Connect
EBV-Reactivation/Chronic? What does normal look like anymore?
I turn 48 next Wednesday and I am not living my best life. I am someone that tested positive for mono back in middle school, and have tested positive 8 times since then. Each time I became ill and tested positive over the years, the symptoms have worsened and the recovery has taken longer each time.
I just finished my 24th year of teaching and it was more stressful than not. I managed the best that I could, but stress always leads to illness. By Thanksgiving break, I was sick and unable to return to work. I have IBS and when I get even a cold, it makes itself known. I ended up in the ER twice before New Year's Eve due to dehydration and other deficiencies. It's how I found out I had "mono" again. My GI doctor was able to help with the IBS side of things and my husband started doing research and looking to forums because he is tired of seeing me this way and I'm not getting help or the answers I need.
My primary doctor has referred me to specialists. I've seen a rheumatologist since Autoimmune diseases run on both sides of my family, but I haven't tested positive for any. The infectious disease doctor that I saw doesn't treat or give guidance to patients with Mono or EBV (besides fluids and rest). I asked my primary doctor to then run an EBV panel based on forum findings and the results indicate a Reactivated state. My doctor's office is unsure what to do with me.
I started my school year at 140 pounds and I now weigh 110. I still have swollen glands, fatigue, random fevers, body aches (since Thanksgiving). There's times when I seem to bounce back a bit and then I slide back down. I eat as healthy as possible and I'm dairy/gluten free. I have Gastroparesis so that further limits what I can eat. I prioritize rest and try to at least get in a daily walk. I'm taking supplements and even paid for a pricy iv infusion recently. It's summer and I should be traveling with my husband (as in years past), but my body has had it and so have I. I just don't know what to do at this point. I'm ready to live my life again, but I don't have any guidance on how to do so. Any advice is much appreciated.
Like
Helpful
HugInterested in more discussions like this? Go to the Infectious Diseases Support Group.
Connect
I am 67 and have had three major reactivations of EBV. I live at 4000 ft and can’t walk outside because hills are too difficult. I have been disabled for 30 years. A diet like yours helped some when I was younger and i still keep it for the most part today. I have low thyroid from it and my muscles just have. No energy or strength. I don’t feel i can travel much either. I have to take a wheelchair through the airports. I recently had a sleep study done and they found I don’t get much REM sleep or the deep sleep because i have been on Benzos for 25 years because I can’t fall asleep or stay asleep without them. I am trying to use some supplements to help me fall asleep but I still don’t sleep well and I don’t know how long it will take my brain to detox from it. Have you had sleep issues? I have the opposite problem with weight. I always want to eat and my leptin is out of range but I am not diabetic. I don’t eat sugar. I would like to lose 10 lbs. I am so weak now because of loss of strength and energy and at my age I don’t know if i will ever recover. I take monolauren regularly and rarely ever catch any colds or flu. I take tons of health supplements but they don’t cure it. I was told to try creatine for muscle strength and recovery. I’ll try that next. I wish some research would be done by the medical community but specialist doctors don’t even want to see me anymore and there are no collaborative programs that will take me and do more tests. It is really depressing because i don’t like being still. I used to be an athlete. Socializing is even difficult and I worry that I have other brain issues now too.