[HN Gopher] Lyme disease bacteria eradicated by new drug in earl... ___________________________________________________________________ Lyme disease bacteria eradicated by new drug in early tests Author : dempedempe Score : 763 points Date : 2020-04-02 23:25 UTC (23 hours ago) (HTM) web link (scopeblog.stanford.edu) (TXT) w3m dump (scopeblog.stanford.edu) | dumbneurologist wrote: | I 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 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 | vimy wrote: | >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 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 | dumbneurologist wrote: | > This shows a lack of empathy. | | 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. | vimy wrote: | >Well, now you are attacking my humanity. | | I do. | | >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. | | Because this, especially 'lyme people', and other elements | of your post show your disdain towards Lyme patients. Can | you imagine someone in the 80's saying those 'AIDS people' | should fund their own research? This kind of behavior | towards patients who are suffering severely is exactly why | so many fall in the arms of charlatans and quacks. | dumbneurologist wrote: | The post I'm responding to is a stanford researcher who | is posting about lyme disease. Is she a lyme sufferer? If | she is she doesn't say so, and I'm not making any | assumptions. | | 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. | vimy wrote: | From the context it was clear you used it as a | pejorative. The tone of your original post was: Lyme | patients should stop whining, it's not that bad of a | disease. | | 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. | nerdponx wrote: | They're comparing babesiosis to malaria, not Lyme. | | 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? | hhas01 wrote: | Something starting to really itch here, and, no, it's not a tick | bite. | | 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.) | PragmaticPulp wrote: | Note 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 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. | Alex3917 wrote: | > no one has ever demonstrated that Lyme spirochetes survive a | course of standard antibiotics | | 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 | PragmaticPulp wrote: | You linked to a study of single-dose Doxycycline as potential | prophylaxis. That's not how Lyme disease is treated. | | 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. | Alex3917 wrote: | https://www.cdc.gov/ticks/tickbornediseases/tick-bite- | prophy... | PragmaticPulp wrote: | > https://www.cdc.gov/ticks/tickbornediseases/tick-bite- | prophy... | | 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. | [deleted] | Alex3917 wrote: | You're reading the prophylaxis guide for Tularemia, not | Lyme. The section on lyme says: | | "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... | [deleted] | hinkley wrote: | 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 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. | jamisteven wrote: | Great writing. | hinkley wrote: | Thanks. I can be hit or miss. Maybe I need an editor :) | | Sometimes I read old stuff and think, "wow, I said that?" | other times, "I have no idea what point I was trying to | make." | Technetium wrote: | Thank you for this comment. It prompted me to look into | Nicholas Zakas and his story. I've decided to make my way to | a Lyme disease specialist based what his information lead me | to think about co-infection. | HeadsUpHigh wrote: | 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 | medicine/physiology or is your knowledge base self-aquired? | majormajor wrote: | This seems to ignore the diseases we don't understand, that | don't fit clearly those criteria, like PSC. | rfrey wrote: | Your comment appears incredibly arrogant to me. | Trivializing detection of auto-immune disorders tells me | immediately you have no experience in the field, or if you | do you are theory-heavy and practice-light. | | 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". | cc81 wrote: | IBS is "clearly not" as it is a diagnosis based more on | symptoms (many different) and there is no clear | understanding of the cause behind it. | | And if you look at IBD such as Crohn's or Ulcerative | Colitis then sure. | smallnamespace wrote: | There is a growing consensus in immunology/rheumatology | that infections may be a major cause of autoimmunity. One | mechanism is molecular mimicry - antigens from foreign | invaders that are similar to your body's own proteins | trigger your immune system to attack both self and invader. | | https://www.nejm.org/doi/full/10.1056/NEJM199912303412707 | stainforth wrote: | Why is the auto-immune response chronic, if say the | original infection passes? Or is the infection constant | as well? | hinkley wrote: | Viruses typically invade a cell by latching onto a part | of the cell membrane, usually a receptor of some sort. | Those receptors are for some biologic process from | regulation to nutrition. If it can't mimic any structure | it can't reproduce and will be selected out. | | 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. | darkerside wrote: | > When an immuno-suppresive is effective at reducing | symptoms you know it's an autoimmune disorder. | | 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. | dempedempe wrote: | > Aren't there diseases where someone are caused not by | the microbe directly but by the body's immune reaction to | it? | | Yep. For example, that's what causes the "cytokine storm" | in COVID-19. | odyssey7 wrote: | > Out of curiosity, do you have any formal training on | medicine/physiology or is your knowledge base self-aquired? | | 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. | zxexz wrote: | I think you raise an excellent point, that many don't really | think about. Detection is hard, and research on microbes is | hard if you can't grow them in-vitro. There is research in | this space. A few years ago, I had a lecture from Slava | Epstein, a professor who has made some major inroads in this | space[0]. | | [0] https://experiments.springernature.com/articles/10.1038/n | pro... | y-c-o-m-b wrote: | Detection is hard indeed. Here is an interesting research | on patients with neurological disabilities though normal | imaging (MRI) results, but abnormalities found when | inspected using diffuse tensor imaging: | https://nn.neurology.org/content/5/3/e456 | Beltiras wrote: | Don't Crohn's and IBS nigh disappear when using CBD heavy | Cannabis? Pointing towards a combination of inflammation and | stress. | hinkley wrote: | Ibuprofen doesn't make the flu go away, but it protects you | from having a seizure from high fever. | kortex wrote: | I really enjoy your writing style. Flows extremely well. | Ericson2314 wrote: | Not to get in this heavily politicized fray, but PTDLS sure | sounds easiest to explain as permanent damage after the | disease. I mean, we already know nerves heal poorly. Why don't | I hear more about this hypothesis? | tempestn wrote: | I don't have any knowledge beyond what's in this article, but | it appears that there is some evidence of Lyme bacteria | surviving antibiotics, and the reason why this can occur: | | "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." | PragmaticPulp wrote: | Yes, but note that they also admit that we only have some | indirect suggestions that persistent infection is the cause | of PTLDS symptoms: | | > 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. | smallnamespace wrote: | Your evidence bar may be unrealistically high here--Lyme | has never been successfully cultured in any context (unless | you count xenodiagnosis as a form of culturing). | oblib wrote: | Well, all he's really doing here is pointing out it's not | time to pop the cork on the bottle 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. | PragmaticPulp wrote: | > Lyme has never been successfully cultured in any | context | | 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. | hhas01 wrote: | "As far as I know, no one has ever demonstrated that Lyme | spirochetes survive a course of standard antibiotics" | | 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 | | -- | | 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. | ejstronge wrote: | This is amazing - thanks so much for the LYMERix link. I'm | nearly done with medical school and somehow never heard this | story! | mrfusion wrote: | Do PTLDS patients actually show active antibodies against lyme? | That would be a good indication what's going on. | megous wrote: | "Antibodies normally persist in the blood for months or even | years after the infection is gone; therefore, the test cannot | be used to determine cure." | | https://www.cdc.gov/lyme/diagnosistesting/index.html | mrfusion wrote: | Sorry I meant IgM not IgG. | megous wrote: | The page says that: "Positive IgM results should be | disregarded if the patient has been ill for more than 30 | days." | | The reason may be this: | | https://www.sciencedirect.com/science/article/pii/S119874 | 3X1... | mrfusion wrote: | Thanks for responding. But that study says they assumed | the results were false positives. | | Maybe for the purpose of that paper that's fine. But I'm | not sure if it supports your statement. | megous wrote: | They also list a few reasons for the assumption. | | 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. | FranciscusG wrote: | But they give no scientific arguments for that. They | simply voice an ill-argued opinion that basically amounts | to that they do not BELIEVE in IgM antibodies for Bb | s.l., even though the test objectively does show them in | a large number of people diagnosed and treated for | Borreliosis. | James_Henry wrote: | >> 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 | | 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. | PragmaticPulp wrote: | I'll review the citations in this study once again, but the | evidence for lingering spirochetes _in humans_ is always | thin. Much of it relies on indirect testing that is difficult | to replicate or prone to laboratory errors. | | 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. | power wrote: | I'm interested in your opinion of the citations too. They | purport to show persistence beyond standard treatment in | mice, dogs, macaques and humans, the latter via | xenodiagnosis and PCR. PCR is pretty direct. | wolco wrote: | The idea of lingering unwanted resistant bacteria not being | killed by antibiotics have been shown true with other spore | type bacteria. I don't have the background in this specific | bacteria, why do you believe it would be so different? | loeg wrote: | It seems like their opinion is informed on the basis of | the existing scientific evidence, which is eminently | reasonable, IMO. | caycep wrote: | In my (brief) experience with PTLDS sufferers, there have been | a couple of disturbing realizations/experiences: | | 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. | matthewdgreen wrote: | I don't doubt everything you're saying, and that unscrupulous | physicians are genuinely taking advantage of their patients. | However, as someone with a family member who was recently | diagnosed with a (largely untreatable) autoimmune disease, I | want to explain why patients become so desperate that they're | willing to try anything. The basic problem here is that | anyone who goes online and reads about their condition (eg | PTLDS) will find ample scientific evidence that there's a | real condition there -- however, a huge majority of medical | practitioners aren't as caught up on the research as their | desperate patients, and will often express skepticism that | the condition even exists. (Note that this is different from | acknowledging the condition is real and being unable to offer | a treatment.) This destroys credibility in the conservative | medical establishment, and makes it much easier for | charlatans to make inroads, simply by acting like they | believe the patient. My point here is that a little empathy | can go a long way to protecting patients from this outcome. | Adrig wrote: | You're so right... I've been twice in "medical wandering" | where doctors couldn't figure out what I had. First time | was IBS years ago when the condition wasn't well known (2 | years of pain and loneliness before I knew what I had), | second time was for lyme and I'm currently in PTLDS in the | middle of the war between the 2 sides. | | 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. | stainforth wrote: | Doctors are being empathetic when they restrain from | pushing the nonsense quacks do, just to satisfy a patient's | anxiety, no? | jacobr1 wrote: | In this case we aren't talking about the remedy, but | rather the diagnosis. | | 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. | foobarian wrote: | 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. | InitialLastName wrote: | If you live somewhere that Lyme disease is prevalent (much of | the eastern US) and spend any time doing outdoorsy stuff (or | associate with people that do), it's hard not to be aware of | Lyme disease. You'll also likely know people who have had it, | and other people who have persistent symptoms after an | infection. | shmageggy wrote: | Hundreds of thousands of people have been diagnosed with | Lyme, so probably millions know someone who has. There are | posters about ticks at nearly every trailhead I've visited in | the northeast US in the past five years. It's not obscure. | PragmaticPulp wrote: | > Out of curiosity how come you have such detailed | familiarity with the topic? | | 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. | vimy wrote: | 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 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. | lymeeducator wrote: | Lyme has three known forms of existence in mammals: | | 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 :-) | cpascal wrote: | Buhner's book is wonderful. Extremely well researched. | Anecdotally, (n=3) his evidence-backed protocol worked to | treat my family and I after antibiotics did not work. | stinos wrote: | _I 'm not gonna bother digging up the others_ | | 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. | araara wrote: | Thank you very much for sharing your knowledge on the | Internet. You might think you're convincing just one person, | but you're educating hundreds more. | PragmaticPulp wrote: | > 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 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. | vimy wrote: | >This paper is from Marianne J Middelveen, who is well | known for embracing quackery and producing questionable | papers. | | 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/ | | [3]https://www.ncbi.nlm.nih.gov/pubmed/31151194 | | [4]https://www.lymedisease.org/disulfiram-kinderlehrer-2/ | hhas01 wrote: | "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." | | SCAM SOP. Because it's all about _Them_. Peddlers reap | wealth and adulation; victims are miserable AF but | "vindicated". Talk about mutual parasitosis. | FranciscusG wrote: | You're right about the quacks and the delusions. I have | auto-immune issues after a Bb infection and after three | years of high-dosed Doxycycline I still tested positive for | IgM (active infection). Tested by a German state-accredited | reference lab. I'm self employed and never asked for | disability money, never kept going to doctors to try to | solve the issue. I now have CFS and Rheumatoid Arthritis | and when I stop taking Doxycycline (I try that all the | time, I hate taking pills), I get severe neurological | problems, such as incontinence and my breathing stops all | the time and many other symptoms such as extreme | tachycardia in rest, aggression etc. Something is wrong. | Does Doxycycline manage my CNS inflammation or are there | still spirochetes? | djsumdog wrote: | > Just like they are about the masks for covid-19 | | What is the CDC saying about masks for covid-19? Are you | saying they're not effective or the CDC is downplaying their | effectiveness? | wetpaws wrote: | CDC plain saying they are not effective and not | recommending them | octodog wrote: | Wrong. It's much more nuanced than that. | | 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. | wetpaws wrote: | >Surgical masks are not effective at preventing | infection. They are effective at spreading infection. | | 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%8 | 3%B... | bregma wrote: | > Laboratory tests find that improvised cloth masks block | 60 - 80% of virus particles | | 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? | wetpaws wrote: | https://www.thelancet.com/journals/laninf/article/PIIS147 | 3-3... | | >higher viral loads associated with severe clinical | outcomes | Enginerrrd wrote: | >Surgical masks are not effective at preventing | infection. | | 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/258 | 525804_Testing_t...) | voldacar wrote: | Weeks ago the CDC lied, saying that masks aren't effective | and that the general public shouldn't wear them. They did | this ostensibly to keep the existing mask supply available | only to medical workers. Needless to say, if they're | ineffective for the general public, they're ineffective for | doctors and nurses. And so people saw through the bullshit | didibus wrote: | I remember reading the CDC website, and I don't remember | them saying that. | | 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. | djmips wrote: | Right but if you can't tell if you're infected then you | should always wear a mask. I mean how much more | additional trouble is that then making everyone stay | home. | ramshorns wrote: | > _Needless to say, if they 're ineffective for the | general public, they're ineffective for doctors and | nurses._ | | 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. | kaikai wrote: | Not sure why this is getting downvoted. Wearing a mask | correctly, in a way that gets a proper seal, is something | health care pros are trained to do and most people | aren't. If you're constantly touching the mask (which has | been concentrating particles in the air) and then | touching other parts of your face, the mask is less | effective. | Larrikin wrote: | When you know touching your face is the worst thing you | can do this has personally been a proven lie. I assume if | there is science behind a study that tracks people | through out the day and shows people touch their face | more often, that they were not told to avoid touching | their face. I think to touch an eye brow or my hair and | my face subtly moves and I feel the mask on my face and | realize that I should not come anywhere close to my face. | People are not stupid, they just need to be educated. | octodog wrote: | This is seriously and dangerously wrong information. | | 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... | Enginerrrd wrote: | No, what you just said is seriously wrong. The CDC even | coauthored a paper that found during the SARS-1 outbreak | that among contacts of known cases, those untrained | people that regularly wore surgical masks had a 70% | reduced risk of contracting SARS. 60% for those that wore | them intermittently. And in fact, research suggests that | masks are actually MORE protective for the people wearing | them. | | 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/258 | 525804_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/) | fiter wrote: | From your study on point 2: "Results of our systematic | review and meta-analysis show that there was no | significant difference between N95 respirators and | surgical masks when used by health care workers to | prevent transmission of acute respiratory infections from | patients. However, wide 95% CIs from our meta-analysis | must be interpreted as insufficient evidence to determine | whether there is a clinically significant difference." | | 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" | toomim wrote: | Unfortunately, I think you are on the wrong side of the | science on this one. | | 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_5bdyysOeoOB | X4p... | | > 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! | | Nothing in there distinguishes surgical from N95 masks, | which really do block 95% of pathogens. | | 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. | voldacar wrote: | Except they didn't specify surgical masks as opposed to | N95. | lone_post wrote: | Did you ever consider that the CDC guidelines for masks were | intended to prevent hoarding so that those treating patients | on the front lines could access them? | Vomzor wrote: | They should have told the truth. "Mask help but we don't | have enough of them. We need to reserve the few we have for | doctors and nurses. People should use diy masks until we | have more. It's not perfect but it will still help to | flatten the curve." | PHGamer wrote: | right but everyone is out and about. while people in asian | wore masks when they went grocery shppping. i get what they | did but they screwed civilians for sure in the name of | saving doctors. they actively lied about them being needed | so one group would have a better chance. the truth is if | you were going to have any contact with someone you needed | a mask. | loeg wrote: | > i get what they did but they screwed civilians for sure | in the name of saving doctors. they actively lied about | them being needed so one group would have a better | chance. | | 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. | bbarnett wrote: | Think indeed. | | 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. | wetpaws wrote: | Front line personel and hospitals should've been prepared | months if not years in advance. | jnbiche wrote: | No, I think most of us realized that. It's still not OK for | the CDC to lie to the public, regardless of motive. For a | public health organization, the end doesn't justify the | means. | | 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. | loeg wrote: | > For a public health organization, the end doesn't | justify the means. | | Why not? This is a classic trolley problem and throwing | the switch is absolutely the correct answer. | chidg wrote: | It's not classic trolley problem, because there are no | second order effects modeled in the trolley problem. In | this case, there is a secondary effect which is that the | public realises they've been lied to and loses trust in | public health authorities, which is exactly what has | happened. You can only do that a couple of times before | the authority _has_ no authority. | MaulingMonkey wrote: | It is not even remotely a given that throwing the switch | is the correct answer. The Czech Republic made masks | mandatory, met that requirement by churning out a bunch | of homemade masks, and have supposedly been quite | successful in flattening their infection curve in doing | so. | | 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_? | newsbinator wrote: | This is different. A public health organization can only | lie at large scale once before it loses the credibility | that allows it to function in the first place. | | ... probably. | wkearney99 wrote: | For those of you casually tossing that around: | https://www.lastwordonnothing.com/2020/03/25/the-trolley- | and... | DanBC wrote: | A load of people in this thread are saying the CDC (and | others) are lying about masks. | | 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/QEGat | eshead/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/12454 | 09318775767042?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. | rendall wrote: | A public entity, whose stated mission is to provide timely | and accurate information to the public, actually lies to | the public in order to influence some third-hand outcome, | such as less hoarding: a net positive? | | I would argue no, not a net positive at all. To start, | nearly everyone now distrusts the CDC (and WHO) to deliver | accurate information. | loeg wrote: | That is not their mission, stated or otherwise. The | repeated emphasis is on health and saving lives. | | > 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. | asdkjh345fd wrote: | >The repeated emphasis is on health and saving lives. | | And they just killed thousands of people, potentially | tens of thousands. They know, as we have known for | decades, that even simple, home made, cloth masks provide | a huge reduction in the spread of respiratory diseases. | | >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. | | Anecdotally, that does not seem to be the case. I don't | know anyone who trusts the CDC or WHO now, and a bunch of | people now think the WHO is a Chinese organization trying | to deliberately kill Americans, and the CDC has been | infiltrated and subverted by them. That seems like a | major barrier to effectively preventing future epidemics. | MaulingMonkey wrote: | >> CDC conducts critical science and provides health | information | | 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. | torgoguys wrote: | The linked study's lead author is Middelveen. Isn't she the | one who tried to say Lyme is an STD a few years back? I know | nothing about the linked study, haven't read it, but her | sloppiness with scientific rigor makes me nervous about | taking the abstract at face value... | oblib wrote: | 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 | 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... | | https://youtu.be/TFVDv8swzxQ | matsemann wrote: | Not all ticks carry diseases, though. It depends on the area. | | 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. | bregma wrote: | I live in a tick-thick area. I get dozens of bites every year, | and I know you don't feel them and they can get places you | don't always check every day (in your ear canal, in the | inguinal area, on the backs of your upper arms where you can't | see in the mirror without doing extreme gymnastics). The | beggars will ride in to the house on your clothes and bite you | during the night. | | I'm diligent with checks but I've been infected with | Borrelliosis. Had the rash, had the Doxycycline 100 mg BIDx21. | | Hate those guys. | aidanfindlater wrote: | As others have noted, there's little to no Lyme disease in the | Ozarks currently (https://www.cdc.gov/lyme/stats/maps.html). | The other thing is removing the ticks daily; ticks need to be | attached for usually around 36 hours before the Lyme bacteria | move from the hindgut to the mouth, so if you're doing a daily | tick check then you're good (from a Lyme disease perspective). | dempedempe wrote: | 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. | oblib wrote: | One of my nearest neighbor's kids got it here. He had the | classic "ring" around the bite and the tick was fairly well | gorged and swollen when they pulled it off. So it's here. But | that family moved here from Indiana so they didn't grow up | with the tradition of daily tick checks like folks living in | rural areas here do. | | 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. | ourlordcaffeine wrote: | As a FYI, Slovenia is also a lyme disease hotspot. Do tick | checks, wear long sleeve shirts and tuck trousers into your | boots and your shirt into your trousers. Don't give the ticks | any opportunity to crawl onto your skin. | liopleurodon wrote: | The midwest is pretty infested too. Especially parts of WI | and MN | alexhutcheson wrote: | This is correct - you can confirm from the CDC charts here: | https://www.cdc.gov/lyme/datasurveillance/maps-recent.html | | 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 | ericand wrote: | "but for reasons that are unclear, the [traditional] antibiotics | don't work for up to 20% of people with the tick-borne illness" | | This is very exciting for a group of people that have felt | forgotten and ignored by the medical industry | [deleted] | jonathanjaeger wrote: | When I got Lyme as a teenager I was very lucky to notice a bulls- | eye pattern (which not everyone gets) and quickly get treatment, | with no complications after. I wonder if this new drug, or any | future drugs, that work for the 20% of the people that | doxycycline doesn't help, will also help people who figured out | they had Lyme very late after being infected. | rzimmerman wrote: | I had a similar experience. I had a tick bite on my ear and | didn't think much about it. A week or two later I noticed a | secondary bullseye rash on my leg. I am also very lucky that my | mother knew what it was and I was treated quickly with no | complications. | dd36 wrote: | Yes, those are the ones that most desperately need treatment. | AndyMcConachie wrote: | I heard a great interview with the author, Kris Newby, concerning | her recent book, Bitten. | | 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. | heelix wrote: | As someone who is a very active camper (pre-zombie-apocalypses | summers) a human vaccination would be wonderful. When our kid was | bitten, she had the same textbook bulls eye pattern so it was | easy to see a clue. They use to have one, but it was pulled off | the market. | James_Henry wrote: | They're working on the new one: https://www.newsweek.com/lyme- | disease-vaccine-valneva-fda-ap... | wgjordan wrote: | Currently in Phase 2 Clinical Development since Dec 2018, | with interim data expected mid-2020 [1]. | | [1] https://valneva.com/wp- | content/uploads/2019/06/2018_12_17_VL... | toomuchtodo wrote: | Clincialtrials.gov tracking at | https://clinicaltrials.gov/ct2/show/NCT03769194 | mc32 wrote: | Yes definitely agree. With deer pop growth and climate change | the ticks are found in most places now. It'd be nice to know | that if bitten they'd be more of a nuisance than a threat to | health. | acheron wrote: | There are still other tick-borne diseases. Let's see if we | can treat alpha-gal allergy too. | tenant wrote: | Coming from a farming background I spent a lot of time in close | contact with grass etc. No one I know of ever came down with | something like this but now it's becoming increasingly common | though not among farmers. I have a suspicion that a lot of the | people who would have formerly complained of Fibromyalgia, or | mercury allergy, or ME are now getting this. | mrfusion wrote: | Great news! Let's hope the FDA doesn't hold this up for years. | James_Henry wrote: | It's an FDA-approved drug. Doctors could potentially just | prescribe it for off-label use. | greenburger wrote: | Let's hope the FDA does its job of ensuring it is safe and | actually works as its proponents say. I'd rather they not give | it 737 MAX style review. | jseliger wrote: | The issue is not "current practice" or "737 MAX," which is a | false binary; the main issue is whether the FDA is optimally | hitting the space between "safety" and "getting new drugs and | treatments fast," and it appears that the FDA is overly | conservative. See for example _Launching the Innovation | Renaissance_ https://marginalrevolution.com/marginalrevolutio | n/2011/12/la... | greenburger wrote: | Not sure that I understand the argument. The FAA is also | clearly not hitting optimal space between "safety" and | "getting new planes flying fast". Sometimes it appears the | FDA hasn't been conservative enough, see Vioxx and | labelling/guidance around opioids. | evanpw wrote: | The difference is that preventing new planes from | entering the market doesn't kill people. | hhas01 wrote: | But allowing unsafe planes onto the market will. | | 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... | | -- | | 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. | | -- | | https://www.google.com/search?tbm=isch&q=medicine+wagon | | https://www.google.com/search?q=frances+kelsey | [deleted] | mrfusion wrote: | Has anyone tested hydroxychloroquine against Lyme disease? | danielhlockard wrote: | ah yes, the flavor of the month drug. What makes you think it'd | work on Lyme. | mrfusion wrote: | Did we have any reason to think it would work on corona? (I | really don't know) | James_Henry wrote: | Yes, it is an antiviral. | wetpaws wrote: | It also failed clinical trials for covid | James_Henry wrote: | 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. | hannob wrote: | As far as I'm aware there has been only one small RCT | overall on hydroxychlroquine from china and there it | failed. All the other things that were cited in HCQs | favor were essentially garbage. | | 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. | wetpaws wrote: | Zheijang study does not show any detectable effectiveness | | https://clinicaltrials.gov/ct2/show/NCT04261517 | James_Henry wrote: | Thanks for the link. | | 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/10.11 | 01/2020.03.22.20040758v... | hannob wrote: | I wasn't aware of this one yet. | | 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... | | [1] http://www.chictr.org.cn/showprojen.aspx?proj=48880 | James_Henry wrote: | It's not necessarily dubious to change a protocol, but it | is concerning that they didn't report on the changes | along with their reasoning. | | 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. | thomasmeeks wrote: | It is an anti-parasitic and immune-regulation drug. Not | really an antiviral. I guess the theory is that it'd | regulate an immune over-response. But I don't think the | science is m showing that to be true in this case. | James_Henry wrote: | Yes, it is an antimalarial. It also seems to be an | antiviral, too. | | https://www.ncbi.nlm.nih.gov/pubmed/8546725 | | https://www.sciencedirect.com/science/article/abs/pii/S10 | 434... | danielmg wrote: | We still have no good evidence that is does work for SARS- | CoV-2. | dj_gitmo wrote: | The author gave an interesting interview on the War Nerd podcast | https://www.krisnewby.com/media/radio-war-nerd | OliverJones wrote: | COOL! I live in a tick-infested beach community in northeast | Mass, USA. Maybe soon it won't be such a high-stakes deal for | summer houseguests to inspect themselves carefully. One guest got | the dreaded, but she was lucky: antibiotics dealt with it. | | Thanks docs! | onetimemanytime wrote: | So while the FDA has not approved it for this, it is an already | approved drug and people can get it, one way or another. Pretty | good news | nyxtom wrote: | This is neat, very curious about how this process has been | scaled/automated: | | >>> 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. | nickysielicki wrote: | I come from Wisconsin and I've been bit by ticks so many times. | If you don't deal with them you probably miss out on how tiny | these little motherfuckers are. They look like freckles. That pic | with the dime is the same one on my leg there. | | 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 | cryptogoth wrote: | To me, this is an interesting result for three reasons: | | 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! | fludlight wrote: | Re: #1 | | 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: | | https://www.drugs.com/mtm/disulfiram.html | | https://www.drugs.com/sfx/disulfiram-side-effects.html | deesep wrote: | The roots of the plant Cryptolepis, also known as yellow-dye | root, was found to be very effective against Lyme disease. So was | the the Japanese Knotweed: | https://blog.frontiersin.org/2020/02/21/ethnobotanical-medic... | | Cryptolepis contains quinine and used by some tribes in West | Africa to treat malaria. | nsxwolf wrote: | Well shit, wrong disease right now. | mtremsal wrote: | Because of lockdowns? I find some comic relief in concurrent | studies on "Corona and Lyme". | rb808 wrote: | I can't go out of my apartment because of the virus and can't | hang out in the forest because of the bacteria in ticks. What | century is this? ___________________________________________________________________ (page generated 2020-04-03 23:01 UTC)