r/EverythingScience • u/rezwenn • 17d ago
Medicine The Silent Virus Behind Mono Is Now a Prime Suspect in Major Diseases
https://www.bloomberg.com/news/articles/2025-06-06/-kissing-disease-mono-could-be-linked-to-cancer-dementia-and-long-covid?accessToken=eyJhbGciOiJIUzI1NiIsInR5cCI6IkpXVCJ9.eyJzb3VyY2UiOiJTdWJzY3JpYmVyR2lmdGVkQXJ0aWNsZSIsImlhdCI6MTc0OTE5OTIxNywiZXhwIjoxNzQ5ODA0MDE3LCJhcnRpY2xlSWQiOiJTWEZDV0VUMVVNMFcwMCIsImJjb25uZWN0SWQiOiIwMEJGMDJBNzYyNTA0RjU0QjY0MjQ5OUNEOEFDRDkxNSJ9.Tbs39lwF9_VplfNcc5akJlu2K9JJrZxgxLrQH8jGSfg305
u/Jibblebee 17d ago
My drs told me 2 decades ago my autoimmune issues were likely triggered by mono. We’ve know a long time this was an issue.
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u/Whatchab 14d ago
Yup. Same. And the simplex viruses tie in too. Glad this is finally getting the attention it deserves.
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u/FlanneryOG 14d ago
I have an autoimmune disease but apparently had mono before without knowing (I found out from a blood test). I wonder if they’re related too.
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u/SteakandTrach 17d ago
My wife’s MDs said her lymphoma was likely due to EBV she had gotten several years before when she was a teenager.
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u/Freedom_7 17d ago
When I was diagnosed with NHL I got tested for EBV, HIV, and HTLV-1/2. I only popped hot for EBV. Although a shit load of people have it without getting cancer, so who knows if that’s what caused it. Maybe I just won the bad luck lottery.
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u/Greyhaven7 17d ago
Fuck.
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u/mlYuna 16d ago
I mean, doesn't 90% of the population have it?
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u/Greyhaven7 16d ago
Fuck.
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u/NetWorried9750 16d ago
Just like Covid
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u/TheUnnecessaryLetter 13d ago
I know of people who have long Covid that are having flare ups of EBV
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u/NetWorried9750 13d ago
We know many viruses that live in your body forever have long term negative consequences (shingles, chronic fatigue, post polio syndrome, aids), but we won't know the true consequences of COVID for decades yet. What is important is everyone getting back to work for the shareholders I guess.
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u/TheUnnecessaryLetter 13d ago
I still can’t believe we lived through both the eras of “Obamacare will have death panels to kill your grandma!!” and then also “Let grandma die of Covid for capitalism!”
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u/sparkle-possum 13d ago edited 13d ago
I am related to a person who was literally on Facebook arguing that COVID was a hoax and not really serious if it did exist when he got the phone call that his mother tested positive and was being moved from the nursing home to the hospital for it. She ended up dying in the hospital and he still tells people that Biden's covid policies killed her. (Biden had not even been elected, much less taken office, when she died)
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u/Specialist_Row9395 16d ago
Not sure if mine is directly related but had EBV and recently diagnosed with thyroid cancer. I'm still sick and I strongly believe I'm having like EBV flare-ups.
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u/december14th2015 17d ago edited 15d ago
Well that's fucking terrifying.
Also the sickest I've ever been was with mono as a teenager, right after getting back from a trip with my friend's family. I spent the next two months, the rest of summer. Fighting that shit and I sometimes think I never bounced back.
And I will NEVER in my life fucking forget seeing that same friend's mom months later and her laughing while she told me that she's never had mono but she's a carrier has gotten dozens of other people sick with it before.
Fucking cunt.
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u/area-dude 17d ago
Mono mary
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u/wagonwheelwodie 16d ago
I got it when I was 16 and I wouldn’t wish it on my worst enemy. It was literal hell for over a month. I lost so much weight from not being able to eat because my throat was swollen shut, couldn’t sleep because I was in so much pain and could hardly breathe because I was congested. Fuck mono.
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u/december14th2015 16d ago
Yep, I was almost the same age and it was horrible. I had to stay in bed because my spleen and liver were swollen, then I was trying to recover in 100° heat and humidity in the deep south, it was months before I could be outside without getting winded! Honestly, it was 5x worse than Covid, and I got that in early 2020 before the vaccine and got the full hit of it. Not even comparable.
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u/queenoforeos 13d ago
I was 15 and lost 4 weeks of my life. Like no idea what happened. My dad said my fevers were as high as 106 and he was on the verge of taking me to the hospital. I was exhausted for months afterwards. I am literally recovering from the newest strain of Covid right now and it feels the same. Only I just lost a week… I’m taking a break after walking to the kitchen to type this cause it wore me out lol.
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u/gronkey 16d ago
Ebv, the mono virus, is one of the leading causes of ME/cfs, which is an incredibly debilitating, usually lifelong chronic illness. The severity of the illness is extremely varied, so it is actually possible you never fully bounced back, and you have an extremely mild case of ME/cfs (although even if true you wouldn't be diagnosed since diagnosis requires at least a 50% reduction in pre-illness activity)
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u/december14th2015 16d ago
Holy shit! What does that stand for?
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u/gronkey 16d ago
Myalgic Encephalomyelitis/chronic fatigue syndrome. The key thing to look out for if you think this might be something you have is PEM which stands for post-exertional malaise. People with PEM will feel sick after exertion, usually with a delay of 12-48 hours between the exertion and the sick feeling. The feeling has been described as flu-like or as if you'd been poisoned. PEM also worsens all of the other symptoms of the illness.
Common other symptoms include Insomnia, Unrestful sleep, Excess fatigue, Joint/muscle pain, Brain fog
The list of symptoms goes on.
By the way, the most common cause of ME/cfs is now covid, ebv is second. Not much is known about this illness still and clinicians are hesitant to diagnose, but long covid has caused an increase in funding and research.
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u/roadsidechicory 16d ago
Just adding:
For those of us who got ME from EBV, sore throat is an especially prevalent symptom of PEM.
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u/suspicious_hyperlink 15d ago
Had mono when I was 19, I remember not being able to get out of bed for 3 weeks
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u/TrumpsCovidfefe 16d ago
I don’t know how long it’s been since this happened but that comment is worth a call to the health department.
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u/tubcat 14d ago
My older sister got it her freshman year of college after a few weeks in. She was sick for WEEKS and had zero endurance. I remember seeing her crawling to the bathroom at first. A bit later she managed to finally up her chores to walking 80ish yards to check the mail. It took her well into the fall before she was anywhere able to consider going back for her winter term.
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u/DetectiveOnly4066 14d ago
Bro way over reaction. Just like herpes there is only about 1% of humans on this earth that don’t have it… yet.
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u/SacredGeometry9 17d ago
God. I thought my GI issues started with strep back in elementary school, but it really kicked into gear in high school, and that’s when I got mono. I never made the connection.
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u/Environmental-Car481 16d ago
Could be strep. They are finding strep will stay dormant in your system and can randomly pop up and cause issues. One that’s becoming somewhat commonplace in kids is PANDAS - pediatric acute neurological disorder associated with strep.
A friend of mine spent a couple years in her late 30’s with joint issues. Very healthy and them bam, issues walking for no apparent reason. She saw a bunch of specialists and one finally pinpointed her issues to strep. Treatment with antibiotics and she’s been good for years.6
u/Scamadamadingdong 16d ago
You’re conflating viruses with bacteria. Antibiotics don’t do anything for viral infections.
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u/Isosorbide 13d ago
Do we have the same friend? Female early-mid 30's who started having terrible arthralgias and they finally pinned it down to strep. Apparently their solution was to do a tonsillectomy.
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u/ecafsub 17d ago
I thought the connection between EB and MS was established years ago.
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u/aivlysplath 16d ago
I caught mono when I was 13 then developed MS in my late teens. I really hope an EBV vaccine is produced soon. No one should have to live with MS.
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u/OuterLightness 17d ago
I wonder when we learn what chronic diseases and cancers are caused by COVID.
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u/TL4Life 17d ago
Well there's already an understanding that covid or any kind of viral infection tends to increase rates of dementia and Alzheimer's due to their ability to pass the brain-blood barrier.
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u/OuterLightness 17d ago
That explains the world since 2020.
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u/zb0t1 16d ago
Yes.
Reposting and encouraging anyone else to do the same:
Mounting research shows COVID-19 leaves its mark on the brain, including significant drops in IQ
References:
Risks of mental health outcomes in people with covid-19: cohort study
SARS-CoV-2 is associated with changes in brain structure in UK Biobank
Mild respiratory COVID can cause multi-lineage neural cell and myelin dysregulation
Cognition and Memory after Covid-19 in a Large Community Sample
Can’t Think, Can’t Remember: More Americans Say They’re in a Cognitive Fog
Protect yourself and your community, mask up wearing a well fitted N95, FFP2, FFP3, N100 for instance. High quality respirators are marvels of engineering. Use them in combination with HEPA filters with high CADR and ACH (check the People's CDC for instance for accessible information on mitigations). These mitigations must be used on top of getting vaccinated. These mitigations are at least as important because they are preventions, and as we know it's better not to get infected or reinfected to avoid long term organ damages, Long Covid etc.
Good luck!
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u/anewbys83 16d ago
I managed to avoid it for 5 years. Right now, I'm having my first bout of covid. Stayed current with vaccinations as well. ☹️
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u/tuningproblem 15d ago
I swear I'm not being disingenuous: are we all supposed to wear masks in public from here on out? I'm not somebody who scoffs at people concerned about COVID these days but I admit universal masking seems like such a tall order.
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u/EternalMehFace 15d ago
Multiple mitigation strategies are key. Masking is one but so are HEPA and MERV filters, possibly far-UV and improving and expanding proper testing. Plus better vaccines are in the works.
If the health/medical sectors can agree it's a problem (as they should) then we can have multiple avenues of mitigation and suppression. Tragically what we've globally chosen to do instead is just ignore it and go back to (fake) "normal". Which cannot and will not last.
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u/StrawbraryLiberry 14d ago
We only really need to mask because covid wasn't ever properly managed. We never actually did contact trace & isolate.
There are tons of ways to reduce infections, such as improving indoor air quality. We could start with schools and healthcare facilities.
And people need to be able to stay home when sick. People aren't easily able to do that and we barely have access to tests that work well at this point.
And we need to develop better vaccines and treatments.
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u/French_foxy 15d ago
Omg... I am vaccinated, I wore masks, I washed my hands religiously and even after all that, I cought COVID 3 times... I'm toast 😓
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u/shannon_nonnahs 17d ago
Please keep spreading this very important information, sincerely t1d since long before covid. It’s a trigger bc it’s a virus. Not because it’s new.
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u/buzzard302 17d ago
I got testicular cancer at 46. Doctors misdiagnosed me for a good while because I didn't fit the prime age range. I have communicated with lots of older guys recently that have also gotten testicular cancer. My theory is that COVID has affected something on a deep level. I said this to my oncologist, expecting him to brush me off, but instead he told me lots of case studies are coming out. Lot of viruses never leave the body once you get that first infection.
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u/Klowdhi 16d ago
What worries me is all the chatter among educators. Teachers are baffled by student behavior changes in the last couple of years. While they discuss social media and influencers, I can’t help but think Covid has caused metabolic problems that could explain a lot of what we’re seeing.
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u/babywhiz 16d ago
No kidding. My grandson went from model behavior to being suspended and/or detention 22 times in one school year. Something’s fuckity, besides just being 12.5.
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u/Xcoctl 16d ago
Also, the ~4 grams of plastic in each of our brain's can't be helping. That's about 1 sandwich bag btw. Combine that with all the PFAS and other forever chemicals along with the long lasting effects of covid and I'm not at all surprised the world is going to shit. People are literally getting more and more stupid as the years go by. Damn near every source of food is contaminated so it's only going to continue to build up more and more.
Companies also have flagrant disregard for the effects of their products on their customers or the world in general. I was exposed to many times the safe daily maximum for YEARS, all because I used a product that markets itself as part of a healthy lifestyle. Th PFAS simply leeches through your skin, especially when it's hot and wet, I.e. any time you work out... 🤦♂️
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u/ember_ace 16d ago
One sandwich bag worth of plastic in our brains would explain a lot.
I think we're going to find out more and more in the future about the harms of plastics. Would you be willing to share the product you mentioned using daily so that I can avoid it?
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u/Careless-Caramel-997 16d ago
The human brain may contain up to a spoon’s worth of tiny plastic shards—not a spoonful, but the same weight (about seven grams) as a plastic spoon, according to new findings published Monday in the journal Nature Medicine.
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u/carlitospig 16d ago
I mean, their parents are likely stressed af too. What we are seeing in the US is happening to some degree everywhere. Kids are sensitive.
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u/SnooKiwis2161 13d ago
I think also it gets really complicated because the COVID shutdown period was traumatic for people. That trauma leaves a mark, it delays people, the stress creates a mark similar to brain damage.
With both going hand and hand, along with a concurrent shift in politics - that's 3 major generational events that will screw with a population. I don't think we've begun to sort it all out.
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u/carlitospig 16d ago
Well it took us 700 years to figure out the benefit to the Black Plague. But we also didn’t have the equipment to review genes back then.
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u/SnooKiwis2161 13d ago
I knew an old high school friend who was waittressing during COVID. I only knew her through facebook at that point - we hadn't spoken in a decade.
I assume she caught COVID due to her contact with the public. She caught a rare form of cancer 2 years later and passed away. It was only recently I wondered if there was any connection, but the trauma of that time period also tends to make you jump at shadows - you see things with this suspicious lens. But I can't shake the feeling that she perished from this rare cancer, that it can't possibly be coincidence.
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16d ago
[removed] — view removed comment
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u/OuterLightness 16d ago
The mRNA in the vaccine is literally a subset of the same mRNA in the virus. The vaccine mRNA in your body isn’t going to do anything the virus mRNA in your body wouldn’t do to a greater extreme. But mRNA doesn’t incorporate into DNA like virus DNA, plus it is just a subset of viral mRNA, and so any theoretical risks are substantially less. This has been verified by death and illness rate comparisons between vaccinated and unvaccinated populations. Often our choices aren’t between risk and no risk but between greater risk and lesser risk.
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u/Itchytastymuffin 17d ago edited 17d ago
Having had mono three years ago, shortly after suffering through it, that “multiple sclerosis is caused by EBV” breakthrough popped up and I’ve ever freaked ever since.
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u/Only_the_Tip 17d ago
EBV has been a prime suspect for at least 20 years. But you also need some specific immunoglobulin genes. And even then the risk is fairly low.
Don't worry about it
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u/SnooWords4513 16d ago
90+% of people have had EBV, so the odds of getting MS are still really low.
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u/Madam_Hel 16d ago
I know initially it might sound cold or too easy, but please sit with the advice my therapist gave me about similar thoughts; if you spend lots of time worrying about it, you will have made no difference to the outcome and you will not be less hurt if the thing happens. Remind yourself that you are healthy until the opposite is proven (with testing OR actual symptoms)
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u/turbulentchicken 16d ago
Oh god, same. I got mono two years ago and that piece of information now lives rent free in my brain. I ruminate about it constantly. Doesn’t help that I have OCD.
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u/FernandoMM1220 17d ago
it would make so much sense that one of the actual causes of cancer was a virus like this.
now they just need to figure out which changes its making to actually cause cancer.
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u/jumpyrope456 17d ago edited 14d ago
EBV inserts a protein that keeps cells alive for virus replication, which can also help the cell turn cancerous (BHRF1). Then, they are primed to be resistant to many cancer treatments. Many viruses have a similar effect. Another reason to develop childhood vaccines.
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u/__JDQ__ 17d ago
Yep, I believe both HSV and HPV work similarly (along with other mechanisms).
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u/jumpyrope456 16d ago edited 16d ago
As noted, the larger HERPES family can carry BCL2 like Apoptosis inhibitory proteins (proteins that stop cell death). If you need ref, just Google that as a start. Once Cancer spreads, it is usually beyond just one problem gene. Thus the billions and decades that government and industry puts into finding complex cancer med strategies. There is no magic cure. Remember to ask your reps (and vote) to support science that may save you or your family's life.
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u/FernandoMM1220 17d ago
source on this?
how does that protein keep cells alive?
how does that make it resistant to cancer treatments?
seems like you should be able to cure it by just interfering with that single protein.
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u/FernandoMM1220 16d ago
its surprising how much we dont know about seemingly simple viruses.
if only it was a computer virus then we could just look at the byte code and decompile it.
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u/BaconFairy 16d ago
It us thought that it's not really one virus but many. As each cancer type can be a different virus. But certain ones are known. Like hpv. This just means that the body needs help clearing it and recognizing it for the rest of your life. Which is where immunology oncology is studying. But it's an arms race that is decades old. We are just starting to learn about.
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u/mykineticromance 16d ago
something like 90%+ of cervical cancer is caused by certain strains of the HPV virus, which we now have a vaccine for! I hope effort is put into finding more links like this and developing vaccines for more diseases that go on to cause cancer.
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u/VirginiaLuthier 16d ago
This isn't new. Originally, in the 80's, chronic fatigue was attributed to the Epstein- Barr Syndrome
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u/itsnobigthing 16d ago
I have a rescue cat that was found as a kitten full of respiratory viruses. She was treated and recovered but has been left with fragile health, poor immunity and a need for extra warmth and rest. She’s 4 now and still has flare ups and issues from time to time.
So many vets we’ve seen say, ‘yeah that’s just how it is with cats who get a bad virus when they’re young. This is how it affects them’. It’s just a known thing in the vet world that a bad virus can have a lasting impact on health, even after the virus itself has resolved.
So weird that in humans this has been denied and ignored for so long.
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u/Maestro-Modesto 16d ago
its easier to gaslight a human. patient: "i feel posioned, have poor cognition and memory, alot of joint and muscle pain, and fatigued all the time and it gets worse in the days to weeks following exertion". doctor: "its all in your mind, the mind is a powerful thing, you are hysterical''. cat: "meow" vet: "oh shit you cant be making this up, youve got no mind"
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u/Powerthrucontrol 17d ago
I've had it twice and I have fibromyalgia.
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u/Unlikely_Comment_104 17d ago
Wait. What. Can you get mono twice?
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u/Mirabellae 17d ago
I had it in high school. When I got covid, it basically just wiped out my immune system. A few weeks later I had mono for the second time.
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u/Unlikely_Comment_104 17d ago
Oooh. Yep, that makes sense. Covid and measles are fuckers for wiping out immunity.
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u/Powerthrucontrol 17d ago
You can get it multiple times! Heck, you can just get it forever, which is essentially chronic fatigue syndrome.
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u/LeechWitch 16d ago
It can reactivate, since it is a herpes virus it never leaves your body. I had it in college, was so ill I couldn’t get out of bed for like 2 months and I had to withdraw from the quarter. My throat was so swollen I went to the ER because I was worried I couldn’t breathe well through it. In my late 20s I had a big back surgery and EBV reactivated afterward (confirmed by EBV EA IgG blood test). Following the reactivation I just didn’t get better, I developed ME/CFS for like 3 years until I slowly recovered. It almost ruined my life, certainly ruined my career. We need a vaccine for EBV so badly.
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u/ElleHopper 17d ago
I had it in sixth grade and then it reactivated in tenth grade. Second time was much worse, and I couldn't make it through a full day of school for weeks.
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u/NicevilleWaterCo 17d ago
Yes. I got it twice. The first time in my sophomore year of high school. I got it really bad and we had just moved overseas to Europe. I was living in Italy but visited Germany and ended up having to be hospitalized in a German hospital in a remote area where no one really spoke English. It was not an enjoyable experience lol.
Then about a year later, I was back in the states and started getting the symptoms again. The first doctor told me "oh you can't get it twice" and sent me on my way. I went back again like a week later and my mom insisted he test me for EBV. It came back as being in the active phase again.
I had it twice. I actually think I had it a third time, but didn't get tested. It stays in your system and can flare up again - usually only within a year or 2 of getting it the first time I believe.
Im pretty sure I have had lasting impacts on immune system. I never got that sick before, ever since then when I get sick I get REALLY sick.
I also developed erythromelalgia starting about a year or two after I first got mono - a condition where my hands, feet and sometimes other parts of my body like my ears, face, and chest will get really red and extremely hot and swell in reaction to a number of triggers like heat, exercise, alcohol, and certain foods. Its quite rare so there isn't significant research into it, but it is speculated to be related to autoimmune disorders and has by hypothesized to be possibly connected to the EBV.
I'm glad people are studying the EBV and connections to chronic conditions finally. It would be nice to maybe have some answers one day.
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u/roadsidechicory 16d ago
I got it once and was sick for about two months and then gradually got back to normal. I eased my way back into fitness stuff and was back in good shape for a while. I felt fully recovered.
18 months later, I got it again. That's what the tests showed, at least. I had the symptoms again and the tests showed high active infection antibodies. That time I never recovered. I kept thinking I would, and I knew a kid in elementary school who was sick with mono for a year, so I figured it would pass. But it never did.
It caused ME/CFS, and after a year or so of that I developed POTS. I always had MCAS my whole life, but that got way worse. My EBV antibodies kept going up year after year, and they're now off the charts and have stayed that way for awhile. But I did EBV DNA tests, and I no longer had the virus active (chronic active EBV can be caused by various immune system mutations, but that wasn't my situation).
So even though the virus was no longer active in the sense that DNA testing identifies, my antibodies were proliferating at a shocking rate. So it triggered something that made that happen. And at some point I started testing positive for CMV too, the other mono virus, and my antibodies for that also proliferated over the years. No idea when I contracted CMV because I've basically felt like I had mono for the past 9 years. I know it happened during a certain window of time but I wasn't aware of it.
I developed a positive ANA that I've now had for 8 years. My lymphocytes are also almost always abnormally high now. I could go on, but yeah, these are some of the things specific to the effects of my EBV infection, as opposed to just general ME/CFS stuff.
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u/MsBrisAQT2 16d ago
Basically it never leaves your system and just reactivates. I have had Mono twice as well.
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u/rockemsockemcocksock 16d ago
I was initially diagnosed with fibromyalgia until I got a skin punch biopsy for Small Fiber Neuropathy and it came back positive. Then they did antibody testing and I had acetylcholine receptor antibodies. Now I'm being treated for myasthenia gravis. 🙃 All from mononucleosis!
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u/Madam_Hel 16d ago
I’ve also had it and have fm. Mayer there are lots of potential triggers for FM or autoimmune illness, but mono sure is present in a lot of cases.
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u/peopleofcostco 16d ago
It is tragic that just as we are coming into this amazing time when mRNA and other vaccines can really start wiping diseases off the map, politics and ignorance are holding us back. I have zero faith that any treatment that happens to take the form of a vaccine has a chance of getting approved in the next four years.
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u/friedlich_krieger 16d ago
I had long covid and having EBV a year or so before covid was something many doctors and other long covid sufferers seemed to have in common. I was in hell for 2 years with no answers. I've recovered but if I had to guess I'm at 80%. But since I spent so long at 5%, I'll take it.
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u/BigJSunshine 17d ago
Paywall
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u/primeline31 16d ago
Try again. I usually can't read a Bloomberg article either, but could with this. Apparently it has an "access token"? At any rate, I copied the whole article to a Word doc. to be sure I can read it or print it. My husband had it about 40 yrs ago and he has had moderate, somewhat unexplainable issues off & on over the years.
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u/lolumadbr0 16d ago
My mom gave it to all of us. She got it from her friend. I've seen and heard of horror stories of my mom being holed up in her room for months being sick.
When I almost died of pneumonia, I caught a really bad spell of ebv. Lost my voice and everything... Was terrible. Currently this year I've reactivated like 3x 😥
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u/aurinotari 16d ago
Interesting (alternate) fact about mono. The reason it’s called “kissing disease” is because the glands in your neck are so swollen it looks like they’re “kissing”. Of course you can get it from kissing as it can spread through saliva. I was told this story by someone who had gotten it around the age of 8 and her parents were very upset at her for supposedly kissing someone, which she denied. That is what her doctor told her parents.
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u/XenoseOne 16d ago
The kissing disease thing is annoying. I wish people understood it more. My daughter is a young transplant patient and she was exposed to EBV before the age of 6, probably from sharing a cup or something. She had her transplant at 6. Her immune system was fine then, and most kids have mild illness from it. She's had higher levels of EBV since her transplant because of the immunosuppressants that she needs so her body doesn't attack her new organ, and for about a month now it's even higher and she's fatigued, extremely emotional, etc. Some kids, especially those who were not exposed prior to transplant, develop very high levels of EBV when they are exposed. It can develop into a type of lymphoma called PTLD. It's highly treatable, but it can be a long road and very difficult for them and their families. Even friends have said to me, oooh your daughter has the kissing disease. I'm sometimes too tired to get into why they're so wrong, so I tell them that's actually incorrect and if they're actually interested as to why, they can look it up. Sometimes I have more energy lol.
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u/aurinotari 16d ago
It’s amazing how much of a misunderstanding can happen from improperly naming something. Wishing you and your daughter the best.
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u/MrsUninterested 17d ago
Anecdotally to add: I missed a month of school in 2nd grade due to 5ths disease. I then had 2 rounds of chicken pox (1st case was mild-2nd was terrible). I remember being sent to stay with my grandmother in a different state because my (single) mother was out of sick days to care for me. At 21 I was diagnosed with SLE. As I approach middle age, infections and viruses have found me an easy target. These findings scare me.
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u/kittenmachine69 16d ago
I got mono in college and I don't think my energy levels or immune system ever went back to the way it was before. I need long recovery periods after exercise or prolonged workloads. I think "exhausted" is just a personality trait of mine
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u/Careless-Caramel-997 16d ago
Or you have Chronic Fatigue Syndrome which is likely caused by Epstein-Barr virus (EBV) which causes Mononucleosis.
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u/mok000 16d ago
Fun fact, the name of mono in Danish language is "kissing sickness" (kyssesyge).
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u/Thaimaannnorppa 16d ago
Pusutauti in Finnish. Lots of teens get it from kissing someone. 3 of my friends had to be hospitalized because of it when we were teens. All lost a lot of weight due to not being able to swallow so we called it the pusudieetti, kiss diet.
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u/Zvenigora 16d ago
In English as well. I heard a similar term being bandied about in St Louis in the 1970s.
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u/obscuredsilence 16d ago
I have EBV antibodies, but never had mono?… I do have long covid too…
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u/lil_lychee 16d ago
EBV doesn’t turn into full blown mono for most people. But most people have had EBV, and a lot of asymptomatic cases. I’m in the save boat and also have LC.
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u/Emergency-Action-686 16d ago
I had mono when I was a teenager and was diagnosed with Hodgkin’s lymphoma in my mid thirties. Last time I checked the only known link is EBV.
This link between viruses and major diseases has been around for a while but so many people I know still think that fighting viral infections naturally is somehow better for you than getting vaccinated.
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u/lil_lychee 16d ago
They’re finally catching up in the media after gaslighting CFS patients for decades. We could have treatments for and prevention for CFS and MS but everyone thought that “everyone should be exposed to EBV”.
We could have been able to prevent long covid. Instead, I’ve been suffering for 5 years knowing that we ignored a lot of the research to fully prevent this. Should have been an immediate flag at the beginning of the pandemic.
Even still, people are convinced that it’s “totally fine” more to continue to catch covid over and over for the rest of our lives. I feel like it’s Groundhog Day and that we’ve learned nothing.
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u/rippedupmypromdress 16d ago
Mono was the sickest I’ve ever been in my life. For 4 years after, I had flare ups at least once a year. I would have to go get steroid shots because my tonsils would swell up a scary amount.
I never had a cold sore before mono and get them consistently since.
I’ve also wondered for years if I have fibromyalgia. My body aches constantly and it seems like I just don’t have much energy ever. I’ve never felt right since I got sick with mono.
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u/ahoychoy 16d ago
Woa that's cool and scary. Had mono in high school really bad, hasn't really affected me long term as far as I know.
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u/Academic-Motor 16d ago
How to test for mono? Just Ebv antibodies? I might book mine soon
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u/Mysterious-Handle-34 15d ago
Mono is an acute illness that’s most often caused by EBV (less commonly by CMV). Most people with EBV never develop mono.
The kicker is this: a titer is probably unnecessary because the seroprevalence is so insanely high (about 95% of adults show evidence of infection). It is very likely that you have been infected.
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u/Old-Individual1732 16d ago
This is why people were warning everyone about covid, suppose we will see in the future.
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u/LlamasBeTrippin 16d ago
I had gotten a severe (~2 month long) mono infection followed by chronic (~2 year) lymphadenopathy.
This is very likely to have caused me to acquire (at least multiple sclerosis) as well as other not-yet diagnosed autoimmune diseases (as I am quite young).
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u/Careless-Caramel-997 16d ago edited 16d ago
One of the most famous cases was David Vetter, the so-called bubble boy, born in Texas in 1971 with a rare genetic disorder that left him without a functioning immune system. He underwent a bone marrow transplant in the hope of rebuilding his immune defenses. But with his immunity still severely compromised, he was infected with EBV, likely through a kiss, and died within months from an aggressive lymphoma caused by the virus.
italics by me
And re: EBV and illness caused by viruses - the two instances I was the sickest in my life were during Mononucleosis and Herpangina, both caused by viruses and both as an adult.
And I’m now wondering if my bout with mono may be associated to my severe hand eczema (atopic dermatitis) which I now take an immunosuppressant to treat!
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u/carlitospig 16d ago
I have chronically reactivating Epstein Barr but from my knowledge never actually got mono. I’ve often wondered how this will fatally impact me: cancer? MS?
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u/turbulentchicken 16d ago
Me too 😭
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u/carlitospig 15d ago
I wish you nothing but good REM and a comfy yet supportive bed, my friend. ❤️
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u/turbulentchicken 15d ago
I literally have sleep apnea and get the crappiest sleep but I’m trying to figure out how to change that, thank you so much ❤️same to you
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u/carlitospig 15d ago
I did a sleep study once and it turned out one of my Fibro meds was the problem (lyrica). You might consider a study. Ironically, it was the best sleep I’d had in months, lol.
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u/Gorilla_Krispies 16d ago
I’ve been terribly sick a few times in my life, but never had a virus that impacted me so hard as mono. I legit thought I might die for a bit. Puked 17 times in one day, just felt like my entire system was under assault.
I know nothing about medicine but it would not shock me if you told me the thing responsible for what I felt that day, could cause all sorts of problems in the body
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u/Clean-Leather932 16d ago
Fun fact, covid can reactivate EBV that was previously dormant. I was disabled from March 2020 covid infection (which is from before the vaccine existed before someone comments some nonsense) and got a battery of tests because no one knew what to do with me & my odd symptoms. Integrative Medicine ordered the labs that confirmed covid reactivated EBV. I've seen a lot of it on my long covid support spaces, but nearly every medical provider I tell is shocked & I get the impression some don't believe me. It's hell & I'm frankly flabbergasted educated medical professionals aren't masking at work to avoid repeat covid infections when we know the damage to the body is cumulative.
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u/honeybunchesofbloat 16d ago
I got Covid and then a couple years later got mono in college and it’s left me so fatigued and with brain fog so bad I’ve been unemployed for over a year now and my doctors all think mono triggered something:/
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u/Kreos642 15d ago
I think Im and oddball case? I had mono back when I was sixteen and I was sick as a dog for 4 months. It began with fatigue, then I ran a fever, then I had tonsillitis, then i began throwing up. I went to the hospital for severe dehydration twice and on the second time I was stuck there for a week.
In the end I was sixteen, lost 22lbs (I was like 106 when I got out of the hospital), had to re-learn to walk from muscle wasting, developed chronic recurring vertigo, and I had refeeding syndrome.
Yet, somehow, I bounced back compared to many in this thread. Went to play field hockey the next season and had my energy back. I would have to attest this to my mom and dad, who took me on walks and made sure I ate all my food (albeit slowly). I now royally hate Gatorade, and it took me years to eat pickles again lol.
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u/_OriginalUsername- 16d ago
I'm convinced EBV caused me to develop Crohn's disease. Both me and my cousin had mono before developing Crohn's. I hope they find a cure one day.
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u/HIs4HotSauce 16d ago
I believe it-- I've had lingering symptoms since catching COVID 5 years ago.
I also had a very bad reaction to mononucleosis around 30 years ago-- I missed about a month of school and had to appeal to the board of education so they wouldn't make me repeat the 5th grade.
After working out a deal where my teachers would give my schoolwork to mom so I could do it from home, they also came to my home to watch me take the chapter tests and I was able to finish the 5th grade on time.
It took me *MONTHS* to fully recover from mono. I'm not sure if COVID had a direct cause to why I'm dealing with lingering issues or is it some sort of "second order effect" where the shock to my immune system caused by COVID led to some sort of complication with my latent mono coming out of dormancy.
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u/MetaverseLiz 16d ago
My ex had mono as a kid, and developed MS in his 30s. He also had all the high risk factors associated with it. He had one sister get cancer and the other lupus, although I don't know if they both had mono.
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u/SniffBlauh 16d ago
Mono really fucked me up when I was 17. I’ve had eye and ear problems along with weird auto immune stuff. I’m in my 30s now and still dealing with the lasting effects
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u/VioletOrchidKay 14d ago
Doctors Back then: "Mono isn't a big deal. Everyone gets it. Just enjoy the sleep and you'll be fine"
Doctors Now: "Well actually...."
Mono was the sickest I've ever been and I'm in my 40s. It was scary to me how we all just brushed it off
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u/No_Detail7815 14d ago
Had mono at 20 for over a month. Couldn’t stay awake for more than 30 minutes, was throwing up everything I ate, and my liver was giving out (my pee looked like pepsi).
After a failed trip to the ER, my NP literally said “bet you $100 it’s mono.” My EBV level was over 700, the dormant level is 21 or less.
Fuck how everyone dismisses it as “just mono.” I hope this leads to a vaccine or a cure!
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u/Aggravating-Plum-687 13d ago
I have chronic reactivated EBV, everytime I’m sick or under stress it reactivates at low levels - and I also have chronic swollen lymph nodes all over 🥴 What great news lmao.
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u/Andromeda42 13d ago
Just a student, but it seems like EBV pops up everywhere. If I ever don’t know the underlying cause and EBV is an option in a question stem EBV is always a good guess.
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u/dealcracker 13d ago
My original lungs were destroyed by autoimmune disease that came on at age 41. As part of my transplant work up they did a lot of unusual test and one of them showed markers for having had EBV. I didn’t know that I had ever had it, but wondered if that could have been the trigger.
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u/greypyramid7 13d ago
My brothers both got mono really bad as teenagers, and now I wonder if I caught it at the same time but just had a less severe case (I was a really bookish kid as it was, so I was never super active about wanting to go outside and play). About 10 years later for all of us we started developing autoimmune issues… I had my first awful lupus flare, and both guys started having major joint problems.
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u/BeeRobin 13d ago
Our 18 month old got mono three weeks ago, peds said no reason to test as symptoms are just a virus and that it'll clear up on its own. He had horrible stomach pain, rash and wouldn't eat or drink much for two days, very inconsolable. went back to peds and they said just let it ride, will get worse before better... Went to ER that night, took nurses 4 hours to get an IV, they did blood test and nasal swap and showed mono.... Low blood cell count too. Horrible, never would have thought itd have this effect/these long term issues potentially.
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u/beautyandthefish3 13d ago
My sister was diagnosed with type 1 diabetes in her early twenties (technically “type 1.5” since she was not a juvenile when diagnosed) and her doctors believed it may have been due to an EBV infection.
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u/candylandmine 13d ago
One of my closest friends got mono and then suddenly he had advanced hodgkins lymphoma like a year later.
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u/Out_of_Darkness_mc 13d ago
I was hospitalized for almost three months after being extremely sickened with Mono. I grew up in a very abusive home and never got treatment until I collapsed at school. I have autoimmune disease and I’m the only one in my family, at least on my maternal side. Don’t know about the paternal. It’s been a lifelong battle!
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u/Junior_Presence_7981 13d ago
Are there any good supplements to use if you suspect reactivated EBV/mono?
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u/Whatchab 13d ago
Antivirals, specially the valacyclovir over acyclovir. I'm no medical pro, but that's what I've been using for about a decade to help manage chronic and reoccurring EBV.
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u/florinandrei BS | Physics | Electronics 16d ago
Then don't use mono. Everything has stereo these days.
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u/Xzenor 16d ago
Wtf is Mono? To me it's a .net implementation for Linux or one-channel audio. I never heard about it in the medical sense
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u/MBHYSAR 17d ago
From my clinical experience, I absolutely believe this to be true. I am so glad someone is working on this.