10 year old daughter with unusual EBV panel

[worriedmom481]

I'm new to this board and still trying to figure out what is wrong with my 11 year old.    She had the flu in March of 2009 and then was very sick in April 2009.   At the time she was diagnosed with adnoevirus.   It started with pink eye symptoms and quickly progressed to a fever of 106.   They tested her for the flu and she was negative.   She never really recovered.   She is a year round competitive swimmer and swam about 1 1/2 hours six times a week.   She kept telling me something was wrong and she was sleeping about 13 hours a day.  She lost most of the pigmintation in her face, has dark circles under her eyes and major brain fog.   they did a mono spot on her but it came up negative.   Finally at the end of July a friend told me to get her titers tested.   I did and her igm was 1.20 her igg was neg and her ebna was 1.50.   The dr said she had had mono and that the igg test being neg must have been a mistake.   She had to scratch out of the gulf swimming championships and camp but she went to the state meet and swam a light schedule in August (she was devasted as it was and her dr didn't want to add depression to the list so he said it was OK that she went.   She still was not 100%.    We started school with a note that kept her out of PE and let her sleep in a couple days a week.    She improved and was feeling 100% and was able to handle a moderate swim schedule.    She went back to PE where they started doing track and running for a couple miles.   This caused her to relapse again.   I took her to the Dr. and we pulled blood again.   This time her igm was 1.27, her igg was neg, and her ebna was 1.40.   Her fatigue, brain fog, muscle soreness etc is back and she can't handle a regular swim workout.   I don't know what to do.   I have been told that these EBV numbers are not high at all and shouldn't make her feel this sick.   Her Dr. just says to rest but it has been six months.   I know something is wrong.
I have hashimotos and chronic EBV and I'm worried that she his chronic EBV too.   she had a comprehensive metaboic panel  including her thyroid and everything else is fine.  
Any info would be much appreciated.  Thanks!

[PlateletGal]

I've read (two different sources) that one out every ten people who have mono are ending up with Chronic Fatigue Immune Dysfunction Syndrome. Of couse only a  physician can diagnose your daughter, but I can tell you that I believe it is very important now (rather than later) that your daughter sees a physician who frequently diagnoses and treats CFS. Please consider googling, "Co Cure's Good Doctor List" and finding such a physician in your area.  And please consider checking out MedHelp's fibromyalgia / Chronic Fatigue Syndrome forum and our health pages.

[worriedmom481]

Thanks, I took her to her Dr. this morning and we are going to find a pediatric dr. that specializes in fatigue.    Is it true that she cannot have EBV if she has had two negative ebv igg tests?

[lazyace]

I'm in the midst of my own EBV mystery, as I have IgM that is positive at 1.20, with IgG off the scale.  In addition, my HHV-6 just came back at 1:640 (significantly high).  If it were my kid, I would find an infectious disease doctor that you like.  I may be headed down the CFS path, but it is a very controversial diagnosis at this point.  Before I accepted that as my diagnosis, I would seek satisfaction that every other possible cause has been ruled out.  One other thing you could try is using the justanswer.com site to pose a question to a doc.  You have to pay for it, but I have found it to be quite helpful with my own situation.  I don't exactly know how to specify the doc, but there is an ID doc from Chicago called TheGermDoc, that is very good.  If you can track him down, it would be worth it.  Good luck!

[PlateletGal]

"my HHV-6 just came back at 1:640"

Are you sure that was your HHV-6 result and not your ANA titer result ?

[PlateletGal]

Here is a link to a health page I wrote that lists many possible conditions that you might want to consider ruling out before accepting a CFS diagnosis.


http://www.medhelp.org/health_pages/Fibromyalgia/Newly-Diagnosed/show/754?cid=39


Symptoms of CFIDS / M.E. :

http://www.medhelp.org/health_pages/Fibromyalgia/Symptoms-of-Fibromyalgia-and-CFIDS-ME/show/524?cid=39

[lazyace]

Yeah, it was my HHV-6 why?  I had an infectious disease doc tell me although it is high, it isn't that significant in the grand scheme of things.  I have read that it can sometimes increase with an EBV infection.  I also just got my EBV PCR results back which were negative, which I guess means the virus is not actively replicating.

[PlateletGal]

The result you gave me (1:640) is a common result (positive) for an autoimmune test (ANA).

High HHV-6 titers are often found in CFS patients. I hope you will check out MedHelp's fibro/CFS forum and read the Health Pages. Here is a link:

http://www.medhelp.org/health_pages/list?cid=39

Most patients with CFS usually have 2 or 3 of the following abnormalities:

Elevated IgM/IgG coxsackievirus B titer
Elevated IgM/IgG HHV-6 titer
Elevated IgM/IgG C pneumoniae titer
Decreased NK cells, either the percentage or their activity

http://emedicine.medscape.com/article/235980-diagnosis