Multiple sclerosis has a common viral culprit, opening doors to new approaches
sciencenews.org
sciencenews.org
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 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.
It's been amazing. Wish they had it a long time ago.
> 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.
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.
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.
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.
If only I could mark myself with “never administer cipro and friends” in some way that would be respected even if unconscious…
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.
and yeah, more and more studies[0][1][2][3] are indicating the link between EBV and MS:
[0] https://journals.lww.com/epidem/fulltext/2000/03000/epstein_...
[1] https://www.hsph.harvard.edu/news/press-releases/epstein-bar... / https://www.science.org/doi/10.1126/science.abj8222
[2] https://pubmed.ncbi.nlm.nih.gov/31862243/
[3] https://link.springer.com/article/10.1007/s11481-010-9201-3
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...
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.
How are people okay with this system?
I mean you can argue that Australia is a rich country, but it’s available to any citizen regardless of wealth.
It's not available if you have early, MRI-active primary progressive MS. PBAC decided not to reimbursement ocrelizumab for that.
I think Sweden uses Rituximab openly for MS. In the US I've heard some neuros prescribe Rituximab if insurance won't cover O.
It turned out to be quite serious but healable given timely help. Most people would just give up until much more problematic symptoms develop.
My impression is that NHS has some sort of guidelines explaining default GP reactions to keywords.
E.g., "pain in the back" is the fastest way to end the conversation.
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.
https://en.m.wikipedia.org/wiki/Cartwright_InquiryWe
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/
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.
Amazing. Do New York City hospital doctors refer people to witch doctors and prescribe powdered tiger penis too?
https://quackwatch.org/chiropractic/general/
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.
Especially now that are realising that Ibuprofen is linked to chronic pain as it prevents your body from fixing the problem.
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.
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.
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.
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.
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.
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.
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.
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.
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.
You'd think so yes.
"All children aged 1 to 9 in London to be offered a dose of polio vaccine" https://www.gov.uk/government/news/all-children-aged-1-to-9-...
(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.)