For years I had NO idea why I seemed to get very ill every year I got the flu shot. I thought I just had a weak immune system & was getting a case of the actual flu. But then I did some research (while being sick again), & found that many people with Epstein Barr get sick from the flu cuz it triggers another episode of EBV going into an active state. This would explain why when I get sick from the shot & it gets worse each time I get the shot, it lasts for weeks to months & the symptoms were slightly different from normal flu symptoms.
I thought back & realized that I had been exposed to mono back in school & while I may have ever only had it that one time then never again, an unfortunate medicine reaction years later wreaked havoc on my immune system & kicked the EBV in my system into overdrive, from which I've had hyperactive allergies & chronic bouts of being sick like this ever since! It's very likely this reaction I had many years ago brought out an active state of EBV that has since just kept coming back periodically! It would make total sense & explain why others who've had this same severe medicine reaction (called Steven's-Johnson Syndrome & often lethal!) have recovered better than I did! I also get very oogy eyes, like burning, itching, with white crap discharge. I heard that in people with eye probs like I have that EBV can sometimes cause eye complications too! So for me it caused the dormant EBV to kick into gear, whereas had if I'd never had this bizarre medicine reaction, the EBV may have remained dormant forever. But now I may always have these active states & ever since I seem to just get sick & tired frequently. Sometimes it's worse than others, but all my symptoms are exactly the same as chronic mono/active EBV! And also would explain why whenev my dr did periodic CBC blood tests my white cells were elevated, prompting the dr to ask me if I had a current infection. Thinking she meant like a cold, I'd say no, cuz I always thought the white stringy mucus, & sinus probs were just bad allergies & the other symptoms were just some sort of chronic fatigue... but it never made total sense either, cuz it didn't explain the sore throat, the body aches, headaches, stomach aches/nausea, lack of appetite. etc. So I have a dr apt this wk, but I fear I am already almost well over a month into this recent episode & while most of the accute symptoms have cleared & I am now just left feeling very weak & tired & unable to eat much. I fear it may not show on a Mono Spot or other tests. I need all the info I can get. I now have realized that I will always have these episodes periodically and have had some luck on high doses of magnesium & zinc & vit B (which I just tried on whim then later found it was recommended for EBV!!!) Is there any other therapy/treatment to minimize the active states, get better quicker, or hopefully some miracle treatment? I keep hearing that other than vitamins & supportive care, there isn't much. Has anyone else has success with other treatments (herbal, natural even)? Has anyone else figured out that this EBV is what they had after getting sick every time they get the flu shot? I get sicker than I would with the normal flu, so I'd rather take my chances now, cuz ea year I say "never again" then my dr talks me into it. Now I have a new dr who just may be able to help piece this together! But I'm tired of being sick & tired.
I've spent the past 10 yrs suffering from this, & had little that helps. My last dr wasn't the best at diagnosing so they were befuddled, but knew something was wrong. They thought maybe fibromyalgia, but my symptoms weren't entirely consistent with that, & same with chronic fatigue (but close in some ways). How do I help my dr make a proper diagnosis. I am POSITIVE this is what it is. In fact so positive I have never been more positive. I know it's not a good idea to use the internet to self-diagnose & was a psychology major so I know I thing or 2 about how to properly diagnose, & it's helped my dr more times than I can count. So I have a strong feeling I've finally broken this mysterious case of why I get sick out of the blue & am outta commission for months. Sometimes I've been tired for up to a year. I never know when I'm going to be ok & have had to stop school (again) because just as I was on a role, I got sick again. Idk if I'll be better by spring semester to go back. It's tragic cuz all I wanna do is finish school! I get hives a lot too. But I don't always have the white patches in my throat in each episode, I have gotten them sometimes, but it's not always my worst symptom. I've heard this can be the case, & some don't have bad throat symptoms at all while others do. Is this true? It's the ONLY thing that makes me wonder, otherwise it's an exact symptom match. Does the throat thing have to happen ea time? This time I did have it slightly, but worse I had this white stringy thick mucas that I had to pull outta my throat & was sometimes bloody, & also out of my sinuses. I always thought this was allergies, but then I remembered the girl in school who exposed me to mono said she'd had "thick white stringy mucus she had to pull out of her throat. That I have a lot with episodes & also bloody noses. This is how I broke the case & did some looking & found the flu shot stuff. Help confirm any of this? (sorry this is so long, it's just a complicated story)
This reply is probably long overdue so you might already be on your way to better health... I had the same thing happen to me after the flu shot. In fact, I was diagnosed with chronic active ebv (caebv) and confirmed by NIH. It's a very rare complication of ebv and can be deadly. Have your doctor check EBV DNA pcr blood. If that's positive it's very serious. There are only handful of doctors in US that are aware of it. I have been dealing with this for the last 3 years.... Let me know if you need help navigating the health industry regarding your ebv status.
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