[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?
        
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