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Epstein-Barr Virus


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After having POTS for 2.5 years, I finally may be on the right track to getting some answers. I had some labwork done last week while I was having a mild flare-up, and it came back positive for the Epstein-Barr virus. I am looking for more information about this and how it might relate to POTS...if anyone can give me some insight, personal experiences, or good websites it would be appreciated! I am looking for info on causes, treatments, and how it relates to POTS and chronic fatigue.

I am on vacation for a few weeks, but I can't wait to get home and get some more bloodwork done so I can see what comes of this. I keep having these recurring viral type flare-ups (once every 4-6 weeks generally) but they've been especially bad since March, coming about every 2-3 weeks and lasting longer. I get so tired I can't function, mny POTS symptoms go crazy, I run a low grade fever, have major aches and pains, and sometimes swollen lymph nodes and scracthy throat- but nobody else ever gets sick in our house and my symptoms usually go away in 3-4 days, then I feel okay until the next time. I don't know why, but maybe this EBV theory will give me more knowledge if nothing else.

Other than that we are down in Florida having fun on vacation and trying to stay cool in this humidity :lol:

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my brother had epstein barr, he got it after mono. He would get so tired that he would throw up. He slept about 16 hours a day and was always sick. He was diagnosed with chronic fatigue and given florinef and paxil. they help him tremendously, he is actually able to go to school and work part time. thats all I really know about it. i hope that this helped some.

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Glad you got some answers. I know nothing about this, but it sounds like it could be a missing piece to your puzzle. I think I told you I had these strange flare-ups of low grade fever, fatigue, aches and pains, bad headache (no sore throat) when I was 24 to 26 yrs old. I saw a couple doctors, they ran no tests except for rheumatoid arthritis and a couple of tests for parasites, which came back negative, shrugged their shoulders and said I'd probably get over it, it was probably something benign I picked up in Africa. One theory was that it was something that transferred from livestock to humans--since I had contact with goats, in particular! Anyway, over time, these symptoms did go away, however, it was also around this time that POTS started for me--very mildly. The POTS symptoms were so vague then that I never pushed for any testing. ANYWAY, it is making me think again about the connections of infections to POTS!

Hope you are enjoying your time in Florida and feeling ok.

Katherine

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I had a positive EBV titer last fall but there is 1 for the antibody or whatever and 1 test that shows if it is active...mine was not active but my antibody titer was high positive meaning I suppose I've had it I guess.

I've had trouble with fatigue for the past 12 years really that I can think of which came on after a pelvic infection and do have chronic sinusitis but as for chronic sore throat or swollen lymph nodes I don't think so. I did however live with my parents at the time my mother had strep and mono and EBV all at the same time and she was later diagnosed with chronic fatigue syndrome and has never been the same (wow I guess about 14 years ago now - she was never tilted but has classic autonomic problems). Anyway, I just figured that my titer may be positive because I was exposed to her when she was so sick ??

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I was diagnosed with active EBV several times. For me, I don't think it made much of a difference in my treatment course...other then when the infection was accute I needed to stop working, and before that, stop my undergrad studies, for several months to recoup. I know that for some people, an accute viral infection can immediately preceed their autonomic symptoms; for some of these folks, they will completely or nearly completely recover at some point (I think someone posted about being told this by their doctor...veryblue, I think?).

Hopefully, you'll be in that group of folks who recover much of what was lost. :lol: Nina

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ebv is usually associated with chronic fatigue syndrome. although i don't normally get the sore throats swollen lymphs and fevers, my doctor thinks i have overlaps with fibro. i've never been tested as he thinks it's pointless, treatments would be the same and i agree. morgan

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Dear Ethansmom,

My POTS is believed to be caused by a severe case of the Epstein Barr Virus or mononucleosis. I've been testing positive for mono for almost 2 years now. At the beginning of the virus I too was extremely achey and had fevers and lost a lot of weight. Some of these symptoms have gone away but I still sleep 12-16 hours/day. (I've been sleeping this much for almost 2 years now!!) If I don't sleep this much I start passing out and the POTS symptoms seem to intensify.

Epstein barr can show up as a chronic type case where your body keeps fighting it. The blood work should show this - have you been tested before? What do Dr's think caused your POTS?

Hang in here and I hope you get some more answers! I am 25 and was healthy and running 3 miles/day until this virus got ahold of me - (it is quite rare for it to last this long though.) Stay encouraged and feel free to ask me any questions about my experiences!

Enjoy your vacation!!!!!!!!!!!

Lisa

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BTW, there are different tests to show active EBV activity that should be done if you've already been infected before...my docs drew the wrong ones a number of times before identifying the correct test for someone with a prior EBV infection.

The 2nd time was not as bad as the first time for me. The first time, I was in college and kept plugging along because I was accostomed to being exhausted. It crept up on me until one night I was having trouble breathing and was sweating just from sitting or standing up for few seconds. I waited until the student health center opened and they took me by ambulance to the hospital. I spent a full week in the hospital with severe inflamation of my spleen and a secondary bacterial infection (strep). The 2nd time, I was again plugging along, but I was much more forceful with my doctor; I actually had to go to his practice director because I got frustrated with being told I was just depressed. The director is the one who finally did the correct tests and I'd been accutely sick for at least 6 mos. I needed 3 mos of leave from my job to recover.

Anyway, it's important to know if the infection is active---I always have a high titre for the EBV antibodies which is pretty irrelevant if you're trying to find if the infection has become activated. The other test looks for specific components only present when the infection is activated.

Nina

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