The article touches this briefly: I think it's horrible that the antivax movement successfully managed to push a working lyme vaccine off the market, based on concerns that turned out to be false.
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.
From what I understand the vaccine wasn't taken off the market by the FDA or science. It was taken off the market by the company producing it, due to pressure from lawsuits and bullshit concerns about risks.
so they would lose a legal challenge to the product's safety....but it's safe? How does that follow?
Liability is just a cost of doing business.
You ever had D&O insurance? Right now in blockchain businesses some get quoted 10+% for coverage, i.e. 100k+ for 1 mil in coverage. Many simply forego the insurance because it's too expensive, and assume the risk.
The product in question had too little upside to offset the liability, that's all.
> so they would lose a legal challenge to the product's safety....but it's safe? How does that follow?
You convince a jury that it is unsafe. Happens all the time. There are many reasons this is easier than it should be.
> The product in question had too little upside to offset the liability, that's all.
The vaccine had a ton of upside...for those receiving it. Like most vaccines, it's not a hugely profitable endeavor for the company producing it, so it wasn't worth all of the baloney being thrown around in court.
For me, at least $100, probably quite a bit more if I thought about it. However, I don't know that you could legally manufacture and sell/group buy such things. Nutraceuticals gets exceptions under the current, disastrous law but this wouldn't qualify.
If enough people pool in, you could underwrite your own clinical trial.
Why not? People have pooled-in to try drugs that are in development and not generally available yet. I can recall numerous instances: pitolisant, rintalimod, hyper immune IG, etc
Some went well, some were disasters, it’s the same as any other clinical trial.
Because in the US legal system that uses laypeople as judges ("juries"), lawsuits tend to be won by those who put on the best play for the juries, not by those who have the better arguments on their side like in Continental Europe. And to make matters worse, sometimes juries go for obscenely excessive damages against companies to "make a point" - just look at the McDonald's coffee case.
The McDonald’s coffee lawsuit was not frivolous[1][2]. The company served coffee at extremely dangerous temperatures. The claimant had severe third degree burns and only wanted McDonald’s to pay for her medical expenses. McDonald’s had a least 700 complaints about the problem before the lawsuit and did nothing until after the lawsuit. Please stop repeating corporate propaganda.
>The company served coffee at extremely dangerous temperatures.
Yes, it was frivolous to many peoples eyes, including mine. McDonald's still serves their coffee at the same temperatures today. They just changed the cups and added warnings at least according to the Wikipedia article on the case.
No, what happened to Stella Liebeck was terrible, and it's right that she had the public's sympathy, however her coffee was not excessively hot by modern standards.
Stella's coffee was served within the temperature range that was, and still is, recommended by professional coffee associations like SCAA and NCA [1]. The NCA recommends that coffee be held and served at around 180-185 deg F (~80-85 deg C), which is likely near the temperature at which Stella was burned. This is a perfectly reasonable service temperature, widely used by coffee shops, restaurants, and home brewing machines to this day.
Stella Liebeck took her cup of coffee and squeezed it between her legs in order to fiddle with the lid. The result was tragic, but completely expected. If I spill a fresh cup of Starbucks coffee on my crotch today, I fully expect to sustain third-degree burns. So I take a little extra care with it until it has cooled to drinking temperature, which happens pretty quickly.
Tea is generally even hotter. Any good tea shop will serve a pot of freshly boiled water, at least twenty degrees hotter than hot coffee. Spilling that on yourself is guaranteed to melt your skin. Great care is warranted.
Again, what happened to Stella was terrible. She didn't deserve it, and she didn't deserve the hate she got afterward. But she did something really stupid. I sympathize, because I do stupid stuff all the time, and I have the scars to remind me.
We're surrounded by extremely dangerous things that require great care to use properly. It's useful for coffee to be held and served hot, just as it's useful for knives to be sharp and cars to be able to reach highway speeds. There will inevitably be accidents, but making the world completely safe for people who use these things carelessly would mean depriving everyone of their proper use.
The McDonald's coffee case is often cited this way, but I think a spilled a coffee that causes third-degree burns and necessitates skin grafts is probably too hot.
The article you linked to notes they still serve the coffee at the same temperturea today, just changing the cups and adding warnings. Probably not too hot or they would have changed it after the lawsuit.
Coffee drinkers like their coffee hot. They tell me the taste is much better when it is brewed hot. I know I was working at McDonalds at the time of the suit, and a few weeks later we adjusted our temperatures to the minimum of the acceptable range from the max, and immediately got complaints. (the complaints didn't start until after the adjustment)
Would you not expect to get coffee made with boiling water? This is what you would get if you made it at home. It can't havr been much hotter than that or it would have evaporated.
If they completed the trials then they'd have some protection against major lawsuits. But no amount of legal protection would prevent low sales due to widespread public mistrust. Especially at a time when Lyme wasn't as rampant and terror-inducing as it is now.
You don't think vendors that sell products that can leave you maimed for the rest of your life, damage or eliminate entirely your earning potential, destroy your marital relations, and destroy future of your children should not be liable for injuries caused by their product?
Really? You are against holding people liable for faulty products?
There wouldn't be a single car being sold if it was the case.
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.
Antivax are people who don't want to take the vaccine. They're not against other people taking vaccines or the development of vaccines. You're likely misinformed.
> I bet you also said “3 weeks to flatten the curve!”
The vaccines were working perfectly in that regard until we hit a wall of people unwilling to take them, which brought us in the US to where we are today when antivax lag hampered us from outrunning the delta variant.
Iceland[1], with >70% vaccination rates, is seeing much different outcomes even in spite of record infections.
> I bet you also said “3 weeks to flatten the curve!”
No, if you check my comment history you will see that I said something along the lines of don't flatten the curve, kill it with longer, harsher lockdowns. Just search for my top downvoted posts. I still maintain that stance, two months of harsh worldwide lockdowns would have killed the spread completely and we would have been completely opened by the middle of last summer. Australia almost managed it alone, and a bit more of the world joining them could have.
The data is not clear on this. Places that did no lockdown like Sweden have been pretty well off, other places that did heavy lock downs like NYC have not fared as well.
Sweeden has much worse results than that peers. NYC didn't do lockdowns well - the state sending infected people to nursing homes is the opposite of lockdowns.
Antivax isn't a single organized group, so being antivax can manifest in many ways. I know antivaxers who harass people who got vaccinated for Covid and protest.
So you're saying the people who were shouting at people standing in line to get a vaccine against covid (which happened plenty of times in Germany and I'm sure in other places, too) are not antivaxxers?
It’s not OR but AND: as described in that article, the law firms didn’t come up with the lawsuit out of the blue but saw the hundreds of people who set up “victims” groups alleging all sorts of injuries caused by the vaccine.
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.
You're oversimplifying the issue which is described in some detail in the article. Yes, the antivax movement is killing thousands of people with their opposition to COVID vaccines, but that doesn't mean every vaccine ever studied was good, or that the FDA is infallible.
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.
Yeah, one of the terrible things about the anti-vax movement is that it makes it hard to distinguish signal from noise when looking at objections or criticisms of any vaccine.
TBE is another terrible tick borne neurological disease that’s increasing rapidly, currently only in Eurasia. There’s no cure, but at least a decent vaccine. It requires booster shots every 5 years though. https://en.wikipedia.org/wiki/Tick-borne_encephalitis
While it might turn deadly, there are many asymptomatic cases, too, so it's not like Ebola or something.
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.
> 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.
> 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.
Imagine if it was impossible for anyone to buy a car ever because when cars first went on the market 59 out of 1.4 million people who bought them got joint pain that may not have even been connected with the cars.
I think a good test for Lyme disease would be more important than a vaccine (which is welcome too if it works well). The problem with Lyme disease is that it's symptoms are very wide and generic, and the commonly used tests are not very reliable. This means that many people live with the disease not aware of it, while others self-diagnose Lyme disease and cure it even if they didn't have it (because they had symptoms like longterm brain fog).
I'm not sure why this is getting downvoted. Testing for lyme really is pretty unreliable. Given how hard it is to reliably test for, we really don't have a good grasp on how prevalent lyme infections are.
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.
It might be downvotes because the op didn’t read the article, which isn’t about a vaccine (the article says there was one but it was discontinued) but about the Lyme equivalent of PREP
I don't understand why there would be a problem testing for borreliosis. It's caused by the borrelia spirochete, which is almost identical to syphilis. The variant of borrelia that causes relapsing fever was one of the very first causative micro-organisms diagnosed because it it so obvious under a low-power microscope. Surely the variant of borrelia named after a town in New England should be as easy to diagnose: if you have the spirochete you have the infection, otherwise you don't.
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.
We keep chickens and I can tell you a domestic chicken roaming free in a high tick area would be gone in a few days. Hawks, foxes, raccoons, coyotes, whatever. They're domesticated and flightless.
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)
As a US new england-er, this is game changer for walking through woods.
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.
My experience with ticks: Closer to the home is where you're going to find the small ones. I've had two on me. First one was easy to spot it looked like a freckle on my knee. The second one I felt the bite (thought it was an itch) and it was on my inner thigh. Not sure if I would have noticed the second one if it wasn't for its haphazard bite. Both latched on when I was in / near the garden.
I've pulled four of the little bastards off me, this summer (so far).
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.
How are you getting checked? I understood (perhaps wrongly) that the blood tests are only accurate well beyond the window with which the medications are effective, creating a chicken and egg issue.
Recovery with Lyme isn’t always forever. It apparently goes into remission and comes back later. Not sure if anyone knows why or how it does that. AFAIK it is only cured if treated very quickly, before the blood tests are accurate.
There's no definitive accredited lab check as far as I know. At least here in Germany the official serologic tests for late stage Lyme can come back negative for years until the disease really progresses badly - even cerebrospinal fluid results may be normal despite neurological symptoms. My specialist uses elispot lab tests for Borrelia b. OspA, antigen and LFA-1 markers.
Other practitioners use westernblot lab results and differential diagnosis.
After a couple of days in the mountains, I found four ticks, and one bite started to turn red after two weeks.
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).
I haven't seen any recently but they were really bad earlier in the summer in Massachusetts to the point that there were a couple walks that I was doing regularly that I decided to forgo for a bit. And anecdotally I've heard a similar story from others. (Fortunately, everything I've seen have been the larger dog ticks.)
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.
Several states felt it was necessary to pass laws regarding Lyme and provide immunity to physicians willing to treat long haul covid...errr long haul lyme patients.
Seems rather naive to presume they had to pass new laws because Lyme has no political headwinds. It has plenty of controversy around it, for better or worse.
I was able to substantiate your comment about the laws being changed in two California bills (2013 AB1278 and 2005 AB592) amending BPC 2234.1 that appears to relax restrictions about treatment of "persistent" Lyme disease.
I do not think it is relevant to the point in this thread that is discussing whether Lyme disease does or does not result in a bullseye rash (Erythema Migrans or EM), and the CDC claiming that in 70-80% of cases the rash is present, which you baselessly disputed and edited your comment to accuse those of downvoting "facts".
As an example of what "evidence" might be, a 2009 paper [1] in Current Problems in Dermatology refers:
> EM is by far the most frequent manifestation of Lyme borreliosis. In the USA, more than 70% of patients registered with Lyme borreliosis had EM [28]. Among 1,471 patients shown to have Lyme borreliosis in an epidemiologic study in southern Sweden, EM was seen in 77% of all cases, and was accompanied by other signs of the disease such as nervous system involvement, arthritis, lymphocytoma and/or carditis in only 6.5% [29]
You can dispute those referred studies if you wish, but I think it would be hard to argue that CDC's statement that Lyme disease is characterized by EM in 70-80% of cases is untrue.
[1] Strle, F., & Stanek, G. (2009). Clinical Manifestations and Diagnosis of Lyme Borreliosis. Lyme Borreliosis, 51–110. doi:10.1159/000213070
You should provide evidence, and when you go back and edit your response to do so, that evidence should be relevant to the discussion at hand.
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.
I think the “on the ground” answer varies depending on you, where you are and what insects are around. 70% of deer tick bites may carry Lyme, but the percentage of insect bites with red rings that are Lyme is probably different. If you’re walking through northeast pine forest or low density suburban woods, assume Lyme!
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.
Those of us who just went through the "Brood X" cicada emergence are now going through a glut of something called "oak mites", which apparently feed on the cicada eggs, but also just get everywhere. They are kind of like chiggers, burrowing under the skin, and are too small to see with the naked eye. The "bites" are particularly itchy and can also cause red splotching that may appear ring-like sometimes. I had a minor freak-out the first time I saw a splotch on my 3-yr-old's back, but it didn't spread and the blotchiness actually went away rather quickly. Luckily, these welts don't seem to last as long as mosquito bites.
Also, a tick-bite splotch doesn't always have to be ring-shaped.
Kris Kirstofferson was told by doctors that his memory loss was either Alzheimer's or Dementia. Another doctor finally decided to test him for lyme. Turns out he he probably got bitten by a tick shooting a movie 10 years prior to the positive test.
https://www.rollingstone.com/feature/kris-kristofferson-an-o...
Huh, I wonder if my executive dysfunction in part could be Lyme disease. I was bitten 10+ years ago - had to pull it off, though it hadn't been there long as it hadn't latched on deeply yet - it did cause a small ring; I did get and take short course of antibiotics immediately after as far as I remember.
I've heard common bloodwork done is very poor at detecting it but is there a better or sure way of detecting it?
The article states that Lyme disease is only transmitted if the tic latches on for over 36 hours. The bacteria is latent in the tic's gut until blood is ingested, at which point it takes 36 hours for the bacteria to multiply and migrate to the tic's salivary glands.
I would get this vaccine yesterday if it were available.
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.
A few houses ago we lived on 2.5 heavily wooded acres in a tick endemic area. Probably got 30 ticks on me from working in the woods.
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.
Actually Lyme is a huge problem in southern Germany as well. Actually it seems that a lot of inflammatory joint problems stem from it that are often wrongly diagnosed.
Which lyme carrying species are you comparing? For Ixodes scapularis compared to Ixodes ricinus I see adult female sizes of 2.5 mm vs 3.6 mm. Not a huge difference. Are you sure you're not comparing larvae or nymphs to adults or even gorged adults?
I've taken a tick out of my dog in Germany and I've taken a tick out of my dog in Canada. The German tick was nearly an inch long with. The Canadian ticks I take out of my dogs are specks with legs, or at the most 2-3cm long.
I'm convinced you can become and/or grow immune to Lyme, though. It's purely anecdotal.
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?).
When you were young, those ticks may not have had lyme. More importantly, you removed them. They have to be attached for 24 hours before the bacteria comes back out of the tick's gut.
I go hiking a lot in the Hudson area of New York and have my concerns about ticks too.
As you said, tall sock are recommended. I also use permethrin on all my lower items of clothing including shoes.
I sometimes also use Off on my exposed skin areas and then check for ticks after my hikes.
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.
Tall socks and trousers sure, but of course they'll get wherever. The only time I had one of them little suckers I only found out the next day... under my wristwatch!
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.
This article gives me hope. My grandfather has Lyme disease and it took a very long time to identify, he’s very old and spends a lot of time outdoors, so the disease has made life much harder. I live in an area with a lot of white tailed deer. I get at least 600 on my property a year, as it’s a highly trafficked area with a lot of bedding and running water. Last winter my wife had one embedded in her that I had to pull out, and I immediately got worried about Lyme disease. Every day around 5pm a baby doe comes to our backyard to eat some greens and I receive my reminder that the summer season is coming to a close and ticks may become rampant again.
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.
Too late for me I found a tick on my shoulder and I tested positive for the Lyme disease. It was treated with antibiotics but my understanding is it can come back.
> 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.
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.
I'd encourage anyone interested to do their own research. The scientific consensus today is what is stated in the linked wikipedia article. There are lot of myths around Lyme disease.
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.
Just like saying it's not true doesn't make it untrue. Which is why I'd encourage everybody to do their own research, and at least know that there are a lot of controversies around this topic.
These are spirochetes in the brain/spine of a dead patient.
She had proven lyme diagnosis in the past, has been given the standard treatment and had good response(!), only to relapse, never recover and went on to develop neurological issues years later, and died.
I had recently read a paper by a professor in Stanford Psychiatry that made very exaggerated claims that would go on to not be replicated to the degree originally made, which I had expected as the treatment used was not a major improvement on the existing methods and that researchers from even prestigious universities might be incentivized to not investigate or report the full truth if they might benefit from it in some way.
While it's interesting that the treatment was "successful" and that symptoms continued, this isn't really a strong statement of support for something like Chronic Lyme Disease or at least its widespread presentation - much more likely a statement of support for Lyme Disease bacteria not always being treated by the regimen, or potentially even that it's easy for someone to get a second infection and have no significant immunity.
I think even the article makes a mention that there is not scientific consensus on many aspects of Lyme disease. It seems it is one of many topics that have studies that may contradict other studies, or explore additional angles.
The article seems to indicate that consensus does not support Chronic Lyme Disease, instead preferring Post Treatment Lyme Disease as a pathology (which doesn't seem unlikely if the disease causes nervous system damage). It also mentions reinfection has been recorded. I'm only really seeing one data point being posted to counter that idea, and that doesn't seem to exclude the reinfection scenario.
I guess the hope for promoters of CLD would be that it's possible to treat the currently irreversible PTLD symptoms using antibiotics, rather than accept something akin to a fibromyalgia diagnosis.
Ah, I didn't see that this was strictly a comment about chronic Lyme. It seems pretty well settled, but that single conflicting case does leave the door open for further study, even if only to determine how a fluke happened.
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.
I know where you're coming from. I believe it is the appropriate attitude in discussing misinformation with, for example, covid.
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.
A decade ago Lyme disease landed me in the hospital with carditis and neurological issues. I still worry that my brain doesn't work as well as it used to, but I don't have symptoms severe enough to make me seek out additional treatment (yet).
It should be noted that while there is some evidence that Disulfiram has effectiveness against Lyme, it's not yet well-studied and the incidence of significant side effects, particularly neurological side effects, during treatment is high enough that I wouldn't risk it. Both the risks and benefits haven't been studied enough to quantify, though I'm glad it worked well for your family.
"It should be noted that while there is some evidence that Disulfiram has effectiveness against Lyme, it's not yet well-studied and the incidence of significant side effects, particularly neurological side effects, during treatment is high enough that I wouldn't risk it."
Oh man, don't I know it. My post was about the question of whether chronic Lyme actually exists, not whether taking disulfiram is a good idea.
Both my wife and son had a VERY difficult time with the disulfiram treatment. My son, in particular, ended up in the ER one night, basically having a psychotic break. That was the day he stopped taking the disulfiram.
BUT it happens that he was almost at the end of the recommended treatment duration anyway, and EVERY indication is that both he and my wife were completely cured by it. This was probably about 2 years ago, and so it's very encouraging that there is no evidence of any recurrence.
As I mentioned, my wife and son were early in the treatment experiments, and they had high doses. The doctor who treated them has now treated a good number of people and has much more experience with different doses. With a lower dose for the same amount of time, cures are less reliable. But there are experiments with low doses for longer times.
I worry that you may have Lyme spirochetes in your brain that may predispose you to Alzheimer's. So it might not be a bad idea to look into more treatment even if you can deal with your current state.
>Note that there is a theory gaining traction recently that Alzheimer's is caused by the brain's attempts to manage active infections.
I think it's always been noted that Alzheimer's risk can increase significantly after certain infections. I don't think this really takes out the genetic component and other environmental components to be contributors, though, and I've not heard much on the front of it being the primary contributor of Alzheimer's risk.
Impossible to do this reliably on a single patient with multiple conditions and advanced age. One could take a guess, but the error bar would be 0.0-1.0
This study set out to prove chronic persistence of the pathogen despite standard treatments, which is rather hard to dispute.
I think the key thing is that it disproves the idea that the bacteria which cause the disease are reliably eliminated by antibiotics, which is typically a key point that those in the "it's not cause by lyme" camp rely on.
Doesn't prove that it is lyme, but it shifts the balance of probablities considerably.
I don't have an opinion on what the "it's not caused by lyme" camp rely on, but the wikipedia page complained about above actually already references another study that found spirochetes in animals after antibiotic treatment.
No doubt the language in that wikipedia page is pretty triggering if you already believe chronic lyme disease is a thing though.
Most CDC / IDSA folks will tell you that a course of antibiotics will rid the body of Lyme in all cases. The presence of spirochetes here should be enough for them to stop using that language. But it likely won't because there appears to be a systemic organizational bias against Lyme as a chronic condition, and I'm not sure why.
Kind of reminds me of Alzheimer's disease and the pervasive insistence that it's cause by misfokded protiens even though so many treatments following that assumption failed to cure it. Sometimes an idea is just hard to introduce or root out in academia
Inter_netuser: That Frontiers paper is about as reliable as Big Foot hunters claiming they finally found him. The authors Brian Fallon and Monica Embers have been trying to prove chronic Lyme beliefs for many years.
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.
The study contains rather painfully obvious images of the pathogen under the microscope in the brain/spine.
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?
The recalcitrance of the broader medical research community to acknowledge that spirochetes can persist after antibiotics and continue to wreak havoc, is truly astounding. You'd think after all the "whoops, my bad" moments in history - handwashing, thalidomide, GRID/AIDS, to name a few, they would learn to be a bit more conservative in their stance, e.g. "we have not found direct evidence of chronic Lyme, but it has a plausible mechanism and widespread reports."
I've already seen the needle shift from "Lyme is impossible after antibiotics" to "well I guess some cases escape first round of treatment."
Lyme is just one of the horrible diseases ticks carry. Would be nice to cull most of the deer in the North East. A few decades ago they were rare, now they're everywhere.
The deer themselves are a problem in the northeast. They are greatly overpopulated and eat the native understory, preventing the next generation of trees from growing past adolescence. As the existing trees slowly die, there will be none younger to replace them.
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.
There have been times of higher deer population. The population was much higher in PA when my dad was a kid. It currently sits around 30 deer per square mile, which 3 times higher than pre colonial times.
In my area there are over 120 deer per square mile currently. This number was historically 10, when predators existed. Studies have shown that around 30 deer per square mile is when biodiversity starts to suffer.
I live in the forest and manage my lot with guidance from foresters and nearby park rangers. It may take a hundred years for these current trees to die, but there's nothing to replace them. You can walk the understory and see knee-high trees that can't grow further because the deer prune their leaves.
In thought the moose problem in Sweden was big. That is just ridiculous. We have a moose population that is waaay higher than ever before because we killed most large predators, and the people responsible for keeping the population down (hunters) want a much larger population than is environmentally defensible.
The mice are the main component to the lyme lifecycle. There is a researcher working to give mice immunity using crispr.
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?
Definitely. I bought tick tubes which target the mice. I've had one on me since putting them out in late April. I think they're working but need more time to test.
> Generally, the deer are only overpopulating (at least to the extent you describe) in areas that aren't hunted
Central Massachusetts has a very active deer hunting community. I never have any trouble filling my freezer with free venison every fall. But the deer population is still four times the sustainable level as set by the state Wildlife dept and local conservation groups.
Hunting isn't necessarily enough to control the population.
It depends on a number of factors. Access is a huge one where I'm at. Public lands can be basically hunted out while the deer have moved onto private lands where nobody hunts and created huge herds (30+).
If your area doesn't have the access issue, then I would guess it could be an issue with the number of hunters - if there aren't enough, then they can't harvest the number required to bring down the population (or the limits make it difficult - seems like that's the case the way they handle doe permits). Many states have a program that allows hunters to donate their deer to a food bank through a participating butcher. This can make a big impact in areas that allow more harvests (MD allows 10 doe per year/season without any special permits).
Both small mammal and large mammal hosts are required in the deer tick lifecycle.
White-footed mice are the most common host for the small mammal portion (but there are many options), and deer are the most common host for the large mammal portion.
Deer are easier to count and control than mice/voles/moles/chipmunks/etc.
So controlling deer populations is more likely to be successful in breaking the deer tick lifecycle.
So sayeth a publication from researchers at the University of Connecticut, at least.
I'm sympathetic with the almost-pet Bambi-loving crowd. But Lyme is real and not at all cuddly. Bring back the wolves!
Coyotes have been introduced in the east in the past. They generally don't kill healthy adult deer (maybe), but they do kill a decent number of fawns. They aren't enough to fully control the population, especially in the suburbs.
The advantage of going after the mice is that they can use crispr to give them immunity. It could be used on deer, but would probably have more push back. Tick tubes have already been shown to be effective at the small mammal level.
Yep, coyotes are not pack hunters in the way that wolves are.
Interestingly, the coyotes in the US East are apparently hybrid "coywolves". They are larger than western coyotes, but still not big enough to take down an adult deer, and they still do not hunt in packs.
If you have a large area to cover, Tick Tubes(tm) can get expensive. You can make your own pretty easily for about 1/20th of the price: toilet paper rolls, cotton balls, and Permethrin diluted to ~3%.
I'm so happy to see this. My dad suffered from Lyme's for years. He died 3 months ago due to Lyme's related complications. I really hope more people don't have to go what he went through.
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
> a relatively uncommon treatment for Lyme in which doctors siphon some blood, blast it with electromagnetic waves, and then drip it back into the bloodstream
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.
Ionizing radiation. Ingenious approach, sort of a pseudo-vaccine, kills and breaks apart a pathogen in the blood that was taken and when re-injected it presents a greater attack surface for the immune system to learn about the pathogen. Also whatever active measures the pathogen cells in the sample were taking to evade attention are no longer in effect since it's dead.
I caught Lyme earlier this year. Recently moved to upstate NY (20 miles from Lyme, CT) and tick checks are a daily thing. Found an adult embedded in my side. Developed a 103ºF fever and fatigue. Dr. took blood for the Lyme test but didn't wait for a positive and prescribed 2 weeks of Doxycycline.
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.
I know this is about Lyme disease, but let me add another word of caution while we are discussing ticks. Two years ago I was bit by the Lone Star tick. Since that time I developed an allergy to all red meat. It was hard to diagnose and a few of the doctors I worked with along the years still don’t believe its true. If your interested in learning more search for Alpha Gal. There is an excellent Radio Lab podcast about it.
Yeah I think of it almost as a mathematical problem. There are simply more ways for a human body to go wrong than any number of doctors possibly can comprehend :) There is a very very long tail of diseases and disorders.
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!
A doctor's opinion on disease isn't merely an opinion, it's an educated guess based on experience and qualifications. New diseases and research are constantly appearing, thousands of articles are written each year. We can't expect doctors to know everything, but we can expect them to have more informed opinions, on average, than non-doctors.
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.
Indeed, there is plenty of distrust. If they are doing such a great job though, why the distrust?
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.
> 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.
Great example of reporting bias. Nobody goes around telling everybody "all is fine". That's not news and nobody wants to hear it. Something needs to be special, out of the ordinary, a sensation even. "All my doctors suck, listen to my 10-minute rant about my odyssey" is what people _think_ will be interesting.
Ever heard a news anchor say "Nothing remarkable happened today. Have a good evening." Of course not. They will report something, no matter how unimportant, ridiculous, sensationalist.
trend of anti-intellectualism and distrust of doctors
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.
You'd be surprised how many physicians and nurses refuse vaccination. You'll just never hear about it. AMA is one powerful beast, I wish I had a union like that.
However, sometimes fun little things like this happen that show their true colors:
"Starting in early 2003, the United States government started a program to vaccinate 500,000 volunteer health care professionals throughout the country. Recipients were healthcare workers who would be first-line responders in the event of a bioterrorist attack. Many healthcare workers refused, worried about vaccine side effects, and healthcare systems refused to participate. Fewer than 40,000 actually received the vaccine.[29]"
That doesn't mean distrust of vaccination in general - at least by doctors. It was for a potential bioterrorist attack. It perhaps more reflects the low likelihood or belief that there would be a small pox attack.
If you assume the low likelyhood of the attack was the reason, that means 90% of those physicians could be lying. The stated reason for refusal was concerns about side effects. It's in the quote.
What you stated as a fact, 96% vaccination rate, is actually a self-reported survey.
Why do a survey when public health CDC records could simply be matched with the physician licensing registrars?
Seems an automatic search like that would save physicians their valuable time, aren't they very busy with a pandemic right now? Instead of hard data from CDC, we get self-reported, likely anonymous, self-reported survey.
It's always cost-benefit. Relative risk of side effect directly relates to likelihood.
Risk of side effects vs benefit of vaccine.
I am not likely to take an HIV vaccine, since my personal chance of contracting HIV is incredibly low. So any side effect isn't "worth it" -- even a sore arm. But that doesn't mean I'm anti-vaccine.
I also don't wear a bullet proof vest around because it's too heavy ("side effect"). Does that mean I'm anti-bullet proof vest? No. But I would wear a bullet proof vest in a war zone -- even if it's heavy.
If there was a widespread small pox outbreak in the U.S., I'm certain more than 10% of physicians would take the vaccine. Does that mean they were lying before? No.
Because even if I did point to official stats, you would say they are just lying?
A few months prior to the AMA survey, Long Term Care Facilities reported a 75% vaccination rate amongst physicians at their facilities. So presumably higher now.
The stated reason for refusal was concerns about side effects.
As another comment already mentioned, smallpox vaccines (at least historically) tended to have undesirable side effects, like permanent scars. Smallpox vaccination is probably not a good proxy for vaccination overall. It's not worth getting vaccinated for smallpox unless you expect a decent risk of exposure.
I'd qualify that: "...we can expect them to have more informed opinions, on average, _for any random condition_, than non-doctors."
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.
The English language has a serious deficiency in the term "research".
You can do "research" by spending your days in a lab, formulating hypotheses, doing experiments, reading related academic work, drawing conclusions, publishing their findings.
You can do "research" by googling, reading blog posts and wikipedia articles, watching Youtube videos, following telegram links and possibly reading a popular-science book.
These two things are very different activities and produce very different bodies of knowledge. "Do your own research!" is a common sentiment in Covid skeptic circles. It doesn't mean being in a lab. It means following links in your Google bubble. That doesn't necessarily produce useful knowledge. Properly trained researchers are aware of things like confirmation bias, selection bias, recollection bias. The "I did my own research crowd" is not and suffers seriously from it.
Using the term with the doctor is blurring the line between both versions. They don't stand in the lab and "do their own research", but they are more educated in the medical field than the common patient and have context.
> they are more educated in the medical field than the common patient and have context.
Pompous credentialism.
This is a hacker forum. Are people outside of universities unable to learn computer science, applied math, sw dev? Sure, biomed is a different field, but that’s all it is. A different knowledge base, there are more and more biomed hackers out there too, not to mention quite a few patients are PhDs and MDs themselves.
Geez, from your words patients are simply all permanently dumb as bricks and unable to ever learn, where as MDs always know more than patients, despite having never ever done any actual research in their entire training and subsequent career.
Nice set of preconceived notions and biases there, fellow researcher.
> Geez, from your words patients are simply all permanently dumb as bricks and unable to ever learn, where as MDs always know more than patients, despite having never ever done any actual research in their entire training and subsequent career.
Wow, it's hard to misconstrue my post more than that. Impressive!
Of course there are patients with more clue than the average patient. And of course there are incompetent doctors. But the common doctor is more educated in the medical field than the common patient.
Don't believe that? Next time you have surgery, just demand that instead of the surgeon, the next patient in the waiting room does the surgery on you. That's roughly what you are babbling about. Nothing they couldn't learn with a bit of youtube, eh?
> despite having never ever done any actual research in their entire training and subsequent career.
The post you replied to literally contains the words 'They don't stand in the lab and "do their own research", '
We, as patients, pass around these apocryphal stories around, but don't look at the opposite experience of doctors. Doctors constantly, and I mean multiple times per day, get patients in that tell them their symptoms are due to disease or condition or complex X. Time and again, the patient is completely wrong. No, you don't have cancer, your lymph node hurts because it is fighting off an infection, and besides if it was cancer, the node wouldn't hurt. No, you don't have lyme disease, you're sore because you started gardening again and you are 50. No, you don't have an ulcer, you're just eating too much ice cream before going to bed.
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."
Hilarious you brought this up: "No, you don't have an ulcer, you're just eating too much ice cream before going to bed."
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 agree with the systemic problem that our healthcare system doesn't want to get to the bottom of symptoms. It drives me crazy, especially the "most cancer is treatable if caught early, but no we won't give you a diagnostic test to actually catch cancer early". I have direct experience with this, pushing through multiple doctors that ended with my thyroid cancer diagnosis.
My doctor at the time was actually really good, not because he was good at diagnosing, but he had enough experience to recognize his inability to do so and would always send me to an expert. He literally was 100% wrong about all of my major diagnoses (my hurt knee actually was a torn ACL, my abdominal pain actually was a hernia, my throat nodule actually was cancer), but he always sent me to a specialist to be sure. And he knew really good specialists. "I don't think it is X, but lets have a specialist verify" was his common refrain.
I was bit by a tick in 2010. I pulled it off my forearm and it left a protrusion that lasted about 2 weeks. No rings. I got sick with a flu around this time. Went to the doctor, the lyme test came back negative.
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.
> It was hard to diagnose and a few of the doctors I worked with along the years still don’t believe its true.
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.
I've generally had better experiences with DOs than MDs when it comes to listening and working with me to understand how and what I feel. On the other hand some people may prefer the more "clinical" (not sure if that's the best word) approach of MDs. So just something to keep in mind if you're unhappy with your current doctor.
In some parts of the world (e.g. the Eastern Bloc) you find tick-borne encephalitis. That's a horrible disease that can cause cerebral and neural damage. What's more, the number of reported human cases of TBE in all endemic regions of Europe have increased by almost 400% within the last three decades.
Thanks for highlighting this. While most hikers are aware of the dangers of Lyme disease, the encephalitis is less well-known. I only found out about it while hiking in Slovakia a few years ago. At that stage, the hiking trip had started and it was too late to get a vaccine.
My area has a relatively high infection rate, but most people I know aren't vaccinated, even if they're somewhat aware of the dangers. Having a vaccine is not enough, you also need people to use it.
Fun fact, since I've been vaccinted against TBE, I haven't found even a single tick biting me. And I spend even more time in the nature now since the pandemic has started.
Honestly, I live in the the WORST NY county for Lyme but it really isn't that big a deal. The country across in Vermont is Vermont's top Lyme county. And I live in the woods.
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.
I believe you intended this to be reassuring but consider how it reads to the many people who’ve had significant, long-term effects from the disease. Maybe tone it down a bit on the “no big deal” front and focus on the key part: “if promptly diagnosed” with the advice about prevention and detection that implies.
I think it's just a difference in perspective from someone living where it's endemic and pretty much impossible to outright prevent. You get used to it. You hear similar perspectives on malaria from people living in countriew where that is rife. And indeed on other dangers. For example, australians don't tend to see poisonous snakes or spiders as a big deal.
Oh, definitely — my point was simply that it's good to think about how that would sound to someone who _isn't_ used to that risk. Saying “no big deal” runs the risk of sounding like ”I don't know what I'm talking about” or even “I'm downplaying this for some reason”. I don't think the person I replied to was in either category but I do think with medical concerns it's important to acknowledge that someone's concerns are reasonable before introducing some things which might make the risk more palatable (e.g. doctors now are far more likely to quickly recognize it and treat it aggressively since there's been a lot of awareness that this is becoming endemic in many areas where it didn't used to be common).
There are people in this thread who have had people close to them die from Lyme disease complications, and the article describes the experience of an avid runner who has been sidelined by the disease.
I’ve found the biggest places to watch out for ticks are where not many people go. Little travelled trails. The heavily trafficked areas seem to have way less ticks.
My working theory is the deer to human ratio of an area determines how many deer ticks.
My partner got a bullseye-inducing tick byte in our front yard in suburban upstate NY. Hardly little-traveled.
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.
I am pretty they do, while I haven't seen them in my yard, they love my neighbor's ~1acre lawn abutting woods across the street. I see them hanging out there all hours of the day.
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.
Edible vaccines are not easy. There's a reason you are still getting injections.
Shooting them with darts, well, those would be a hell of a lot more expensive than bullets. It seems ... fraught with a lot of potential for unexpected effects.
Based on our experience, with anywhere from 2 to about 15 in a flock, guineas aren't super effective at reducing ticks. They're also very noisy, leave big turds all over the place, and at least in our rural New England area, serve to attract predators.
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.
My grandma just got Lyme with pretty high certainty in her own garden. In suburbia in a million people city. With a deer:people ratio of about 0.00.
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.
I'm a bit confused here... I thought a vaccine that protected you from Lyme disease already existed? I grew up in Latvia, and it was pretty common to get that jab. You have to get boosters every 5 years or so (which I haven't really done since I moved away) but they're supposed to protect you from the encephalitis ticks? Sorry if the terminology is wrong here.
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.
Tick-borne encephalitis and Lyme disease are different things. You are right that there is a vaccine against the first one, while Lyme vaccine has an interesting history[1].
There used to be a human vaccine for Lyme, but it was pulled from market about 20 years ago. Interestingly, this Lyme vaccine was one of the first victims of the modern anti-vax movement.
I'd rather see treatment than a vaccine. I do believe most cases of Lyme are trivial, but some can linger and cause horrible issues. Disulfiram sounds very promising.
427 comments
[ 3.0 ms ] story [ 346 ms ] threadEvery time you get a tick you should remember that you could be safe from lyme, but the antivax movement took that away from us.
Liability is just a cost of doing business.
You ever had D&O insurance? Right now in blockchain businesses some get quoted 10+% for coverage, i.e. 100k+ for 1 mil in coverage. Many simply forego the insurance because it's too expensive, and assume the risk.
The product in question had too little upside to offset the liability, that's all.
You convince a jury that it is unsafe. Happens all the time. There are many reasons this is easier than it should be.
> The product in question had too little upside to offset the liability, that's all.
The vaccine had a ton of upside...for those receiving it. Like most vaccines, it's not a hugely profitable endeavor for the company producing it, so it wasn't worth all of the baloney being thrown around in court.
People do group buys for all sorts of nutraceticals, small molecules, and even some biologics.
Why not? People have pooled-in to try drugs that are in development and not generally available yet. I can recall numerous instances: pitolisant, rintalimod, hyper immune IG, etc
Some went well, some were disasters, it’s the same as any other clinical trial.
[1] https://youtu.be/s_jaU5V9FUg
[2] https://www.vox.com/policy-and-politics/2016/12/16/13971482/...
Yes, it was frivolous to many peoples eyes, including mine. McDonald's still serves their coffee at the same temperatures today. They just changed the cups and added warnings at least according to the Wikipedia article on the case.
Stella's coffee was served within the temperature range that was, and still is, recommended by professional coffee associations like SCAA and NCA [1]. The NCA recommends that coffee be held and served at around 180-185 deg F (~80-85 deg C), which is likely near the temperature at which Stella was burned. This is a perfectly reasonable service temperature, widely used by coffee shops, restaurants, and home brewing machines to this day.
Stella Liebeck took her cup of coffee and squeezed it between her legs in order to fiddle with the lid. The result was tragic, but completely expected. If I spill a fresh cup of Starbucks coffee on my crotch today, I fully expect to sustain third-degree burns. So I take a little extra care with it until it has cooled to drinking temperature, which happens pretty quickly.
Tea is generally even hotter. Any good tea shop will serve a pot of freshly boiled water, at least twenty degrees hotter than hot coffee. Spilling that on yourself is guaranteed to melt your skin. Great care is warranted.
Again, what happened to Stella was terrible. She didn't deserve it, and she didn't deserve the hate she got afterward. But she did something really stupid. I sympathize, because I do stupid stuff all the time, and I have the scars to remind me.
We're surrounded by extremely dangerous things that require great care to use properly. It's useful for coffee to be held and served hot, just as it's useful for knives to be sharp and cars to be able to reach highway speeds. There will inevitably be accidents, but making the world completely safe for people who use these things carelessly would mean depriving everyone of their proper use.
1 - https://www.ncausa.org/About-Coffee/How-to-Brew-Coffee
https://en.m.wikipedia.org/wiki/Liebeck_v._McDonald's_Restau...
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.
Class action against car manufacturer, Toyota, because of 200-400 injuries from airbags? GOOD
Class action against any medical product? BAD until proven otherwise.
It’s like tainted blood transfusions, vioxx, fen-phen, thalidomide just never happened.
I’m guessing the demographics is on the younger and still thinks they are made from steel.
You are arguing with strawman, noone said this.
I bet you also said “3 weeks to flatten the curve!”
The vaccines were working perfectly in that regard until we hit a wall of people unwilling to take them, which brought us in the US to where we are today when antivax lag hampered us from outrunning the delta variant.
Iceland[1], with >70% vaccination rates, is seeing much different outcomes even in spite of record infections.
[1] https://www.washingtonpost.com/world/europe/iceland-covid-su...
If 99% vaccination rate will not achieve herd immunity, what will?
This is misinformation. Israel has the highest vaccination rate in the world. 50% of their new cases are “breakthrough cases”
No, if you check my comment history you will see that I said something along the lines of don't flatten the curve, kill it with longer, harsher lockdowns. Just search for my top downvoted posts. I still maintain that stance, two months of harsh worldwide lockdowns would have killed the spread completely and we would have been completely opened by the middle of last summer. Australia almost managed it alone, and a bit more of the world joining them could have.
Here's another good article from a more legitimate source.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2870557/
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.
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.
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.
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.
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)
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.
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.
The frontiers study shows bacteria persists inside the brain.
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.
Other practitioners use westernblot lab results and differential diagnosis.
They claim it can be cultured too.
https://www.frontiersin.org/articles/10.3389/fneur.2021.6280...
Check out also Dualdur, received 3MEur from EU in 2018.
https://lymediagnostics.com/why-dd/
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).
https://frylabs.com/resources/lyme-disease-and-detection/
The CDC warns against nonstandard testing: https://www.cdc.gov/lyme/diagnosistesting/labtest/otherlab/i...
You'd be surprised how little regulation that some lab testing gets: https://sciencebasedmedicine.org/new-fda-regulatory-role-thr...
There are a lot more predatory labs than Theranos out there...
According to the CDC, its 70-80%[0].
[0] https://www.cdc.gov/lyme/signs_symptoms/index.html
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.
Seems rather naive to presume they had to pass new laws because Lyme has no political headwinds. It has plenty of controversy around it, for better or worse.
I do not think it is relevant to the point in this thread that is discussing whether Lyme disease does or does not result in a bullseye rash (Erythema Migrans or EM), and the CDC claiming that in 70-80% of cases the rash is present, which you baselessly disputed and edited your comment to accuse those of downvoting "facts".
As an example of what "evidence" might be, a 2009 paper [1] in Current Problems in Dermatology refers:
> EM is by far the most frequent manifestation of Lyme borreliosis. In the USA, more than 70% of patients registered with Lyme borreliosis had EM [28]. Among 1,471 patients shown to have Lyme borreliosis in an epidemiologic study in southern Sweden, EM was seen in 77% of all cases, and was accompanied by other signs of the disease such as nervous system involvement, arthritis, lymphocytoma and/or carditis in only 6.5% [29]
You can dispute those referred studies if you wish, but I think it would be hard to argue that CDC's statement that Lyme disease is characterized by EM in 70-80% of cases is untrue.
[1] Strle, F., & Stanek, G. (2009). Clinical Manifestations and Diagnosis of Lyme Borreliosis. Lyme Borreliosis, 51–110. doi:10.1159/000213070
80% develop EM https://www.aafp.org/afp/2012/0601/p1086.html
You can easily find a lot of sources in this ballpark.
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.
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.
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...
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?
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.
These are spirochetes in the brain/spine of a dead patient who had proven lyme diagnosis in the past, and donated the brain for research.
Full study: https://www.frontiersin.org/articles/10.3389/fneur.2021.6280...
The onus now on the "cOnSpIraCy" camp to provide scientific evidence to the contrary.
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.
Do you accept that rather obvious finding, or "cOnSpIrAcY" is your main counter-argument?
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.
Ticks in Germany are no longer than about 1 cm when saturated, at most. An inch sounds incredible to me - probably a different species?
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?).
or
https://www.lymedisease.org/tick-lyme-transmission-time/ "Study finds nymphal ticks can transmit Lyme within 12 hours"
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.
https://imgur.com/a/xgF5Zw2
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.
https://www.bc.cas.cz/en/news/news-detail/5483-a-new-lyme-va...
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.
> 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.
Simply saying this doesn't make it true. This is not true and that Wikipedia article is outdated.
once YOU read that paper, please post YOUR peer review summary here.
enough with appeals to authority. wikipedia is not even an authoritative source to begin with.
https://www.vice.com/en/article/m7jk9q/rick-sponaugle-pots-c...
Edit: Is Lyme-literate another term you and your internet friends use?
Look at the case against him: https://mqa-internet.doh.state.fl.us/MQASearchServices/Healt...
Scam Dr's like this are causing the FUD you are spreading.
These are spirochetes in the brain/spine of a dead patient.
She had proven lyme diagnosis in the past, has been given the standard treatment and had good response(!), only to relapse, never recover and went on to develop neurological issues years later, and died.
The brain was donated and autopsied.
Full study: https://www.frontiersin.org/articles/10.3389/fneur.2021.6280...
Are you saying the lead scientist on this paper, from the Tulane National Primate Research Center is a scammer? (https://en.wikipedia.org/wiki/Tulane_National_Primate_Resear...)
Seems like a big accusation.
While it's interesting that the treatment was "successful" and that symptoms continued, this isn't really a strong statement of support for something like Chronic Lyme Disease or at least its widespread presentation - much more likely a statement of support for Lyme Disease bacteria not always being treated by the regimen, or potentially even that it's easy for someone to get a second infection and have no significant immunity.
I guess the hope for promoters of CLD would be that it's possible to treat the currently irreversible PTLD symptoms using antibiotics, rather than accept something akin to a fibromyalgia diagnosis.
https://www.frontiersin.org/articles/10.3389/fneur.2021.6280...
Pretty damning.
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.
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.
It should be noted that while there is some evidence that Disulfiram has effectiveness against Lyme, it's not yet well-studied and the incidence of significant side effects, particularly neurological side effects, during treatment is high enough that I wouldn't risk it. Both the risks and benefits haven't been studied enough to quantify, though I'm glad it worked well for your family.
Source on high incidence of side effects: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7184924/
Oh man, don't I know it. My post was about the question of whether chronic Lyme actually exists, not whether taking disulfiram is a good idea.
Both my wife and son had a VERY difficult time with the disulfiram treatment. My son, in particular, ended up in the ER one night, basically having a psychotic break. That was the day he stopped taking the disulfiram.
BUT it happens that he was almost at the end of the recommended treatment duration anyway, and EVERY indication is that both he and my wife were completely cured by it. This was probably about 2 years ago, and so it's very encouraging that there is no evidence of any recurrence.
As I mentioned, my wife and son were early in the treatment experiments, and they had high doses. The doctor who treated them has now treated a good number of people and has much more experience with different doses. With a lower dose for the same amount of time, cures are less reliable. But there are experiments with low doses for longer times.
I worry that you may have Lyme spirochetes in your brain that may predispose you to Alzheimer's. So it might not be a bad idea to look into more treatment even if you can deal with your current state.
If you do, I'd recommend talking to my wife and son's doctor, https://lymediseaseassociation.org/blogs/lda-guest-blogs/ken...
I think it's always been noted that Alzheimer's risk can increase significantly after certain infections. I don't think this really takes out the genetic component and other environmental components to be contributors, though, and I've not heard much on the front of it being the primary contributor of Alzheimer's risk.
> 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.
Doesn't prove that it is lyme, but it shifts the balance of probablities considerably.
No doubt the language in that wikipedia page is pretty triggering if you already believe chronic lyme disease is a thing though.
It's quite disgusting and begets further questions as to why such attitudes towards Lyme exist in the first place.
You're not wrong, but they continue to lean on the "evidence doesn't support" angle. At some point that looks like bias.
Now we have human brain autopsies. Plenty of denial right in this thread.
And then people wonder why people don't trust physicians and do not vaccinate.
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."
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.
As long as wild biology subsists on killing and eating, there's no problem with humans doing the same in order to restore balance.
It also helps to reintroduce natural predators when possible. But in absence of that strategy, humans can do the job too.
I live in the forest and manage my lot with guidance from foresters and nearby park rangers. It may take a hundred years for these current trees to die, but there's nothing to replace them. You can walk the understory and see knee-high trees that can't grow further because the deer prune their leaves.
In thought the moose problem in Sweden was big. That is just ridiculous. We have a moose population that is waaay higher than ever before because we killed most large predators, and the people responsible for keeping the population down (hunters) want a much larger population than is environmentally defensible.
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?
You could also get more ppl into gardening. Gardeners end up hating deer after their gardens get raided once or twice.
Central Massachusetts has a very active deer hunting community. I never have any trouble filling my freezer with free venison every fall. But the deer population is still four times the sustainable level as set by the state Wildlife dept and local conservation groups.
Hunting isn't necessarily enough to control the population.
If your area doesn't have the access issue, then I would guess it could be an issue with the number of hunters - if there aren't enough, then they can't harvest the number required to bring down the population (or the limits make it difficult - seems like that's the case the way they handle doe permits). Many states have a program that allows hunters to donate their deer to a food bank through a participating butcher. This can make a big impact in areas that allow more harvests (MD allows 10 doe per year/season without any special permits).
White-footed mice are the most common host for the small mammal portion (but there are many options), and deer are the most common host for the large mammal portion.
Deer are easier to count and control than mice/voles/moles/chipmunks/etc.
So controlling deer populations is more likely to be successful in breaking the deer tick lifecycle.
So sayeth a publication from researchers at the University of Connecticut, at least.
I'm sympathetic with the almost-pet Bambi-loving crowd. But Lyme is real and not at all cuddly. Bring back the wolves!
The advantage of going after the mice is that they can use crispr to give them immunity. It could be used on deer, but would probably have more push back. Tick tubes have already been shown to be effective at the small mammal level.
It will likely require a combination to control.
Interestingly, the coyotes in the US East are apparently hybrid "coywolves". They are larger than western coyotes, but still not big enough to take down an adult deer, and they still do not hunt in packs.
If you have a large area to cover, Tick Tubes(tm) can get expensive. You can make your own pretty easily for about 1/20th of the price: toilet paper rolls, cotton balls, and Permethrin diluted to ~3%.
"...but still not big enough to take down an adult deer, and they still do not hunt in packs."
Coyotes will hunt in packs or alone. They generally go for fawns, but they do occasionally take adult deer (there's even video of it).
https://www.pgc.pa.gov/Education/WildlifeNotesIndex/Pages/EC...
https://www.trappermag.com/article-index/deer-predation-coyo...
Wolves are bigger, stronger, and cooperative in larger packs. Coyotes are more opportunistic and ad hoc, and easily scared off.
The net is that wolves have far more success with large prey.
Feral (or wandering) domesticated dogs will sometimes hunt together too, but their coordination is limited. Wolves are impressive creatures.
[1] Check out these tick tubes: https://blogs.cornell.edu/nysipm/2019/06/28/dont-make-your-o...
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
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".
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.
https://elemental.medium.com/the-mouse-cure-48f81e7a3fec
a medical opinion is just that. an opinion. consensus often takes decades to change.
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!
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.
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.
> However, stories about that gem of a doctor they finally found over the years are very common. Most physician suck, not sure why.
Great example of reporting bias. Nobody goes around telling everybody "all is fine". That's not news and nobody wants to hear it. Something needs to be special, out of the ordinary, a sensation even. "All my doctors suck, listen to my 10-minute rant about my odyssey" is what people _think_ will be interesting.
Ever heard a news anchor say "Nothing remarkable happened today. Have a good evening." Of course not. They will report something, no matter how unimportant, ridiculous, sensationalist.
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.
However, sometimes fun little things like this happen that show their true colors:
"Starting in early 2003, the United States government started a program to vaccinate 500,000 volunteer health care professionals throughout the country. Recipients were healthcare workers who would be first-line responders in the event of a bioterrorist attack. Many healthcare workers refused, worried about vaccine side effects, and healthcare systems refused to participate. Fewer than 40,000 actually received the vaccine.[29]"
https://en.wikipedia.org/wiki/Smallpox_vaccine
over 90% refused.
Meanwhile, 96% of physicians are vaccinated against COVID - https://www.ama-assn.org/press-center/press-releases/ama-sur...
What you stated as a fact, 96% vaccination rate, is actually a self-reported survey.
Why do a survey when public health CDC records could simply be matched with the physician licensing registrars?
Seems an automatic search like that would save physicians their valuable time, aren't they very busy with a pandemic right now? Instead of hard data from CDC, we get self-reported, likely anonymous, self-reported survey.
What do they have to hide?
Risk of side effects vs benefit of vaccine.
I am not likely to take an HIV vaccine, since my personal chance of contracting HIV is incredibly low. So any side effect isn't "worth it" -- even a sore arm. But that doesn't mean I'm anti-vaccine.
I also don't wear a bullet proof vest around because it's too heavy ("side effect"). Does that mean I'm anti-bullet proof vest? No. But I would wear a bullet proof vest in a war zone -- even if it's heavy.
If there was a widespread small pox outbreak in the U.S., I'm certain more than 10% of physicians would take the vaccine. Does that mean they were lying before? No.
covid 96% status is from an anonymous survey.
Why not just get CDC to provide actual hard data? Surely they keep vaccination records?
Should vaccination status of physician, as verified by the CDC, be public data?
A few months prior to the AMA survey, Long Term Care Facilities reported a 75% vaccination rate amongst physicians at their facilities. So presumably higher now.
https://www.cdc.gov/mmwr/volumes/70/wr/mm7030a2.htm
As another comment already mentioned, smallpox vaccines (at least historically) tended to have undesirable side effects, like permanent scars. Smallpox vaccination is probably not a good proxy for vaccination overall. It's not worth getting vaccinated for smallpox unless you expect a decent risk of exposure.
What do they have to hide?
Privacy should be the default.
Do you want to go to anti-vaxx doctor?
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.
https://en.m.wikipedia.org/wiki/The_Chicken_and_the_Pig
You can do "research" by spending your days in a lab, formulating hypotheses, doing experiments, reading related academic work, drawing conclusions, publishing their findings.
You can do "research" by googling, reading blog posts and wikipedia articles, watching Youtube videos, following telegram links and possibly reading a popular-science book.
These two things are very different activities and produce very different bodies of knowledge. "Do your own research!" is a common sentiment in Covid skeptic circles. It doesn't mean being in a lab. It means following links in your Google bubble. That doesn't necessarily produce useful knowledge. Properly trained researchers are aware of things like confirmation bias, selection bias, recollection bias. The "I did my own research crowd" is not and suffers seriously from it.
Using the term with the doctor is blurring the line between both versions. They don't stand in the lab and "do their own research", but they are more educated in the medical field than the common patient and have context.
Pompous credentialism.
This is a hacker forum. Are people outside of universities unable to learn computer science, applied math, sw dev? Sure, biomed is a different field, but that’s all it is. A different knowledge base, there are more and more biomed hackers out there too, not to mention quite a few patients are PhDs and MDs themselves.
Geez, from your words patients are simply all permanently dumb as bricks and unable to ever learn, where as MDs always know more than patients, despite having never ever done any actual research in their entire training and subsequent career.
Nice set of preconceived notions and biases there, fellow researcher.
Wow, it's hard to misconstrue my post more than that. Impressive!
Of course there are patients with more clue than the average patient. And of course there are incompetent doctors. But the common doctor is more educated in the medical field than the common patient.
Don't believe that? Next time you have surgery, just demand that instead of the surgeon, the next patient in the waiting room does the surgery on you. That's roughly what you are babbling about. Nothing they couldn't learn with a bit of youtube, eh?
> despite having never ever done any actual research in their entire training and subsequent career.
The post you replied to literally contains the words 'They don't stand in the lab and "do their own research", '
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.
My doctor at the time was actually really good, not because he was good at diagnosing, but he had enough experience to recognize his inability to do so and would always send me to an expert. He literally was 100% wrong about all of my major diagnoses (my hurt knee actually was a torn ACL, my abdominal pain actually was a hernia, my throat nodule actually was cancer), but he always sent me to a specialist to be sure. And he knew really good specialists. "I don't think it is X, but lets have a specialist verify" was his common refrain.
But, yeah, the system sucks now.
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.
https://www.frontiersin.org/articles/10.3389/fneur.2021.6280...
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.
https://en.wikipedia.org/wiki/Tick-borne_encephalitis
Specifically, following the now routine mass bird/chicken massacres of the Bird Flu panic.
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.
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.
Wow if tick killing meds exist for dogs maybe we could get deer on those. Problem solved?
I thought I’ve heard of that for deer birth control before?
Shooting them with darts, well, those would be a hell of a lot more expensive than bullets. It seems ... fraught with a lot of potential for unexpected effects.
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.
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.
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.
[1] https://en.wikipedia.org/wiki/Lyme_disease#Vaccination
https://www.vox.com/science-and-health/2018/5/7/17314716/lym...
But you’ll still get them if you’re outside, and should do daily tick checks anyway.