Is this really all EBV?

[overflow]

Hello all,
I am an otherwise healthy and active 38 year old female. After experiencing 2 months of feeling "ill" and slowly progressive fatigue/weakness, I was finally diagnosed as likely having mono due to high EBV VCA IgG titers >600 (although early antigen titers were low). My physician states that this is not certain for acute disease, but based on symptoms, most likely.
I had many blood tests, brain MRI, cardiac echo; this has been the only positive result. I have been off work for a month. I know EBV is associated with weakness and fatigue, but I would really like to know from others if their symptoms have truly been debilitating. I barely can walk, I have to hold on to the rail when climbing steps, and I get tired very easily (just starting to slowly improve this week). Could this truly all be EBV? Anyone heard of mild cases of Guillain Barre associated with mono? My job has been supportive, but they keep asking when I think I can return. I have one "good day", followed by 1-2 bad days. It's so unpredictable. I am hesitant to return to work because I move around a lot on my job, on my feet, and mentally demanding. I have basically been housebound for one month.

[pitterpat69]

I do still relapse from time to time.  I can feel good for days at at time, sometimes weeks, and sometimes even months!  Unfortunatley, I still relapse into periods of muscle pain and fatigue.  Currently, I am coming out of another relapse that started about 3 weeks ago.  My relapses no longer take me out of work (thank goodness) and they don't last as long.  I had moderate fatigue and muscle pain for the first week and have gotten a little better every day since.  I have accepted the fact that I may have CFS or Fibro and if that is the case, this may be my life forever.  I still hold out hope for a full recovery, but if I don't get that recovery, I will still be ok.  I can still work and live my life----I just have to live differently than I did before.  

[melmel67]

Hello. I just read your posts and I was just curious as to how you were feeling. It was very positive and gave me hope as to that we can feel better after a while with this stubborn EBV. I have been feeling very discouraged lately and need to hear from others that are going through this horrible thing and are feeling better. Pls keep me up to date as how you are feeling. Take care & god bless!

[9DodgeFan]

I wish PlateletGal was still around, since she had been diagnosed with CFS (also FM, I believe) and had a wealth of information, but I haven't seen her on here in quite some time.  It might help you to look up some of her previous posts, though.  As far as an EBV/CFS link, I think there is a connection based on what I've seen/heard, but conclusive proof hasn't appeared yet.

[overflow]

Thanks for the encouragement. I just feel like I am not getting better despite resting, can it really take this long? I am tempted to ask my doctor to send me to Mayo for a second opinion, but I hate the idea of running up medical expenses and time just to be told that I need to rest. Also, has anyone been officially diagnosed with chronic fatigue syndrome? I know the medical literature says there is no link to EBV, but it's more than a coincidence that most people seem to suffer from these chronic symptoms AFTER being diagnosed with EBV!

[9DodgeFan]

Sorry to hear about the relapse!  I've been there, and I know it's no fun!  Your relapse really could have been from either going back to work, or from the prednisone.  It's certainly possible you started working again too soon, although I think you made the right decision in trying it.  Given that you had been doing at least somewhat better, I highly doubt that the prednisone itself caused the relapse (please keep in mind I'm not a doctor though).  I think what's more likely is that it was a combination of the 2 factors:  your body/immune system was getting worn down by work, and then the immunosuppressant could have been enough to give EBV the upper hand again.  Honestly, it sounds like you're doing everything correctly.  I would say once you've started feeling better again for a little while, to try the shorter work days again.  If you start feeling worn down, then take a few off again.  I know it's not easy or convenient, but sometimes it's what needs to be done.  Hope you start improving again soon.  Let us know how things are going!

[overflow]

Does anyone know much about relapse of symptoms? After being off work for 2 months, I felt I was able to go back part-time on May 9th. I have been working about 4 hours a day for the past 3 weeks. I felt well in general, but would come home and take 2-3 hour naps. By the beginning of week 3, I was totally exhausted, brain fog/dizziness, felt myalgias, tacycardia return; basically like I went backwards in my recovery 1.5 months!! This has been a tough week, and I am starting to feel discouraged. I was feeling so well. The only thing I can think of is I had to take 7 days of prednisone for my asthma a week ago, which I was very reluctant to do so since it causes immunosuppression. My doctor is not sure if that was the cause of the setback, or if it was just a matter of time, and feels I may have returned to work too soon.
Any thoughts?  

[9DodgeFan]

I would suggest working half-days or something like that (maybe that's what you meant by part-time...).  I did that after being fully off of work for a couple weeks.  I slowly increased my hours worked each week, and that seemed to be a great way to keep track of progress, too.  Hope it goes well for you!

[pitterpat69]

I returned to work after 3 months, bur started off working part-time.  Just pace yourself and don't try too much too soon.  I still get really tired so I am still going to bed before 10 every night!

[overflow]

Wow! As much as I hate to hear others going through this, it is a sigh of relief for me to know that I am not alone. I can totally relate to your story; the muscle weakness and how it varies. MS runs in my family, so of course, that has been a concern, but the doctors keep saying "this is not MS".  I don't know how much to push myself; I have been off work for 5 weeks now, the weakness it much better, but waxes and wanes. FMLA will give me a few more weeks off. Because some days are better than others and because it sounds like this "roller coaster" may continue for a while, I'm wondering if I should just try going back to work? They are willing to let me work part time for a while.

[pitterpat69]

My initial symptoms were very similar to yours.  I was very weak and had a lot of difficulty walking.  I was house-bound for almost 3 months.  Sometimes my legs were so weak I could only stand in the shower for ten minutes at a time.  After the first 3 months, I improved slowly.  I am now 18 months from my initial illness and I still have some muscle weakness problems.  I cannot stand for long periods of time without aching muscles, but I am much better.  Some days my muscles feel 100% strong, but other days I have to take breaks and sit a lot.  Last Saturday I worked the snack bar at my son's game and was on my feet for 3 hours.  My legs were very weak and sore the next day, but I already feel better.  Please know that EBV can cause your symptoms and sometimes much more.  Like you, I went through extensive testing - - MRI and CT of brain and spine, 3 blood tests for Lupus, Myasthenia Gravis, and other neuro and auto-immune diseases, a nerve conduction study and many random blood tests like HIV and Syphillis.  The only positive result I got was my EBV.  My test showed a brand new infection.   Rest and proper nutrition is the only treatment.  Some people get better within a few weeks and others can take years.  

[overflow]

Thanks so much. I think I just needed to hear that I'm not alone, and this forum has been very informative. My physician didn't have a lot of first-hand experience with this, specifically with my symptoms, so the more I hear that my symptoms are "normal" for this illness, the more reassured I am that nothing else is wrong.

[9DodgeFan]

Based on what you've said, including what your doctor told you, you did have mono or an EBV re-activation; your high titer results show that to be true.  However, since the early titers were low, it's not a "recent" (meaning last couple weeks) infection.  Believe it or not, EBV can be very debilitating.  It sounds like you're doing a good job of trying to help yourself recover, so it's difficult to say what else you can do; really, rest is the best medicine there is.  When you do start feeling better, you'll want to take things very slowly; otherwise, you can have a relapse.  Try not to get discouraged!  For me it took over a year before I felt like I was finally getting back to "normal".  So I'm not trying to scare you; I just wanted to let you know you're not alone in dealing with the EBV monster!