This has no bearing on the tests of this new drug, but it's worth noting that the best prevention is getting ticks off of you quickly. 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…
Lyme disease bacteria eradicated by new drug in early tests
131–140 of 186 posts
Re: Lyme disease bacteria eradicated by new drug in early tests
#132Earlier quoted context omitted.
Lyme disease talk just makes me think of Nicholas Zakas and then I get bummed out. 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 y…
Smart talking aside it's possible and relatively easy to identify microbes without growing them. When an immuno-suppresive is effective at reducing symptoms you know it's an autoimmune disorder. You can even find specific anti-bodies in some cases. >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…
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.
Re: Lyme disease bacteria eradicated by new drug in early tests
#133Earlier quoted context omitted.
Persistent Borrelia Infection in Patients with Ongoing Symptoms of 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 subje…
> Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease. 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 w…
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/
Re: Lyme disease bacteria eradicated by new drug in early tests
#134Note that they're carefully dancing around the elephant in the room: As far as I know, no one has ever demonstrated that Lyme spirochetes survive a course of standard antibiotics (Emphasis mine): > 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 il…
Out of curiosity how come you have such detailed familiarity with the topic? Sorry if may be a sensitive question but it seems a relatively obscure thing to randomly get into. And to be sure I really appreciate your posts.
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.
Re: Lyme disease bacteria eradicated by new drug in early tests
#135I am a neurologist. 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 co…
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
Re: Lyme disease bacteria eradicated by new drug in early tests
#136This has no bearing on the tests of this new drug, but it's worth noting that the best prevention is getting ticks off of you quickly. 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…
I also live in the Ozarks. Pretty sure that the ticks that bear Lyme disease bacteria are practically non-existent in the Ozarks. They're more relegated to the North East. 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
Re: Lyme disease bacteria eradicated by new drug in early tests
#137Note that they're carefully dancing around the elephant in the room: As far as I know, no one has ever demonstrated that Lyme spirochetes survive a course of standard antibiotics (Emphasis mine): > 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 il…
Out of curiosity how come you have such detailed familiarity with the topic? Sorry if may be a sensitive question but it seems a relatively obscure thing to randomly get into. And to be sure I really appreciate your posts.
Re: Lyme disease bacteria eradicated by new drug in early tests
#138I am a neurologist. 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 co…
>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). This shows a lack of empathy. Patients are either too sick to travel or lack the money. And how would they hear abo…
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.
Re: Lyme disease bacteria eradicated by new drug in early tests
#139Earlier quoted context omitted.
Which trials has it failed? I've really only read through the French one and the one from Wuhan. There are plenty that are still ongoing, of course.
Zheijang study does not show any detectable effectiveness https://clinicaltrials.gov/ct2/show/NCT04261517
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...
Re: Lyme disease bacteria eradicated by new drug in early tests
#140Note that they're carefully dancing around the elephant in the room: As far as I know, no one has ever demonstrated that Lyme spirochetes survive a course of standard antibiotics (Emphasis mine): > 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 il…
Lyme disease talk just makes me think of Nicholas Zakas and then I get bummed out. 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 y…
[0] https://experiments.springernature.com/articles/10.1038/npro...