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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kb0126 | @kb0126 | Sep 20 12:52am

Hello, I know this is an older post, but I'm currently experiencing similar symptoms as you described. For me, it started back in June 2024, I fainted at work, felt like my entire body was a solid brick and on fire, could barely talk I was so spaced out and was sent to the ER and discharged that day with a normal heart rate and pulse, no viruses found then. In January this year, I had another attack and tested positive for mono and Covid. I've been having scary flareups that manifest as burning, prickling face, painful stuffy ears with high-pitched tinnitus, debilitating brain fog when I exert energy or if I don't sleep well, etc. My immunologist ordered blood work for allergies plus a tryptase lab test. They told me my tryptase (histamine) was high and they put me on Pepcid and Allegra twice a day. It hasn't really helped much, but I'm hoping it just takes time. I feel like it's possible I have a combination of mono relapse, ME/CFS, MCAS (mast cell activation syndrome), and long Covid, but I don't have a current diagnosis just yet. I did notice my thyroid antibodies were high, but there were no signs of any autoimmune presence.

I wasn't sure if you'd ever heard of MCAS before, but after testing positive for it, I wonder if that's not part of what happened to me. I think it's also linked to gut biome disorders like IBS too. My face turns red hot, not like a rash or anything, but it turns red around my cheeks, my eyes start to water, I have excruciating anxiety, sniffing like I did when I had Covid, and I have extreme pain and syncope if it gets bad enough during a flareup, plus my throat turns red and starts to get sore again. I used to enjoy running, but I had to cut it out a year ago because my symptoms got so bad during workouts that I can barely leave my home anymore. Hope you feel better now, I'm still in the middle of ruling out possibilities myself, so I thought I'd just drop this reply if it helps.

deg100silver | @deg100silver | Sep 22 11:45am

In reply to @cszijgya "Yes, I have chronic EBV as well. My spleen got enlarged. I also developed very large..." + (show)

@cszijgya

Yes, I have chronic EBV as well. My spleen got enlarged. I also developed very large uterine fibroids, which I had to have removed along with my uterus. I am 41 years old. I’ve been battling with chronic EBV for several years. There was only one doctor, unfortunately, who retired who was able to help me. I have never gotten full control over it, but what did help was drinking two 16 ounce glasses of celery juice first thing on an empty stomach every morning. It is important to have a half a lemon squeezed into 16 ounces of water and drink the entire glass 30 minutes before doing the celery juice. The juice didn’t shrink the fibroids because unfortunately, with something like that which is a mass it doesn’t just magically disappear. I do believe it kept them from getting larger. Juice did shrink my spleen back to normal and cleared up my cyst in one of my ovaries, and I had a nodule on my liver that went away. Here is some evidence that the celery juice did help with my cyst. So I had stopped drinking the celery juice. The cyst came back right before I was supposed to have my procedure to remove my uterus and the fibroids. I asked him to go in and pop the cyst which he said he would do. One week before the procedure I asked if I could drink the celery juice again, so I did. When he did the procedure, he said the cyst was gone. I don’t know if this will work for everyone but it is worth a try and not really expensive. A recent discovery that helped my sore throat issues, skin inflammation and tiredness was taking 2000 mg of vitamin C a day. I would not go over that because it can make you feel sick and once your symptoms resolved stop taking it or go down to 1000 mg. But make sure you take one that has liposomal delivery as the stomach acid can prevent you from absorbing all the vitamin C. It is expensive, but I recommend this brand Cymbiotika 1000 mg vitamin C pouches. You just squeeze it in your mouth or add it to your favorite drink. You can get them in a box of 30 for less. I’ve been doing this for a little while, but it did help with the last flareup and things went back to normal for a few weeks. Unfortunately, stress and catching any kind of bug causes it to flare up again. That’s why I just went back on the larger dose of vitamin C. I agree that immune support is very important to keep EBV under control. I have the MTHF gene mutation so my body can’t process certain vitamin B. In the past my Doctor had put me on L5-MTHF, vitamin D supreme, Reservatrol Supreme, B supreme and L-lysine. I continue taking these things for several years. Of course you should add some zinc and vitamin C to keep the immune system up. Make sure the vitamins are good quality because as you know a lot of vitamins don’t get absorbed into the body, but the brand designs for health, which is what my doctor told me to take is very good. I’ve had my vitamin levels checked and they said they’re absorbing well and everything looks good so they definitely worth the high price.. It is sad that we don’t have more research being done to find a real cure. It would also be nice if doctors took this more seriously. If your doctor laughs or it doesn’t take EBV infection seriously I would find a different doctor. And if you can’t at least request a test to prove that your theory is correct. That’s what I did when I went to an immunologist and the test came back very positive and high as expected. I hope this helps some of you who have chronic EBV

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What you wrote is very informative. Over 30 years ago in N.Y.C a doctor diagnosed with Epstein Barr and laughed on my face and stated that every person in N. Y. has Epstein Barr. He refused to deal with it or treat it and that was the end of it. I did never see him again. In general I just didn't like him. I felt he should not even be a doctor. Anyway, I have multiple medical conditions including at least 4 auto immune diseases as well as other other medical conditions. So my fatigue I believe is coming from more than one medical care ndirion not just Epstein Barr Virus.
I found the your drink combination about celery very interesting. I would try except first of all I hate the taste of celery and second I have other conditions that cause chronic fatigue. But I am really glad it works for you. I also found it interesting about the cysts. Many years ago cysts got abnormally large in both my ovaries. So much so, that my GYN told me that he would only wait a certain amount of time to see if they would shrink if not he would have to do a hysterectomy. He feared that my cysts could twist and open and I would die. Luckily at my next visit the cysts had gotten smaller and I didn't need the hysterectomy. I still wanted to have children at that time. So I was lucky. And yes I had fibroids too and still have a few but not as many as before, maybe because I am older now.

But I live my life with chronic pain all over my body as well due to other conditions, and am awaiting spinal surgery for a second time. So I have my hands full. I just take one day at a time. I am not permitted to take vitamin C per my doctor. It interferes with the absorption of some medicine I am taking. So you have to be careful telling recommending vitamin C to people. They need to find out from their doctors based on it they are taking any medicines. There are foods that I cannot eat, and things that I cannot drink, and I cannot drink alcohol, or smoke, because of different medicines that I am on. I cannot have alcohol because of my medicines nor caffeine. There are restrictions Sometimes in people's lives. Make sure to tell people to discuss these things with their doctors.
Thank you for your information though. It was very informative. I wish you well.

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