Rose, your daughter's case sounds really complicated and unfortunately these symptoms are present in a lot of illness which makes it really hard to diagnose. Did the Rheumatologist or the Neurologist have any ideas what was going on? THe people on the Lyme's forum have said that sometimes the tests don't come back positive, but there is one test they can do that most docs don't do - you could ask the lymes people about
If the docs can't find anything else (has anything shown up in her bloodwork besides mono?) your daugher might have CFS or fibromyalgia.
My other recommendation is to keep track of everything and if any new symptoms occur or if she gets worse, take her back in and get more bloodwork done. I would think that every so often she should have a CBC, an ESR and an ANA run. THe ESR checks for inflammation and the ANA will check for autoimmune diseases. There are a lot of people on the lupus forum who had mono at one time and felt like they were never the same and then years later developed lupus symptoms. This is what happened to me. There is research out there now that might indicate that having mono increases your risk of MS and also some autoimmune diseases. Did the neurologist rule out MS?
Don't give up and I do think that maybe every six months or so your daughter should have bloodwork done especially if she isn't feeling any better. Have any of the doctors recommended any meds or treatment at this point? Whenever you get a chance, I'd really like to know how she is doing. We are going through a similar thing with my 8 yr old son who had mono and now has some abnormal bloodwork. It's so hard to watch you child go through this. Take care and tell your daughter that I hope she gets some relief from her symptoms soon.
Diagnosis: Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985
Meds: Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain
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