EBV positive significance?

[justliveyalife]

Hi! I tested postive for epstein-barr virus (on 2 different types of tests I believe) and it was high levels (off the charts.) I also tested postive for ANA and also had elevated c-reactive proteins. I have had severe joint pain, muscle pain, fatigue, headaches, and a dry skin rash on my cheeks and nose. I am set up to go to the rhuematologist in a month.

I think they think that I have lupus. But, I'm wondering...what exactly is EBV? Why am I showing positive for it? What is it's significance in lupus (if any)?

I've never had mono...so I'm confused!

So, if anybody knows, I'd greatly appreciate some sort of help here!!
Thanks,
20 year old confused and fearing Lupus dx!

[PlateletGal]

THANK YOU for posting here. I've mentioned over and over again about how the majority of fibro & CFS patients have a low thyroid, but the standard tests will not detect this. I'm happy to see you being treated at one of Dr. Teitelbaum's centers. I have already added him to my "Physicians Who Deserve Our Attention List" ; ^ )

http://www.medhelp.org/user_journals/show/44526?personal_page_id=1064

And these are the types of physicians we need to avoid:

http://www.medhelp.org/user_journals/show/27850?personal_page_id=1064

(and read my last entry and check out the link. It will disgust you, but people need to know what is going on)

[Ree4tu]

I was diagnosed with Fibromyalgia a year ago and just recently tested positive for EBV.  My number is off the charts (over 5,000).  You see, my rheumatologist never tested me for EBV and diagnosed me with Fibro.  After a year of getting sicker, I decided to go to a Fibromyalgia and Fatigue Center to get to the bottom of things which is where I learned my EBV is reactivated.  
I have a dry skin rash all over my back, sore throat, swollen glands, low-grade fevers, muscle stiffness and pain, headaches, fatigue, periodic nausea.  I also have  hypothyroid which I recently began treatment for.  The Fibro. Fatigue Center has sensitive thyroid tests which showed I had hypothyroid when routine tests didn't. The Fibro. Center will treat my EBV once my thyroid is stabilized.

Ree4tu

[lvfrogs]

I have had a rough go for about 3 years, the last year being the worst. Long, long story but had major surgery this past summer (2 of them) and am still having ongoing problems. You asked if I had the same symptoms as you. My main symptom was overwhelming fatigue. I kept telling the doctors that it wasn't normal tiredness but they basically brushed it off. Well, now i know I was right. I just recently broke out in a rash,so I am assuming it is related. I don't have headaches though and only minor joint pain. Good luck with the rheumatologist and let me know what he says. I still have to find one!
Take care,
Colleen

[karenfay]

I tested positive for EBV.  I don't remember having mono but my father had it right before I was born and right after I was born so I may have had this since I was an infant.  I have the same symptoms as you do, minus the dry rash.  But a large percentage of people test positive for EBV and don't have these symptoms.  Research hasn't determined the connection between EBV and Lupus or CFIDS (Chronic Fatigue Immune Disorder).  The immune system still baffles doctors!  I have not tested positive for Lupus so I fall in the CFIDS category--the unknown galaxy others fall into who don't test positive for Lupus or Lyme's disease.

Good luck with the rheumatologist,
Karen

[justliveyalife]

Hi! Do you have the same symptoms that I wrote about up there? I am SO anxious to finally get a diagnosis!! Good luck with yours as well.

[lvfrogs]

I just recently tested positive for EBV and have not had mono either. I do recall though, about 3 years ago, having the WORST flu I have ever had in my life, my throat was on fire. All my problems started after that but I never connected it because no doctor ever mentioned EBV to me.  I too, have to see a rheumatologist. Good luck on your further testing.

[jason80]

I tested positively for EBV and never got mono to my best recollection. My doctor mentioned that I could have thought I had a cold and never known.