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I have EBV and am looking for some advice

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Chronic Fatigue Syndrome
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Posted 3/1/2011 6:02 PM (GMT 0)
I am 24 and I have been married for a little over a year and a half. Last summer, in August, I started to feel really awful but I tried to get over it on my own and just continued to work ect... until the beginning of September when I decided I should actually go in and see someone. Since I was a new patient I could only get in to see a Physicians Assistant and she told me that I had EBV,which I had never heard of at that point, and that I needed rest and to come back in three months to be retested. My symptoms did subside, although never entirely, I started to feel worse again in the middle of January, and when I went back in the first week in February to be retested the EBV levels were just as high as they were in September and I feel awful. I called my dr.'s office and insisted that I get in to see a real doc. He was great and seemed to be very helpful. He advised me to take more significant time off and rest, but he was confident that I'll be able to recover still; I had another apt. with him yesterday. I've taken the last two weeks off of work and literally done nothing but lay in bed and read, I've been taking lots of vit.C and D among other supplements, and eating a diet of lean protein and lots of fruits and veggies. Yesterday I went back to work part time, and after three hrs. of teaching (I am an elementary music teacher) I felt like I had been hit by a train! I don't know if I am just not ready to go back to work and I need more time off, or if I need to see a different dr. I don't know if I am being too optimistic to think that I am going to eventually be able to return to the schedule that i once had. I feel useless and guilty because my husband married this fun energetic young woman who now just sits in bed all day and cries when he comes home to give me a hug. I feel like my purpose in life is being sucked away from me, and it is awful! I have always been very healthy and had a really strong immune system, which is why I am still hopeful that I have a chance of getting back to where I once was. But as the days and weeks go by and I feel no significant change that hope dwindles... I have a wonderful life and wonderful people that love and care for me, this sickness has reminded me more and more of that everyday!!! But I want so badly to be able to have my old life back! I have my whole adult life and career ahead of me...and its scaring me to see it falling through my fingers as I sit in bed. Thought...comments...advice...

Thank you!
Posted 3/2/2011 5:21 AM (GMT 0)
I'm so sorry you are going through this. I wish I had more to say to you other than that I can strongly relate to your situation. I was married almost 2 years ago to a wonderful man too and was in fairly good health other than a little depression but that was from childhood trama mostly. I was always excited for life and driven. Just after our wedding I got pregnant and then at about 8mos in I got VERY sick with flu like symptoms for almost 3 weeks to a month. I went to the dr's, the ob, the hospital and had no clue what was going on. I have had a fever now ever since and have been so sore and tired and sick feeling. I have 3 kids, now a 1 yr old, and finally got into a specialist because I said i was sick of being sick. I started seeing an internal disease specialist through my hospital after going to 3 PCP's because they kept blowing me off or saying it was in my head. Now it is believed I have CFS which is fairly similar to EBV. I feel your pain. I often feel like idk what to do and am afraid for my marriage because even thought they love us, it has to be hard to marry a healty person and then have them get sick like this. Idk what else to say, other than maybe it can give you hope to know... YOU are not alone. I hope you start to feel better and I pray that your hubby will understand. From what I know I think EBS goes in phases so hopefully you may feel better in the future. Just keep researching girl. We just gotta hope for the best and hang in there.
Posted 3/2/2011 5:40 AM (GMT 0)
Thank you for your encouragement!! My husband is incredibly loving and kind and has been more than I could ever dream for through out all this. It is just hard for me because I feel like I can't love him and be there for him like he is there for me. But there are times in our lives when we have to lean on and trust the people that we love, and this is one of those times. I know there will be a time in my life when I can in some way return the favor he is paying me now when he is going through a rough time. I think we are created for supporting and loving each other. How lucky we are that we have men in our lives who are loving us while we go through something pretty awful. I am trying to be as informed about this issue as I can and face it with prayerful hope, I know we both still have a lot of life to live. Its just a challenge to feel that life when you're sitting in bed all day. Thank you!
Posted 3/16/2011 5:19 PM (GMT 0)
I looked back over my most recent blood tests, which were taken a little over a month ago now, and it doesn't look like I was specifically tested for HCMV. I guess I should try to do that :( That is incredibly discouraging to me! I want my life back!!! But I guess I have to take it as it comes because it doesn't seem like anything I do is really going to return me to the state that I once was in. I've climbed 13,000 ft mountains before, and I had a goal of running a marathon in my lifetime! Well...now I am just venting, sorry, I know that whoever is reading this understands all too well how I feel. I have been taking it easy and trying to be very intentional about my healing and health, and it seems to have been making a difference, except today I feel really bad again, really sore and weak, and lonely! I don't know if I agree with your point about a NP or a PA being my best bet, I originally was seeing a PA, and although she was very nice she simply told me to take it easy and come back to be retested in 3-4 months. I think its her fault that I didn't get over it in the beginning. I didn't know what I was facing, and it seems like she didn't know what I was facing either, or I think she would have been more proactive about warning me. I don't know... I've looked up the information for a doctor in my area that claims to specialize in treating CFS, and I am hoping to get into see him. We'll see if that works.

Thank you for redirecting me toward CFS, I knew that it was a possibility and that it could be a potential fate that I'd have to face, I was just hoping that my Dr. would bring it up if he was concerned or suspected it. Thanks! And I apologize for my particularly negative attitude in this post, I just really hate that this! I am too young and ambitious for this! But, I guess I need to turn my ambition toward trying to fight for my own quality of life!
Posted 3/16/2011 6:21 PM (GMT 0)
I thought I would comment a little on what I've been doing as far as "treatment" if you can call it that. :) I've been taking 5grams of EsterC each day, which is a vitamin c supplement that is particularly targeted toward the immune system and white blood cells. My Dr. has also had me take a product called Juiceplus, which is are capsules that are made of whole fruits and vegetables rather than extracted vitamins. He claims that they are a much better for you because they give you the whole nutrition from the food rather than just the extracted vitamin. I'm also taking 5000mg of vitamin D with 1000 mg of calcium each day, but I was thinking about upping that to twice a day. I have felt a significant improvement over the last month, although I still have pretty bad days where I feel pretty much useless. I just made an appointment with my dr. for next Monday, so we'll see what he says we should do next. I am kind of interested in the prescription drug Valtrex, it seems like it has helped some people over time get rid of their symptoms. :) Ok, I think I need to get out for a walk.
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