Lyme disease bacteria eradicated by new drug in early tests
scopeblog.stanford.edu
scopeblog.stanford.edu
> Standard treatment of Lyme disease is oral antibiotics, typically doxycycline, in the early stages of the disease; but for reasons that are unclear, the antibiotics don't work for up to 20% of people with the tick-borne illness. One possibility is that drug-tolerant bacteria cause the lingering symptoms.
Many people experience lingering symptoms after contracting Lyme disease. Officially, this is known as "Post-Treatment Lyme Disease Syndrome". The CDC page for the PTLDS has more information: https://www.cdc.gov/lyme/postlds/index.html
These PTLDS symptoms are definitely real, but the idea that persistent lyme infection is the cause of the lingering problems is more of a hypothesis at this point.
It will be interesting to see if this new antibiotic produces different outcomes in PTLDS patients, but it's misleading to claim that this is the only antibiotic known to act on the Lyme disease spirochetes. The original study specifically explored the action of Azlocillin on Doxycycline-resistant spirochetes. From the study:
> Our results also demonstrate that azlocillin and cefotaxime can effectively kill in vitro doxycycline-tolerant B. burgdorferi.
The authors point to indirect evidence suggesting that spirochetes might still be present in PTLDS patients, but acknowledge that no one has yet been able to culture a viable spirochete from PTLDS patients:
> A recent study in humans demonstrated that B. burgdorferi DNA was identified in PTDLS patient by xenodiagnosis but unable to culture viable spirochete17. In about 85% of Lyme arthritis patients, B. burgdorferi DNA was detected in synovial fluid by polymerase chain reaction (PCR) testing
It would be great if this antibiotic could produce positive outcomes for PTLDS patients, but I wouldn't get too excited until we see some human studies. PTLDS (aka "chronic lyme") has a long history of promising treatments failing to produce results in patients.
"According to the recent study, azlocillin shows promise because it appears to be able to kill the two morphological forms of the Lyme bacteria -- the actively replicating spiral forms and the semi-dormant round-body forms.
Azlocillin also appears to kill drug-tolerant persisters very effectively. These protective persisters form when the bacteria are threatened with defensive immune system biochemicals or antibiotics. After the threat has passed, the bacteria can reemerge to cause active disease. Many researchers believe that doxycyline's inability to clear the persisters may account for the ongoing symptoms of some Lyme sufferers."
> Many researchers believe that doxycyline's inability to clear the persisters may account for the ongoing symptoms of some Lyme sufferers
"Many researchers believe" is not the language you use when you have concrete evidence supporting the claim.
To date, no one has been able to culture these supposedly persistent bacteria from a PTLSD patient. Researchers are relying on indirect evidence, with no explanation for why the spirochetes can't be found in PTLSD patients.
Not true. Not sure where you are reading that.
Lyme is difficult to culture, but it can be cultured: Scroll down to the "Culture" section: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4441761/
Regardless, my bar for evidence would be human trials in PTLDS patients with Azlocillin. Given that Azlocillin is already FDA approved and the researchers initially started studying it in 2016, I'm surprised no one has tried it yet.
That's not the same as saying this work won't help lead to that. We can all hope it does while waiting to know for sure.
I appreciate the additional info and context provided.
The reason may be this:
https://www.sciencedirect.com/science/article/pii/S1198743X1...
Maybe for the purpose of that paper that’s fine. But I’m not sure if it supports your statement.
Anyway, the study itself is not the reason for the quoted statement on the CDC page. I was just trying to find some relevant basis for the statement, and this study has some reasons listed in the dicussion/conclusion.
The previous sentence is also important:
>Many research studies has [sic] shown that B. burgdorferi establishes persistent infections after antibiotic treatment in various animal models.
I'd love to be completely wrong and for this to be a game-changing solution, but after years of following this research I'm suspicious of the idea that persistent yet mysteriously undetectable (in humans) spirochetes are responsible for PTLSD symptoms.
This is true, but what I think most people don't realize is that the evidence that antibiotics kill the bacteria in the first place is also extremely dubious. If you read the main paper, it literally boils down to "people who take antibiotics are less likely to get a rash."[1]
[1] https://www.nejm.org/doi/full/10.1056/nejm200107123450201
Lyme disease treatment protocols are shown here: https://www.cdc.gov/lyme/treatment/index.html
Doxycycline is generally used for 14-21 days, twice daily, not a one-time dose as used in your linked study.
Even the linked study shows that Doxycycline acts on B. burgdorferi, even in the difficult stationary phase. Scroll down to Figure 6: https://www.nature.com/articles/s41598-020-59600-4 . Obviously Azlocillin is superior in this in vitro study, hence the news. But it still shows that Doxycycline is active against the bacteria. It's too bad that the authors didn't continue the test long enough to see Doxycycline either reach zero (presumably) or level off. Seems like a crucial piece of data that they strangely neglected to measure.
Please read the study and the CDC web page you're linking to. They don't support your point.
From the CDC link you provided:
> Doxycycline (100 mg orally BID X 14 days) is generally recommended for prophylaxis in adults.
From the study you linked to above:
> A single 200-mg dose of doxycycline given within 72 hours
The CDC recommends a 14-day course of twice-daily dosing (BID = twice daily). It has no relationship to the single-dose NJEM study you linked to above.
"In areas that are highly endemic for Lyme disease, a single prophylactic dose of doxycycline (200 mg for adults or 4.4 mg/kg for children of any age weighing less than 45 kg) may be used to reduce the risk of acquiring Lyme disease after the bite of a high risk tick bite."
You can also see their guidelines for doctors here:
https://www.cdc.gov/lyme/resources/FS-Guidance-for-Clinician...
I developed the typical Lyme symptoms after spending a lot of time outdoors in a Lyme area and removing ticks from myself several different times. I tested positive for Lyme under the relatively strict CDC criteria from a trusted laboratory. A 28-day course of Doxycycline changed something, but the fatigue and general malaise stuck around. I've spent the next decade consuming every bit of research I could find on the topic.
I'd love as much as anyone for this already FDA-approved antibiotic like Azlocillin to be a miracle cure for my problems. I would gladly welcome properly structured RCTs. However, I've learned to be extremely skeptical of antibiotic therapies for Lyme. Patients who self identify as having "chronic Lyme" are notorious for holding strong beliefs that antibiotics improve their condition after reading about hidden spirochetes and undetectable infection theories for years, but double-blind studies show no benefit.
I think the much more likely explanation is that Lyme can trigger long-lasting alterations in the body somewhere, even after the infection is eliminated.
Sadly, the topic has become so political that mainstream researchers won't touch it. Now that "chronic Lyme" is so closely intertwined with the alternative medicine community, anyone who denies the persistent infection theory is treated as if they are denying the persistent symptoms of sufferers. That couldn't be farther from the truth for me, as I suffer the symptoms myself.
The topic is so politically charged that I only use my pseudonymous alternate account for discussing it online. I've had chronic Lyme sufferers dox me and send vaguely threatening messages in the past, just for discussing the research online. It's no wonder that more researchers don't want to investigate Lyme disease.
>RESULTS: Motile spirochetes identified histopathologically as Borrelia were detected in culture specimens, and these spirochetes were genetically identified as Borreliaburgdorferi by three distinct polymerase chain reaction (PCR)-based approaches. Spirochetes identified as Borrelia burgdorferi were cultured from the blood of seven subjects, from the genital secretions of ten subjects, and from a skin lesion of one subject. Cultures from control subjects without Lyme disease were negative for Borrelia using these methods https://www.ncbi.nlm.nih.gov/pubmed/29662016
The CDC is wrong and negligent about persistent Lyme. Just like they are about the masks for covid-19.
This is just one study demonstrating spirochetes surviving. I'm not gonna bother digging up the others, honestly not worth my time to try and convince one random person.
Look up disulfiram and it's effects on Lyme patients. It's another drug discovered in the same way as this one. Miraculous.
What is the CDC saying about masks for covid-19? Are you saying they're not effective or the CDC is downplaying their effectiveness?
Surgical masks are not effective at preventing infection. They are effective at spreading infection.
New data on asymptomatic spreaders means than public health authorities are considering changing their advice. The default assumption would then be that everyone has it, and should therefore wear a mask to prevent spreading it.
This is a common misconception, for which CDC is also partially the one to be blamed.
Laboratory tests find that improvised cloth masks block 60 – 80% of virus particles
Most experts in the early 2000s agreed that these masks were probably better than nothing.
https://bmjopen.bmj.com/content/bmjopen/5/4/e006577.full.pdf
https://www.cambridge.org/core/services/aop-cambridge-core/c...
http://akkie.mods.jp/2019-nCoV/images/c/c0/%E3%82%B5%E3%83%B...
How many virus particles do you need to become infected? Is 20% of the load in a typical aerosol droplet from an asymptomatic infected person above or below that critical number?
>higher viral loads associated with severe clinical outcomes
Actually, they very much are.
1. Regular old surgical masks (not N95 respirators), when worn by the public without training, had a strong protective effect for the people wearing them during the SARS-CoV-1 outbreak. They reduced the risk of infection by ~70%. (Source: https://wwwnc.cdc.gov/eid/article/10/2/03-0730_article) The CDC even coauthored this one.
2. Despite being very different in their ability to actually filter out fine particles, N95 respirators and surgical masks actually show no significant difference in their ability to prevent diagnosed respiratory infections including influenza, when worn by healthcare workers according to two large meta-studies. Though both had a protective effect over no mask. (Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4868605/) (2nd source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5779801/)
3. When infected people wear a mask, it does help reduce the amount of viral shedding which occurs, presumably making them less likely to infect others. (Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3591312/)
In fact, if you dig into the research evaluating different mask types including homemade masks, one of them suggests that the masks are actually MORE protective on the way in than they are in preventing shedding of aerosols: (Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440799/) (2nd source: https://www.researchgate.net/publication/258525804_Testing_t...)
Their Jan 8 publication says:
> CDC currently recommends a cautious approach to symptomatic patients with a history of travel to Wuhan City. Such patients should be asked to wear a surgical mask as soon as they are identified and be evaluated in a private room with the door closed. Personnel entering the room to evaluate the patient should use contact precautions and wear an N95 disposable facepiece respirator
- https://emergency.cdc.gov/han/HAN00424.asp
And on Feb 21 their FAQ said:
> Q: Does CDC recommend the use of facemask in the community to prevent COVID-19?
> A: CDC does not recommend that people who are well wear a facemask to protect themselves from respiratory illnesses, including COVID-19. You should only wear a mask if a healthcare professional recommends it. A facemask should be used by people who have COVID-19 and are showing symptoms. This is to protect others from the risk of getting infected. The use of facemasks also is crucial for health workers and other people who are taking care of someone infected with COVID-19 in close settings (at home or in a health care facility).
- https://wayback.archive-it.org/13529/20200221195555/https://...
So I'm not seeing where they ever said they were not effective. It says that if you are sick or showing symptoms you should wear a mask, but that they don't advise the general public to wear a mask because they are crucial to health care workers. To me this sounds like very good advice.
To be clear, I'm just saying the CDC never lied. You can disagree with its recommendation to try and save the masks supplies for Health Workers and people showing symptoms, but it never said that masks are ineffective. If anything, it might have said that it's still unclear how effective they are, but even then, it clearly took the cautionary approach.
If you read to the contrary, that was probably just a poor news source spewing misinformation. Or at least, I cannot find where on the official CDC channels they would have lied.
This isn't necessarily true. Doctors and nurses could have training on how to use masks, whereas most people will touch their faces more with them on.
Surgical masks are particularly helpful in stopping _infected_ people from spreading the disease.
New information and data on asymptomatic spreaders means that the CDC (and many other Western health authorities) are considering changing their advice. The idea is that everyone must assume they are an asymptomatic spreader.
Additionally, surgical masks aren't the only PPE that medical workers use to protect themselves. Furthermore, hospitals and medical workers need surgical masks for many different non-coronavirus activities.
See here for more info:https://www.npr.org/sections/health-shots/2020/03/31/8245604...
Note the following points, with sources (The context is a bit off because I did this research in response to another question, but the points are still pretty much relevant here):
1. Regular old surgical masks (not N95 respirators), when worn by the public without training, had a strong protective effect for the people wearing them during the SARS-CoV-1 outbreak. They reduced the risk of infection by ~70%. (Source: https://wwwnc.cdc.gov/eid/article/10/2/03-0730_article)
2. Despite being very different in their ability to actually filter out fine particles, N95 respirators and surgical masks actually show no significant difference in their ability to prevent diagnosed respiratory infections including influenza, when worn by healthcare workers according to two large meta-studies. Though both had a protective effect over no mask. (Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4868605/) (2nd source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5779801/)
3. Improvised, homemade masks have only a marginally lower filtration efficiency than surgical masks (which we established are about as effective as an N95 respirator anyway). (Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440799/) (2nd source: https://www.researchgate.net/publication/258525804_Testing_t...)
4. There is evidence in the studies linked in item 2 that hand hygiene alone did not demonstrate much of a protective effect (for civilians caring for a sick family member) against transmission of influenza compared to use of any type of mask.
5. When infected people wear a mask, it helps reduce the amount of viral shedding which occurs, presumably making them less likely to infect others. (Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3591312/)
What the study says is that we don't have enough information. As an example, one of the studies referenced in that study gives odds of 0.58 for getting infected with surgical and 0.42 with N95.
Bonus quote: "Furthermore, we do not have an adequate understanding of the number, size and dispersion of the droplets that contain live, infectious particles produced by infected patients.56 A laboratory-based study reported data that humans infected with influenza rarely produce aerosols that contain infectious viral particles.57 In 2 other laboratory studies, participants infected with influenza produced droplets containing viral RNA, but viral RNA could not be detected on manikin headforms or on filters of breathing manikins at distances as close as 0.1 m following participants breathing, counting, coughing or laughing.7"
The quote you're referring to, regarding 95% CIs, in context specifically applies to comparing surgical masks vs. N95 respirators, not mask vs. no-mask. In other words, surgical masks are not shown to be worse than N95 respirators.
That's in complete agreement with the point 2 that you're apparently trying to refute.
First, you're implying that the data is new, but it's been around for a long time:
https://docs.google.com/document/d/1HLrm0pqBN_5bdyysOeoOBX4p...
> Surgical masks are particularly helpful in stopping _infected_ people from spreading the disease.
One of the ways the CDC twisted the information was to pretend this is only about surgical masks. There are also N95 masks, but the advice from the CDC and Surgeon General was generalized to all masks, not just surgical masks. Like this tweet:
Seriously people- STOP BUYING MASKS!
They are NOT effective in preventing
general public from catching #Coronavirus,
but if healthcare providers can’t get
them to care for sick patients, it puts
them and our communities at risk!
Furthermore, even surgical masks block 60-80% of pathogens. And if you seal the sides with tape, they block as much as other respirators.
And for the public, 60-80% is wayyyyy better than nothing!
So although it's true that there is a shortage of medical-grade masks for healthcare workers, and it's true that we should give them priority for any masks we have, it's absolutely a lie to say that "masks" in general are not effective at stopping the virus for the public.
Think a moment. The sick people need the doctors and nurses alive. Stripping the supply of PPE for medical professionals is lose-lose for everyone. Even if only all of the high-risk non-medical-workers bought effective masks, it would obliterate the supply available to nurses and doctors.
Lie once, lie always. Honesty is imperative for a public trust.
Now, what do you think the crazy anti-vaxxers will say, next time they're told to trust the CDC, and other public bodies, and that vaccination is safe, and makes sense?
When a vaccine is created, perhaps, for this virus?
Now it is easier to convince others that the truth is concealed. That lies abound.
Any medical official should lose their license, for spreading quackery.
I would argue no, not a net positive at all. To start, nearly everyone now distrusts the CDC (and WHO) to deliver accurate information.
> CDC works 24/7 to protect America from health, safety and security threats, both foreign and in the U.S. Whether diseases start at home or abroad, are chronic or acute, curable or preventable, human error or deliberate attack, CDC fights disease and supports communities and citizens to do the same.
> CDC increases the health security of our nation. As the nation’s health protection agency, CDC saves lives and protects people from health threats. To accomplish our mission, CDC conducts critical science and provides health information that protects our nation against expensive and dangerous health threats, and responds when these arise.
I think the same people who were inclined to distrust health organizations probably continue to do so, and the folks who were inclined to trust health organizations probably continue to do so as well.
Lies undermine all of this. Lies undermine the means by which they accomplish their mission.
> the folks who were inclined to trust health organizations probably continue to do so as well
One point of ancedata: not all of us.
This implies that trusting public health organizations is some kind of personal preference? Or that health organizations are inherent liars? Not sure what you're getting at.
Let's adjust the statement a bit to parse out its meaning, and make it not about health organizations, but about lying organizations.
"I think the same people who were inclined to distrust [lying] organizations probably continue to do so, and the folks who were inclined to trust [lying] organizations probably continue to do so as well."
That's a true statement that I can get behind.
Even more concerning are the number of doctors I've seen blatantly lying about the effectiveness of masks. Most people aren't idiots - if the masks help protect medical professionals from Covid-19, they can also help non-medical professionals.
The proper message would have been: masks can be effective, even a bandana can likely help prevent disease transmission. But it's important for Americans to save N95 masks for medical professionals until they're widely available. Given that it's highly likely that wearing any mask helps prevent the spread of the virus by keeping the mask wearer from transmitting it to others, this is what they should have done.
Why not? This is a classic trolley problem and throwing the switch is absolutely the correct answer.
Going forward, misinformation gives every anti-vaxxer, skeptic, conspiracy theorist, and snake oil peddling bullshitter more ammunition with which to displace effective medical treatment going forward. Even the well meaning general populace becomes skeptical. You know what this results in?
Dead kids. Covid parties.
Trust in government is already so fucking slow people are throwing covid parties. And now you're suggesting that undermining that trust even more is the obvious answer?
... probably.
For members of the public walking around a mask provides at best marginal benefit, and that's only if the wearer complies with a strict regime of donning and doffing protocols, and if it's combined with a full set of other PPE (disposable gowns, gloves, eye shields) and frequent handwashing.
As soon as you drop any of those you're not just making the mask a bit less effective, you're probably increasing the risk over not wearing a mask at all.
There are a few routes of transmission -
fecal oral; fomites to hand and then to eyes, nose, or mouth; and droplets landing on your eyes or being breathed in.
It's likely that in members of the public the main route is touching an infected surface and then touching your eyes, nose or mouth. Masks only help with breathing in droplets, and they only help if they're worn correctly. Incorrect mask wearing increases risk because masks feel weird and cause people to touch their face more often, and because masks give permission to people to go outside and mingle in crowds.
There's not much research around whether members of the public can wear PPE correctly, but there's plenty of research around PPE and healthcare professionals. We know that qualified registered healthcare professionals who know the consequences of not wearing PPE correctly still struggle to do it all correctly.
> Most people aren't idiots - if the masks help protect medical professionals from Covid-19, they can also help non-medical professionals.
The difference is that healthcare professionals spend all day in close contact with symptomatic people and are more likely to come into contact with blood or fecal matter or sputum, and are more likely to be doing aerosol-generating procedures, so the baseline risk is much higher, so that marginal benefit turns into an actual benefit. But importantly they're not just wearing masks. They're wearing gowns and gloves and eye protection and they have access to water and soap and alcohol hand gels and infection control teams to train them on how to wear it correctly.
Here's what HCPs are wearing. Are you honestly suggesting this for members of the public? https://twitter.com/QEGateshead/status/1244208756600307712
Here's a simple graphic for donning: https://twitter.com/agtruesdell/status/1245470479059767297?s...
Here's a thread talking about donning, wearing, and doffing PPE. https://twitter.com/halletjulie/status/1245409318775767042?s...
This is not the CDC / WHO / etc lying, this is them talking about the science as they understand it. https://twitter.com/shinybluedress/status/124277978004452147...
> even a bandana can likely help prevent disease transmission
You're basing this on a small study carried out in a lab using research bacteria (not viruses) carried in a calibrated spray, that didn't include "people breathing through the mask". You've massively overstated those results.
It's pretty fucking obvious that if you have Covid-19, and are expelling infected droplets into the air, almost any kind of mask will help reduce those droplets. I mean, wait for the double-blinded mask study (n=200) if you want. You may end up waiting for quite a while. Meanwhile, overall transmission rates in Asian mask-wearing countries are lower than Western transmission rates, despite taking many of the same precautions other than masks.
The point with masks, even rudimentary ones, is that they help prevent the wearer from transmitting respiratory disease.
And there's a point during a pandemic when you drop the Nature/Science level of evidence when you're talking about a relatively low-risk intervention like wearing a bandana.
In the words of the author of one the studies you disdain: "In normal times we'd say that if it wasn't shown statistically significant or the effective in real-world studies, we don't recommend it," he said. "But in the middle of a pandemic, we're desperate. The thinking is that even if it cuts down transmission a little bit, it's worth trying."
BTW, the author of the study I'm talking about here studied transmission of viral infections (influenza and coronaviruses) with an n of 111, not bacterial infections: https://www.nature.com/articles/s41591-020-0843-2 But there are multiple studies from the past decade that indicate that masks help prevent spread of respiratory viruses.
Finally, you harshly criticize my comment for lack of evidence, and yet you pull this one out: "It's likely that in members of the public the main route is touching an infected surface and then touching your eyes, nose or mouth." We have no idea if that's true or not at this point.
And here's another statement you pulled out of nowhere: "As soon as you drop any of those you're not just making the mask a bit less effective, you're probably increasing the risk over not wearing a mask at all."
You seem to have started from a position of defending the CDC, and then from there gone on cherry pick evidence or pull statements out of thin air.
There are people I know working at the CDC that I respect a great deal. But this PR campaign to lie to the American people to preserve mask stocks was a bad, bad idea.
> We know that qualified registered healthcare professionals who know the consequences of not wearing PPE correctly still struggle to do it all correctly.
No significant difference between fitted and non-fitted N-95 masks: https://www.ncbi.nlm.nih.gov/pubmed/21477136
And no, I wasn't even talking about wearing hospital-level PPE. I was talking about masks, and even mentioned bandanas, for crying out loud. But keep on spearing that red herring.
And here yet again, obviously N95 masks can help prevent transmission of respiratory viruses, including SARS-CoV-19. We know this to be true.
> This is not the CDC / WHO / etc lying, this is them talking about the science as they understand it.
You linked to some random ICU nurse, who makes some great points but has nothing to do with the CDC or WHO. But I agree that frontline health workers should absolutely have precedence to N-95 masks and other PPE.
> You're basing this on a small study carried out in a lab using research bacteria (not viruses) carried in a calibrated spray, that didn't include "people breathing through the mask".
Finally, you have no idea what I'm basing this on. Actually, it's common sense here that if you're infected, even as an asymptomatic carrier, wearing a bandana can reduce spread of droplets.
1) spirochete reproductive form and susceptible to a number of antibiotics (vitro/vivo) 2) round body "starvation forms" which are resistant to most antibiotics (vitro/vivo) 3) biofilm colonies which harbor many pathogens, metals and mycotoxins are resistant to antibiotics (think immunosuppression here)
I've gone through a shit ton of tests in the last few years going over much of this. I have relatives that experienced it as well. There is growing scientific evidence a ton of clinical improvement, yet "anecdotal" patient evidence that many of these pathogens can persist beyond initial treatment. Buhner does an excellent job of explaining some of this in "Healing Lyme" and backs it up with studies from around the world. His protocols certainly help people (myself included).
Immune expression and context is a tough nut to crack and we need billions of more data points capturing cytokine signaling in conjunction with T-cell, Nk cells, mast cells, antibodies, etc to get a better understanding of HOW UNIQUE EACH IMMUNE RESPONSE IS TO A PATHOGEN. Life on our planet is biological and tightly coupled with bacterial/parasitic/viral pathogens and would not exist without them. Things quickly change through reproduction or in the case of Borellia by shifting its outer protein to better evade compromised immune systems. Or has there just been one flu/corona/etc viral strain in the last hundred years? (<- No). These things have remained in existence for a long time, it is foolish to think they cannot adapt.
Mind the 'gap' with disulfiram. It seems side effects vary, but also the quick elimination of Lyme, Babesia (not sure about Bartonella, which is mainly endothelial), and the cytokines cascades they trigger, but removing them all it once vs reducing them from severe to immune manageable levels might cause its own set of issues.
I won't bring up the CDC as they've failed millions of Lymies at this point with poor test protocols and failure to push for more research data. Test skipping 31, 34 antibody proteins when they are primary Borellia proteins (if the body is able to produce them, immunocomprimised or the load from multiple infections). The single dose doxy is absolute bullshit (1 data point from me). The denial that ticks can transmit Borellia (Lyme) and Bartonella in the same bite (bullshit, many tick samples on both costs show something like 2.6 pathogen average). In my personal experience, Bartonella is an absolute bitch to get rid of.
We need to better educate ourselves by owning all of our data in a way that enables us to submit it to research projects that are publically funded and not driven by patent revenue which pushes economies of scale. (off soapbox now :-)
This paper is from Marianne J Middelveen, who is well known for embracing quackery and producing questionable papers.
Her earlier claims that Lyme is a sexually transmitted disease were quickly dismissed, though not before generating a lot of noise in the media: https://www.aldf.com/wp-content/uploads/2016/12/Lyme-Borreli...
She also writes papers about "Morgellons Disease", a delusional disorder in which patients believe threads and fibers from their clothing and other fabric are actually sprouting from within their skin. The condition is universally acknowledged as a delusional disorder, but MJ Middelveen treats it as a real disease with no real evidence.
> I'm not gonna bother digging up the others, honestly not worth my time to try and convince one random person.
This is my least favorite part of discussing Lyme online. So many people are deeply convinced of their chosen narrative that they unquestioningly accept any papers that support their claims, while refusing to acknowledge any evidence to the contrary. This has created quite the market for pseudoscientific researchers to peddle narratives and pseudo-research that meets the demand for what people want to hear.
In the end, it only sets the field back. I would love to see a magic combination of antibiotics that reverse PTLDS symptoms, but decades of high-dose, extended duration antibiotic trials have provided zero benefit to patients, despite the demand.
SCAM SOP. Because it’s all about Them. Peddlers reap wealth and adulation; victims are miserable AF but “vindicated”. Talk about mutual parasitosis.
Let's ignore the research because we don't like the researcher. That's how science works.
The gold standard in microbiology for diagnosing an infectious disease has always been to culture the organism alive. Despite notorious difficulties in culturing Borrelia burgdorferi, in about 30 studies this organism has been cultured alive from patients despite at least standard antibiotic therapy, and in many cases after antibiotics far in excess of what is deemed curative by IDSA and CDC. If the pathogen that causes a disease is still present in conjunction with symptoms compatible with that infection, it would appear to me that the fundamental questions about the cause of long term symptoms should have been answered a very long time ago. To add insult to injury, recent studies from Tulane, Johns Hopkins, and Northeastern University all demonstrate that we can’t even kill Borrelia in the test tube with the currently recommended antibiotics. What are the chances that a second disease of mysterious etiology but with the same symptoms as the first disease, would come and replace the first disease when there is published evidence that the pathogen which causes the first disease persists despite both short and long-term antibiotics? There are numerous chronic bacterial infections which require long-term combination antibiotic therapies: Tuberculosis, leprosy, coxiella endcocarditis, brucellosis, Whipple’s. Why should Lyme be different?
>I would love to see a magic combination of antibiotics that reverse PTLDS symptoms, but decades of high-dose, extended duration antibiotic trials have provided zero benefit to patients, despite the demand.
Let's take the PLEASE[0] study for example. Although significant improvement in health was measured (on average 4.6 points on the SF-36 scale; 3 points is considered significant progress) the results were presented with the headline: 'Long-term use of antibiotics does not benefit long-term complaints of Lyme'.
While tens of thousands of patients have been cured by a cocktail of antibiotics taken for several months or sometimes years. This is also what the current in vitro research is showing. Lyme persisters can only be killed by a combination of antibiotics.[1] Like tuberculosis. And it's also what this data analysis of 200 patients shows.[2]
>We collected data from an online survey of 200 of our patients, which evaluated the efficacy of dapsone (diaminodiphenyl sulfone, ie, DDS) combined with other antibiotics and agents that disrupt biofilms for the treatment of chronic Lyme disease/post-treatment Lyme disease syndrome (PTLDS). ... Conclusion DDS CT decreased eight major Lyme symptoms severity and improved treatment outcomes among patients with chronic Lyme disease/PTLDS and associated coinfections.
And recently we have the spectacular results of Disulfiram.[3][4] A clinical trial is underway at Colombia University so we won't have official results until 2021 but all signs point to it being a game-changer. Lyme communities are full of people with miracle stories after taking Disulfiram. Why would Disulfiram work if the persistent Lyme hypothesis is wrong?
[0]https://www.nejm.org/doi/full/10.1056/NEJMoa1505425
[1]https://www.jhsph.edu/news/news-releases/2019/three-antibiot...
[2]https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6388746/
You probably should though: this is HN, there are typcially quite some people with a background in academics here. Or just criticially thinking people in general who understand how science works on this planet. tldr; one single paper on a controversial subject isn't going to cut it as proof I'm afraid.
I know there's a guy, or maybe he represents a group of researchers, who thinks that Chronic Fatigue Syndrome is caused by inflammation in the brain, either due to some undetectable infection, or just a misfiring that is a lingering effect of some other insult (sounds to me like a histamine response aka allergy).
If your body thought you had the flu but you didn't, you'd be knocked on your ass not unlike many people with CFS or Lyme. And if it never stopped you'd be in pretty bad shape a year in.
So. Are we treating microbes that don't culture in a petri dish, or are we solving an autoimmune response gone whacky? You could really ask the same question about Crohn's or IBS.
I recall years ago reading a long story about a consultant who was called in to figure out why this black soot was all over a neighborhood around a brewery. The brewery said it was diesel exhaust. But why only this neighborhood? He heard of a similar problem is some town in the UK. But Petri dish after Petri dish cultured nothing that could explain the black soot. Ergo, it's not microbial.
Our intrepid consultant pours a small amount of distilled spirits onto a sample dish, and gets a bunch of black shit. The 'soot' was feeding off the Angel's Share (evaporative losses from the brewery), and would barely grow without it. Vigorous growth in vivo, negligible growth in vitro.
We've come up with a cure or treatment for so many microbes that we can detect, but how do we know we're detecting them all? People die of cancer not because cancer is getting worse (well, pollution notwithstanding) but because Cancer is patient. There's a lot of space in the middle for new vectors to slip in.
Sometimes I read old stuff and think, "wow, I said that?" other times, "I have no idea what point I was trying to make."
>You could really ask the same question about Crohn's or IBS.
No you couldn't. They are clearly auto-immune disorders.
Out of curiosity, do you have any formal training on medicine/physiology or is your knowledge base self-aquired?
An antibody is in some ways similar. They latch onto the bacteria or virus, but instead of invading they glom on and then signal the body to come dispose of this thing.
If your body picks the wrong feature for the pattern, then the antibody could attach to healthy tissue. Maybe one particular type, like insulin cells, or myelin.
And if you look at IBD such as Crohn's or Ulcerative Colitis then sure.
Aren't there diseases where someone are caused not by the microbe directly but by the body's immune reaction to it?
> Out of curiosity, do you have any formal training on medicine/physiology or is your knowledge base self-aquired?
Argument from authority (or lack thereof) is pretty contrary to the HN ethos, imo. You're not right because your degree says so, but because the facts do.
Yep. For example, that's what causes the "cytokine storm" in COVID-19.
There are symptoms that can be caused by that. The characteristic of an autoimmune disorder is that the response never ends( either chronic or with flare ups) or takes way longer than a normal one would.
> Argument from authority (or lack thereof) is pretty contrary to the HN ethos, imo. You're not right because your degree says so, but because the facts do.
What facts did you state then? I'm asking where does your thinking process stems from?
My daughter has an auto-immune disorder and it took two years and a brain biopsy for the best pediatricians in Canada to determine it was auto-immune related. Of course you may dismiss that by saying there are no good doctors in Canada because they're not from (wherever you're from), but your casual dismissal of the complexity of these disorders is simply wrong.
And your last sentence is clearly not just "out of curiosity".
This isn’t an argument that supports your reasoning. It’s just an appeal to authority.
> When an immuno-suppressive is effective at reducing symptoms you know it’s an autoimmune disorder.
Is surgery an autoimmune disorder? A lot of doctors will give a patient steroids to reduce inflammation after surgery.
[0] https://experiments.springernature.com/articles/10.1038/npro...
Disease modifiers like methotrexate or stelara will suppress aspects of the immune system, which protects the body from further damage. Ibuprofen on the other hand will mask pain but not modify the underlying issue.
If CBD was effective (for me it doesn't seem to be), then the challenge is in understanding if it is modifying the disease, or just hiding symptoms like ibuprofen would for pain.
1) it seems that "chronic lyme specialists" are physicians who realized that each patient they diagnose with "chronic lyme" is potentially a cash cow. In that they can be persuaded to pay out of pocket for regimens of IV infusions of antibiotics costing up to tens of thousands of dollars (and which make no antimicrobial sense). For years, because the "spirochete is hiding, round bodies, etc etc". The agents used also make no antimicrobial sense - when we show the med history to ID specialists and PharmD's, they just roll their eyes...
2) As a resident, we had a couple of cases roll through the door of a) temporal lobe epilepsy with mesial temporal sclerosis, b) Parkinson's disease, both pretty clear diagnoses, told by various "chronic lyme specialists" that their symptoms were due to Lyme,taken off their meds and put on strange regimens of IV ceftriaxone (at out of pocket expense) and ending up hospitalized as a result. With such severity that efforts were made to have the state board revoke the medical licenses of these practitioners.
I can't stress enough how angry I am at some doctors I met, that had so little empathy and so much ego. Not only their incompetence allowed my condition to worsen and make the recovery harder and longer, they made me question my sanity and lose hope without caring a little bit about how it would make me feel. If it wasn't for the support of my loved ones, it would have been the loneliness and despair that would have killed me.
The only reason I haven't fallen into the "alternative medecine" world is because the ones I have met have been even more bullshit. But at least they cared (and for most, not in a predatory way. They genuinely wanted to help). No wonder so many people can fall into predatory practices when left alone like I was.
If the doctor doesn't even acknowledge the syndrome is "real" or even further implies it is psychosomatic, it may drive people away from the more rational establishment to the fringe. On the other hand, empathizing with the patient, catching up on the latest research, taking the time to explain it to the patient and their options, is time consuming and hard to do with billing constraints and electronic medical records TPS reports and such. Much easier (for this class of doctor) to dismiss it all as patient self-diagnosis of quackery and move on to the next patient.
My mother has lupus and when she first started showing systems her (prior) GP dismissed them out of hand and point symptoms and then started to treat her as somewhat of a malingerer. Ironically, it was her acupuncturist that drove her to see a rheumatologist - who took the time to go through a variety of diagnostics (and recommendation to a new GP and other specialists) to identify the problem and a treatment that let her return to life with things in a more managed state.
QFT.
While PTLDS is a real thing (being long-term sequelae to the original Lyme infection), be very wary of anything labeled “chronic lyme”, which is a common code-word concoction of “Lyme-literate” MDs/DOs, naturopaths, and other quacks for peddling their nostrums (including permanent courses of antibiotics; a great way to make anyone sick as a dog).
https://sciencebasedmedicine.org/?s=lyme
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Bonus irony: GSK actually created a successful vaccine against Lyme 30 years ago:
https://www.vox.com/science-and-health/2018/5/7/17314716/lym...
No prizes for guessing who destroyed that.
I know this because I live in a very tick infested area (Ozark Mountains) and very few people who've grown up here in families that have lived here for generations get lyme disease. I don't personally know anyone who has.
Since I was kid in the `60s, and long before that, parents here did "tick checks" every evening. After calling us in mom's would strips us little kids down naked and pick any off they found and demand the older kids do it themselves and it becomes a habit. So does being aware. I mean, I don't ignore it when I think I feel one on me and I'm always aware there might be.
I'm 61 now and I've been bit more times than I can count, but I still make a point to do a tick check every evening.
Check out this video I made a couple years ago. They can get thick here...
Not to downplay the importance of tick checks and other prevention techniques.
Note that cases are reported by state of residence, so even the handful of cases in Arkansas and Missouri are probably attributable to travel to the upper Midwest or Northeast.
However, the Ozarks do have a high incidence of Rocky Mountain Spotted Fever, so you should still be careful about preventing tick bites and removing them ASAP: https://www.cdc.gov/rmsf/stats/index.html
But, damn, that map showing the incidents in the eastern States is sure impressive.
It would be interesting to study the tradition of "tick checks" here and there to get an idea of how that might affect those numbers.
Traditionally areas with lots of deers (at least in my country), but they are now revisiting the idea it being directly linked with the amount of deers.
I'm diligent with checks but I've been infected with Borrelliosis. Had the rash, had the Doxycycline 100 mg BIDx21.
Hate those guys.
My main comments are the same from a thread about lyme on HN 7 months ago [1]. If you follow it to it's terminal conclusion, it shows that neurologists had a standard course of therapy for lyme. The alt-lyme community insisted that it was too short, and you needed long term treatment (with a duration based on their own experiences/treatment regimens). So conventional medicine studied the longer courses of treatment, and found there was no difference when studied in an objective way (randomized double blind comparison). Well, as soon as that happened, the goal posts got moved back, and they alt-lyme community said "well of course the study was negative! the treatment course wasn't long enough! It needs to be 12 weeks, not 8 weeks" (or whatever), even though they had consistently been saying 8 prior to the study. And still conventional medicine is open minded about any evidence that can be provided. That's how science works! But you are going to need to pay for the evidence, lyme people, because we feel like we did our due diligence with the first study, and don't need a repeat of the public health resources that were wasted searching for the autism-vaccine link over and over again.
Even the other treatment outlined in this blog post (disulfuram) has an open study that is still looking for volunteers. That tells you a little bit about the level of need (modest, but not zero) and the disinterest of the patient community in advancing science (you can draw your own conclusions here).
Related to this Stanford post specifically, I'm disappointed.
> We'd been bitten by unseen ticks harboring the parasites that cause Lyme disease and babesiosis, a malaria-like disease
It's far (far!) less like malaria than it is to syphilis. It's a bit like saying "this is a border collie, which is similar to a Maine Coone". Ok, well... kind of. To the extent that they are both mammals. But why are we not comparing the border collie to a great dane or a poodle? Because those are just as familiar, and way more similar.
What syphilis and lyme have in common is that they are both spirichete bacteria, and a huge portion of the disease burden if it's not diagnosed quickly (and it's often not...) is due to autoimmune injury. You can completely kill all the bacteria in the chronically infected person, and their life will not get any better, because the autoimmunity is present, and unrelenting. Which is the second big criticism of this blog post: killing all the bacteria is not the challenge, and this discovery, while awesome, is not awesome for the reasons described.
PragmaticPulp really nailed it here with what is now the top comment on this thread.
> for reasons that are unclear, the antibiotics don't work for up to 20% of people with the tick-borne illness. One possibility is that drug-tolerant bacteria cause the lingering symptoms.
these reasons are only unclear to the alt-lyme community.
> Many researchers believe that doxycyline's inability to clear the persisters may account for the ongoing symptoms of some Lyme sufferers.
Yes, the same researchers that are working on climate change for Exxon. It doesn't mean they won't disprove climate change, but it means they are outside the conventional understanding of this area of science.
Overall, though, the science story here is legitimately cool! The scientists are using the application of a high-throughput system to test multiple compounds with known safety profiles against a pathogenic organism. That's an awesome form of problem solving consistent with the hacker ethos, and is done a disservice when presented along side this alt-lyme woo.
A lot of the "Lyme-literate" discussion (from a layperson's perspective) talks about: 1) tick-borne coinfections like Babesia, 2) Borrelia "hiding out" in parts of the body where antibiotics don't circulate easily like nerve tissue.
I don't typically see either point addressed in these kinds of discussions. Is the 2nd one even plausible biologically?
This shows a lack of empathy. Patients are either too sick to travel or lack the money. And how would they hear about this trial when so many doctors, like you, deny the severity of the problem? But the main reason is that patients don't need the trial, Lyme communities are full of people taking disulfiram on their own and finally recovering.
www.disulfiram.net
See my other comment: https://news.ycombinator.com/item?id=22769152
Well, now you are attacking my humanity. It's very difficult to have constructive dialog about these issues when individuals attack the speaker, and not what's being said. We are talking about public health policy, which necessarily glosses over individual patients who are suffering and aggregates them into cold, sterile statistics in order to make decisions that are best for society. It's not particularly compassionate, but it's unavoidable if you want resource allocation to be proportional to need.
> like you, deny the severity of the problem
This is a straw man argument, where you take a crummy version of my argument and knock it down. "Severity" is not the word I used. I said "level of need", which is different because it takes severity (magnitude) and frequency into account. Progeria is a devastating (severe) disease, but it's also exceptionally uncommon. From a public health standpoint, both are an important part of determining the level of need, and therefore the level of support that these problems receive.
> how would they hear about this trial
from the internet, where the conventional doctors you are assailing created clinicaltrials.gov in order to make such information accessible to everybody.
> But the main reason is that patients don't need the trial, Lyme communities are full of people taking disulfiram on their own and finally recovering.
Nothing makes us happier than when our patients are connected with effective treatments. Nevertheless, the publications you site appear to lack random assignment, placebo control, or a double blind. Therefore I find the data uncompelling, even as I am happy to see that there is a trial for it; I hope it includes these three elements which make the results most meaningful.
Absent that study it remains possible that disulfuram will be the miracle cure you claim that it is, but I'm not expecting that to happen, and I suspect that chronic lyme will be a topic on HN in another 9 months exactly because the needle hasn't moved far enough. Please prove me wrong! That's how big breakthroughs are made! (witness h pylori infection and gastric ulcers). But please excuse me if I don't hold my breath for the announcement, and advocate more more conventional research during that time.
I got the regular treatment and it all cleared up, but it was an odd experience.
Is there a reliable scientific cite† for this PR piece’s statement that “antibiotics don't work for up to 20% of people with [Lyme disease]”?
Because the only “20%” I’m seeing commonly mentioned elsewhere describes the 10-20% of patients who develop post-infection sequelae. Which is NOT the same as “antibiotics don’t work”.
Or has Stanford PR just put its size thirteen in its mouth?
(†And I don’t mean the “Lyme-literate” quacks and other AltMed scammers.)
(Also, the numerous grammar errors show that the paper wasn't edited or reviewed at all!)
https://photos.app.goo.gl/vs4d1k8CGPekvPUC7
Now imagine if it's not on your leg but in your hair. Yeah, good luck finding that. I think it's also relevant to say that the bullseye appears less than half the time that people get lyme, and it's not always a bullseye. I've had weird scaly white rashes, etc.
My advice is go here and buy medicine so you don't have to bother with a doctor. https://fishmoxfishflex.com/collections/fish-antibiotics
Sucks, but that's the life. Take care of yourself.
edit: I highly recommend this video if you're interested in learning more about tick-bourne diseases in the midwest, Lyme is often just the name applied to a bunch of diseaes. https://www.youtube.com/watch?v=-N9rx1Vqxbc
[1] https://valneva.com/wp-content/uploads/2019/06/2018_12_17_VL...
>>> This process entails acquiring "libraries" of thousands of known chemical compounds and drugs, then mixing Lyme bacteria with each in tiny wells to see which ones are best at killing the organisms. The best drug candidates were retested in larger culture dishes, then the safest of these were tested in vivo in seven mice.
Thanks docs!
Cryptolepis contains quinine and used by some tribes in West Africa to treat malaria.
This is very exciting for a group of people that have felt forgotten and ignored by the medical industry
Because this is not just about those people who are sick right now. It’s about the many, many more who will be sick in future: useless or harmful treatments released to market will negatively impact all of them too.
So let’s not lose perspective here. The FDA does not kill people. Diseases kill people. It’s the FDA’s role to reduce that toll over time. For there is no problem that cannot be made still worse through addition of greed and histrionics.
As per usual, follow the money to see who’s championing lowered standards. Short-termism works fantastically for quarterly bonuses, not so much for delivering decades-long improvements in the healthcare that will affect your children and your grandchildren and your great-grandchildren too.
https://sciencebasedmedicine.org/federal-right-to-try-over-a...
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Oh, and it really shouldn’t need repeating that the FDA already provides early access to still experimental treatments, but I guess it does:
https://www.fda.gov/news-events/public-health-focus/expanded...
You might want to consider why those calling for the FDA’s neutering commonly fail to point that little factoid out. Since, you know, they’re wanting to help the patients n’all.
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That's not to say it doesn't work. It was a small trial with issues. But right now it's the best evidence there is.
In case you are interested, here is a larger study from in Wuhan that showed lower time to recovery on hydroxychloroquine: https://www.medrxiv.org/content/10.1101/2020.03.22.20040758v...
Though... it seems it has plenty of issues as well, see the comments on pubpeer: https://pubpeer.com/publications/71E74AD5896DCF99981A47917DE...
In the trials registry [1] this was registered as a three arm trial with 100 patients each, so 300 overall. Yet the paper mentions ony two groups with 31 patients each. That alone looks very dubious...
It would make sense, if they couldn't get 300 research subjects, that there would be a change of protocol. Also, I think it could have been a good idea to switch from viral load and t cell recovery time to something more meaningful and quick to measure like TTCR and pulmonary condition, but again, they don't explain the change so for all we know the change was to get their names on a more exciting paper.
I see no reason why they would drop the placebo either.
We really do have to wait for the bigger and better trials.
https://www.ncbi.nlm.nih.gov/pubmed/8546725
https://www.sciencedirect.com/science/article/abs/pii/S10434...
I haven't read her book, but it sounded good, and she definitely knows what she's talking about.
Bitten: The Secret History of Lyme Disease and Biological Weapons, By Kris Newby.
1) it appears to be effective against three main forms of the Borrelia spirochete: the normal corkscrew shape, the round-body cyst, and biofilm (they don't call it by that name, but say "drug-tolerant persisters" whose meaning I'm inferring from rest of the literature).
2) it was approved to be tested in mice, which is a step on the way to human clinical trials. Other results, such as the active compound in honeybee venom, melittin, were only tested "ex vivo" on pigskin at body temperature.
3) it has the potential to work as quickly as antibiotics, and not 9 months to 2 years as many plant-based protocols take. Potentially without killing human gut flora.
There is anecdotal evidence of PTLDS patients who are skilled with phlebotomy being able to culture lyme bacteria from their blood samples after letting them sit for a day or two, something that no conventional blood lab has time to do.
Self-directed guide to blood microscopy to identify lyme borrelia (unverified by me): https://www.healingwell.com/community/default.aspx?f=30&m=37...
Videos of spirochetes emerging from red blood cells (unverified by me), please excuse funky beats. This one is a little too horrifying for me to watch, as the bacteria is super creepy-looking. https://howirecovered.com/lyme-disease-under-the-microscope/
Unfortunately, the lack of peer-reviewed results to verify this could mean either this method is not reliably reproducible, or there is no funding / appropriately prestigious or profitable way to pursue this line of research.
It's a question I'm interested in, and would help fund as a citizen scientist. Even without a proposed treatment, the methodology of reliably detecting Lyme borrelia in blood could itself be patented.
I'm very grateful this kind of research continues!
I think you missed the caption on the black and green picture:
> This image shows how the Lyme bacteria, Borrelia burgdorferi, form protective round body "persisters" when threatened by defensive immune system biochemicals in blood serum.
Re: #2
You don't need approvals to test in mice.
Re: #3
Antibiotics kill/greatly-diminish gut flora. Azlocillin is an antibiotic related to penicillin.
The other promising drug mentioned, disulfiram, is nothing to be trifled with, either: