17 ms·

Terrifying - I was EBV positive 4 years ago. It does not mention an association between EBV severity and MS, but I was very symptomatic and had post viral fatig

• MaximumYComb 5y ago
  Wow, I was also EBV positive ~4 years ago (45 months), was symptomatic and I had post viral fatigue for around a year. It was 12 months before I could do light physical training and it was around 2.5 years before I could train physically at high intensity.
  • csdvrx 5y ago
    Do you have a baseline to compare or are you only relying on your memory? I got it at 21 and now I fear I may operate at a lower overall potential since I don't have a baseline to compare to
• peter303 5y ago
  Possibly a co-factor, since many get EBV and few MS.
• cjensen 5y ago
  EBV causes more severe symptoms the older you are. So everyone here who remembers getting it and it being terrible? That's because you got it as an adult. If you get it as a kid, it can be asymptomatic. I got it at 36 and had a fever that leveled me for 3 weeks. Between "wait 1 week before bothering your doctor" and multiple rounds of tests, they didn't even diagnose it as EBV until the 3rd week.
  • csdvrx 5y ago
    I got at 21 IIRC and I was in bed for a few weeks and the doctor started fearing I had a blood cancer or something given how abnormal the tests were until he finally got the idea to test for EBV and it came back super positive. Never before was I so happy to get tested positive for something lol It's been a few years and I think I'm fine but due to hedonic adaptation etc maybe for all I know I operate at like 70% of my previous capacity and don't even realize it So I'm super interested in all that new research and I can't wait until we get mRNA vaccines against EBV!!
• arbuge 5y ago
  Calm down... from the article: "Note, though, that EBV would then be in the "necessary but not sufficient" category. There's something about the interaction of particular human immune systems with EBV infection that pushes things over into the pathological state of multiple sclerosis, and we don't really know how to identify these people. But that fits with what we know about infectious disease in general - everyone's different. The situation with Guillian-Barré is similar - a small number of people tip over into neurological pathology, for reasons unknown, and that one also often seems to follow some sort of viral infection."
  • jka 5y ago
    That's a good quote, thank you. About the use of "calm down" as an instruction: while your sentiment is good (to reduce another person's anxiety), it's not always possible for someone to follow that when it is received as an instruction. It's tricky to estimate other people's emotional state based on text, and for them to infer your tone. I'm overexplaining and sure that you probably understand all that; but it feels worth mentioning.
    • jonnycomputer 5y ago
      True. My first reaction to the directive, was that it was rude. Reading more of the context attenuated that impression, but I still think it could have been phrased less ... paternalistically?
      • jka 5y ago
        You could be onto something there, yep.
        • jonnycomputer 5y ago
          Communication is hard.
          • jka 5y ago
• lalaland1125 5y ago
  One important thing to note is that EBV is extremely prevalent. Almost everyone gets it eventually and very few of those people develop MS.
  • jonnycomputer 5y ago
    But a lot of people don't really develop severe symptoms either, right?
    • marvin 5y ago
      When I had it, my doctor said that if I was a professional athlete, the standard outcome would be to just consider the current season lost and switch focus to getting well again in time for the next. I was relatively useless for two weeks and then spent the next four months getting back to my normal energy levels. "Severe" is a question of definitions, I think. I wouldn't consider that kind of illness severe, but it certainly put a dent in things for a while. Properly inconvenient, I'd say. I think this degree is pretty common.
    • cestith 5y ago
      Some develop no noticeable symptoms and many develop mainly annoying ones for a few weeks to a few months. I had the misfortune to develop symptoms from infectious mononucleosis shortly after minor surgery. My GP and surgeon kept giving me antibiotics and sending me back to uni. Finally after several months of fatigue, nausea, and depressed appetite I wandered into campus health jaundiced with a 104º F fever and a temporarily enlarged liver. I ended up withdrawing from that semester and retroactively from the previous one. I was ordered into a month of bedrest and half a year of decreased physical activity while recovering. So I guess we could say there's a wide range of severity, partly depending on how soon it's addressed.
    • Broken_Hippo 5y ago
      Many if not most folks dont' even realize they get it because they catch EBV as a child. In children, it generally causes no symptoms or symptoms so mild that they are dismissed as a normal childhood virus. You know, the sort you miss 2 days of school for and then go on. This is the reason most folks don't know they've had it. When we get older - teens and adults -, we are more likely to have it develop into mono or other things that realistically make your life difficult for a while.
• nefitty 5y ago
  The article says EBV is prevalent and is probably necessary but not sufficient for MS. If I was in that position I would look at my gene test results for any markers that correlate with MS. The more of those markers, the more intensely I would prioritize following relevant interventions.
  • nradov 5y ago
    What are the relevant interventions? Which genes correlate with MS?
    • nefitty 5y ago
      That's the independent study part. I wish I could be more help but that research is time and money intensive, and not guaranteed to be fruitful. It also involves review of multiple studies, sometimes several dozen. Then it's about seeing which ones are relevant to an individual's specific genetic mutations. I'm currently going through dozens of reports from SelfDecode, and that's after massive amounts of work on their end. I think I'm out a few hundred bucks so far, but it is an amazing service. I will soon seek their genetic consultation service, which is about $1k, and their lab testing service.
      • mwint 5y ago
        Genuinely curious, what's your ultimate goal here? What do you optimize for? Total life-years, sum quality-of-life, etc.? Seems like picking out the diseases you don't want to get/die from is a way to go nuts; curious how you're thinking about this.
        • nefitty 5y ago
          I did accidentally traumatize myself by focusing on one marker that basically said "You have an increased risk for degenerative disease x". I had a full-blown psychosomatic attack, and I convinced myself that I was going to die in 5 years. After I calmed down I realized it was probably anxiety. I learned a little bit more about statistics in medicine and realized that my layman's understanding of chance is probably way different than what genetic markers point at (I have no idea what the actual numbers are, but maybe they consider 1 in a million an increased risk, for example). My ultimate goal is to address some weird ADHD-style issues and an autoimmune disease, holistically. When I go to a stomach doctor he gives me stuff for my stomach, but never asks about how my brain feels, about fatigue, about my skin, etc. I don't blame doctors for specialization. I've given up on expecting them to be able to "fix my car". That would be silly to ask of an actual mechanic. What I'm doing instead is studying, tweaking and fixing what I can through lifestyle and careful supplementation. Basically, I'm starting with filling the tires with air, changing the oil, etc. Then once I realize my car is still violently wobbling, I'll have a list of what I've fixed myself, and the mechanic can focus on more complex wobble factors.
• deleted 5y ago
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• garganzol 5y ago
  There is one more condition you may be interested in: CFS/ME. It manifests itself primarily as a chronic fatigue and is believed to onset after a trigger event: virus, intoxication, hypoxia, stress, and the like. I talked to some people with MS and most of them told me the same story: the trigger event, followed by some time, then onset of a full-blown MS. I wonder: are those diseases really different? Or maybe this is the very same disease but with a bit different outcomes: myalgic encephalopathy vs sclerous plaques. Both are driven by the inflammation, both have the same initiating sequence. What leads me to strongly suspect that it may be just different manifestations of the same disease is the involvement of mitochondria in both MS and CFS/ME.
  • radicalbyte 5y ago
    I have this pet theory that CFS/ME is what a lot of long-covid patients are suffering. I knew a few people who have been affected by it, and it really limits them. Just as long-covid seems to.
    • garganzol 5y ago
      I came to the same conclusion as well. Moreover, I was somewhat successful in healing post-viral CFS/ME using the therapy targeted at mitochondria with large doses of B1 and B3 vitamins [1]. [1] https://news.ycombinator.com/item?id=29138006 https://news.ycombinator.com/item?id=29138006
      • PaulKeeble 5y ago
        Its worth noting that 80% of those the develop post viral conditions just recover, we don't know why. It is unlikely your intervention is the reason you recovered, the majority of people do even if they do nothing at all. We do know that those that rest and stay below their energy budget have a better chance but that is about it, nothing else has shown efficacy.
        • garganzol 5y ago
          Intervention was only applied to people who did not recover by themselves. But almost all of them recovered after intervention which leads me to believe that we are onto something here.
• danuker 5y ago
  > According to epidemiological studies, the EBV is estimated to be positive in more than 90% of the world's populations - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6008310/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6008310/ > A total of 2.8 million people are estimated to live with MS worldwide (35.9 per 100,000 population) - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7720355/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7720355/ Given that you have EBV, I guess you're in the unlucky 90%, increasing your odds from 359 in a million to a ...whopping... 399 in a million.
  • BobbyJo 5y ago
    Since the risk for the non-EBV group is 32x less, you'd be increasing your odds from like 11 in a million to 399 in a million no?
    • andi999 5y ago
      If you knew you were negative yes, if the status was unknown then not.
• f38zf5vdt 5y ago
  If you're going to develop MS as an adult after getting EBV mononucleosis, it's likely that it will be soon (5-10 years) after you have the initial infection as an adult. There's only a long delay in children according to one study. [1] Every passing year the probability of getting MS should decay after that. Female sex and EBV mononucleosis during adolescence are the biggest risk factors. [1] https://nn.neurology.org/content/4/3/e308 https://nn.neurology.org/content/4/3/e308
  • config_yml 5y ago
    Interesting. My sister and I both had mononucleosis before puberty, and she was diagnosed with MS in her late twenties.
  • Broken_Hippo 5y ago
    Scores of folks with MS never had mono. I'm one of those. It isn't mono that is the risk factor, but EBV itself.
• deleted 5y ago
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• Severian 5y ago
  Found this in my news feed, so this timely. Good news I guess! https://www.forbes.com/sites/roberthart/2022/01/14/moderna-starts-human-trials-of-mrna-vaccine-for-virus-that-likely-causes-multiple-sclerosis/ https://www.forbes.com/sites/roberthart/2022/01/14/moderna-s...
  • Miner49er 5y ago
    Is there any evidence that the vaccine wouldn't also cause MS? From my understanding, MS is caused by the immune response, and the vaccine would trigger a similar (or same?) immune response.
• shadowgovt 5y ago
  If you're EBV-positive, you're in good company... It infects something like 90% of the human population. Makes me wonder how many virii are out there that haven't been identified by modern medicine because their spread vector is so low-impact that they never even trigger symptoms. A virus like that would become real indistinguishable from "behavior of the human body" in not very much time if its infectivity was high.
  • bigbillheck 5y ago
    There's the anelloviruses which are at least as prevalent and nobody really knows what they do.
  • csdvrx 5y ago
    > A virus like that would become real indistinguishable from "behavior of the human body" in not very much time if its infectivity was high. My weird theory: how can we know then if aging (or its acceleration or the diseases usually linked to it) isn't the result of some infection that's super contagious and infects 100% of the people,
    • raylad 5y ago
      It's not weird, it's the same idea I had back in the 1970s, but at that time things like retroviruses weren't known or understood. Now we know about endogenous retroviruses, and yes, they have infected everyone (going back millions of years) and yes, they do become more active in aging and are responsible for cancers and causing cellular senescence via DNA damage through retrotransposon activity. You can inhibit them with some of the same anti-retrovirals that work on HIV. Or nutritionally what may work is: high doses of cyanidin plus NAD precursors to stimulate SIRT6, which normally prevents at least one of these endogenous retroviruses, LINE1, from being expressed.
      • csdvrx 5y ago
        Super interesting. Please tell me more, like what you are taking besides that. I find it especially interesting how some multicellular macro organisms like jellyfish (one of the oldest ancestor of all non insect animals) have no aging, while humans and most other animals do. Could it be that their immune system or simply their evolutionary path prevented them from being exposed to such endoviruses, that may simply be too omnipresent (or long integrated) in about every other species to be selected out? (They could also present an advantage at the population scale, by ensuring a quick turnover and therefore more genetic evolution simply by filtering out not just the unadvantageous gene but the older adults, thus offering more opportunities for the new generation to replace them faster) This could be supported if jellyfish had less requirements for evolution, like a stable ecological niche - something I have no idea about!
• RspecMAuthortah 5y ago
  How do you even test for EBV? The GP I asked laughed it off when I was living in Canada basically saying I am already positive and no need to test.
  • currency 5y ago
    This was a study conducted by the military on soldiers. They all contributed three blood samples over a period of time that were tested for a large number of conditions. EBV was the only one that contributed to MS.
  • epgui 5y ago
    You can test for pretty much anything in a research setting. In a clinical setting, doctors will rely a lot on heuristics and practical considerations, and there may not be any clinical testing available.
    • bluGill 5y ago
      Even if there is a test, sometimes it is insanely expensive and so they won't give it if they can find any other way to decide.
  • cestith 5y ago
    There are at least two tests for it, or at least there were in the mid 1990s. One's a quick clinical test with lots of false negatives than can be done in-office but unless it's a campus healthcare clinic at a university they probably don't bother. The other is a more sensitive lab test that takes a few days. If you're having a really serious set of symptoms they may test to confirm it's not something else. If it's a minor case, two weeks of bedrest fix a lot of issues in a young adult and you do probably already have it anyway.
  • rmind 5y ago
    If you want to test whether you already had EBV, then it would be a test for Immunoglobulin G (IgG) antibodies to the EBV viral capsid antigen (VCA). It shows whether the virus has established the latency in your body. Most laboratories would just label it as "EBV IgG", so just ask for that. If you are in your 30 or older, then you most likely have had it already.