Epstein Barr Virus (EBV) Community
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Avatar universal

3 years after EBV

      So to give a little background, back in January 2010 I was diagnosed with EBV and Mono, at 27years old. This stuck around for a few months with terrible fatigue and body ache. In about March it subsided but I think stress brought it back possibly and in late April of 2010 I felt the same way again with bad fatigue, but this time I was having some numbness in my hands at night and also lower back pain and achy persistent headache. Another weird symptom was my elbows were soar and making a cracking sound when I lifted heavier stuff, I was trying to hit the gym again and man were they soar.
       So I went for numerous blood tests, RA, Thyroid, Lymes, Carpal Tunnel test, Head MRI, Elbow MRI, kidney ultra sound, Xray on Elbows, Physical therapy, you name it and nothing came out of it....

       I gave up that July after I finished Physical Therapy for the weird Elbow pain, and slowly things went away to a point and I slowly felt less fatigued and the elbow pain stopped over a few months, headaches subsided and things were half way decent feeling.
        About a year later from when it all started with EBV in winter of 2011 I got the back pain returning and some numbness and fatigue, just rode it out and dealt with it and it went away some again by Spring. I think my Fiance triggered something with her getting sick and I got a little sick....
        This year 2012 Same sort of occurrence with winter coming and something triggering things and then I've been battling the symptoms all Spring until now yet. Achy body mainly lower back, feet and hands, bad fatigue, brain fog, lower back muscle pain, terrible sleep, numbness in hands here and there during night or when awake, but more so at night. Been rough this time around and no idea what's going on. Decided to see doctor in Spring and my new GP did a few blood tests and checked vitamin levels and then harked on me about some high cholesterol, needless to say I got irritated because I wasn't there to deal with Cholesterol and it seemed like that was his concern now being that he sent me for some reblood tests a month later and gave me a diet plan..... idiot, so thank god my Chiropractor I started seeing really became concerned of my symptoms and ran the gamut of blood tests yet again Lymes, RA, EBV, etc etc.... His biggest concern was that the Different EBV tests came back positive all but the IGM test, so EBV is hanging around for sure.

        My biggest concern is the muscle aching, fatigue, and numbness I've been dealing with. I know I already saw a Neurologist 3 years ago after Mono and they did a head MRI, but I'm not sure what exactly for... Have other Chronic Fatigue/ Fibromyalgia patients dealt with the numbness?  I'm going to see a Neurologist again and get looked at for MS, it really scares me something like that may have cropped up so soon after Mono, I'm not sure if it could, but either way I guess it's good to get tested and if it doesn't show up then I focus on going to see a Fibro/ Chronic Fatigue literate doctor.

          I'm just looking to see if my story flows with some other people here and if even though Numbness is sometimes one of my symptoms, if that has cropped up for others dealing with CFS.

Thank you all.
6 Responses
Avatar universal
Hi I read your post, you have same symptoms but less then me, plz tell me how you doing, and if you have any update and if you can read my post and can give me some advice too so I will appreciate.
Avatar universal
Hi.  I just wanted to mention that once you have had EBV or been exposed to it, it will always show in the bloodwork.  It means that you have antibodies, but doesn't necessarily mean you have an active infection.  95% of the nation has been exposed to EBV.  In fact, many people can have this virus and not know it.  I hope this will provide you some relief to know your bloodwork doesn't necessarily mean you have an active EBV infection.  Here's a good site from the government on it:

Avatar universal
I contracted EBV 1 year ago, was very ill, missed 2.5 months of work. Now a year later I am very fatigued again, having trouble walking when tired, numb areas yes around elbow, glands swollen again, muscle twitches. I am currently seeing a neurologist to check for ALS or MS. Your story reads all to true to me! I am 42, and until the mono very active, kayaking camping bike riding, friends called me vivacious and couldn't keep up.
329994 tn?1301666848
first, let me say that I am sorry you are going through all of this. I know as I have been too for the last 6 to almost 7 years. On the numbness, I went to a neurologist and was also tested for MS, but thankfully, came back negative. However, I was also tested for peripheral neuropathy, which was positive. So if you go to the neurologist, please ask to be tested for that. I forget what the test is called, but it shouldn't be a problem. EBV can cause peripheral neuropathy. Good luck! It's a hard battle.  
Avatar universal

How are you now? Christmas 2011 I was admitted to hospital with temperature, severe pain and after tests was informed I had EPV and my splein had enlarged 50% more than normal.

It is now one year later and I am getting similar symptoms, have had a cough, headache, fever, swollen glands and throat for about a month now and have just had another load of tests done to check for Glandular Fever...

I'm wondering if it is a usual occurrance as I have read a few articles with the virus returning every year... especially winter times it seems :(
Avatar universal
I have CAEBV. All of your symptoms match with my own. The back, feet, and hand pain are very familiar, and I also struggle with brain fog, fatigue,  muscle spasms and have had some hair thinning issues among a few others.    I am also lyme positive but have been repeatedly treated for it; while it seems to have relented the EBV persists going on 3 years now (confirmed by blood tests September 2018).  Dr. recently prescribed valacyclovir, and things are improving slowly. Beware, if you are with someone, you are passing the virus to them, and they are likely passing it back to you. Two others in my house keep getting sick because my levels are so chronically high.  I suggest monolaurin, l-lysine and dietary changes, they have helped me.  You are in it for a while; find a doctor that understands the disease and avoid GPs.
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