Chronic Fatigue Syndrome Community
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Ebv or Cfs?

Hi I'm eleven months down the line after reactivated ebv. It has been a nightmare, was previously healthy 39 yr old female but I think stress burnt me out and a bout of very bad bronchitis. My igm antibodies to ebv are positive yet the viral load is undetectable. I feel as bad as I did eleven months ago. I have problems sleeping, brain fog, dizziness, ringing in my ears, huge fatigue. Feel awful can hardly function. The flu like feeling seems to have gone which I had in the beginning, along with lower grade temperature, swollen glands, fatigue, massive headaches, brain fog, insomnia, night sweats. I'm not sure if my body still is fighting active ebv Epstein Barr or if the virus has triggered Cfs. My options are to boost my immune system or on the other hand if it is now Cfs that means my immune system is inflamed. I'm so scared I'll never recover from this, haven't been able to work all year and it's just ongoing.
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Avatar universal
Hi, I went to a hematologist, and he tested me for EBV.  He implied i had CAEBV and recommended I go see an infectious disease specialist.  I say implied because there was a bit of a language barrier, and I can't get in to see him again for 3 months.  Anyway, these were my results: EBV CAPSID IGG INDEX -mine was greater than>8.0 (range 0.0 - 0.8), EBV CAPSID IGM-mine was greater than >1.4 (range .0 - .8),EBV NUCLEAR AB QUAL-mine was greater than 8 >8 (range 0.0 -0.8), and this last one, I believe, is negative AB EPSTEIN BARR EARLY AG <.20 (range 0.0-0.8).  If anyone knows if this means I have chronic active EBV, please let me know...I can't find out until my appointment with an infectious disease doctor which is weeks away...
Avatar universal
Lisa I feel your pain.  Nightmare is the right word.  I was once a healthy, fit, active 43 year old male.  Long story short, I got sick all of 2016 with mild bugs but felt tired.  In Aug 2016 my quadriceps both became very painful and the muscle fatigue was unbelievable.  One week I could play b-ball and tennis, the next I couldn't make it to the mailbox.  Plus I have muscle twitching all over.  All tests were negative (MRI, EMG, blood, etc.) EXCEPT my EBV titers were all high (all 3).  I have not been normal since.  Now my wife and I have triplets on the way and I am mortified as to whether I can do this.  I have seen an IM, neuro and rheumatologist but still no answers.  Some days are better than others but it is little solace when walking is difficult.  A recent 2 week bug has resulted in my legs getting as bad as ever (after months of slow improvement).  I suspect a CFS diagnosis is forthcoming.  I will ask my IM about chronic EBV next week as it's the only thing I've tested + for.  Anyway, you're not alone in this misery.  If you've learned anything since your Nov 2016 post, please share.  Thanks.
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