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Chronic Mono???

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I have been having the symptoms of low-grade fever and severe fatigue every day for 7 months, dizziness,nausea, ringing in ears, anxiety off and off for 7 months. I was diagnosed with Mono 5 months ago and I did have 2 of the episode of sore throats. That has been 4 1/2 months ago since then. I have had my blood drawn since then but the Mono test is now Negative, but doctors insist it is still Mono... I am taking vit C and minerals and eat healthily, but I do not seem to improve. And the fever has not gone away at all.. I have been tested for all kinds of other infections and auto-immune disorders and they were all negative.

Does it sound right to have Chronic Mono but now have a negative test??

Thanks!!
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replied October 30th, 2008
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First off, I'm sorry to hear about your condition. It sounds very difficult to be able to manage life with the symptoms that you describe!

It sounds like you need rest! Is there any way that you can take 1-2 weeks off from whatever you're doing (school, work, etc.) for rehabilitation? It sounds like your body needs some TLC in order for the immune system to get back up and running.
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replied October 30th, 2008
Thanks for your concern!

I have been trying to take it easy, though I am a single mother of 2 young children and I receive slim to none for help. I am not working anymore, I did lose my job because of this. I try to rest as much as I can, but nothing seems to help. Sad
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replied November 3rd, 2008
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You poor thing! I'd suggest that you call your doc's office to identify which tests they administered. There are a couple for mono. There is the Epstein-Barr Virus Antibodies Test and the Mononucleosis spot test. Doctors also order a complete blood count. There seem to be two possibilities right now.

1. You have a negative mono spot test with symptoms and reactive lymphocytes are present and you may be in the small number of people who do not make heterophile antibodies. Other EBV antibodies and/or a repeat mono test may be performed to help confirm or rule out the mononucleosis diagnosis.

2. You may present a negative mono test and display few or no reactive lymphocytes. This means that you may be infected by another microorganism that is causing mono-like symptoms (such as a cytomegalovirus (CMV) or toxoplasmosis).

When the mono test is negative and/or the doctor wants to obtain more information about the presence and status of an EBV infection, she may order one or more of a combination of EBV antibodies. These tests can indicate whether you are susceptible to EBV, have had a recent infection, have had EBV infection in the past, or have a reactivated EBV infection.


I hope this helps! I think you should return to the doctor and follow up. I'm rooting for you!
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replied December 19th, 2008
negative test
My doctor tested my blood for mono like six times for mono, each one coming up negative. But they finally sent a sample to some lab in California and it came back positive. I think what he said was that my body wasn't producing the things normally found to fight off mono so they thought it was negative.

I can't imagine having mono while also caring for children, but if you do have that, something that helps me is to schedule everything. I write everything down, and I make sure I'm taking care of the minimum that I need to. Everyone says that's all you can do anyway (:

I hope you feel better / get answers soon!
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replied September 16th, 2009
CRONIC MONO TAKING TOLL ON LIVES?
My daughter who is in her sr year of college is apparently dealing with cronic mono. we have been dealing with her symptoms for 4 yrs off and on. her blood work revealed active mono twice. but the dr did not diagnose her with cronic mono. now her symptoms have returned. she is a full-time student who works 20-30 hrs per week while maintaining a 4.0! this condition is taking a toll on her mentally and physiccally. she goes to college about 60 miles away and lives there. her dr is in this area and she cannot take time off from school as that caused her to lose my insurance for a semester a year ago and she has to have that!!! i have great hope for future treament for this condition. is any research for treatment being done???? she is at the end of her rope. i have had to make an appointment with a counselor for her severe depression from this!!!!
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replied December 14th, 2009
chronic mono
Almost 7-8 months ago my health insurance expired and I unluckily got sick. There were aches all over my body plus about 100 other symptoms. I was weak all the time and could hardly hold food down because I couldn't swallow anything. It got so bad I was rushed to the er (this could have been also due to the severe anxiety I had)... but they could find nothing wrong..it would make sense because I think the last thing they'd think of is to test me in the er for this.

Today I came randomly across some information about mono. Yesterday just saw a white spot that looks a little similar to "mono throats" I googled. Im still a little hesitant to know if I found the answer to my problems, until I heard about chronic mono. Hopefully my insurance wont get declined so I can get tested.

Sigh. I hope to God I can find an answer to this mysterious illness once and for all.

Btw if anyone is interested, I heard that coconut oil has helped drastically with this virus. Maybe it will help you?
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replied June 6th, 2010
Hello all-- I had what I would describe as chronic mono for about a year. People kept suggesting that depression might be allowing the mono to stick around. I always shrugged off the thought of depression, but finally I started taking an anti-depressant (Effexor). Eventually this allowed me to regain my strength and kick the mono. I write now because I just tried going off the Effexor and within a week have started feeling like the mono might be back. I've restarted taking the Effoxor and will try for a faster recovery this time. I just wanted to mention the anti-depressant option, because I can honestly say that it saved my life. I understand how debilitating and frustrating "chronic mono" can be, so you might want to try an anti-depressant if you haven't already.
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replied August 26th, 2011
Reactive Mono
I have been fighting what I thought was chronic fatigue for almost 11 years (and I am only 35). After thyroid testing, accupuncture, diet change, regular sleep habits, cutting out caffiene- nothing has made me feel better except an adrenal supplement (company changed the formula and it stopped working after only 1 month). I went to a naturopath today and she thinks I might have (had?) reactive mono. Back in 2000-2001 I was getting sick all the time, plus a lot of other symptoms but I thought it was for different things. She said if I got mono, and then reactive mono, that if they don't test it right when I get the mono, the reactive mono can cause false negative test results. I do have the EBV (which I don't think you can ever get rid of, just suppress), and they did blood work today to find out my levels. There is also a gene mutation she is checking on. I don't know for sure what my outcome is yet, but for once I have hope! I am so tired of doctors making me feel like I am making it up just beccause they can't find something in their tests. I know that something is wrong with me. No one is this tired, has this much brain fog, or this much lack of motivation for no reason. And if I'm depressed its because I'm so stressed out that no one can figure out what is wrong with me!!! I am REALLY hoping something will come back so I can at least figure out what I have. That way I can start trying to fix it. =) I wish you all the best of luck in your diagnosis/recovery!
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replied July 10th, 2012
My daughter had mono when she was sixteen years old. She continued the extreme fatigue daily after recovering. She did play sports and had a hard time keeping her stamina. I took her back for extensive tests when she was eighteen and was told she still has the mono virus in her system and has high white blood count. They tested her for everything you could think of and now labeled it chronic fatigue syndrome, because the could not find anything else. She is now twenty one and still has extreme fatigue as well as high white blood count levels. Told us we have to watch for certain types of cancer. This has been very hard on her because she never feels great, but she keeps pushing. So I am glad to read your stories and to share ours.
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