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Hi everyone. I am grateful to have found this site as I have been reading the comments for months. The stories and support have been reassuring.
The first time I was diagnosed with mono I was 19 and in college. I presented with an extremely sore throat which later turned into a swollen spleen, drenching night sweats, swollen lymph nodes and extreme fatigue. I remember it was hard to even walk to the bathroom. I remember the whole thing lasting maybe a month or two and then life returned as normal.
Fast forward 16 years and I have once again been diagnosed with active EBV. It took many months and many doctors to get a diagnose. Finally a Rheumatologist though to check for it. However, this time has been very anxiety inducing. I have experienced a wide range of symptoms that have been lingering for eight months. I notice things are usually worse when I am stressed or near my menstrual cycle. I have experienced the following symptoms:
-muscle stiffness, weakness, twitching
-hot flashes/facial flushes
-anxiety-almost feeling like I was on the verge of a panic attack all the time
-sensitivity to heat
-ringing in ears
-itchy rash on arms
-brain fog/dizziness/off balance feeling
-cold right hand and foot
Some of these symptoms have subsided while some are less intense but still lingering. I have good days where I feel about 80-85% and then I have some days where I only feel 50-55%. I constantly feel afraid that there is something more sinister going on because I cannot believe how long this has been lingering even though it hasn't left me as incapacitated as it did the first time when I was 19. I am not sure if it has presented differently because I am older and/or have some immunity now. Since finding out I have EBV again I have done a lot of research and have been surprised to learn how common it is for people to get this virus more than once or have the dormant virus reactivate and cause problems later on. There is a lot of good/recent information online from Functional medicine doctors about EBV. I am currently taking B vitamins and a probiotic. The B vitamins have definitely helped with the fatigue and the probiotics seemed to have helped with the tummy troubles.
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