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.
You are attacking me for saying "lyme people" even as you use "lyme patients" in the same sentence. There is no difference: both use lyme as an adjective to define a subpopulation using a completely innocuous starting population ("people" v "patients"). I'm just starting with a bigger group, because unaffected family, friends, etc can have these opinions too.
In reality, patients with Lyme have a worse quality of life than those with AIDS or cancer. It's that bad. And what you wrote tells me that you, as a doctor, don't seem to understand that.
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.
[1] https://news.ycombinator.com/item?id=20749216