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EBV ruining my life
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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High dose vitamin C will help you weekly up to when you feel better. Not tablet. By vein . The iv starts like 25000 mg. A functional MD can administer. Juicing green vegetables , No you are not on Coumadin ( Warfarin) which a type of blood thinner. One fresh cup of green juice through a juicer machine a day 1st week . 2nd week 2 to 3 more. Hydrate well if not on fluid restriction. Check Vit D with blood test . The least should be 50. Eat nutritious food.
Long story short... After 30 years of EBV and being dismissed by doctors, even after having them do the blood work ( 12 different times over the years) always positive for both current and past infection.
Then finally 3 years ago read study from University of Utah. They found Spironolactone, drug used for treating high blood pressure, inhibits the reproduction of EBV cells.
Other studies showed patients with "chronic EBV"given Spironolactone improved.
I managed to convince doctor to prescribe some.. CHANGED MY LIFE
After 3 months, did blood work, only positive for past infection. Have not had "flare up" in 3 years. All symptoms, and the list was long, gone, except still slight joint and bone pain, but it's nothing compared to what it was.
Hope this helps others.
Spironolactone