Epstein Barr Virus (EBV) Community
my daughter
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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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my daughter

Hi
My daughter is 13 she had mono in dec 2008  .She really has never gotten any better. Bad headaches chronic sinus problems ., severe soar throat ,strep throat ear aches etc...She has been developing huge lumps in her neck swollen face aches and overall feeling extremely ill .She was put on soo many different antibotics all winter till now .She gets a little better ,finishes the antibiotics and in about 3-5 days is right back at the beginning again of illness. Her bloodwork shows that there is inflamation (inflammation) going on somewhere .She does not have Lupus ,they tested for a few things .Scary part is these lumps actually increase in size in 20 -30 min .and new ones pop up as well .making her neck very soar .I never new there were so many glands. Any Ideas would be helpful .She is soo tired of being ill .I am sad and feel helpless . She is also on nasonex nose spray for her sinusus.

Thank you
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I'm so sorry to hear about what you and your daughter are going through. I read your post and I basically went through the same thing that your daughter did after having mono myself, except I didn't have the huge lumps in my neck.

You may want to consider seeing a physician who frequently diagnoses and treats Chronic Fatigue Immune Dysfunction Syndrome. I'm not saying that your daughter has CFS, but that is one possibly that needs to be ruled out and from my experience, there are very few physicians who know about CFS. To find such a physician, consider googling, "Co Cure's Good Doctor List" for a list of physicians in your area.

I hope in the meantime, your daughter is resting, relaxing and drinking plenty of fluids. It is vital that she gets all of the accomodations that she needs and isn't under a lot of stress. She needs her immune system right now to fight this underlying infection that it seems she has.


About CFIDS:

As the name chronic fatigue syndrome suggests, this illness is accompanied by fatigue. However, it's not the kind of fatigue patients experience after a particularly busy day or week, after a sleepless night or after a stressful event. It's a severe, incapacitating fatigue that isn't improved by bed rest and that may be exacerbated by physical or mental activity. It's an all-encompassing fatigue that results in a dramatic decline in both activity level and stamina.

People with CFS function at a significantly lower level of activity than they were capable of prior to becoming ill. The illness results in a substantial reduction in occupational, personal, social or educational activities.

A CFS diagnosis should be considered in patients who present with six months or more of unexplained fatigue accompanied by other characteristic symptoms. These symptoms include:

cognitive dysfunction, including impaired memory or concentration
postexertional malaise lasting more than 24 hours (exhaustion and increased symptoms) following physical or mental exercise
unrefreshing sleep
joint pain (without redness or swelling)
persistent muscle pain
headaches of a new type or severity
tender cervical or axillary lymph nodes
sore throat
Other Common Symptoms

In addition to the eight primary defining symptoms of CFS, a number of other symptoms have been reported by some CFS patients. The frequency of occurrence of these symptoms varies among patients. These symptoms include:

irritable bowel, abdominal pain, nausea, diarrhea or bloating
chills and night sweats
brain fog
chest pain
shortness of breath
chronic cough
visual disturbances (blurring, sensitivity to light, eye pain or dry eyes)
allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise
difficulty maintaining upright position (orthostatic instability, irregular heartbeat, dizziness, balance problems or fainting)
psychological problems (depression, irritability, mood swings, anxiety, panic attacks)
jaw pain
weight loss or gain

http://www.cdc.gov/CFS/cfssymptomsHCP.htm
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