. The EBV panel should have the Early antigen, the EBV nuclear antigen, and EBV viral capsid antibody for IgM and IgG. If it doesn't I wouldn't do it. You can ask them for this and you have the right. The restrictions are your insurance may limit which labs you choose depending on your plan. You can find out which labs tests for these or call your insurance to ask which laboratories are in your plan then look them up on line and see if they do these tests. For example if your insurance says you can use Quest diagnostics and lab corp and what ever other lab you can look those up and either look on line. Or possibly ask their tech support.  You can always do more testing later if you need to. Unless you want to find out why you are so tired. At this point it could be anything.

Regarding the complete blood count or CBC: It sounds like you had some type of infection either the white cells were high (leukocytes) or the lymphocytes were high (also a type of white cells).  The leukocytes go up with bacterial infections somewhat  and very high with other diseases. The lymphocytes can also go up with some infections such as viral infections or go down. Other disease they can go very very high.

My question to you is how do you know you were positive for EBV or mono the first time (a long time ago)? Did you have the sore throat, high fever, swollen lymph nodes etc. and positive tests before?

By the way, you can have Herpes (oral) without ever having cold sores. About 90% of adults have the antibody to this as well.
thanks,
mkh9
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Avatar universal
I do not get any cold sores.
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Avatar universal
All the doctor said was "yes, you tested negative for the Epstein barr tests" then said even the ig..something.. and I believe he said EIA as well.  He did run a CBC and said it was all normal except slightly elevated lymphocytes or leukolytes? sorry I cant remember which.  he said he wasn't worried about that.  

I SO appreciate your help.  I called my GP and asked for repeat monotests next week.  I said monospot and the Epstein barr tests - should I have asked for something else?

Again, thank you.
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1415174 tn?1453243103
No I don't see that the monospot is ever found in chronic forms of EBV. I did see that sometimes Herpes simplex can also make the monospot false positive too. So if you get cold sores that may be also another factor.
mkh9
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1415174 tn?1453243103
Also, if you did have mono before you can't get it actively again. This is because you body should have antibodies against it. Thus, you should have a positive IgG. I am going to see if chronic EBV can have a positive mono spot when you reactivate.
mkh9
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1415174 tn?1453243103
Well, if you had mono before your IgG antibody would be positive for EBV . So I don't understand the doctor saying it could be negative. Once it is positive it is positive for life. Your symptoms are not that of acute mono. You may have chronic EBV or chronic fatigue syndrome. That occurs when the virus reactivates once in a while. I would get another test that shows your EBV nuclear antigen, Early antigen , IgG viral capsid antibody and IgM viral capsid antibody. They may have done some rapid test like and EIA (enzyme immunoassay) that isn't as specific and can have false positives and negatives It doesn't add up. Did you have a complete blood count or CBC? If not ask for one. Get a second opinion from another doctor.
mkh9
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Avatar universal
Thank you so much for the response.  

No, no fever or sore throat.  Just the swollen lymph nodes and feeling tired/run down.  I don't have a copy of the blood work, but they said I tested negative for EBV (and mentioned negative for igG IG something else??).  All that came back positive was the monospot. I do not have any pets, and no tick bites, I am sure I don't have rubella.  I believe I had mono in high school, almost 10 years ago.  I am not immunovompromised, I am an otherwise healthy 27 yr old female.  
Helpful - 0
1415174 tn?1453243103
Did you have the acute symptoms of mononucleosis of sore throat, high fever, swollen lymph nodes in the neck and sometimes tender spleen? The complete blood count also usually shows a high number of atypical lymphocytes (not monocytes). Was your test for EBV all negative. The Early antigen or EA, Viral capsid antibody both Igm and IgG both negative, and EBV NA or nuclear antigen?  By 4 months the lymph nodes should go down so that is why they were small in the neck by then. Were they bigger to start with? Yes the monospot does give false positives. It is also false positive for Hepatitis, Rubella, Lupus and other auto immune diseases, Toxoplasmosis, and rarely lymes disease. So no it is not just for lymphoma and leukemia. Since 90% of people usually have IgG antibody to EBV I wonder if the antibody test you took is accurate? You may want to get that repeated. Do you have any pets? Have you been vaccinated for Rubella? Have you been bitten by a tick that you know of? That doctor doesn't have much knowledge of mono and jumps to conclusions. I would like to know what he is basing his premise on? If you had all the other symptoms before you should have IgG antibody unless you are immunocompromised (have low immunity).
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