Teen with weird mono...or not?

Posted by barbus22 @barbus22, Mon, Feb 11 10:47pm

My 16 year old son started to feel weak a few weeks ago. So weak, he could not get out of the bed. He also had low grade fever, so since the flu started going around, we quickly got him tested so if it is the flu, we could start Tamiflu. It was negative. Day four of the same, he had a very painful neck and could barely move his head, together with fever and malaise. We rushed him to the ER to rule out meningitis. They ran blood tests and his CRP was 197 and he also had elevated white blood cells. They were saying it was not meningitis and wanted to send us home, but they quickly did a monospot test, which was positive. They sent us home, saying it was mono. We had to follow up with the pedi in a few days. When we went to see her, she looked at his blood test results and said it did not look like mono. She ordered an arrey of tests (viral panel, CMV, bartonella, blood culture, flu again, etc) and the EBV test. Everything was negative, except he still had the same elevated CRP and the EBV test showed past infection, according to her. His igG was positive, igM negative and his nuclear igG was also positive. She said it meant he did NOT have acute mono infection, but it is rather something else. We were sent home to wait and see if he gets better in a few days. Meanwhile, my kid had been sicker than ever. No cold symptoms, but no energy, fever, sweating, and a lot of discomfort. I am talking about a 16 year old who did not touch his xbox remote for 10 days. One night his fever spiked up to 103, than dropped to 95 so we went back to the ER. They were very rude and sent us home that they already told us it was mono and he will get better. The pediatrician the next day said she still doesn’t believe them, so we should go and see an ID specialist. However, right after that fever episode, he started feeling better. We let him rest for 3 more days and he went back to school. He was able to go to school for a week and a half without symptoms and we were releived. Unfortunately, this past Friday night, he relapsed. Fever came back and the poor kid has been in bed ever since. He has never had a sore throat or any cold symptoms, except for a bad dry cough. His lungs are clear. The only thing we know is that he has a negative igM titer, the other two are positive, monospot positive, elevated white blood cells, liver enzyme was slightly elevated and roof high CRP. 16 days of fever, 9 days of feeling perfectly well, and now day 3 with fever. They did a blood test today and we are waiting for the results. I have been researching like crazy to try to find some explanation. If anyone has any similar experience, would appreciate the input. We will see an ID dr for sure and I would want to be prepared. Thank you!

Hi @barbus22 and welcome to Connect. That must be exasperating and frightening being unable to find a reason for your son feeling so awful.

I wanted to share this thread on Epstein-Barr Virus as @cummings3 has a similar story to yours: https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/?utm_campaign=search&pg=1#chv4-comment-stream-header

I also wanted to introduce you to fellow Connect members @mrmie and @momnxtdr as they have experienced similar symptoms themselves or with a loved one and may be able to help you find answers or provide support.

Back to your son, when will you hear about your test results? Have you set up an appointment with an infectious disease doctor?

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@barbus22 I can't imagine as his mom that you must be working your ass off to figure this out. Check into Chronic Epstein Barr Virus. Keep us posted.

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@ethanmcconkey

Hi @barbus22 and welcome to Connect. That must be exasperating and frightening being unable to find a reason for your son feeling so awful.

I wanted to share this thread on Epstein-Barr Virus as @cummings3 has a similar story to yours: https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/?utm_campaign=search&pg=1#chv4-comment-stream-header

I also wanted to introduce you to fellow Connect members @mrmie and @momnxtdr as they have experienced similar symptoms themselves or with a loved one and may be able to help you find answers or provide support.

Back to your son, when will you hear about your test results? Have you set up an appointment with an infectious disease doctor?

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Thank you @ethanmcconkey for the welcome and introducing me to other members. I will check out the linked post in a minute.

We got his results back and hes EBV antibodies are exactly the same, however, his CRP is 237. His white blood cell count is also elevated. We got an appointment with an ID specialist for Thursday, so I hope we will know more.

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Hi @barbus22 . I am so sorry for the difficult illness your son is going through. I know it is frustrating not knowing what is going on. Keep in mind I can't diagnose/treat. I joined this group because I was struggling with recurrent EBV as an adult. However, back to your son. The monospot test is not always accurate, so it is possible that it is not mono caused by EBV. Here is a link that has more info on EBV testing and interpreting results. ebvhelp.com
There are so many viruses and other illnesses that can mimic the same symptoms your son is having. I'm glad you are seeing infectious disease tomorrow. Write down any questions and take them with you. You are your son's best advocate. Keep searching. Don't give up.

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I’m a little late to this thread, but I recently had an episode of mono-like symptoms. The quick mono test showed a “weak positive” and the full blood panel showed positive for both igG but negative for igM which was interpreted as “recent infection” which was most likely from the first time I had mono two years ago. My only symptoms now are a sore throat and I can feel cramping near my spleen even though my PCP said it wasn’t enlarged. How is he doing now? Anyone else can relate?

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I had mono two years ago, had it pretty bad too. Last Friday, six days ago, started having abdominal pain and diarrhea really bad for an hour or two and then it went away. Three days later, Monday morning I woke up with mild body aches, and had that eerie feeling that sickness was sneaking up on me. Within an hour or two I was running a mild fever (100.4), had a very mild sore throat, and body chills and horrible body aches. Vomited once, had bad diarrhea a few more times over the next 24 hours, and then Tuesday morning I woke up feeling relatively better. No fever, no chills or aches, and just a mild sore throat. By the end of the evening a fever rapidly set upon me with the aches and chills, and only go to around 100.5 before I took ibuprofen and dozed off the sleep. Wednesday morning, yesterday, I went straight to my Primary care physician and mentioned that one of my old friends had gotten mono a second time before so I asked her to test me for it. She also did a rapid strep test, which came back negative and the mono blood test came back as a "weak positive." She then sent me for more blood work which should confirm our suspicions. Still waiting on that and the step culture as well today, Thursday. I don't feel fatigued or tired like I did last time I had mono, just a little lazy feeling since I've been in bed for the past three days taking it easy.

My question is has anyone else had an experience like this before? She said the weak positive could indicate that it is just finding residual virus from my first infection. I don't feel nearly as miserable as I did the first time I had it, in fact I feel fine other than a mild sore throat which feels like a mild case of strep than mono. When I had mono two years ago, it hurt so bad that I couldn't drink water, and ended up in the hospital because I was so dehydrated, was spitting up blood, and was wheezing because my tonsils we're so huge. I have heard that it is so incredibly rare to be infected a second time, and that most people who do have auto immune disorders like HIV or Lupus. Still waiting on my results so maybe I am over reacting. Can anyone relate?

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Hi @mattkl817 you may have noticed I moved your post to this existing discussion so that your posts would be in one place. Simply click VIEW & REPLY in your email notification to get to your post.

I would like to introduce you to fellow Connect members @barbus22 as she may be able to offer you support.

Back to you @mattkl817 is your doctor treating you with anything at this time?

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I saw my doctor a few days ago for recurring mono symptoms. I had mono two years ago and haven’t had any problems since. I’m an otherwise healthy, active 22 y/o. My monospot test three days ago came back as a “weak positive” and my full EBV antibody panel Showed VGA igM as negative, VCA igG as positive, and EBNA igG as positive as well which suggests a previous infection. I was experiencing fever, chills, body pain, sore throat, and vomiting on and off for three days, now I am just experiencing the horrible fatigue. I can feel a cramping feeling where my spleen should be but my doctor tells me I don’t have mono.
Anyone have similar experiences?

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Those sound very similar to the symptoms I had leading up to my diagnosis of ME/CFS aka Chronic Fatigue Syndrome. I had mono at 11 and by 13 I was often complaining to my mom that I felt like I had mono again. At 15 I developed the symptoms you describe but figured it was virus. But after 6 months of it not getting better, my pediatrician sent me to a specialist who diagnosed. Good luck, there are no specific tests to diagnosis, just a lot to rule out other possible problems.

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