EBV ruining my life

Posted by kjs1980 @kjs1980, May 4 12:37pm

I'm 44 yrs old. Over the years, drs tested me for ANA and sjogrens. 7 out of 10 times it was positive. Said probably lupus. Rheumatologist said ANA negative but IGA elevated and i have Reynauds. No big deal to her. Another dr put me on thyroid meds to help Reynauds. It kinda helps. Red face and dermatologist said not lupus. Covid vaccine forced because of employer in 2021. Both times had covid symptoms for a week. Then a week after that I did get Covid and again 10 months later. Started getting chronic fatigue. Felt really bad in March 2023. Positive for EBV. I was confused because I had mono in my twenties. February 2024 felt bad for days then dr said EBV was Positive AGAIN. December 2024 same symptoms but felt worse than previous. EBV Positive again!! For months after that symptoms would come and go lasting a day or 2. This March 2025, it was rough!! 2 weeks in bed. Testing Positive for EBV again. I have not been the same person. Fatigued every single day. Sometimes more than others. More symptoms added on. Pulse normal at resting then 120 when i stand up. Sent to cardiologist. wasnt during a flare up. He said nothing wrong. Forgetfulness MRI and EEG normal. Wasnt having flare up then either. All of these things showing negative makes it look like im making these up about being sick. Dr said fibromyalgia on top of chronic EBV. i needed to see infectious disease but no one in my area deals with chronic EBV. Drs say reduce stress. I have PTSD. ive noticed if im really stressed then i get swollen glands, fatigue, etc the next day. I did 4 hrs of yardwork and in bed for 4 days after. Went to an amusement park 2 days ago with my kid. I walked slow, sat down every hour to rest and did not ride anything. 4 hrs later i got overheated so we left. Its been 2 days. Im still in bed. Fatigue, swollen glands, dizzy, faint, feverish. OUT OF WORK WITHOUT PAY since April 1st. There's gotta be some treatment because I'm getting worse. Cant a facility give a chemotherapy drug to kill the infected cells or bone marrow from a healthy person? Ive read to take lysine and other vitamins but can't afford it since I'm not working but have health insurance for hospital/clinic stuff.

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jasmine2024 | @jasmine2024 | May 4 4:34pm

Hello I know what your going through I was diagnosed with a past infection of ebv about a year ago and got sick as a dog off and on so I'm assuming that it's a reactivation. It's been almost 6 moths of this and all I do is want to sleep. My doctor said I shouldn't feel this bad unless it's a weakened immune system. So my advice to you is to rest drink lots of water and take a multivitamin and eat healthy. One other thing to do is make sure to brush your teeth twice a day and gargle warm salt water every 2 to 3 hours. Just listen to your body.

jasmine2024 | @jasmine2024 | May 4 4:40pm

Maybe go to the doctors and ask them to check your vitamin levels out and maybe that will help. I lost weight because of this virus like 15 lbs in 6 months I struggle as well. All I did was cry and worry which makes it worse. All I think about am I going to die. It's very sad to deal with this and your not alone. Hugs to you sweetheart.

jasmine2024 | @jasmine2024 | May 4 4:46pm

In reply to @jasmine2024 "Hello I know what your going through I was diagnosed with a past infection of ebv..." + (show)

I forgot to explain that I lost my job of 24 years because of being sick. No income now either. If it's that bad I would file for disability but make sure to call a lawyer and go from there.

kjs1980 | @kjs1980 | May 4 5:19pm

In reply to @jasmine2024 "Maybe go to the doctors and ask them to check your vitamin levels out and maybe..." + (show)

@jasmine2024 thanks for your response. I feel like I am getting worse by the minute. I feel like I'm dying a slow miserable death. These flare ups are reoccurring more often.

kjs1980 | @kjs1980 | May 4 5:22pm

In reply to @jasmine2024 "I forgot to explain that I lost my job of 24 years because of being sick...." + (show)

It's depressing to be 44 and will probably be disabled soon. I heard social security disability doesn't pay much and I have a teenager.

Thanks for all of the advice.

dlydailyhope | @dlydailyhope | May 5 8:45am

@kjs1980
I can totally relate with all of your symptoms.

You may want to check into state disability since you are sick and unable to work. Are you a single parent or do you have a partner or family who can help you? You can check if you are able to qualify for any state benefits for healthcare/supplemental income, etc. Mental health support may be available for free, depending on income/resources.

It seems that there is no cure for EBV and the best they have now is treatment of symptoms with pain relievers, rest, fluids, staying home due to contagious nature of EBV, etc. It is best to manage/reduce stress as best as possible and strengthen your immune system through diet/vitamins/minerals, etc. to avoid triggering and awakening a dormant virus.
1. https://my.clevelandclinic.org/health/diseases/23469-epstein-barr-virus
2. https://www.verywellhealth.com/chronic-mono-5120534
3. https://www.verywellhealth.com/epstein-barr-virus-5069897
4. https://www.cdc.gov/epstein-barr/about/index.html

kjs1980 | @kjs1980 | May 5 10:01am

In reply to @dlydailyhope "@kjs1980 I can totally relate with all of your symptoms. You may want to check into..." + (show)

@dlydailyhope
Thank you for the information. It's been very helpful.

kjs1980 | @kjs1980 | May 5 10:02am

Has CAEBV caused spleen issues with anyone in this group? Lung disease?

djl13 | @djl13 | May 11 5:33pm

Have you read the Epstein Barr Solution book? The author is a doctor in the US and is one of the few who seems to know how to deal with this virus. You can get it on Amazon.

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