EBV Blood Tests

Kristie, I have both lupus and CFS and unfortunately both illnesses can be very difficult to diagnose. Lupus is diagnosed on a combination of labs and symptoms while CFS seems mainly to be diagnosed by process of elimination. With your EBV high, does the doctor think you have mono right now? If the labs remain high over time, there is something I have heard of called chronic mono/ebv. I met a teenager who had this and said his doctor was just finding out info about chronic ebv. My understanding is that it leaves you continuously fatigued. I'm not sure about treatment. It's definitley worth talking to your doctor about . I'm thinking it would be helpful to have the labs run again after a while and see if the numbers change at all. I do know how frustrating diagnosis limbo is - I've been there several times. It took three years for my lupus to get diagnosed and sadly it takes many others even longer to get diagnosed. I wish someone had more answers for you, but the ebv is worth looking into. A lot of people who have cfs have had ebv. Take care and let us know if you have any other questions. Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985 Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg ; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops   Clickable:   LUPUS INFORMATION & LUPUS RESOURCES . Please allow HealingWell to continue helping others by donating: https://www.healingwell.com/donate/   Co-Moderator: Lupus and CFS Forums

My symptoms are all over the place.  Fatigue, various neuro symptoms, sternum pain, and muscle aches around the chest and shoulders, photosensitivity, hair loss, extreme muscle and joint pain without redness and swelling and major brain fog that does come and go.  I came down with a horrible case of bronchitis in Aug. and have been downhill since then.  After several round of antibiotics for sinus issues I'm still wiped out.  My rheumie did not mention EBV.  I was told all of my test results were normal.  The other day I called and asked for a copy of the results and found this myself.  I was shocked with a number in the 2200's she should have said something!!!  For me, these problems have been off and on for years.  Its just that after the bronchitis I cannot rebound.  They usually come and linger for a cuple of months and disappear.  But not this time.

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Kristie