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Epstein Barr Virus (EBV) Community
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Long Term Chronic EBV

Has anyone experienced long-term issue with elevated EBV numbers going up and down, but aways elevated numbers? Which, I think, is termed "chronic/active infection."

If so, how long did it last? Or, is lasting...
74 Responses
Avatar universal
pvn, you might try plategal,  I think this person has alot of info on EBV
Avatar universal
You're right...she is a wealth of information--and, generous with her time and efort in helping others!

Let us all know how your next Dr visit goes...you are certainly going thru a great deal!  I'm sure there is light at the end of the tunnel.
Avatar universal
Thanks Had AB CT this am,  Now just waiting for results,  In a way you hope it is EBV related and nothing else
Avatar universal

Thank you for the kind words. I actually can't answer the question because in my case, I wasn't diagnosed with CFS until my early 30's, although I know I had CFS since I was a teenager. I actually self-diagnosed myself years before my official diagnosis, but knew that there wasn't a treatment available, so I didn't bring up the subject with my PCP. What I did do back then was see alternative medicine practitioners and they treated my symptoms. The only EBV titer I had done was a couple of years ago and it was off the charts.

I do hope that the information I sent to both on viral reactivation was helpful. Unfortunately for those of us who have CFS, our bodies think we are still fighting an infection(s) long after the infection is gone. Of course this consumes our resources and destroys healthy cells and contributes to our overall feeling of exhaustion.

One thing you guys may want to try, especially if you need some ENERGY is Bragg's raw, unfiltered apple cider vinegar. I add a couple of Tablespoons to my drinking water every single day and it gives me an extra hours worth of energy. My mother and husband are now using it and they are now sharing the same results.
540068 tn?1213852058
I am new to this forum and am wondering if you can give me some advice.  I was diagnosed with mono april 07, three days before my 45th birthday and was out of work for 3 mos.  In Nov 07 the symptoms came back, not all of them, but the horrible fatigue and the gland by my right ear and behind my neck stay swollen all the time...I feel like all I do is sleep and when Im up Im tired...I had some blood work done and should get them back soon...I take vitamins and lots of B12 everyday and drink lots of water.  I guess what I need is help to get proactive about my situation...What should I do, what doctor should I go to, any advise you have for me would be great.  I havent worked for months and my money is running out fast...HELP!!!
Avatar universal

Hi Lisa,

Since I can't post many links on this board, I will zip you a private message with information that I have found to be helpful in my quest to conquer CFS/ME (AKA: chronic EBV or post-viral syndrome). I know the treatment I'm doing now is set out to cure CFS and that I'm making progress. It just takes a long time... LOL !
540068 tn?1213852058
Can you give me the information on swthrt45622000 on yahoo messenger...
Lisa
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You didn't receive the information in your inbox ?
Avatar universal
Have yall had a problem with cold sores and EBV,   I have always had them they just seem to come on more often a take longer to heal now, and now I get them on my tongue never was there before?
Avatar universal
Had my 3 month follow up blood draw today hopefully I, will be advise next week my EBV numbers went down
Avatar universal
How long have you been ill with EBV, Padro ?
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I was told I had it with blood work in Feb,  I really think I got it before Xmas last year, Finally went to Dr. in Feb
Avatar universal

I would bring up the subject of CFS with your physician. The CDC recommends this if you've had EBV symptoms for at least 6 months. Of course the only downfall to this is a diagnosis of "CFS" could be in your medical records.... keep that in mind and always make sure you have continuous insurance coverage.

Avatar universal
I sure hope not, Maybe my numbers will be down.  I should say since Dec07  lets say 10 being the worst, which I was in Dec    I would say I am a 7+   My only issues now are the lightheadedness not everday like before but still there,  The minor ab pain/nusua and the tiredness, I can at least make it past 7.00pm now,  So if I get a good report from the colon/endo Monday and my numbers come down maybe just maybe I am on the right track.  But boy what a trip.  Monday and Friday (Primary Dr Appt.) will tell the story.
Avatar universal
I have a question about your comment regarding CFS being on our medical records. Is that worse than having EBV on our records?  I ask because I was going to talk to my doc about CFS. Is there a reason I would not want to bring it up?  I know what you mean about continous insurance. I have private BC/BS, PPO with a 3,500 deductable. I am sure my premiums will go up around 100.00 starting in October. I was thinking of going to a 5,000 or 10,000 deductable to keep my premiums lower.  Scarey thought to go that high, but what else do you do once you have EBV...I don't think an insurance company will take you.  Not sure about that though....
Avatar universal

I'm not sure if EBV is worse than CFS on your medical records. The thing is, if you were disabled, then you would certainly need to prove to your employer's long term disability company that you are that sick. I think then, CFS would be a better diagnosis and you would want to make sure that your physician uses the right terminology and does the right testing. There is now a test that can help prove disability in CFS patients.

Please double check, but the way that I understand it is that the law says that if you keep your insurance in force at ALL times and don't let it lapse, (doesn't matter which company) then the next insurance company cannot say that you have a "pre-existing" condition and refuse to pay for any treatments or testing related to that condition.

Good luck with your EBV titers. You know there are people who recover from CFS. Be sure to rest when your body tells you to and more importantly, keep your stress levels under control.  

If I were in your shoes... knowing what I know now about CFS, I would at least buy the Bragg's Raw Apple Cider Vinegar and add some to my water every single day. It kills viruses and bacteria and also helps your immune system. I know it gives me energy. And in addition to that, I would at least purchase Dr. Jernigan's virus formula. Remember that link I sent to you ? I would try that at first. But of course, before trying anything, let your physician know. (although it is all natural) Other supplements that many CFS patients are taking and that I have found to be helpful are: magnesium, B12 (drops or shots only), D-Ribose, L-Carnitine, COQ10 and fish oils.

Best,

PlateletGal
Avatar universal

P.S. --- I am assuming that your physician has not treated you with an antiviral medication, correct ?
Avatar universal
You are correct--no meds. I try to stay away from them.

I am taking everything you mentioned except Jernigan's formula and the Bragg's vinegar--great idea.  Also, I take 2 cc B12 shot 1xmonth (cheaper in one shot instead of every week) and I take sublingal B12 every day in addition to the shot. Is it possible to take too much?  Oh oh...

Well, after getting my last EBV test and seeing the horrendous statement "chronic active EBV" in the interpertation line, I have decided to talk to my doc about SS disability. I kept thinking surely this would end...it has been two years now. But, it appears I have been in denial. I haven't worked for the last two years and the required credits in required # of quarters is ending soon, so I feel like I better go ahead and bite the bullet and apply. I will probably use a lawyer since I don't have the energy to the paperwork myself (or the brain function :)). The name Binder & Binder keeps popping up on various EBV and medical forums...I'll probably just call them.

The doc has mentioned CFS a few times, but I kept saying I think it's "just" EBV and I would turn the corner soon. I suppose I better admit to the CFS. I don't know...this whole situation is so strange. Whoever thought our lives would change so much...

Avatar universal
Keep your head up,  Good Luck with your application for SS.
Avatar universal

"Whoever thought our lives would change so much... "

I know. I had undiagnosed CFS for so many years, right after I had a bout with mono when I was a teenager. I managed to work, but it is very difficult at times and I remember my boss did everything he could to keep me and let me work on weekends to make up for some of my absence.

I received an e-mail from the CFIDS Association of America this week. One of their new board members has CFS and in the e-mail, he shared his story. This guy is only 28 years old and after years of struggling, he finally had to quit his job and move in with his parent's.  He spoke about how his illness has deprived him of so many things, including a high school sweetheart.

I am very hopeful that a cure is on the horizon. To be honest with you, I don't trust pharmaceutical companies and have seen them in the last few decades not making any vaccines, but only medications for palliative care. But that latest antiviral drug that is now in its second trial at Stanford University is a possible cure. (thank you Dr. Montoya).

As Padro said, keep your head up.
Avatar universal
Did you ever tell me about the cold sore question?  
Avatar universal
Colon/Endo went fine this am,  Dr said only thing he could see was a Acid Reflux problem, at least makes me feel better, One more appointment Friday with my primary keep your fingers crossed my EBV numbers went down   Thanks Padro
Avatar universal

I've never had the cold sores, but I have heard of fibromyalgia patients often breaking out in shingles (also caused by the herpes virus). Since your immune system is compromised right now, I'm not surprised to hear that you have cold sores.

I'm glad to hear that your tests were negative and I hope that link I sent you about abdominal pain in CFS patients helped. I know we can get hit by anything. I often have disgestive issues myself.
Avatar universal
When you say gland by your right ear, is it the indentation that is sort of behind/below the ear?
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