I have MS and my first relapse was a pretty textbook case of transverse myelitis of the sort that the EBV can cause.
I know some people have been asking about why that might be the case when a ton of people have EBV, and I think the causality may go the other way: Those of us with something wrong are more likely to both have EBV complications and MS.
There are other viruses like this as well (ones that most people get/have but aren't dangerous). I was on one medication where I needed to be tested monthly because if I got one particular (normally harmless) virus, the suppression caused by the medication meant I would probably die.
There's pretty clearly some sort of relation between the state of one's immune system + how it deals with 'benign' viruses + auto-immunity, and I'm excited to see what the future holds, but for now it's a cool confirmation of something a lot of MSers have talked about amongst ourselves for a while.
> I think the causality may go the other way: Those of us with something wrong are more likely to both have EBV complications and MS.
I'm unsure, but it sounds like you're hypothesizing that EBV infections does not cause MS symptoms, and that instead some some third factor causes both, so that preventing EBV infection would not prevent MS. The paper being discussed specifically considers and rejects this possibility with pretty strong evidence. Indeed, that is the main contribution of the paper. (The fact that 99% of MS sufferers have EBV, way higher than the 90% baseline in the general population, has been known for a while.)
All MS suffer-ers have low VitD.(as does just about everyone with an autoimmune issue).
They all have low uric acid too.
Almost all MS sufferers (same more most autoimmune) can also trace their disorder back to an extreme stress event too - divorce, loss of a loved one, falling into health anxiety, etc..
> There are other viruses like this as well (ones that most people get/have but aren't dangerous). I was on one medication where I needed to be tested monthly because if I got one particular (normally harmless) virus, the suppression caused by the medication meant I would probably die.
For those curious, I’m going to guess and say this might’ve been Tysabri (natalizumab) and that the virus in question is JCV (John Cunningham virus). After approximately two years on Tysabri, people who test positive for JCV antibodies (approx half the population of the US) have an extremely high chance of developing an often-fatal brain infection called PML (Progressive Multifocal Leukoencephalopathy).
Tysabri was originally pulled by the FDA due to PML deaths back in the early 2000s, but later got reapproved after the link to JCV was discovered. Nowadays patients get tested for JCV antibodies every 6 months. The treatment is considered quite safe now, with the caveat that if you test positive you cannot get Tysabri anymore. Most people don’t switch from negative to positive, but it happens occasionally.
Source: my wife has a rare form of MS and has been on Tysabri for about 5 years now, relapse free. Modern MS drugs are a scientific marvel.
Confirm. My brother is was on Tysabri for more than 5 and recently got confirmation of JCV. The checkup is however more regular. Blood test + MRI + symptoms check every three months, as if done less regularly would increase massively the risk. If JCV flare up is detected they’ll need to flush/wash the Tysabri away from his bloodstream.
He also got a severe mononucleosis infection before being diagnosed, and at that time we all thought that could have been the cause.
To be fair: I have MS. I've never had EBV with symptoms that I know of - which is absolutely normal. When folks catch it as children, there are generally zero to no symptoms. And I'm not alone, judging by activity on MS related sites.
I wouldn't take the word of "a lot of MSers" - I mean, there are folks that push the scam WAHLS protocol (diet) as a cure, too. Unless the folks are researchers, an MSer's thoughts about what causes the disease are often just as baseless as a non-MSer.
Well said. I said the immune system should be to blame in the previous thread and was downvoted to hell. But it’s true. What’s more, it’s highly under appreciated that the immune system is extremely ancient and it does a lot more than the typical things associated with it like destroying tissue. It pulls deep metabolic levers that can make critical cells, including brain cells, latent. It can do many amazing things. In the future, the immune system won’t be known for immunity — it will be known as something like the second nervous system and will be associated with the nth great wave of medical progress when we finally conquer it and all the hundreds of diseases it causes. Diseases we don’t even have a name for now, I know for a fact.
I think even if we find some markers it won’t be enough. It will take a full blown revolution in how we measure human anatomy in a clinical setting. That’s why it’s taken so long.
I know some people have been asking about why that might be the case when a ton of people have EBV, and I think the causality may go the other way: Those of us with something wrong are more likely to both have EBV complications and MS.
There are other viruses like this as well (ones that most people get/have but aren't dangerous). I was on one medication where I needed to be tested monthly because if I got one particular (normally harmless) virus, the suppression caused by the medication meant I would probably die.
There's pretty clearly some sort of relation between the state of one's immune system + how it deals with 'benign' viruses + auto-immunity, and I'm excited to see what the future holds, but for now it's a cool confirmation of something a lot of MSers have talked about amongst ourselves for a while.