Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a debilitating condition that makes day-to-day life difficult for those who have it. Join the group and discuss treatment, symptoms, and lifestyle changes that have helped.

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New Test Results

I just got some of my test results back from my specialist and also had the follow-up appointment.


I had extensive EBV testing, with the results coming back extremely high.  Anything over 22 was considered "high" and my number was 476!  The specialist said it was extremely high, not normal for just an exposure to mono.  All of my symptoms started with a horrible case of mono over 12 years ago.


My vasopression was also not even detectable, which influences the fluid levels in the body.  This could be the cause of my POTS.  The EBV can actually influence the vasopression.  


I need to retest for a specific Natural Killer Cells test.  


I got some new information, which will hopefully lead to new treatment... I'll try to keep you posted!

Replies

Nina1959
Nina1959

Thanks for the update. When one of us gets info like this and shares it helps us all.
aussiedi
aussiedi

Hi there BB. I'm following your test results and keeping a keen eye on you. My CFS started with severe Glandular Fever also. I always have the EBV showing in my blood work too but haven't been to see any specialists in that area. So I will be very interested to see what else emerges with your other testing and suggested treatments. I have been given anti virals before but have not taken them for long periods. I have a good feeling that we're on the verge of a breakthrough. So much research happening now ,and the recognition of this illness has finally become a reality, after being lost in the dark for so long. I feel a little excited. You know how it is...if you can't dance when you're excited, you just smile and wriggle your toes and wave your hands. Yeah baby !!
LouiseS
LouiseS

One reason your EBV antibodies are so high is that you could be coinfected with a chronic enterovirus infection that is exhausting your immune system so much it can't get the EBV under control. Check out the list of symptoms at the Enterovirus Foundation. You should also get blood tests for antibodies to the Coxsackie B group and the closely related Echoviruses.
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