EBV flare ups

Posted by kjs1980 @kjs1980, May 18 11:24am

I've had CAEBV for a few years and have flare ups that last about 2 weeks or so each time. Fatigue is everyday though. This last flare up lasted for 2 months. Unable to work. Lately, ive noticed that if I do simple things (take walks, pull weeds out of flowerbeds, etc) and especially if I get to the point to where I begin to sweat i get dizzy and shaky. Shortly after, the fatigue kicks and then "sore throat" . I'm in bed usually all of the next day. So are these mini flare ups? Does anyone else experience this?

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fearlessgrit | @fearlessgrit | May 18 9:51pm

I have been fighting reoccurrence ebv for a couple years now. Rhuem put me on antiviral, hydroxychoroquine (not sure that helps, want off).

Fatigue and pain are my issues. Dizzy and shaky does happen when my blood sugar drops low to 45ish. I get a sore throat when outside among allergens.

My ANA IFA, titer is high, nuclear speckled, ebv igm 122, igg max of course.

I am better than a year ago but 1/3 of the energy i had a year ago. Not finding a doctor that wants to help or has enough knowledge to be able to help.

I am looking at Mayo docs now.

If anyone has new helpful info i would appreciate hearing.

dlydailyhope | @dlydailyhope | May 19 6:02am

@kjs1980
Have you been prescribed any antivirals or anything to support your immune system? What have your doctors recommended? Is there anything that can be done to prevent a trigger and reactivation of EBV?

Working with a nutritionist/dietitian on diet and supplements to support your immune system, reduce inflammation, etc. may help.

Did you have Covid and the shots and could you also have long Covid?

kjs1980 | @kjs1980 | May 20 11:10am

In reply to @fearlessgrit "I have been fighting reoccurrence ebv for a couple years now. Rhuem put me on antiviral,..." + (show)

@fearlessgrit
Mayo rejected me but hopefully you'll get in

fearlessgrit | @fearlessgrit | May 20 2:56pm

Hi, sorry to hear that. They rejected you for a study? Or to be a patient? I don't understand.

newsignin87 | @newsignin87 | May 24 5:53am

Hello. I was diagnosed with EBV Mono about 2 months ago, my igG was 685. I had to leave my job a year ago d/t fatigue, brain fog, neurological issues, chest pain, and more. Yes. I experience this. It seems my flareups are caused by stress. I also cannot tolerate extreme heat or cold. I find I have to take breaks and sit down when dizzy multiple times a day. It takes me 2 or 3 days to recover after an episode which feels like I have the flu. About 6 months ago felt like I was having a stroke. I have been trying to find a solution so I can work, but not able to so far. I am taking supplements and just started nocturnal oxygen. My oxygen drops at night to periods of 76. I think my next step is to find an Epstein Barr neurologist.

jatantum | @jatantum | 1 day ago

In reply to @kjs1980 "@fearlessgrit Mayo rejected me but hopefully you'll get in" + (show)

I was rejected, too. I'm devastated. This was the end of the road for me.

susanmaria | @susanmaria | 21 hours ago

For EBV take iodine and lysine. Will put it into remission.

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