Well that makes sense active EBV

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new2cfs
New Member


Date Joined Apr 2006
Total Posts : 3
   Posted 4/7/2006 7:32 PM (GMT -7)   
Hey new here, how are you all.
Well for the past 2 years something has been wrong but blood work kept comming back normal.  I can almost pinpoint a time 2 years ago when my life became immensly stressful (external factors), then BAM.  Things have been different ever since.  Ive been pulling myself up by the bootstraps for what seems like way to long.  My blood work for EBV(epstein barr) came back with IgG >170 so its an active infection.  Im under 30 and have pretty bad bags under my eyes for my age, everyone ALWAYS says i look extreamly tired.  Before I found out about EBV it was really getting annoying to hear that over and over.  Anyone have experience with active EBV.  Im to tired to really worry about anything anymore, (social life is dying, career is starting to become shaky, becoming depressed and hopeless for the future)  SOS..... 

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 4/8/2006 6:08 AM (GMT -7)   
Hi new2cfs. I'm sorry that you have felt so rotton for so long. Did your doctor have any ideas of anything they could do for you medication wise. I was diagnosed with CFS in 1991, but after a few years I went into remission. I was still more tired than the average person and once in a while my body would crash, but I was pretty much able to lead a normal life. Now unfortunately I am dealing with lupus and I'm sure my CFS is back too because I have almost constant swollen glands.

Unfortunately I don't know much about ways to treat cfs, and I don't think there is a lot of treatment for it. I know that some people have fairly good luck with anti-depressants and some people have tried provigil for fatigue.

My 8 yr old son has EBV and has had chronic problems due to it for over a year - I guess it runs in the family.

This forum is pretty slow for some reason - not a lot of activity (maybe everyone is too tired to post LOL). I help moderate the lupus forum, but have also decided to spend some time in this forum too. I'm usually here everyday and so is another member.

Diagnosis:  Suspected Lupus 2004; Raynauds 2006; CFS 1991; Mono 1985

Meds:  Plaquenil 400mg; tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

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new2cfs
New Member


Date Joined Apr 2006
Total Posts : 3
   Posted 4/8/2006 10:26 AM (GMT -7)   
Hey there, thanks for the reply.  Sorry to hear about your lupus and CFS.  Hope you have more good days than bad days.  And hope your son is doing well.  As far as epstein barr its hard to get any definative answers.  I think 95% of people have antibodies, and i think its one of the most common human viruses(?) but when your titers of IgG get high it means you immune system is having problems keeping it in check and not only do you have antibodies, but the antibodies you have suggest a current active infection.  But I finally took a medical leave from work which I should have done months or years ago.  I was beginning to worry that i wouldent be able to keep functioning on the "treadmill" then finally my blood work came back showing at least something was wrong.   

hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 4/8/2006 11:48 AM (GMT -7)   
My brother had chronic EBV that was active about 15 years ago and was really sick with it for quite a while and hardly able to function. Fortunately he finally got better but he gets tired easily still and if he doesn't get enough rest he ends up getting sick. There seem to be a lot of immune related problems that run in my family.

I have thought about taking a leave of absence from work to see if it helps me feel any better or to be able to function better overall. I only work part time and fortunately my boss let me cut back my hours from 24 hrs a week to 18-20 hrs a week. Even that is getting hard for me.

I know what you mean about your social life. Fortunately I am married to a very supportive husband. I met him while I still had CFS and was sick and tired a lot, but I wasn't nearly as sick as I am now. Even being married, any debilitating illness can be really lonely becasue a lot of people don't understand what it is like to have such profound fatigue. It goes way beyond feeling tired. I get worried that the friends I still do have will get tired of me being so tired and not able to do much. At times I even worry about my husband because I know this takes a toll on him. We used to be really active together. We were both runners and played in an adult recreational soccer league together. Now there are days I can barely get out of bed and walk.

This is why HealingWell has been a lifesaver for me. People here really understand what it is like to be chronically ill.

I hope your leave of absence helps.

Take care

Diagnosis:  Suspected Lupus 2004; Raynauds 2006; CFS 1991; Mono 1985

Meds:  Plaquenil 400mg; tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/


new2cfs
New Member


Date Joined Apr 2006
Total Posts : 3
   Posted 4/8/2006 1:36 PM (GMT -7)   
thank you very much, glad to hear that you have support.  My family (parents and brother) have been really supportive so that has been nice.  Very nice that you can maintain a work schedule that keeps you active but doesnt totally wipe you out.  That is probably the ideal setup with CFS.  My first few years out of college were GREAT... alot of work alot of play.  Very social, lots of late nights and early mornings.  I would be going to sleep after everyone else had been asleep for a few hours, and waking up before them...3, 4 hours per night.  then working 13,14,18 sometimes more hours, then finishing it off with a few drinks in the bar.  Then a few years later something rapidly changed over the course of a few weeks and things drastically changed permenantly.  I started getting respitory infections like crazy, and constant fatigue.  Became withdrawn, anti social.  Had alot of blood work done, and EBV is the only thing that looks strange. 
 
If you feel like a leave of absence will help you dont hesitate to take it.  I cant explain to you how run down i had to get before i would finally take it. 

Pixel
New Member


Date Joined Apr 2006
Total Posts : 1
   Posted 4/26/2006 8:42 PM (GMT -7)   
Interesting that my path is similar to yours, though I'm assuming common. I too had symptoms and no diagnosis for 2 years, then finally ended up with an enlarged spleen after giving birth and then positive EBV tests. Though I am better than a year ago, I continue to suffer several days a week with fatigue and pain. My hematologist was annoying and not helpful at all.

Are there specialists for CAEBV or CFS? My husband's aunt wants me to go to a doctor that does IV vitamin supliments. Has that worked for anyone?

Thanks for your input.
Pixel
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