A shot to prevent Lyme disease could be on its way
outsideonline.com
outsideonline.com
I'd totally take that shot. 59 cases out of 1.4 million is nothing, and even for those it's unclear how they actually were related to the shot.
Sadly, this indicates that the new shot could suffer the same fate. Give it to a million people, some will for sure have some issue, anti-vaxers come with conspiracy theories and convince a few to a class action, and there we go, another few decades without a shot. Gotta be fast this time before it's too late again.
Now the second time, I am again worried about getting sick with something else while in an immunocompromised state. The fatigue, fever, and back pain that came along this second time was worse than the first. I needed a nap after walking up the stairs.
So, I am curious how bad and prolonged the side effects were in these 59 adverse events. If only temporary, I'd consider it worth it over getting the actual disease.
The article also asks, "Why vaccinate against something that can be cured with antibiotics?" Undiagnosed Lyme becomes harder to treat the longer you wait, and the dose of antibiotics longer and more intense.
(PS: I am so very thankful for doxycycline.)
One thing which is important with a vaccine is that when I was a kid (early 90s) the rate of ticks carrying lyme was in the 10% range or less, while now it is >50%. A vaccine is critical.
If a for-profit corporation includes a warning in a EULA they're off the hook?? That's definitely not the principle we should use to evaluate new drugs.
If the company decided to take it off the market, when there are always lawsuits about new drugs, what should we do? Should we liberate the drug from the company and let others sell it? The system we have now lets Medical Doctors decide when a drug should be approved, and when it should be on the market.
It's not Medical Doctors that decided to withdraw approval and then removed it from the market. The approval was all fine. What was not fine was the public perception. Because the anti-vax campaign was very effective. Too many people started to think it's too fishy, so out of caution didn't want the shot anymore, so it became unprofitable to keep it on the market, so the manufacturer pulled it. (A bit surprising they didn't sell the IP or license it cheaply to somebody more adventurous..)
That's how your life can get impacted if the anti-vax lobby gets too strong, and that's what scares me. They can mess up their own health as much as they like, but once my life gets worse because of it, I have a problem.
But letting random people sue manufacturer because they have some symptoms at later point in time than the time they took the vaccine is just recipie for what already happened on case of Lyme vaccine. Everybody looses except for lawyers and people loose the most.
Now, as you linked. Civil Tort's are entirely within the realm of private "citizens" (companies count as people too) to bring forth on their own.
That's how it works in most countries, but not the US. Here we have a government regulatory agency (the CDC) to protect people from the ill effects of the free market. I like it that way.
COVID-19 has provided a great example of how well this process works: even the emergency use authorizations required multiple levels of clinical trials and the anti-vax propagandists mining the VAERS database for talking points can do so because there's a requirement to make a public report of anything which happens after someone is vaccinated even if there's no real suspicion that it was related to the vaccine.
Further, there were big political and financial reasons to push the vaccines through. Those are all conflicts of interest. Pfizer had millions of doses manufactured before approval. If trial results didn't look good, they certainly had the incentive to "massage" the results to get it approved and get those millions of doses sold rather than a huge loss.
As the original poster shared, it should be a considered a reasonable position to be skeptical of small scale results. Pfizer's position appears to have scaled well (Moderna as well). 100s of millions of doses across diverse populations show its relative safety and efficacy.
We actually have an interesting example which I think validates that process even though it comes in the unlikely form of the FDA's recent mistake approving Aducanumab. There is a lot of criticism, including IG investigations, over the approval because it was approved despite having failed to go through the process successfully. The Phase III trials were cancelled after they concluded that the drug was not successful, the FDA's internal scientific review found it did not meet the mark, and the outside scientific advisory panel rejected it so strongly that multiple panel members resigned after it was approved anyway. That to me seems like a pretty good argument that the process was doing what we expect and the way to avoid expensive mistakes is to follow it.
If this wondrously robust multi-layered process buckles in the face of a few hysterical anti-vax groups, you should ask yourself how robust it remains in the face of a billion-dollar pharmaceutical conglomerate with politicians in their pockets.
Similarly, it's no secret that companies have a vested interest in promoting their products but it's not like Pfizer says “Trust us, we employ doctors!” and the FDA says “Sounds great, no need to check!”. Each step of that process involves peer-reviewed publications, public data releases, and reviews by panels of scientific experts. It is quite valid to say that companies need to be strictly regulated to keep everyone honest but we don't have any indication that this has been happening and anyone who thinks the process is just a large pharma company waving money at doctors to buy silence really needs to learn how cut-throat academic competition is — the career benefits to being the first to report that plot would be huge! Remember also that this happens in many different countries around the world so that hypothetical conspiracy needs to be kept secrete by a multinational group of hundreds or even thousands of people.
What's the under-reporting multiplier? Why would anyone except for those affected, or god forbid, their families pursue and report bad events?
Just extra paperwork for no or little money.
But in this case, the facts are on the table. There is no scientific basis in pulling the vaccine from the market. But there was enough propaganda to stoke so much fear that everybody got scared and that was that.
Yeah, me too. I got Lyme's (in my backyard) and just finished up my treatment a few days ago (only 10 days of doxycycline). I had the rash, but now I'm concerned that some infections don't show one. I'd jump at a vaccine in a heartbeat.
It's really haunting that exactly the same FUD that tanked safe and efficient Lyme vaccine hinders covid vaccines adoption. And people wonder why companies that make covid vaccine wouldn't budge on being exempt from litigation on the basis of percieved side effects.
Legally speaking, I expect the exemption says something about not lying to the FDA in the fine print, so true bad actors would not be able to hide behind the exemption either.
The liability shield is precisely why I am Covid-vaccine hesitant. And Pfizer’s track record of honesty when it comes to their drugs is significantly bad. Combine that with the aggressive attempts to silence even a discussion of the vaccine’s side effects makes me extremely skeptical. When “everybody” says something is “safe and effective” and the people profiting “bigly” from that something while also being shielded from literally any liability… Well, that’s enough to make me zig when others zag.
A simple arthritis drug advertised on TV has to disclose the litany of side effects — so extensive as to be comical and yet even mentioning Covid vaccine side effects can get you silenced on social media — something is just very wrong about that. You want me to vaccinate my four kids just because the government says “trust us?” Nope. I’m a grown up. I also have a scientific research background. But when even scientific papers get removed (specifically pre-Covid papers on masks and influenza,) then I’m even more likely to mistrust the “experts.”
To be clear (not that I should have to,) I don’t have the Covid vaccine, but I have all sorts of others. So do my kids. I have vaccines covering everything from Yellow Fever to Japanese Encephalitis and everything in between. But this current vaccine effort reminds me too readily of the anthrax vaccine they were giving us in the Army in the early 2000s. All sorts of neurological issues were reported in many soldiers — often so bad they had to leave the military. And then, as now, it was “safe and effective.” And a rotavirus vaccine in 1999 was pulled from the market because of a rare but serious side effect. Yet the Covid vaccines have a much higher instance of rare but serious side effects compared to that, but everyone is running around saying that the benefits outweigh the risks. Mathematically, for my age and health, that just isn’t true. Ans it’s certainly not true for most healthy children. My point isn’t to debate the vaccine though, my point is to call attention to how the debate is censored. I could very much be wrong in my concerns. Or I could be right. But the fact that we can’t even have a discussion about it is the real problem. We could also apply this to masks. Calling attention to the lack of RCTs and the over-reliance of observational studies gets you branded as an anti-science caveman extremist. Musing as to why control groups were vaccinated (thus destroying long term safety and efficacy data points) also make you an outcast.
What we are seeing isn’t science. It’s politics wrapped in an appeal to authority. The effort to over-censor literally everything contrary to Faucian doctrine has backfired and created a significant group of resisters who, frankly, have little trust in governments.
Because these things are hard. Lacking the ultimate solution, a small step is better than nothing.
Or do you only walk because cars and trains are too slow to get you to the next solar system so why bother ...?
That's not a lot. Like sure if herd immunity was on the table it might have been, but lyme has an animal reservoir. Like if I had 76% immunity I would still panic every time I saw a tick, so then what is the point?
They are never 100%. This misconception seems to have gotten prevalent with COVID and the mRNA vaccines being "only" 90-95% effective. That is staggeringly good, better than most.
Against alpha...
That 76% (or more) reduction in risk of your panic turning into serious disease is the reason to get the vaccine even if you're still panicky.
Another way to think about it is if there was a vaccine to stop car accidents that is only 75% effective, is it worth getting the shot even though I’ll still be afraid of car accidents? Absolutely! The shot is unbelievably easy to get and probably cheap. It doesn’t solve everything, but it is so easy to do it’s hard not to be worth it.
You may find a difference of a few orders of magnitude.
Seems like a big difference to me even at the low end of the range.
Maybe I'm misapplying the efficacy stat though?
Lyme disease can be horrible. The value is in vaccine is to prevent most cases, not to eliminate the annoying tick checks.
Funny how you are confirming the sentiment in the article. I'd suggest you read it.
This part is true no matter how effective the vaccine is. Ticks are gross, diseased or not.
1. Form The High Church of Vaccination
2. Claim vaccination as a sacrament
3. Watch the craven fascist majority of the US supreme court (i.e. all of the ones that fashion themselves as lil Scalias, but have terrible writing that reeks of double standards, if any at all, and dog whistles to their base) try to somehow toss the case for not having standing while trying to not undo any of the religious exemptions that they've blown open in the last decade or so (e.g. from Hobby Lobby to the recent shadow docket thing in NYC against Cuomo)
https://www.dailydot.com/debug/genesis-ii-church-bleach-cure...
I wish Lymerix was available because I no longer want to have to hike or bike in the great outdoors head to toe in clothing design to avoid tick intrusion, much less worry that I was bitten on an exposed part of my skin. Now I'll just have to do it because my skin is designed to be a solar panel for vitamin D production in the dreariest parts of the Irish winter...
Unless you're in the 5% of the population that's genetically predisposed to poor health outcomes from Lyme disease, I would not worry. Even if you are, I certainly would not worry to the effect of covering yourself from head to toe on a nature hike. The stress from your worry, is likely causing the type of inflammation that would prohibit your body's natural immune system from attacking a pathogenic bacterium.
It wasn't "very rare" and the side effect was that it literally gave people lym disease.
Why are vaccinations a political thing now, and if anyone raises any questions whatsoever on any vaccine they are "anit-vax".
Again, 59 of 1.4 million. I call that "very rare". About half a million Americans get Lyme from ticks, every year. You do the math. Even if there is a causal connection to the shot (which has not been established) then that's still orders of magnitude lower than the risk of actually getting the bacteria in you if you somewhat frequently visit the woods. And if you don't, just don't get the shot. Your call.
So yes, that's a textbook "anti-vax" sentiment. It's not based on the actual scientific evidence but uses people's overall fear of vaccinations. And it hurts everybody, because the result is that even people who want the vaccine can't get it. Otherwise I wouldn't actually care. Let the anti-vax people suffer if they choose to, but leave me out of this.
I have a few scars from tick bites that I was lucky didn't cause any infections. Sign me up for whatever vaccines I can get for tick-borne things. I'd love to see the Lyme disease vaccine come back and I'd love to see something for AGS.
In any case, I agree with the underlying point that it's a travesty that the vaccine was taken off the market due to fear-mongering and unproven allegations.
It's a testament to the failure of the judicial system to protect against frivolous lawsuits.
> The arthritis incidence in the patients receiving Lyme vaccine occurred at the same rate as the background in unvaccinated individuals. In addition, the data did not show a temporal spike in arthritis diagnoses after the second and third vaccine dose expected for an immune-mediated phenomenon. The FDA found no suggestion that the Lyme vaccine caused harm to its recipients. [0]
Source?
It sounds like it didn't actually do that:
https://en.wikipedia.org/wiki/Lyme_disease#Vaccination:
> Subsequently, hundreds of vaccine recipients reported they had developed autoimmune and other side effects. Supported by some advocacy groups, a number of class-action lawsuits were filed against GlaxoSmithKline, alleging the vaccine had caused these health problems. These claims were investigated by the FDA and the Centers for Disease Control, which found no connection between the vaccine and the autoimmune complaints.[170]
> Despite the lack of evidence that the complaints were caused by the vaccine, sales plummeted and LYMErix was withdrawn from the U.S. market by GlaxoSmithKline in February 2002,[171] in the setting of negative media coverage and fears of vaccine side effects.[170][172] The fate of LYMErix was described in the medical literature as a "cautionary tale";[172] an editorial in Nature cited the withdrawal of LYMErix as an instance in which "unfounded public fears place pressures on vaccine developers that go beyond reasonable safety considerations."[25] The original developer of the OspA vaccine at the Max Planck Institute told Nature: "This just shows how irrational the world can be ... There was no scientific justification for the first OspA vaccine LYMErix being pulled."[170]
>By 2001, with over 1·4 million Lyme vaccine doses distributed in the United States the VAERS database included 905 reports of mild self-limited reactions and 59 reports of arthritis associated with vaccination [29]. The arthritis incidence in the patients receiving Lyme vaccine occurred at the same rate as the background in unvaccinated individuals. In addition, the data did not show a temporal spike in arthritis diagnoses after the second and third vaccine dose expected for an immune-mediated phenomenon. The FDA found no suggestion that the Lyme vaccine caused harm to its recipients.
You could flip that upside down and ask why people are questioning the experts. Despite having almost no knowledge of statistics, epidemiology and other required skills. Vaccines with rare or almost no side effects are being called into question.
We should not be guileless. Whether I have a piece of paper that shows others I'm an "expert" or not, I still question. I ask things like "why is this contemporary vaccine XYZ so politicized?" and "why are companies and governments paying people to take it?"
In other arenas, we say that if you receive something for free "you are the product". So I ask "why is this contemporary case any different?"
The above is only an example. I reserve my right to question. I will note that I'm in no position to dictate to others. I will also note that very few people are currently in a position to dictate to me. I desire that status quo to remain. Anything else is despotism.
Note that the class action suits were settled without paying the "victims" anything. That shows they were garbage from the start.
While it's clear from the rest of your post that you meant the vaccines, you accidentally ended up making your own counterpoint! It is ABSOLUTELY possible for millions of people to have long term side effects from COVID, the disease.
It would be a brand new thing for a vaccine to give so many people side effects so long after the shot. No vaccine has ever given people side effects that didn't show up within about 6 weeks.
Yes, some people had side effects from the Polio vaccine. But you know what was far more likely to cause lifelong side effects? Polio!
Why do you believe this is?
"Long term effects" here doesn't mean what you think it means....
In the past, long term side effects were still occuring with weeks or few month after the shot. However, the statistical signal may be delayed for years or decades to manifest.
It's very hard to think of a way how anything could cause side effect years down the line. Vaccines do not contain beryllium or asbestos. The mRNA vaccines do not even contain mercury or other heavy metals. Mind you, 'none' means less than a can of tuna. They do not remain in the body for long. None of it.
That's why people aren't too worried, rationally. Long term effects whould have shown already.
If you indeed mean COVID, I agree. There may be late long term effects, because of the diffuse organ damage and persistent infections.
Of course any strong immune stimulation may slightly increase or decrease the risk for derailing or aging the immune system. Which may sooner, e.g. autoimmune disease risk, or later, e.g. lymphoma risk, manifest.
For COVID it's a silly debate, because you will get infected or vaccinated in any case.
Here's a doctor, you don't usually get to hear from raising concerns you don't seem think to exit.
https://www.factcheck.org/2021/04/scicheck-idaho-doctor-make...
I know which of these two I consider gaslighting.
Long covid has yet to be scientifically proven.
after any critical illness, doesn't even have to be an infection, with an ICU stay where intubation was required, the odds are ~50% you will be left with a permanent injury for life. However even after relatively moderate infection a permanent lifelong injury may remain.
https://my.clevelandclinic.org/health/diseases/21161-post-in...
It's not like injuries are binary: dead or alive.
you could also end up alive, but in a wheelchair with oxygen for life.
There is a huge spectrum in between, anything from vague brainfog, properly known as executive dysfunction, to partial or total paralysis due to a neuropathy often requiring mechanical ventilation, narcolepsy, organ failures, autoimmune conditions, and so on and so on.
None of this is new, nor controversial.
For those un-informed, on a walk through any woods, you should always wear high socks, and do a full body check for ticks after.
Deer ticks can be as small as a few grains of sand, and near undetectable if they latch on unless you have sharp eyes.
Obviously they can transmit lymes.
I had a close encounter a few years ago, but very luckily giant rings appeared around the bite site, making it a very easy diagnosis.
That only happens in 30% of cases though. The rest likely have no idea, and over time the disease will work it's way into your nervous system, causing permanent damage if not treated quickly enough.
Chronic persistence (at least in some cases) has now been proven.
Took someone with chronic lyme to donate the brain for research: https://www.frontiersin.org/articles/10.3389/fneur.2021.6280...
https://respectfulinsolence.com/2016/07/08/kris-kristofferso...
https://news.tulane.edu/pr/study-finds-evidence-persistent-l...
I'm reading up on all this just now due to the HN front page articles, but these 2 seem to be in contradiction.
I've heard common bloodwork done is very poor at detecting it but is there a better or sure way of detecting it?
How did it begin and how did it progress?
They have gotten much worse, in the last few years (Long Island, NY).
I also know a few (several) folks that have had very bad, life-changing debilitation, as a result of Lyme. I'm aware of one (that I never met), who died from complications of Lyme. I also have a family member, that got it pretty badly, recovered completely, and now seems to be immune.
I'm having myself checked at the doctor, next week.
I went to the doctor, she said the tests at this phase are unreliable, my bite could be Lyme, but could be something else too (the bulls eye rings didn't form yet). She said the pragmatic approach is too treat it as if it was Lyme and take antibiotics. It's better to take some antibiotics than wait for the symptoms (which are not always easy to assign to lyme).
Other practitioners use westernblot lab results and differential diagnosis.
My relative didn't find out, until he had a cantaloupe for a kneecap. They tested the fluid, and found lots of Lyme.
He's always getting bit. Deer pass through his backyard, on a regular.
He said the treatment was anticlimactic. A course of oral antibiotics.
Shit, if I were planning on spending a lot of time in the woods (like, more than I already do), I would go to a vet and see if they would give me the one that's for dogs. Untreated Lyme messes people up.
A whole bunch of people I knew who thru-hiked the Appalachian Trail in 2010 got Lyme. I did not get it, but I don't think I was appreciably more cautious than the people I directly knew who did. Part of what makes Lyme scary is the randomness of who gets it and how easy it is to not know you've contracted it.
Fortunately, hikers are at least generally aware that it's a possibility and know to seek treatment for it specifically. Awareness in the general population is probably still much lower.
P.S. Hello from WRJ, VT, fellow New Englander!
Newby is the producer of a propaganda documentary for "chronic Lyme" called Under Our Skin, and also spreads conspiracy theories about bioweapons:
https://sciencebasedmedicine.org/a-review-of-under-our-skin-...
https://theconversation.com/no-lyme-disease-is-not-an-escape...
The article itself is about in vitro experiments funded by other chronic lyme conspiracy theorists. It has nothing to do with human disease.
According to the CDC, its 70-80%[0].
Red rings from bites are not uncommon in general. I know I get a reaction from horse flies that looks to professionals like a potential deer tick bite with Lyme.
Also, a tick-bite splotch doesn't always have to be ring-shaped.
EDIT: why downvote facts?
Recent example on a hot topic: "CDC reverses itself and says guidelines it posted on coronavirus airborne transmission were wrong"
https://www.washingtonpost.com/nation/2020/09/21/cdc-covid-a...
By contrast, lyme disease is (1) more than 40 years old, (2) not contagious, and (3) has no political headwinds. There is little reason to distrust CDC on this.
There's a huge difference between data on a disease that's been studied for over 40 years, vs one that's only been around for a few months.
If you think the CDC got it's facts wrong on Lyme disease, it's as simple as saying "This source disagrees", and provide the source. Jumping to the conclusion that your unnamed source is more accurate than any other is another problem itself.
80% develop EM https://www.aafp.org/afp/2012/0601/p1086.html
You can easily find a lot of sources in this ballpark.
Its body quit tiny is just over 1mm in width.
I got it either sitting in a field of grass that was a few inches tall, or walking through some brush for 5 minutes a Minneapolis park. I wasn't out doing anything exciting like hunting for morels in old growth forests.
My wife was once bitten by something through her pants. That left a small ring. I do doubt it was a tick though.
My sister on the other hand was bitten by something a few years ago, she thinks it was a spider. There were multiple red rings extending far and she started having other reactions and needed hospitalization. They pumped her so full of anti-biotics(was on a drip for days), it left her digestive system screwy for months but at least she does not have Lyme disease now.
I grew up where we built our house (deep, deep in the woods). I spent my childhood on the farm there. Ticks were a constant menace, I honestly don't know how many hundreds I pulled off myself as a child.
When I was able, my spouse and I purchased it and built a house. 6 months after moving in, my spouse developed Lymes disease. I have no explanation, other than I am immune to the ticks in the area (or I have had it my entire life with zero symptoms maybe?).
Never got Lyme disease though by following what you said - check for ticks at the end of each day. It really is true… if they are latched for less than 36 hours you are good.
My son on the other hand had Lyme disease when he was about 6 with a found tick followed by obvious bulls eye rash in the middle of his back. The one time we didn’t check him at end of the day… 30 days of amoxicillin and he’s been fine the past seven years.
Did they offer alternative explanations or did they simply stonewall you and deny your reported symptoms?
One of the lessons I learned far too late in life was to not waste time with doctors who don’t believe your reported symptoms.
On some level I understand how it happens — Doctors inevitably see a number of hypochondriacs and people with psychosomatic illnesses who need to be handled delicately to avoid further entrenching their perceived illnesses. However, when you’re having legitimate symptoms and your own doctor tries to deny the symptoms without offering further diagnostics, it’s time to cut ties and move on.
It can take a few tries to find a good doctor.
edit: For those not aware, a DO is fully licensed to practice medicine (in the US at least), no different from an MD. Don't confuse them with chiropractors (DC) or similar. https://en.wikipedia.org/wiki/Osteopathic_medicine_in_the_Un...
Thought I'd de-acronym-it for you; and yes, my MD father tells me a DO is just as good as an MD.
He wanted to rule out this line of thinking first.
Shortly after this I started to develop lesions in my mouth and scalp. Then they spread to my entire body. 6 months later got a diagnosis of an autoimmune blistering disease. The specialist said it was a usually a disease for old people, very unusual for an otherwise healthy 35 year old to develop it. 8 years of oral antibiotics and some steroids for flare ups and I was in remission.
In my opinion, everyone should be leery of tick bites.
Holy cow. That is a frightening amount of time to have to take those.
If an MD prescribed antibiotics for that long a continuous time period, they should lose their license.
a medical opinion is just that. an opinion. consensus often takes decades to change.
As humans, we forget about the times we were wrong, and also don't share those stories. "I went to the doctor thinking I was dying of cancer, but it turns out I'm allergic to mushrooms" is much less likely to be passed around as a story than, "No doctors would listen to me until one did and tested me and found out I have Lyme disease."
Reflux is a very common food allergy symptom and milk is one of the most common allergen, if not THE most common.
I've had 3 or 4 scopes that showed some mild inflammation, and GIs were simply lost. I've managed to locate a 90 year old allergist who probably began practicing before there was benadryl. After recounting the symptoms I was told "it's milk. it's always milk". I was taken aback, how can anyone be so sure? Literally 5 minutes later that was confirmed by a skin-prick test.
Most physicians are garbage. The allergist was quite thorough.
The billing rate to dismiss you in 30 seconds pays about the same as a 30 min appointment. The incentives just aren't there.
I say this because there's a rising trend of anti-intellectualism and distrust of doctors in the US, which leads to massive self inflicted wounds in Covid and vaccines. Doctors aren't infallible, but they're far better than random online sources.
As someone who knows a practicing doctor who is also anti-vax, these are orthogonal issues. Sometimes, distrusting a specific doctor is the more intellectual approach.
The thing I think you're missing is that the resources to do good, deep research on a condition do exist, and the sufferer has very strong motivation to do that research and become very well informed in the etiology and treatment options. The doctor, less so. They have a lot of patients and a lot of demands on their time.
Will a good doctor put in the effort, do the research, and come up with a superior treatment plan? Certainly! But not all doctors will do this.
If you use the allegory of the pig and the chicken, the sufferer is the pig, the doctor is the chicken. It is reasonable that the average pig will put in more work and be better informed about their own condition than the average chicken.
I don't know a single person with a significant chronic condition in the US who would say the health system and all their physicians are amazing and great. Usually you hear the exact opposite.
However, stories about that gem of a doctor they finally found over the years are very common. Most physician suck, not sure why.
Loss of trust is indeed very unfortunate, counterproductive and indeed leads to unnecessary suffering.
Physicians are highly educated professionals in a legally protected rent-seeking monopoly, backed by a powerful trade union, AMA, and the corresponding social status/wealth/authority that comes with all that. Seems to me it's only fair that the onus is entirely on them to win that trust back. I'm not holding my breath though.
Medicine is just another business. Remember that next time you see a doctor.
So it's not just easy to find something that ONE doctor has never heard of or seen, but you can find many that ALL doctors are unfamiliar with!
[x] "cadaverous particles" (washing hands after autopsies)
[x] "hysteria" (likely a combination of various mental health conditions and/or PCOS, polycystic ovarian syndrome)
[x] "GRID" (HIV/AIDS)
[x] leaded gas bad
[x] asbestos bad
[x] smoking bad
[?] refined sugar bad
[x] Autism
[x] ADHD
[x] COVID-19 (from ??-2019 until Feb/Mar 2020)
[ ] chronic lyme/other tickborne illness
[ ] ME/CFS
Hopefully, the skyrocketing case load of the latter two (due to explosive spread of tickborne illness, and "long covid", respectively ) will get the gears actually turning and change consensus.
I don't get what's wrong with the medical community acknowledging "hey we have all these odd cases, we can't pin down a cause, but here's the leading theories." Instead, just look at the "Myth/Fact" thread elsewhere in the comments here. Stating with such authority "antibiotics totally cure Lyme". Since when is anything in medicine a sure bet? You're telling me it's impossible that an evolving lifeform can't possibly evade the immune system and selection pressure and become persistent? What?
Ok, please rebut me, tell me how this line of reasoning, "these currently 'orphan' diseases deserve taking a closer look, and not dismissed out of hand" is wrong.
Contrary to popular belief, the CDC and medical community do actually continue to research the topics of potential Lyme persistence and post-treatment Lyme symptoms. We’re discussing this under the headline about a new Lyme disease vaccine, aren’t we?
However, there is also an out of control pseudoscience/quackery community that has attached itself to Lyme as the go-to explanation for unexplained symptoms. They’re drawn to the theories of Lyme persisting in undetectable ways, which they use as an excuse to diagnose people by vague symptoms alone. There are now a number of well-known scam Lyme disease labs that claim to use proprietary techniques to identify Lyme disease that the reputable labs can’t catch. Virtually everyone who submits a sample to these scammy labs comes back with a “positive” result.
I once tested positive for Lyme using the CDC criteria from a reputable mainstream lab. The specialists I saw did not mess around with treatment as well as follow up, but they did go to great lengths to ensure I wasn’t trying to get in with a pseudoscience or self-diagnosed “chronic Lyme” case. One of them explained that she was inundated with appointment requests from people who self-diagnosed as “chronic Lyme” after reading Internet forums despite multiple negative test results and refused to believe any other explanation. The “chronic Lyme” online communities are a terrible mess of misinformation, but the actual medical community around Lyme treatment is quietly continuing to do good work. It can be difficult to separate the two from the outside due to all of the noise made by the pseudoscience quacks that have attached themselves to the topic.
The inability to adequately assay Lyme speaks more to how bad we are at assaying diseases, than to the (il-)legitimacy of the disease.
That would have the opposite effect, because many (or likely most) of them never actually had Lyme disease.
That’s the problem: “Chronic Lyme” has attracted too many pseudoscience practitioners who lazily blame everything on undetectable Lyme. They diagnose based on symptoms alone and/or employ tests with known extreme false positive rates while dismissing mainstream tests that have been validated.
The more you mix those false patients into the real Lyme population, the more you dilute the real signal from actual patients.
Humoring the quackery doesn’t advance the science.
If you want progress to be made in a field, it’s important to be diligent about keeping the quackery out.
Tick-borne illnesses are talked about a lot in Europe, ever since I was a kid (~20 years ago). Can't say I have received much conflicting information in all those years.
My point was, it wasn't even a recognized disorder until fairly recently. As I understand it, part of the problem is a cottage industry of quackish medicine sprung up around the unfalsifiability of chronic Lyme and CFS. But instead of the medical community taking an agnostic stance "we see you are suffering but we can't explain it", there was a strong push in the opposite direction, asserting that it's psychosomatic / "only in your head" / "here's some antidepressants." And you see this pattern again and again. I think the dismissive attitude is starting to abate among the younger medical professionals but you still see this air of "anything I wasn't trained on isn't a thing" among many of them.
As a counterpoint to this, my first exposure to chronic fatigue syndrome came while I was dealing with depression and getting psychotherapy for the first time. CFS popped up in the news, and a friend guided me to a web forum where I'd get the "unfiltered" version from people who suffered from it. What jumped out to me about that community, given my struggle with depression at the time, was that it was a cesspool of stigma against mental illness. The experiences people reported varied over a wide spectrum, but there was a significant contingent of people with classic symptoms of depression along with the vague physical complaints that most people have, outraged that doctors would be so insulting as to suggest depression or other psychological explanations. If there was one belief that united the community, one shared credo, it was that they deserved a physical diagnosis because their dignity required it, and they would not accept a psychological diagnosis because it would render them unworthy of sympathy. One person summed up the consensus succinctly by saying it was an outrage for doctors to suggest that they were "just too lazy and too stupid to get their lives together." That was unwelcome, but valuable, confirmation of how some people saw depression, and it made me more guarded about when and how I talked about it.
So it cuts both ways. I'm sure there are doctors who arrogantly label any patient they can't figure out as "crazy," but I'm just as sure there are patients who overreact, angrily, to any mention of psychological causes or treatments.
A few days later I found a bullseye rash on my leg (not near the bite area) which pretty much confirmed it.
I felt 100% around 5-7 days after developing fever symptoms.
Wait, what? The only part of NY 20 miles from Lyme is the tip of Long Island. It's at least 60 miles from anything upstate.
That's a weird description, depending on what kind of waves this could be anything from microwaving the blood to blasting it with UV or just shining some rainbow coloured lights on it.
also there was some research on UV-C irradiated blood.
Or you could just say, "blast it with electromagnetic waves".
Specifically, following the now routine mass bird/chicken massacres of the Bird Flu panic.
It's also comforting (I'm a misery loves company kind of way) to know other other people are dealing with, and trying to fight, the disease. It makes dealing with everything feel a bit less lonely
[1] Check out these tick tubes: https://blogs.cornell.edu/nysipm/2019/06/28/dont-make-your-o...
This also clears out the competition to the benefit of non-native plants, which the deer don't eat. Some of these plants are invasive, such as japanese barberry, and render large areas untraversable. Not to mention the bramble is an excellent home for rodents, another major tick carrier.
If you want to reduce ticks, deer are a critical element of their lifecycle.
Generally, the deer are only overpopulating (at least to the extent you describe) in areas that aren't hunted, which also tend to be highly populated. It seems many people enjoy seeing the deer in their backyards and don't want their almost-pets to be killed, especially if it means it might have to be done on their land. How do you propose dealing with that opposition?
More than anything, I hope we can improve our identification of this disease, a vaccine would absolutely be a game changer, if they can make it happen.
One should still get the vaccine when living in or traveling to an affected area and plans to go into nature, though. When I was last vaccinated it took 3 months for the vaccine to reach ~70% efficacy after 2 shots and 12 more months to reach 99% efficacy after 3 shots, so people should not wait until they travel to get it.
But just last week I had another course of penicillin to treat Lyme disease.
Where i live, ticks are prevalent and this year seems to be particularly bad for just Lyme disease. I know four others who also have it, which seems higher than normal.
A vaccine would be most welcome.
Deleted comment
https://www.bc.cas.cz/en/news/news-detail/5483-a-new-lyme-va...
> Despite its shortcomings, Lymerix was initially popular. By July 2000, more than one million doses had been distributed. But safety concerns eventually sank the vaccine. While the FDA panel that approved Lymerix did so unanimously, several members wondered whether the vaccine might cause an autoimmune reaction leading to arthritis. A section of OspA resembles a human protein that modulates the immune response, and the concern of some on the FDA panel was that, after vaccination, the immune system would overcorrect and fight off not only the OspA protein that covered the bacteria, but also that human protein. Nothing like this occurred in Lymerix’s clinical trials.
> Shortly after Lymerix hit the market, those worries emerged nonetheless. Some recipients reported joint pain and arthritis, symptoms they blamed on the vaccine itself. The FDA found only 59 such adverse events out of 1.4 million doses administered, and did not find direct scientific evidence that the Lyme vaccine had caused them. Still, the questions over possible unintended effects were enough to dampen enthusiasm, especially after 121 Lymerix recipients filed a class-action lawsuit against the vaccine’s manufacturer. SmithKline Beecham, projecting sales of only 10,000 doses in 2002, decided to withdraw Lymerix from the market in February of that year. (The lawsuit was settled one year later, with more than $1 million paid out by the pharmaceutical company to cover the prosecuting lawyers’ fees, but no financial compensation was awarded to the plaintiffs.)
The new treatment in development avoids the problem by directly injecting antibodies instead of stimulating the immune system to create the antibodies as Lymerix did.
> Chronic Lyme disease (CLD) is the name used by some people with "a broad array of illnesses or symptom complexes for which there is no reproducible or convincing scientific evidence of any relationship to Borrelia burgdorferi infection" to describe their condition and their beliefs about its cause.
(TLDR; lot of misinformation about Lyme disease)
These are spirochetes in the brain/spine of a dead patient who had proven lyme diagnosis, has been given the standard treatment in the past, never recovered, developed dementia, died.
Full study: https://www.frontiersin.org/articles/10.3389/fneur.2021.6280...
The wikipedia article you are quoting is outdated misinformation, please stop spreading it.
the wiki article is indeed misinformation.
https://eu.delawareonline.com/story/sponsor-story/nemours/20...
Myth #5: Lyme disease can have debilitating, lifelong effects.
Fact: When treated with antibiotics, Lyme disease, at any stage of presentation, is curable.
Myth #6: My child will be at risk for chronic Lyme disease once he’s infected with Lyme.
Fact: Although some people report lingering or recurrent symptoms after Lyme disease, there is no evidence that chronic Lyme disease exists. Prolonged courses of antibiotics are not needed and can do more harm than good. Follow the recommendations of trusted sources such as the Centers for Disease Control and the Pediatric Infectious Diseases Society.
Myth #7: Alternative therapies are valuable treatment options for my child’s Lyme disease infection.
Fact: Lyme disease is a hot topic on the internet with many people sharing both successes and horror stories about alternative treatments, but keep in mind that it is hard to verify the legitimacy of internet sources. Instead, talk to your child’s pediatrician, or consult with a pediatric infectious diseases physician at an academic medical center.
Myth #5: Lyme disease can have debilitating, lifelong effects.
Fact: When treated with antibiotics, Lyme disease, at any stage of presentation, is curable.
The fact provided in response assumes that people are getting antibiotic treatment, which is not always the case. If you go untreated, then you can have lifelong debilitating effects. I don't think even the author of the article would dispute that. So why is the author using weaselly arguments to imply that you can't? Seems like an attempt to confirm a biased judgement.
Simply saying this doesn't make it true. This is not true and that Wikipedia article is outdated.
https://www.frontiersin.org/articles/10.3389/fneur.2021.6280...
Pretty damning.
BUT I really did do my own research with respect to Lyme, reading deeply into the peer-reviewed literature, and I came to the conclusion that the "scientific consensus" was formed by people too lazy or misguided to read it themselves.
For example, the consensus was that Lyme couldn't persist in humans after antibiotic treatment. But it DOES persist in other animals including primates. They could easily discover that because they could euthanize those other animals to see if it was there in their tissues, and it was. They couldn't do that with humans. The conclusion is OBVIOUSLY not that it can't happen in humans, but rather that we haven't proved it could. The "scientific consensus" got those outcomes confused, and assumed it couldn't.
But consider this quote from the OP article: "In May, her research team published their strongest evidence to date of persistent Lyme symptoms. In a unique finding, they discovered Lyme bacteria in the tissues of a deceased 69-year-old woman who contracted the disease, was treated multiple times with antibiotics, and still couldn’t clear the infection from her body.”
I was impressed by related evidence a couple years ago, such as an examination of the brains of people who had died of Alzheimer's. I don't remember the exact number, but something like 25% of those brains contained Lyme spirochetes. Note that there is a theory gaining traction recently that Alzheimer's is caused by the brain's attempts to manage active infections.
There is much, much more to say, and a LOT of research that goes in the opposite direction of what you're assuming in your post.
An anecdote: researchers tested hundreds of FDA-approved drugs in test tubes to see which ones worked best at killing Lyme spirochetes. Disulfiram won. My wife, who had lost her career as a retinal surgeon and researcher due to a chronic illness we thought might be chronic Lyme, took disulfiram under the care of her doctor who had treated Lyme patients for decades, and who was one of the first to try disulfiram in patients.
After the treatment, her illness disappeared. Our older son also had the same illness, which led to him taking a year off from school because he just couldn't function. He had been taking antibiotics for a couple years. At one point we stopped the antibiotics, and he felt great for a week, worse the next week, and in week 3 he was all the way back to being pretty nonfunctional with the symptoms attributed to "chronic Lyme". He, too, took disulfiram and was cured.
Note that we had long spent summers on Little Deer Isle, Maine, known for its deer and deer ticks.
> These results however do not clarify whether the Borrelia infection had anything to do with her progressive neurodegenerative disorder
This study set out to prove chronic persistence of the pathogen despite standard treatments, which is rather hard to dispute.
They are funded by their antiscience movement: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4489928/
The Frontiers paper is a single case report that admits that the woman's Lyme ELISA (and hence total antibodies to Lyme) was negative when she started experiencing dementia. Without antibodies against Lyme, it would be a mistake to claim that she had "chronic Lyme" (which isn't real regardless.) The paper is consistent with someone who had lyme disease (a not-uncommon illness) and then years later was diagnosed with dementia, but you can't say Lyme caused the dementia.
There is a scientific consensus against chronic Lyme based on decades of research.
It's disturbing that chronic Lyme has become a dangerous social phenomenon based on conspiracy theories, fake diagnoses, and fake treatments.
https://www.thecut.com/2019/07/what-happens-when-lyme-diseas...
Seems your assertion here is that a professor of immunology at Tulane has committed fraud.
That is a very serious accusation and the onus is on you to prove that. Do you have any evidence? Can you point me to any histology experts that have disputed these findings?
1. Was the slide image in the study real? 2. Was pathogen visible in the slice? 3. Why is there a pathogen in the brain several decades later?
I've already seen the needle shift from "Lyme is impossible after antibiotics" to "well I guess some cases escape first round of treatment."
Another thing that would great, in addition to a vaccine and better testing, is prevention. Infected ticks are way more wide spread than they used to be. I've heard various reasons for this, including habitat loss of all kinds of animals. Simple measures can help, like eating more deer, or letting chickens roam free in high-tick areas.
Granted I'm just a rando on the internet and not an expert in infections diseases. On the other hand, I've diagnosed with and successfully treated for Lyme disease. I still get dozens of tick bites a year. A reliable test would be a boon for people like me.
What you want is guinea hens. They're voracious tick eaters. And will hide in trees, etc. at night. But also noisy as hell, and will walk all over roads.
Wild turkeys eat a lot of ticks, so we should be encouraging them.
Northern bobwhite quail are a native (to north america) quail which eat a lock of ticks. But they're near-threatened and very few of them in the wild and they also don't go as far north as New England (we have them here in Ontario but sparsely)
You have to scroll through 20+ paragraphs before you get to the lede...
"Enter Mark Klempner. A physician and infectious-disease scientist at the University of Massachusetts, he’s embarked on an experiment that could upend the field of Lyme treatment. Klempner is the lead creator of a first-of-its-kind antibody shot for preventing Lyme infection."
And the most relevant update comes after around 50 paragraphs in the 3rd from last.
"In February, Klempner's phase-one trial kicked off with 60 participants. The goal of the trial is to determine the right dosage so that a person is protected for six to eight months. Lyme PREP will have to be administered annually, but it's a small price to pay in the minds of infectious- disease experts. If my forehead looks flat, it's because I have been banging my head on the wall for 35 years," says Telford. “We need as many tools as possible to prevent Lyme disease."
In just a few years, Lyme PREP could be available for commercial use. Klempner is eyeballing 2024, and maybe even sooner, depending on how the drug performs in clinical trials."
https://www.vox.com/science-and-health/2018/5/7/17314716/lym...
I was surprised to know that they didn't bother with that in the UK. Then I got even more surprised when I learned that there's actually a lot of ticks in Scotland. I don't understand why this isn't spoken about more. Back at school they taught you at primary school what to do if ou het bitten, how to take it out, where to bring it for tests etc.
My working theory is the deer to human ratio of an area determines how many deer ticks.
The absolute quantity of deer is more important than the deer/human ratio. Lawns make it super easy for deer to migrate, human presence suppresses wolves and other predators, and mice love our trash, houses, bird feeders, and pet food.
Even if you garden you’re probably only out there a couple times a week?
But you could be right that quantity of deer is more important.
BTW have you considered guniea fowl? Or at least something like this might help. https://www.consumerreports.org/pest-control/bait-boxes-are-...
I actually just learned about guinea fowl elsewhere in this thread! Definitely will be looking into it.
I also started doing the permethrin soaked cotton balls in tubes. Mice collect the cotton for their nest and it kills ticks. Also our dog gets tick-killing meds and takes out a non-trivial amount just by collecting and killing them.
Our spring "dog tick season" has become intense the last couple of years. At the height of the season this spring the daily tick count from grooming the dog was anywhere from 10 (a light day) to a high of 27 ticks acquired after an hour-long hike. When it's this bad, I can pick up four just walking across the front lawn. During that season they're mostly not deer ticks, so fortunately they're bigger and much easier to find, and at least according to most literature I've seen, dog ticks do not transmit Lyme.
Wow if tick killing meds exist for dogs maybe we could get deer on those. Problem solved?
From my understanding, ticks can be in any type of grass. If you somehow touch grass of any type, be it walking, sitting or hand-mowing, there is a chance of picking one up. Sure, there are few ticks in very populated areas, but I would rather guess that more people equates to more likelyness that someone else already picked up the ticks in that area. And obviously: there is less grass were many people go.
They claimed that the vaccine gave them Lyme when really the vaccine gave them an immune response for a few days... as vaccines should. Through a huge amount of media attention they scared away the pharma company, they stopped marketing, sales tanked, the vax was pulled. No medical issues with the vaccine were ever discovered.
If you read closely they attribute this to medical objections without mentioning the reason you're stating. Your statement better aligns with my memory of the period.
https://www.cdc.gov/lyme/stats/tables.html
The really strange thing is Massachusetts. In 2010 they had 36.3 confirmed cases per 100k residents--one of the higher rates in the country at that time, but in 2019 they had .1 confirmed cases per 100k, while neighboring states remained high. I have to assume this isn't real or is some kind of artifact (not confirming, just treating?), but I wonder if anyone has any insight into this?
My understanding is that very tough cases of neurological Lyme disease often benefit greatly from IVIG. Wouldn't this be a more targeted version of IVIG?
But you’ll still get them if you’re outside, and should do daily tick checks anyway.
Every time you get a tick you should remember that you could be safe from lyme, but the antivax movement took that away from us.
I'm not saying it was good that Lymerix was pulled from the market. I think it's unclear. I just think we shouldn't let (justified) passion on one controversy cloud our understanding of another controversy.
Really? You are against holding people liable for faulty products?
The vaccine was approved by the FDA, they did their part making sure it was safe. 100% certainty is impossible, and people should not be held liable to that.
Here, they pulled off their product off not because it was shown to be unsafe but because it was unprofitable. Due to the controversy, it was a tough sell, and lawsuits are costly no matter if you are right or wrong.
Here's another good article from a more legitimate source.
It seems noteworthy that this was relatively early in the Internet reshaping society: these groups had websites but not massive companies like Facebook promoting them. This ability for people to self-organize and diagnose at a large scale is still having interesting ripple effects, both helping people with unusual conditions which are commonly misdiagnosed and helping build lawsuits or political movements from people who really aren’t interested in accepting the science.
Basically it's easily treated once you are fairly sure you have it with VERY MILD antibiotics that aren't super at risk for resistance. Getting Lyme is a pretty normal and common thing. Akin to catching a cold - it's simply inevitable but you will be treatable.
You also need to check for ticks and putting on DEET is always an option. Thinking about what you wear is also SOP but no big deal (per spicybright's comment).
But honestly WE don't worry about it that much despite being completely endemic.
Class action against any medical product? VERY BAD!
It’s like tainted blood transfusions, glyphosate, vioxx, fen-phen, thalidomide just never happened.
I’m guessing the demographics is on the younger and still thinks they are made from steel.
> The FDA found only 59 such adverse events out of 1.4 million doses administered, and did not find direct scientific evidence that the Lyme vaccine had caused them. Still, the questions over possible unintended effects were enough to dampen enthusiasm, especially after 121 Lymerix recipients filed a class-action lawsuit against the vaccine’s manufacturer.
Reminds me of the entire clusterfuck around the AstraZeneca coronavirus vaccine, with the difference that politicians this time at least pushed for getting vaccinated simply to stop the pandemic.
The media in the UK (Especially the BBC) tried to gaslight the British public with the AZ vaccine and using the 'tHErE iS moStLy nO eVIdEncE' trick repeatedly whilst the reports and concerns of blood clots forming in young people kept increasing.
It was enough from them to not recommend the AstraZeneca vaccine to them and instead give them Pfizer-BioNTech vaccine.
seems it was just not viable commercially.