My mother got a tick bite and felt off and the doctor told her she had allergies and sinus infection due to high pollen. Luckily my younger brother is a physician and told her to go back and ask for a Lyme disease test. They said okay but said Lyme disease is really rare and wasn’t necessary. Long story short she was positive but was caught early enough that 30 days Doxy was all she needed.
That same year I was bitten and had a super itchy spot near my private regions. It was crazy itch and made a bullseye rash. I went to a clinic and they said they had never seen the bullseye rash and it was textbook Lyme disease (or one other common tick disease). Same was treated with Doxy and was fine. It’s an strange disease because if caught early super cheap antibiotics work well… but if has spread through your body it can take years to recover and be quite serious!
The5thElephant · 2h ago
Why have I heard so many stories of doctors not wanting to diagnose something as Lyme disease?
soulofmischief · 2h ago
I literally used to get laughed out of the clinic, told I was a healthy young male and just needed to exercise more. After a decade of this, I was finally diagnosed with gout, something doctors had just been lying about testing for. No one could believe someone could have gout in their 20s (It's been developing since my late teens and I've generally had arthritis my entire life, since I was a child).
It took a physician's assistant, who happened to see me one day when both of my doctors were on their third extended vacation of the quarter, to hear my plight, take my suggestion of gout seriously, and do the leg work, also revealing to me that "full test panels" don't include uric acid by default and that my doctors had been lying to me about their thoroughness.
The assistant was also massively more knowledgeable about the disease, its history, the history of treatment, etc., and disease in general, than either of the two doctors running the clinic. Really opened my eyes.
The5thElephant · 1h ago
Funny enough I also got diagnosed with gout once in my 20s. I have always had somewhat bad toes/bunions (probably partially genetic, and partially wearing only tight soccer shoes as a kid) and I went to a wedding wearing some new leather shoes that I hadn't broken in yet. The next day I woke up with a fever and horrific pain in the sides of my toes. Went to doctor and they did some tests and were also seemingly surprised at the results indicating gout. They asked me to come back in a week to double check, and by then my symptoms were gone and the tests no longer indicated gout.
Our bodies are such strange mechanisms.
soulofmischief · 45m ago
> They asked me to come back in a week to double check, and by then my symptoms were gone and the tests no longer indicated gout.
Ha. Do you still have symptoms? If not, yea just a bad initial diagnosis. If you do still have symptoms sometimes though, it should be noted that gout is hard to test for when you're actively experiencing aggravated symptoms, as the uric acid crystals are lodged into your tissue and not freely available in the blood stream / urine. This exacerbated everything quite a lot, as when I was much younger I definitely got uric acid tests done when my symptoms were at their worst.
dessimus · 1h ago
Lyme Disease : PCPs :: Lupus : Dr. House?
BiteCode_dev · 1h ago
Doctors are trained to be arrogant, dismissive of unknown unknowns, and with a terrible understanding of statistics.
Add to that:
- They have a lot of patients and not enough sleep.
- They need to pay back a huge student loan.
- They hold terrible responsibilities and risk being sued.
- They don't have much time for themselves, let alone update their knowledge.
- Most patients are overreacting idiots, so it's a winning strategy to ignore what they tell you most of the time.
- They are not trained nor selected for empathy or open-mindedness.
And you get so many medical errors.
Basically, you have to double-check everything they do, and endure their cynical rebuttal when you make suggestions, ask questions or try things they didn't request.
I had to face many such errors myself, two almost lethal.
When you can, shop for one that is both good and is open to discussion. But even then, there is a limit. At some point, your doctor WILL fail you, so you have to take responsibility, usually when you're weak and at a low point in your life.
And if you are wrong, people will tell you you should have listened to your doctor, but if the doctor is wrong, well, shit happens.
One of my practitioners is a friend of 15 years, I literally lived with him, he is considered top in his specialty. I'm surrounded by people working at the hospital.
He saved my life once.
Even that is not enough. I still have to double check stuff every time.
netaustin · 5h ago
I contracted Lyme disease while on vacation in Cape Cod last year. The first symptom was left-side facial paralysis, which my physician diagnosed as Bell's Palsy, so I spent two weeks on steroids before we figured out the real issue. Three weeks of doxycycline cured the Lyme but left feeling pretty wrecked for more than a month afterwards! I seem to have avoided the chronic symptoms some people experience, but a low-dose antibiotic would have been great.
dec0dedab0de · 3h ago
Just to be pedantic, Bell's Palsy is the name of the condition not the cause. So it was Bell's Palsy caused by Lyme disease.
I have noticed that the line between condition and cause is often overlooked, even by doctors. For example this leads to people thinking Pinkeye/conjunctivitis is highly contagious, when it is still conjunctivitis if it is caused by getting something in your eye. I think that holds for everything that ends in -itis too Sinusitis, Arthritis, Tendonitis, etc.
I know that is a bit of a tangent, but you reminded me of someone who had bell's palsy telling me that it was actually shingles. I explained that just because it was caused by shingles doesn't mean it stops being Bell's Palsy, just like how it is still a cough if it's from the flu or from smoking. They ended up getting really angry at me about it, but I think hn might appreciate the semantics a bit more.
engineer_22 · 3h ago
Do you have trouble reading other people's emotions?
dec0dedab0de · 2h ago
No, I could clearly tell they were angry. I just never understood why some people get angry about minor corrections.
No comments yet
perching_aix · 21m ago
Do you?
y-c-o-m-b · 2h ago
Doxycycline is my favorite antibiotic and the most effective against chronic sinusitis and chronic prostatitis for me. I only take it maybe once a year, but it does wonders for a good long time.
It also cured my nearly lifelong IBS-D about a decade ago. I had a small re-occurrence of IBS-D last year after so many years without it. I was able to convince the doc that it fixed it for me in the past, so he prescribed me doxycycline again. Boom! All fixed just like before.
I have no idea why that particular antibiotic does the trick, but I've taken so many others from amoxicillin line, bactrim, even cipro, flagyl (gross) etc. and only doxy is the silver bullet for me it seems.
voidmain0001 · 4h ago
I'm on a second round of Doxy. The first was 21 days and now I have a 60 day prescription. It doesn't knock me out. I take the first dose early in the morning with a lot of water. I don't eat until noon, but not before first taking a capsule of probiotics to replenish gut bacteria. I take the second Doxy in the evening with a meal. Then 3 hours later I take another probiotic capsule to restore gut bacteria overnight. Maybe that regime is helping or maybe I'm just fortunate.
ToDougie · 1m ago
Which probiotic?
mikepurvis · 3h ago
My kid contracted it from a tick bite while camping in Ontario; it showed as joint pain in the legs that would come and go for like a week at a time. Made it tough to explain to the doctors as by the time we'd get there, he'd be fine again.
In the end it was four weeks of doxycycline— that was several months ago and it doesn't seem to have recurred, thankfully.
serial_dev · 3h ago
A couple of years ago I had about 10 tick bites and one of them resulted in the signature bull’s-eye rash. Thankfully, I was aware of the ticks and I was checking for the bull’s-eye rash to appear and it got treated with doxycycline.
Many people face symptoms months after the bite or they might not remember getting bitten by a tick so it’s common that it is misdiagnosed and they get all kinds of ineffective and / or unnecessary meds, so I added it to my “list of illnesses to check” in case I ever get unexplainable neurological issues, fatigue and joint problems.
tasuki · 3h ago
> was checking for the bull’s-eye rash to appear
Note that the absence of that wouldn't mean you didn't get lyme disease.
Where I live, most of the ticks carry lyme disease, yet not that many people get infected: if you pull it out quickly, you greatly reduce the chance of getting infected. Of the people I know, perhaps 20% had lyme disease (and knew about it, I must add).
hattmall · 2h ago
1 in 5 people had Lyme disease where you live? Where is that??
hentrep · 5h ago
Disclaimer: Not a doctor.
I think you’re alluding to this in your last statement, but standard treatment for Lyme can absolutely wreck your natural gut microbiome. This could explain some of the lingering chronic effects post-treatment. Did you try supplementing with fermented foods or probiotics after completing dox?
dcchambers · 4h ago
This is fantastic news. I live in Wisconsin - a tick and Lyme Disease hot spot. Ticks are one of the few bugs that really freak me out due to Lyme Disease, especially for my kids who spend a lot of time out playing in the grass.
Any news on the development of the fight against Lyme Disease is great news.
One key thing I've learned is that ticks are very unlikely to spread disease-causing bacteria within the first few hours of biting. So just do regular checks whenever you've been outside in tick-prone areas and get them off right away if found. If removed promptly the chance of infection is basically zero.
bentt · 6h ago
This is amazing and really needed in the northern US and Canada. It is also great they speak to the chronic lyme condition because many people get accused of it being psychosomatic or even false (similar with long Covid). Their theory of it being bacterial remnants in the liver is validating.
Aurornis · 3h ago
> It is also great they speak to the chronic lyme condition because many people get accused of it being psychosomatic or even false (similar with long Covid).
I have a friend who worked in research for rare, chronic, and misunderstood diseases for a few years. Post Treatment Lyme Disease Syndrome (PTLDS or just PTLD) is well accept by now.
The problem they encountered was that so many of the people who presented with "Chronic Lyme" diagnoses were either self-diagnosed from the internet or diagnosed by uninformed primary care doctors who used it as a catch-all for symptoms they couldn't diagnose. Many had never received positive test results, or they had received positive test results from cash-pay alternative medicine labs who used their own in-house alternate tests.
It was really depressing to hear stories about people who had been misled into spending tens or hundreds of thousands of dollars on things like year-long courses of expensive, IV antibiotics for a condition they most likely did not have. Even the idea of a persistent infection hasn't held up to scrutiny. The current line of thinking is shown in this article, where persistent particles of past infection might cause ongoing immune-related symptoms. Those symptoms would not respond to the high-dose, long-term antibiotic therapy pushed by the alternative medicine Lyme treatment providers, obviously.
So while it's a difficult topic, having some better mechanism to separate the verified Lyme cases from the self-diagnosed or those wrongly diagnosed is actually very important for improving acceptance of the condition. It's tragic that many with persistent symptoms of true Lyme infections have been dismissed, but it's also tragic that many with non-Lyme conditions have been misled into thinking that "Chronic Lyme" is the explanation for all of their problems contrary to the evidence. Getting the latter group out of the "Chronic Lyme" mindset and on to a path where their true underlying condition can be addressed, whatever it may be, is a win for them.
ixtli · 5h ago
Its sad that we needed to have a partially avoidable mass death due to COVID in order for people to start considering these chronic conditions more broadly in society. People have been having these issues for generations.
agos · 4h ago
look at it the other way: we got a couple of unexpected silver linings from the COVID hell. one is attention to these chronic conditions (finally!)
bentt · 4h ago
Yes! It's vital that we continue to look for opportunities in the midst of such a crisis.
bentt · 4h ago
I mean, sure.
But some things are just really complex and the root causes are very, very difficult to pin down. There was a lot sad about COVID, but like 4000th on the list is how it revealed the human dynamics that lead to chronic diseases being overlooked because science has no valid explanation for what's happening to patients. I say this as someone who suffered from Lyme Disease for a number of years.
almosthere · 4h ago
Now everyone agrees, experts are just normal people that have built a bias towards one ideological thing or another.
Long COVID? (looks up "party" stance)... that doesn't exist. Eat Apples.
Both of my sisters (currently mid-30s) have had their lives on pause for over 10 years due to chronic Lyme disease because doctors in Mexico hadn't ever even heard of it. It took 4 years of pain for the first of them to be diagnosed. Not sure when, if ever, they'll be cured because when you don't treat Lyme disease within a few months of infection, it digs in and is incredibly difficult to kill.
Aurornis · 3h ago
> Not sure when, if ever, they'll be cured because when you don't treat Lyme disease within a few months of infection, it digs in and is incredibly difficult to kill
FYI, the idea that active infection continues to exist in hiding within the body is a fringe theory.
The linked article talks about one of the current theories for why some patients have persistent symptoms after the infection is treated. The theory involves certain components of the past infection lodging themselves in the liver where they persist and can cause symptoms.
This is a difficult topic because some alternative Lyme treatment providers will tell patients they have a persistent infection and then subject them to years of high-dose antibiotics with no scientific basis, which can create a separate set of problems without addressing anything.
jadbox · 6h ago
This is desperately needed. I have Midwest family who have suffered ten years due to persistent lyme disease from having a single tick bite.
registeredcorn · 4h ago
Same. Family member who lived out around Utah and Colorado. She had been racked with pain for something like 15-20 years. She was going to doctors constantly, trying to figure out what was wrong. She was labeled as a "drug seeker" and got shoved around for years as a result.
Later on, she came across a doctor who happened to used to live in the North East and recognized it as Lyme disease pretty much instantly. She still deals with pain on a constant on-going basis, but has been slightly lessened with more targeted medications, etc. Hopefully something like this can offer her and others like her some sustainable, long-term relief.
whyenot · 1h ago
Lyme disease does exist on the west coast, including in the Bay Area. A friend in Los Altos got Lyme disease from a tick in her yard. This is the worst time of year for ticks in the Bay Area. I've picked off over 100 ticks while doing field work in Henry Coe State Park. The one advantage we have on the west coast is that our ticks are larger and you usually notice when one starts crawling on your skin and especially when one bites you.
This is what the "fight" with "elite" universities is really about: No longer funding research.
That's the most important aspect of this thing. Every other aspect of this is a sideshow to the main event. And the main event very much is the de-funding of scientific research.
No longer funding this research is a huge change. And one that will eventually have far-reaching consequences for everyone.
3D30497420 · 2h ago
I think it is even broader than that. It is removing any potential opposition. That opposition is independent institutions, such as universities, but also the truth itself. If there's no one to research things, then how will you know if something is "true" or not? If there's no one to communicate those findings, how will anyone find out? Etc.
loeg · 4h ago
> Northwestern scientists identified that piperacillin, an antibiotic in the same class as penicillin, effectively cured mice of Lyme disease at 100-times less than the effective dose of doxycycline.
Would be nice if it translates to humans.
> The authors argue that piperacillin, which has already been FDA-approved as a safe treatment for pneumonia, could also be a candidate for preemptive interventions for those potentially exposed to Lyme (with a known deer tick bite).
CyberDildonics · 6h ago
Bypassing the clickbait we have this:
In two new studies led by bacteriologist Brandon L. Jutras, Northwestern scientists have identified an antibiotic that cures Lyme disease at a fraction of the dosage of the current “gold standard” treatment and discovered what may cause a treated infection to mimic chronic illness in patients. The studies were published in the journal Science Translational Medicine.
formerphotoj · 3h ago
For more info on Lyme and related difficult to identify diseases, NYT columnist Ross Douhat wrote a book about his experience w/ Lyme and his ongoing adaptations. It's called...
The Deep Places: A Memoir of Illness and Discovery
boplicity · 2h ago
How strange that scientific research just like this has become extremely political.
Case in point: The Trump administration has cut Northwestern off from over a quarter billion dollars in funding because of "anti-semitism." Note, that the vast majority of this money is for research just like the one linked in this article.
Of course, people seem to be arguing about anti-semitism more than cutting off funding for research. But make no mistake: cutting off research funding is exactly what is happening. And that has practically nothing to do with antisemitism.
heelix · 1h ago
Our kid got bit by a tick. Was lucky enough that it had the bulls eye pattern and was able to look it up. She got a crazy high temperature. Was crazy. A strong antibiotic cleared it up.
I really wish there still was a vaccine available (for humans). I treat my pant legs and jacket sleeves with permethrin, which slowly kills the ticks - but does so usually before they would attempt to bite. One of the better camping tricks that I've applied to everyday life.
giantg2 · 6h ago
I thought that there are approved human vaccines, but they were voluntarily removed due to economic reasons and lack of adoption.
bluGill · 6h ago
There was, withdrawn in 2002. Protection wanes so even if you were one of the few who got it then you have no protection today. There are a couple new vaccines in the works, one in phase 3 testing so hopefully we get something in a few years.
mplanchard · 5h ago
Yeah there's what looks like a solid candidate going through a variety of worldwide trials right now.[0]
Very hopeful for a meaningful means of prevention in the coming years.
How is this really different from the previous Lymerix? Aren't they both 3 shot series and OspA based?
giantg2 · 1h ago
It was withdrawn, but the approval was never revoked.
ghaff · 4h ago
It's a complicated story. There were (almost certainly overstated by some) side effects and it just wasn't a super-effective vaccine. Still IMO shouldn't have been take off the market. Hopefully one of the vaccines under development pan out because Lyme is a real problem in some areas and increasingly spreading north.
ixtli · 5h ago
iirc the vaccines stopped the tick from successfully transferring the bacteria. it didn't make the body able to better combat it. (and if you read the article linked it explains that its not actually the killing of the spirochete that is the problem its the remains of it and how the host body responds to those remains.)
micromacrofoot · 3h ago
There are multiple human vaccines in the works at the moment, earliest might be available towards the end of 2027 as long as they're not defunded by the current administration
In clinical trials - the one I was able to find has the first report due end of 2026, with the final end of 2027. I assume 6 months or a year after that to do paperwork before approval so I'm guessing late 2028 before we get it (assuming it passes trial, which isn't a given)
giantg2 · 6h ago
The one I heard about is supposed to be an antibody injection.
binary132 · 5h ago
And here I thought “long Lyme” had been proven fake.
gavin-1 · 4h ago
"long Lyme" isn't well defined, but you're probably thinking of chronic lyme [1]. This article refers to PTLD.
The distinction matters. Chronic lyme is quackery that encourages people to pursue aggressive long-term antibiotic treatment for a non-existent persistent bacterial infection. Often these are people who have never been infected with Borrelia in the first place.
The article directly contradicts the persistent (undetectable) bacterial infection "chronic lyme" theory.
Agreed. Long Lyme certainly exists. I appear to have it as do numerous acquaintances. I wrote "appear to have it" because a blood test for Borrelia returns negative. However, just two weeks ago a doctor told me that Borrelia can evade a blood test by infecting the nervous system. That was news to me so I found this from NIH in the USA. https://pmc.ncbi.nlm.nih.gov/articles/PMC8870494/ Borrelia can cross over to the CNS. Lovely.
Aurornis · 3h ago
> I wrote "appear to have it" because a blood test for Borrelia returns negative. However, just two weeks ago a doctor told me that Borrelia can evade a blood test by infecting the nervous system.
The theory of persistent infection hasn't really held up. There were a few researchers who claimed to have some evidence, but it hasn't really been replicated. It's largely been dismissed from mainstream research.
Sadly, it's still a favored theory in many alternative medicine communities. It's also a really contentious topic. There's a long history, including Lyme researchers leaving the field after receiving death threats following publication of research that didn't agree with the alternative medicine theories.
To be clear, that article is about CNS penetration of the infection, not persistence of the infection.
voidmain0001 · 2h ago
Is there a reason you refer to alternative medical communities in response to my comment? Considering I made no reference to using alternative medicine, what does it have to do with my comment? Do you have an agenda? I know that I don't have one and neither did my comment.
IncreasePosts · 3h ago
What symptoms? How can you say your symptoms are from long Lyme, and not something else, or just getting old?
voidmain0001 · 2h ago
My symptoms are spot on with Acrodermatitis chronica atrophicans.
It is kinda funny that humanity can kills entire species like the dodo while cannot eradicate a bacterium like Borrelia.
quesera · 6h ago
Big things are easier to eradicate, especially if they are slow, unaccustomed to being prey, and nutritious.
Eradicating a bacterium with wild animal reservoir populations (deer, white-footed mice, black-legged ticks, all of which are endemic species) is ... a much harder problem.
rarrrrrr · 5h ago
Strangely enough, there's even some likelihood that killing off the passenger pigeon actually promoted Borrelia burgdorferi. The passenger pigeon's main food source was tree mast. Large flocks of pigeons would descend and clear the forest floor of food. After it went extinct, the population of small animals which also eat tree mast exploded, and these are reservoir species for Borrelia.
If I could hunt Borrelia with spears it would be over
voidmain0001 · 4h ago
I would like to kill more deer which are part of the Lyme cycle. There are so many in the rural area I live, they remind of big city rats.
bregma · 3h ago
Borellia bergdorfii does not taste like chicken.
nkrisc · 4h ago
There were far fewer dodos than any given bacteria. You can also see a dodo.
jpadkins · 2h ago
Good time to remind people that right next to the town of Lyme CT is Plum Island Animal Disease Center, who happened to be researching tick based disease transmission when Lyme disease was first discovered (named after the town that had the first case). Crazy coincidence.
Evidence of bacterium that causes Lyme disease was also found in the 5000+ year old "Iceman" mummy found in the alps. People have described the disease in the 1700s, 1800s and in the 1900s prior to the outbreak in Lyme. Ticks preserved alongside their animal hosts in 1800s biologic samples also are found to have it. Genetic sequencing of different bacteria samples suggests a much older evolutionary tree than a few decades existence.
That same year I was bitten and had a super itchy spot near my private regions. It was crazy itch and made a bullseye rash. I went to a clinic and they said they had never seen the bullseye rash and it was textbook Lyme disease (or one other common tick disease). Same was treated with Doxy and was fine. It’s an strange disease because if caught early super cheap antibiotics work well… but if has spread through your body it can take years to recover and be quite serious!
It took a physician's assistant, who happened to see me one day when both of my doctors were on their third extended vacation of the quarter, to hear my plight, take my suggestion of gout seriously, and do the leg work, also revealing to me that "full test panels" don't include uric acid by default and that my doctors had been lying to me about their thoroughness.
The assistant was also massively more knowledgeable about the disease, its history, the history of treatment, etc., and disease in general, than either of the two doctors running the clinic. Really opened my eyes.
Our bodies are such strange mechanisms.
Ha. Do you still have symptoms? If not, yea just a bad initial diagnosis. If you do still have symptoms sometimes though, it should be noted that gout is hard to test for when you're actively experiencing aggravated symptoms, as the uric acid crystals are lodged into your tissue and not freely available in the blood stream / urine. This exacerbated everything quite a lot, as when I was much younger I definitely got uric acid tests done when my symptoms were at their worst.
Add to that:
And you get so many medical errors.Basically, you have to double-check everything they do, and endure their cynical rebuttal when you make suggestions, ask questions or try things they didn't request.
I had to face many such errors myself, two almost lethal.
When you can, shop for one that is both good and is open to discussion. But even then, there is a limit. At some point, your doctor WILL fail you, so you have to take responsibility, usually when you're weak and at a low point in your life.
And if you are wrong, people will tell you you should have listened to your doctor, but if the doctor is wrong, well, shit happens.
One of my practitioners is a friend of 15 years, I literally lived with him, he is considered top in his specialty. I'm surrounded by people working at the hospital.
He saved my life once.
Even that is not enough. I still have to double check stuff every time.
I have noticed that the line between condition and cause is often overlooked, even by doctors. For example this leads to people thinking Pinkeye/conjunctivitis is highly contagious, when it is still conjunctivitis if it is caused by getting something in your eye. I think that holds for everything that ends in -itis too Sinusitis, Arthritis, Tendonitis, etc.
I know that is a bit of a tangent, but you reminded me of someone who had bell's palsy telling me that it was actually shingles. I explained that just because it was caused by shingles doesn't mean it stops being Bell's Palsy, just like how it is still a cough if it's from the flu or from smoking. They ended up getting really angry at me about it, but I think hn might appreciate the semantics a bit more.
No comments yet
It also cured my nearly lifelong IBS-D about a decade ago. I had a small re-occurrence of IBS-D last year after so many years without it. I was able to convince the doc that it fixed it for me in the past, so he prescribed me doxycycline again. Boom! All fixed just like before.
I have no idea why that particular antibiotic does the trick, but I've taken so many others from amoxicillin line, bactrim, even cipro, flagyl (gross) etc. and only doxy is the silver bullet for me it seems.
In the end it was four weeks of doxycycline— that was several months ago and it doesn't seem to have recurred, thankfully.
Many people face symptoms months after the bite or they might not remember getting bitten by a tick so it’s common that it is misdiagnosed and they get all kinds of ineffective and / or unnecessary meds, so I added it to my “list of illnesses to check” in case I ever get unexplainable neurological issues, fatigue and joint problems.
Note that the absence of that wouldn't mean you didn't get lyme disease.
Where I live, most of the ticks carry lyme disease, yet not that many people get infected: if you pull it out quickly, you greatly reduce the chance of getting infected. Of the people I know, perhaps 20% had lyme disease (and knew about it, I must add).
I think you’re alluding to this in your last statement, but standard treatment for Lyme can absolutely wreck your natural gut microbiome. This could explain some of the lingering chronic effects post-treatment. Did you try supplementing with fermented foods or probiotics after completing dox?
Any news on the development of the fight against Lyme Disease is great news.
One key thing I've learned is that ticks are very unlikely to spread disease-causing bacteria within the first few hours of biting. So just do regular checks whenever you've been outside in tick-prone areas and get them off right away if found. If removed promptly the chance of infection is basically zero.
I have a friend who worked in research for rare, chronic, and misunderstood diseases for a few years. Post Treatment Lyme Disease Syndrome (PTLDS or just PTLD) is well accept by now.
The problem they encountered was that so many of the people who presented with "Chronic Lyme" diagnoses were either self-diagnosed from the internet or diagnosed by uninformed primary care doctors who used it as a catch-all for symptoms they couldn't diagnose. Many had never received positive test results, or they had received positive test results from cash-pay alternative medicine labs who used their own in-house alternate tests.
It was really depressing to hear stories about people who had been misled into spending tens or hundreds of thousands of dollars on things like year-long courses of expensive, IV antibiotics for a condition they most likely did not have. Even the idea of a persistent infection hasn't held up to scrutiny. The current line of thinking is shown in this article, where persistent particles of past infection might cause ongoing immune-related symptoms. Those symptoms would not respond to the high-dose, long-term antibiotic therapy pushed by the alternative medicine Lyme treatment providers, obviously.
So while it's a difficult topic, having some better mechanism to separate the verified Lyme cases from the self-diagnosed or those wrongly diagnosed is actually very important for improving acceptance of the condition. It's tragic that many with persistent symptoms of true Lyme infections have been dismissed, but it's also tragic that many with non-Lyme conditions have been misled into thinking that "Chronic Lyme" is the explanation for all of their problems contrary to the evidence. Getting the latter group out of the "Chronic Lyme" mindset and on to a path where their true underlying condition can be addressed, whatever it may be, is a win for them.
But some things are just really complex and the root causes are very, very difficult to pin down. There was a lot sad about COVID, but like 4000th on the list is how it revealed the human dynamics that lead to chronic diseases being overlooked because science has no valid explanation for what's happening to patients. I say this as someone who suffered from Lyme Disease for a number of years.
Long COVID? (looks up "party" stance)... that doesn't exist. Eat Apples.
https://scholar.google.com/scholar?oi=bibs&hl=en&cluster=384...
FYI, the idea that active infection continues to exist in hiding within the body is a fringe theory.
The linked article talks about one of the current theories for why some patients have persistent symptoms after the infection is treated. The theory involves certain components of the past infection lodging themselves in the liver where they persist and can cause symptoms.
This is a difficult topic because some alternative Lyme treatment providers will tell patients they have a persistent infection and then subject them to years of high-dose antibiotics with no scientific basis, which can create a separate set of problems without addressing anything.
Later on, she came across a doctor who happened to used to live in the North East and recognized it as Lyme disease pretty much instantly. She still deals with pain on a constant on-going basis, but has been slightly lessened with more targeted medications, etc. Hopefully something like this can offer her and others like her some sustainable, long-term relief.
That's the most important aspect of this thing. Every other aspect of this is a sideshow to the main event. And the main event very much is the de-funding of scientific research.
No longer funding this research is a huge change. And one that will eventually have far-reaching consequences for everyone.
Would be nice if it translates to humans.
> The authors argue that piperacillin, which has already been FDA-approved as a safe treatment for pneumonia, could also be a candidate for preemptive interventions for those potentially exposed to Lyme (with a known deer tick bite).
In two new studies led by bacteriologist Brandon L. Jutras, Northwestern scientists have identified an antibiotic that cures Lyme disease at a fraction of the dosage of the current “gold standard” treatment and discovered what may cause a treated infection to mimic chronic illness in patients. The studies were published in the journal Science Translational Medicine.
The Deep Places: A Memoir of Illness and Discovery
Case in point: The Trump administration has cut Northwestern off from over a quarter billion dollars in funding because of "anti-semitism." Note, that the vast majority of this money is for research just like the one linked in this article.
Of course, people seem to be arguing about anti-semitism more than cutting off funding for research. But make no mistake: cutting off research funding is exactly what is happening. And that has practically nothing to do with antisemitism.
I really wish there still was a vaccine available (for humans). I treat my pant legs and jacket sleeves with permethrin, which slowly kills the ticks - but does so usually before they would attempt to bite. One of the better camping tricks that I've applied to everyday life.
Very hopeful for a meaningful means of prevention in the coming years.
[0]: https://www.pfizer.com/news/press-release/press-release-deta...
https://www.pfizer.com/news/press-release/press-release-deta...
The distinction matters. Chronic lyme is quackery that encourages people to pursue aggressive long-term antibiotic treatment for a non-existent persistent bacterial infection. Often these are people who have never been infected with Borrelia in the first place.
The article directly contradicts the persistent (undetectable) bacterial infection "chronic lyme" theory.
[1] https://en.wikipedia.org/wiki/Chronic_Lyme_disease
The theory of persistent infection hasn't really held up. There were a few researchers who claimed to have some evidence, but it hasn't really been replicated. It's largely been dismissed from mainstream research.
Sadly, it's still a favored theory in many alternative medicine communities. It's also a really contentious topic. There's a long history, including Lyme researchers leaving the field after receiving death threats following publication of research that didn't agree with the alternative medicine theories.
> That was news to me so I found this from NIH in the USA. https://pmc.ncbi.nlm.nih.gov/articles/PMC8870494/ Borrelia can cross over to the CNS. Lovely.
To be clear, that article is about CNS penetration of the infection, not persistence of the infection.
https://en.wikipedia.org/wiki/Acrodermatitis_chronica_atroph... https://www.ncbi.nlm.nih.gov/books/NBK563289/
Eradicating a bacterium with wild animal reservoir populations (deer, white-footed mice, black-legged ticks, all of which are endemic species) is ... a much harder problem.
https://reviverestore.org/projects/about-the-passenger-pigeo...
https://www.defenseone.com/threats/2019/07/did-us-invent-lym...