I'm on Ocrelizumab for MS, which wipes out memory B Cells. EBV lives in these cells. Ironically I'm sitting here at the cancer center now getting my semiannual infusion. Anecdotally this drug has made my day-to-day much easier.
Fun fact, Tysabri was withdrawn from the market when some cases of a rare cancer were reported. It was introduced back only after lobbying by patient groups who insisted they’d take the small risk for the amazing QOL improvement from this drug.
Right? 10 or 15 years ago there were litterally no drugs that changed the course of MS. But then Tysabri came along and suddenly things changed for RRMS. And now Ocrelizumab seems to work for both RR and progressive MS. It IS some kind of miracle.
I wish I could be on Ocrelizumab, but it's hard to get it covered because (ironically) I've been lucky and had next to no disease progression in the 6 years since I was diagnosed (8 since triggering relapse). I'd like to keep it that way...
I've been living with MS for almost 15 years and still doing very well. However about three years ago everything went wrong and I got on O as soon as I could.
It's been amazing. Wish they had it a long time ago.
That’s not how anti-cd20 bcell depleters work. It kills mature bcells but leaves intact your adult mature plasma cells and thus your immunological memory. Your vaccinations and other immunities acquired prior to starting on bcell depleters remain intact, it’s producing future responses to new pathogens that is blunted.
I'm not on O, but on another drug for MS (fingolimod), and can almost promise they aren't getting vaccinated twice a year.
First, some of the vaccines are simply dangerous as some are live vaccines. I cannot take some travel vaccines because of this: The risk of me simply catching the disease is too great. Same for their drug.
Second, there is some concern about the effectiveness of the vaccines. For example, the covid vaccine: I wound up with an extra booster because they weren't sure how well I was protected. And this can be the case with other vaccines: You might not get the same sort of protection out of it.
The outcome is generally that it isn't worth it to revaccinate folks. And for myself: It isn't that I'm unprotected completely. My immune system is just... hampered. I think the infusions cause more of an issue, but again, isn't worth the revaccination.
I had to get the shingles vax just before I got on O due to reactivation risk despite being way too young.
I got COVID vaccine and while I had a symptomatic reaction, the results of my antibody tests were concerning. I had my antibodies checked at LabCorp (forget exactly which protein they checked for) and my antibody count was something like 20, while my wife (as the control) had around 12,000.
Some of the most recent research suggests even though the antibody levels are low, there is a good T Cell response still.
You don't lose any immunity you already had, but any potential future immunity is likely blunted.
Fluoroquinolone antibiotics, like ciprofloxacin, are well documented to cause permanent nerve damage (and chronic fatigue). One of the symptoms/causes is demyelination of the nerves. Similarly in MS, as the article states:
> Myelin is the very thing that is destroyed in MS
While it seems unlikely that FQ nerve damage is caused by the immune system attacking its own nerve cells, the mechanism by which these antibiotics cause nerve damage is unknown. This makes them higher risk to take, because your doctor has no idea what to look for to make sure you don't get nerve damage. Most doctors aren't even aware of the link, the FDA forced manufacturers to add permanent neuropathy as a black box warning to the drugs, long after most doctors learned about them in medical school.
If two conditions lead to the same outcome, I wonder if there's any utility in looking for links, either in treatment or prevention, between them.
Fluoroquinolones are also completely contraindicated in patients with connective issue disorders (e.g. Marfan, EDS, Loeys-Dietz.) It can lead to organ rupture, torn arteries, aneurysms etc. CTDs often remain undiagnosed for a long time, so a small percentage of the population are ticking time bombs for this interaction.
I have EDS, and cipro spooked me so I didn't fill my Rx for it in college. If I had I'd likely be even more disabled than I already am.
This seems to be a common thread, my wife's EDS diagnosis took more than a decade. It's a straightforward and obvious physical ailment. Even after her diagnosis she ran into problems - she once had to leave an ER without treatment for an unrelated problem, because the attending refused to treat her until she admitted that she was lying about her diagnosis. Hearing her stories and seeing first-hand how her medical interactions go has really shaken my faith in the medical system.
EDS has a bizarre stigma attached to it for some reason. I'm pretty noticeable (I can fully dislocate my shoulders, for example), so I was immediately diagnosed with HSD, and finally with hEDS a year later. I haven't had issues with doctors since that, but I got treated terribly in the interim.
I've heard that MS was stigmatized like that before the neurology was appreciated. But EDS has one of the highest disability-to-stigma ratios of any disorder I've known. It gave me a spinal cord injury, for Pete's sake.
I think it unfortunately boils down to externalized shame from MDs who can't admit they don't know something, mixed with old biases about neurotic women who make up ailments. Nearly all medical knowledge is based on rote memorization in med school and received tribal wisdom during residency. MDs aren't given the time and mental space to really sort out which things are true and which are superstition while they are in training.
Ideally the check from a knowledge perspective is CMEs and a separate group of medical researchers that inform med school curriculum, but there is no real check on the eye-rolling and "oh, you have to deal with one of THOSE" that they are exposed to during residency.
This is how a number of cell / animal models of diseases are done. For example DSS induced colitis in mice.
Pharmacogenomics is a thing. There are companies out there that do PGx testing. The problem is that frontline clinicians mostly haven’t adopted / integrated it into their practices.
This is such a fascinating area of research. I think it's increasingly clear that there is a common thread tying together conditions like long-COVID, MS and chronic fatigue syndrome - a long-running and persistent viral infection leading to a chronic immuno-inflammatory response. Other seemingly unlikely diseases such as Alzheimers, depression and even schizophrenia may may have neuro-inflammatory origins too.
This article hints that the persistence of the Epstein-Barr virus might be causing the chronic inflammation. But I wonder if it could instead be due to some sort of non-linear process in the immune-response that causes our immune system to enter a positive feedback loop when it's activated for too long or in a certain way. And perhaps the therapy for this would be to suppress the immune system for some period of time to allow it to abort this feedback loop, perhaps something like this: https://www.healthline.com/health-news/patients-resorting-to...
I know that Tanina Agosto‘s story is not the main content of the article, but it makes me incredibly angry.
The idea that someone lives in a supposedly developed country , has very worrying neurological symptomps and is not seen by a doctor for months is barbaric. The fact that she literally works in a hospital is an extra layer of insult on top of this.
Surely the story has been inaccurately recounted, as picking a pinched nerve, then recommending chiropractic treatment for a patient with a lack of sensation on one side of the body seems unlikely from anyone with any medical knowledge.
I didn't read the article. But my friend here in London couldn't get past GP with half of her body losing sensation. It took a LOT of pressure from her husband to get to see somebody relevant.
It turned out to be quite serious but healable given timely help. Most people would just give up until much more problematic symptoms develop.
It is your health; I don’t know about the US but in NL UK ES PT you have to apply yourself to get attention but then you do; I get help fast whatever I have because I am not taking no for an answer; people who do, well, it is your health; it is not exactly ok to just walk out when you are in trouble. You push and don’t leave until you get help. My gp did what Seinfeld George wanted; go away it’s not cancer; it was cancer and I knew it but you have to get aggressive to get attention in many places as most people go to their doctor for a chat because they need to (which, in an ideal world, is a reason to go as well by the way). People believe their gp is a smart person and knows things; they don’t; they are the gatekeepers: don’t listen to them, just get referred asap.
Why would you say that? Have you ever had to deal with either a not-well-known or not-often-believed-in disease? There are millions of people in the US who have to deal with this type of shit at every visit, and they are largely women and particularly women of color. There are journal articles describing some of it. It’s not at all uncommon. Having watched this type of thing happen to my wife, I highly doubt the story has been reported inaccurately. I now have to attend all of my wife’s doctor’s visits (even with female doctors) to ensure that doctors don’t dismiss her or her condition. And oddly enough, it happens significantly less frequently when I’m there. (Though it does still happen.)
I’m yet to come across a medical doctor who would recommend a chiropractor, but regularly encounter them dismissing that profession. Neck manipulations in particular.
I am well aware of minorities and women lacking equal access to healthcare, and it’s grim. If anyone wants some disheartening reading, your comment brought to mind to things: this was inflicted on women here in New Zealand.
And this was a recent report on Maori healthcare, finding that Maori face significant prejudice in their healthcare (see page 17 of the report for a summary).
https://waitangitribunal.govt.nz/news/tribunal/
The idea that someone lives in a supposedly developed country , has very worrying neurological symptomps and is not seen by a doctor for months is barbaric.
That's not what happened? She saw a doctor within a day, and was unfortunately misdiagnosed.
The 29-year-old couldn’t control her left side, even her face. “Literally the top of my head to the bottom of my foot on the left side of my body could not feel anything.” The next day, Agosto spoke with a doctor at the New York City hospital where she works as a medical secretary. He told her that she probably had a pinched nerve and to see a chiropractor.
“Spoke with a doctor” sounds like she had a chat with a coworker on a hallway. If that is not the case and she was properly examined then misdiagnosed then the journalist choose a misleading wording.
Australia? MS clinics around the country are free under Medicare, as is treatment. My friend is receiving twice annual infusions of Ocrelizumab. It literally costs them nothing.
I mean you can argue that Australia is a rich country, but it’s available to any citizen regardless of wealth.
Many if not most countries have preferred front-line treatments, usually decided by a combination of overall costs. These costs will include things like actual monetary cost, how closely you need to be monitored by your doctors (blood tests and stuff), how severe side effects are, how much the reduce disability in the long term, the ability of patients to stick with it and things like that.
Right. And some countries choose to have first-line treatments that prioritize lower cost over efficacy of therapy. It's great as a taxpayer, not so great at a patient.
That’s because people trust their gp; if you don’t, you get referred fast. At least where I have lived and I am on public healthcare; experience with NL ES PT UK BE; never have to wait for anything.
> Agosto spoke with a doctor at the New York City hospital where she works as a medical secretary. He told her that she probably had a pinched nerve and to see a chiropractor.
Amazing. Do New York City hospital doctors refer people to witch doctors and prescribe powdered tiger penis too?
My understanding of the evidence is that there is nothing for which chiropractic is the best available treatment, and for everything except lower back pain there is no evidence that it has any level of efficacy.
I have Klippel-Feil Syndrome, presenting with a forward- and right-rotated C5/6 block vertebra.
Not only is that rotation only treatable by a chiropractor, but specifically a Pierce chiropractor, trained in posterior to anterior adjustment is needed.
Otherwise the prognosis is, "You're going to be hunched over so severely you can't look anybody in the eyes by your mid-40s, and you won't be able to walk 20 years after that."
Definitely not trying to argue with you. Just suggesting there might be a whole range of niche things you're not aware of but do exist, and for which specific types of chiropractic manipulation of the positions of the vertebrae themselves is the only treatment.
As a long time chiro-goer, I've noticed that some chiropractors use the lower bar to entry "doctor" label to appear experts in other fields like nutrition or mental health. But one can obviously steer clear of those.
My chiropractor is a physical therapist, sports massage therapist and traditional chiropractor in one. Very often I NEED some spinal adjustments to give me the range of motion back to do the exercises they prescribe to improve my issues long term. The effect is immediate and obvious.
Those that claim it's pure quackery just don't need their services, or are too stubborn and would rather die in the "but it's not sufficiently peer reviewed!" hill than receive some relief for their musculoskeletal issues.
This is exactly right. Run far away from a chiropractor who claims to be able to treat anything other than muscloskeletal issues. Within their actual scope of practice, a chiropractor can sometimes work miracles. My mom goes to one frequently and it helps her immensely.
Your experience is a good reason for why we should never generalize. The common word is that chiropractics is a sham (and maybe there is truth to that) and then there is someone like you whose only options I assume is this treatment (and that is truthful as well)
It makes me think we shouldn’t be quick to judge if actually don’t work in the field or related.
Anyway I hope you have good results and a healthy outcome.
You can certainly generalize, and chiropractics is a sham, but if there is some placebo effect or it makes people happy then fine so long as people are well informed then they can choose to go to these quacks if they like. The problem is person having a serious and undiagnosed neurological problem is referred to a chiropractor by an alleged real medical doctor.
Would you feel the same way if a doctor referred a depressed person to see an astrologist or psychic medium or a church? You will easily find thousands of anecdotes from people attesting to those helping them, and you might even find they could statistically help some peoples' mental health whether by placebo or giving them someone to talk to or a group to be part of.
Did you read the parent comment I responded to? Here is someone who is specifically helped by chiropractics. So that it doesn’t work on let’s say 95% doesn’t mean that 5% gets a genuine improvement. The thing is just better knowledge of what chiropractics is useless for and when it makes a genuine difference.
Generalizing that all is a quack/placebo doesn’t help move us forward in such a case. The end conclusion is better information and dissemination to doctors and health practitioners so they know when to refer.
Yes I did, and I disagree with you. Did you read my comment? Anecdotes don't mean that you can't generalize the idea that medical professionals should not refer patients to quacks. If chiropractics has some placebo effect or other effect in some specific cases does not make it okay to refer this serious undiagnosed nerve problems to them, that's just ludicrous.
I don't like the idea of a doctor prescribing such quackery, but I think doctors sometimes tell patients what they want to hear when they don't think there's any real problem and the patient won't accept "suck it up and wait" as an answer.
I think you overestimate the medical profession. Just like every profession there are a few really amazing doctors, a huge number of competent, but otherwise unremarkable doctors and a bunch of doctors who practice substandard treatment.
There are two lines of evidence for EBV and MS, but both are uncertain:
1) Given ~1M vets, ~800 diagnosed with MS after having 2-3 blood samples taken. Of those, most without EBV exposure didn't get MS until they were exposed. MS is rare (<1%), and EBV is ubiquitous (>95%?), so getting large numbers of unexposed people who get MS would be hard in any case. It's unclear if they corrected e.g., for expected age of onset (~30) since I expect they started sampling blood in ~20 y.o.'s.
2) Some researchers claim molecular mimicry, where an EBV protein looks very close to a protein on the foot of myelin (near the edge)
But in MS it's not clear if the inflammation causes the myelin loss or some nerve pathology causes the loss (which causes the inflammation). There's a line of evidence that the axons are disrupted well before the myelin loss.
Also, MS is a clinical disease: it's just "multiple" "sclerosis" in the CNS -- without other more specific causes like MOG/NMO. There could be many causes that end up creating multiple demyelinating plaques, so EBV, even if it is a cause, might not be a principle one.
Finally, the problematic form of MS is the (typically later) progressive phase, with increasing disability even without immune flairs. While some immune suppressants can limit the (earlier) flairs, drugs approved for progressive are barely better than nothing.
Also, the incidence of MS seems to be increasing overall. sigh.
In my opinion living with this disease for a long time I think there's probably a link to lifestyle. I developed symptoms in graduate school during a very stressful time in my life. Years later I had another stressful event and had an awful relapse.
On top of that I've always struggled with my weight.
Makes me wonder if an underlying EBV infection, genetic vulnerabilities, unhealthy lifestyle and a stressful event that permits the EBV infection to compromise the CNS ultimately causes the condition we call MS.
I was diagnosed with PPMS in January 2018 and my neurologist put me on OCREVUS. At the time of diagnosis to MS I just had a little numbness in left hand and a little weakness in right leg but now after two years and three times OCREVUS Infusion which was supposed to help me and slow down the disease progression but on the contrary I am using walker for little walking at home with lack of balance and too much spasticity, weakness, numbness, bladder issue, low back and neck pains!!! I think this drug destroyed my life and I think if I hadn't used this drug my MS disease wouldn’t progressed at this level but I had no other choice because my neurologist said this is the only medication for PPMS!!! There has been little if any progress in finding a reliable treatment. Acupuncture eased my anxiety a bit. I was introduced to Health Herbs Clinic and their effective Multiple Sclerosis treatment. When I started the MS treatment I felt like a miracle has happened. Feel as good as I can feel. Started driving including on a freeway.! The herbal treatment is a sensation.. “Just google openpaymentsdata and see how much your doctor is getting paid ! AWESOME!!! They make money while we suffer.” I Just wanted to share for people suffering from this disease to visit healthherbsclinic. com it’s a 10 out of 10 from me! I Adhere anyone reading this to try natural approach, I’m 55 and never been this healthier.
Moderna is already working on a vaccine. This disease has ruined my life in more ways than one and I hope the vaccine eliminates the disease. Nobody should have to live like this.
I think the vaccine will reduce incidence drastically, but it will not make MS a historical disease. MS is not caused by EBV in ~20% of the patients.
It's like T1D, Alzheimer's, etc. There is a major environmental cause, in this case EBV, but also lots of different patient clusters with more complex etiology.
One of the most inspiring people I ever met was a college friend's mom who was years into MS but had steeled herself to stay active and strong and so into her 50s ran marathons. In her 60s she was confined to a wheelchair but nevertheless became one of the top hand-cyclist marathoners. Incredible palpable energy and positivity in her presence.
I have no doubt had a vaccine existed she would have taken it and spared herself the suffering.
But absent suitable treatment she made herself a hero.
Seems clear now that EBV causes enough trouble that we should think about trying to eradicate it if we can get a good vaccine. This will be horrendously expensive and difficult. But eradicating a disease has such unbounded benefits for humanity that we should try. By far the greatest thing medicine did last century, and possibly will ever do, was eradicate small pox.
Definitely a coincidence. While the current polio outbreaks were caused by a badly mismanaged and failed vaccination campaign pushed by the WHO and the Bill Gates Foundation out of an arrogant sense that vaccines were magic, the vaccination campaign in question was the polio one in the third world that was attempting to eliminate polio and the problem actually predated Covid (there were articles about it back in 2019, it just took a while to reach western countries). The Covid lockdowns everywhere certainly didn't help though.
(The problem was that they wanted to eliminate polio, but the vaccine itself had become the main source of polio outbreaks and the polio variant causing them didn't exist in the wild anymore. The only purpose of that component of the vaccine was to protect against outbreaks caused by the same component of the vaccine. So all the experts and organisations involved in polio eradication decided that if they dropped that variant from the vaccine everywhere at the same time and did a little bit of targetted vaccinuation to mop up any remaining outbreaks they could finally eradicate it for real. There were a bunch of optimistic presentations and papers expositing on this. It failed badly.)
