[HN Gopher] Metagenomics test saves woman's sight after mystery ...
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       Metagenomics test saves woman's sight after mystery infection
        
       Author : neversaydie
       Score  : 190 points
       Date   : 2025-04-30 07:56 UTC (4 days ago)
        
 (HTM) web link (www.bbc.co.uk)
 (TXT) w3m dump (www.bbc.co.uk)
        
       | dtech wrote:
       | What I find most interesting about this story that antibiotics
       | weren't given when the patient had persistent inflammation and a
       | clear cause couldn't be identified. It seems like such a common
       | low risk treatment just to try. Especially curious why auto
       | immune was assumed instead.
        
         | ars wrote:
         | This surprised me also, till I realized the story was in the
         | UK.
         | 
         | From my understanding it's much less common to get antibiotics
         | in the UK vs US.
        
           | OJFord wrote:
           | There's concern of resistance taken seriously for sure, but
           | it's not like people are making out here - I had fluclox
           | prescribed after an online consultation in Jan (for probable
           | cellulitis) - they don't give it out like candy, but when
           | it's indicated...
           | 
           | Maybe they tried something broad spectrum here, and what was
           | necessary (and required the sequencing to know what it
           | actually was) was something more targeted.
        
             | philjohn wrote:
             | Yep - the UK prescribing guidelines from NICE are eminently
             | sensible as a way of staving off antibiotic armaggedon.
             | 
             | One example of the guidance: https://elearning.rcgp.org.uk/
             | pluginfile.php/199275/mod_book...
        
           | MattPalmer1086 wrote:
           | It does feel like they don't hand them out as often as they
           | used to.
           | 
           | I've had 4 infections this year, including an ear infection,
           | fingernail, chest (that caused pneumonia on my son) and one
           | that caused my left eye to swell up.
           | 
           | I received no antibiotics for any of them, just a suggestion
           | that if they didn't go away they might prescribe some. They
           | all got better without them (except my son, who ended up in
           | emergency and was given two different ones which cleared up
           | his infection rapidly).
           | 
           | In the past though I'm pretty sure I would have been
           | prescribed them immediately.
        
             | swores wrote:
             | It's an intentional policy shift that has come not only as
             | guidance to medical professionals, but as an awareness
             | campaign (posters in pharmacies etc.) to the general public
             | that most minor infections don't need antibiotics, and so
             | ones that the body should be able to deal with on its own
             | will no longer be prescribed antibiotics.
             | 
             | It used to be that they were prescribed much more freely,
             | because on the level of an individual case it's unlikely to
             | do any harm and might help speed up getting better, and it
             | was an easy way for doctors to make patients feel cared for
             | to send them off with a prescription. But sensibly that's
             | been course corrected now.
        
         | ajb wrote:
         | We don't actually know that they didn't try first-line
         | antibiotics. My guess is that they did, and it's one of the
         | things that didn't work. The UK is a bit cautious about causing
         | antibiotic resistance, but my understanding is that that's more
         | of an issue with long term use so may not be the determining
         | factor here.
        
         | tekla wrote:
         | > In 2019, while still at medical school, Ellie began suffering
         | from inflammation in her right eye. All tests for infection
         | came back negative and it was assumed she had an autoimmune
         | condition.
         | 
         | You know how everyone complains about antibiotic resistance?
         | Yeah, they're not going to give some random antibiotic if they
         | have no idea what something might be.
        
           | londons_explore wrote:
           | Antibiotic resistance is a problem for _society_. Infection
           | is a problem for the _individual_.
           | 
           | Modern medical ethics requires you always prioritise the
           | individual over society, which means one should always give
           | antibiotics if the benefits outweigh the downsides for this
           | specific patient, even if that means you might cause
           | antibiotic resistance for everyone else in the future.
        
             | tekla wrote:
             | What is a society if not a collection of individuals?
             | 
             | You don't get to complain about antibiotic resistance if at
             | the first sign of an issue you demand a bathing in random
             | antibiotics, especially if you don't even know if you have
             | a bacterial infection in the first place
        
               | Hnrobert42 wrote:
               | As long as the patient completes the course of
               | antibiotics properly, taking antibiotics should not
               | contribute to antibiotic resistance.
        
               | londons_explore wrote:
               | I don't think there is much solid science behind that
               | claim.
               | 
               | Antibiotic resistance could just as easily first happen
               | in the sewers and other places where there is a lowish
               | concentration of antibiotics.
        
               | TaurenHunter wrote:
               | You can't claim to protect society from anything without
               | protecting individuals primarily. Society is not a herd
               | in which you sacrifice an individual to save the rest.
        
               | londons_explore wrote:
               | Isn't putting a murderer in prison for life exactly that?
               | 
               | The prisoner would undoubtedly have a better life if not
               | imprisoned. But society does better if they are
               | imprisoned.
        
               | hkt wrote:
               | See also, placing limitations on political and economic
               | power.
        
             | tialaramex wrote:
             | If you know they've got an infection then I agree that's a
             | problem and medical ethics would suggest treating it with
             | antibiotics if available. But, they didn't know she had an
             | infection.
             | 
             | You're assuming (and indeed US medicine seems to assume
             | this everywhere) that since there don't usually seem to be
             | major negative side effects from antibiotics they're
             | harmless. However we are now confident they're not - lots
             | of interesting things live inside us and whether or not
             | they can cope with antibiotics varies, we're an ecosystem
             | and so this intervention is a massive change to that
             | ecosystem, and while it will usually be justifiable _if we
             | know there 's an infection_ if we don't know that's now a
             | gamble.
        
             | oleggromov wrote:
             | > Antibiotic resistance is a problem for society. Infection
             | is a problem for the individual.
             | 
             | Unfortunately not necessarily. For many chronic conditions
             | an individual may very well develop an antibiotic resistant
             | bug. There's even plenty on YouTube about standard
             | penicillins and strep bacteria that start growing right
             | inside the antibiotics. Look it up, it's fascinating.
        
           | BobbyTables2 wrote:
           | Tell that to my urologists who put me through 4 courses of
           | different antibiotics while 5 tests for infections were all
           | negative...
        
         | jghn wrote:
         | antibiotic resistance is such that it is increasingly less
         | common to use it as just a "take 2 of these and call me in the
         | morning" shot in the dark treatment.
        
           | like_any_other wrote:
           | If the symptoms are a sore throat, yes. If they're going
           | blind, we can take a chance with antibiotics.
        
         | typingonmyphone wrote:
         | Had this been in the US, good chance would have received
         | doxycycline as first line treatment and the leptospirosis
         | identified by metagenomic sequencing would have resolved
        
         | nsagent wrote:
         | Good question. I started having digestive issues a year and a
         | half ago. Went to various doctors and according to their lab
         | tests was told everything was fine, that maybe this was my "new
         | normal." Recently had an infection that necessitated broad
         | spectrum antibiotics and magically my digestion issues have
         | cleared up...
         | 
         | If not for getting sick recently I'd probably still be dealing
         | with whatever gut infection I had that the doctors essentially
         | ignored.
        
           | Aurornis wrote:
           | > Recently had an infection that necessitated broad spectrum
           | antibiotics and magically my digestion issues have cleared
           | up...
           | 
           | There are non-absorbable antibiotics designed to target
           | intestinal bacterial overgrowth. It's hit or miss, though.
           | 
           | Unfortunately for many people, taking antibiotics can have
           | the opposite effect where it creates or worsens gut problems.
           | It's not an easy or reliable solution.
        
           | 2Gkashmiri wrote:
           | My family has been testing various food items and it was
           | found:
           | 
           | .dressed chicken .peanuts .soyabean oil .cumin
           | 
           | And we used to use these food "daily".
           | 
           | The allergy eruptions, digestive issues went from 100 to 5
           | starting next day.
           | 
           | This is such a small thing to check but it has saved us as a
           | lot of trouble.
        
             | swores wrote:
             | Could you clarify what you mean by "dressed chicken"?
             | 
             | And I'm curious, did all of your family find yourselves
             | allergic or sensitive to all of those things, or is that
             | list a combination that covers everyone while each
             | individual was allergic to one or a few of them?
        
               | 2Gkashmiri wrote:
               | One member did an allergy test and that found us major
               | allergens. Rest of family just stopped eating those same
               | things and things got better for everyone.
               | 
               | Dressed chicken, I meant to say broiler chicken. They are
               | raised for the sole purpose of meat and the turnaround
               | time is in 45 days or less now. They pump these birds
               | full of lots of medication, vaccines and stuff. Everyone
               | in the family gets sick eating them. OTOH, farm chicken
               | that are naturally grown and have no medication is fine
               | so its not chicken per se but maybe some medication or
               | food given to these broiler chicken
        
           | jchw wrote:
           | Sorry for your situation, or I suppose, glad to hear it's
           | better. My understanding as a layperson is that antibiotics
           | can be a nightmare for the gut: I don't think it's
           | particularly likely, but you are a lot _more_ likely to get
           | C. diff while taking antibiotics, and I 'm sure that's not
           | the only way it can make things worse, alongside the other
           | caveats of antibiotics (e.g. people misusing them in ways
           | that threatens their effectiveness.) So, I can understand why
           | doctors are not always eager to deploy antibiotics when
           | they're not convinced they will help.
           | 
           | I've personally had quite some experiences navigating health
           | issues, health anxiety, the medical system, etc. Nothing
           | terribly _interesting_ , but, still. I'm actually in middle
           | of scheduling tests to see if I might, in fact, have an
           | autoimmune condition. If they do find evidence of that, then
           | it will have taken me around 6 years to figure it out from my
           | very first symptoms. Thanks to modern medical science, I have
           | little reason to sweat over it, though. (Of course, I'm still
           | hoping for a negative, but at least in the case of a positive
           | I can have the relief of knowing what the hell was wrong with
           | me all this time.)
        
             | soulofmischief wrote:
             | Finding out I had gout was a 10 year process. Apparently
             | "full test panels" don't include uric acid tests. And
             | whenever symptoms are aggravated, it's much harder to test
             | for it anyway as the crystals are lodged in your bones and
             | not in your blood stream and urine.
             | 
             | Now I have to go through the entire process again to rule
             | out everything else before getting a fibromyalgia
             | diagnosis.
             | 
             | Anyway antibiotics have unrelatedly literally saved my life
             | on several occasions now and I am glad that in a few
             | emergencies I was able to access them on the street without
             | needing to navigate the healthcare system. Antibiotics are
             | too tightly controlled for humans and not enough for
             | animals.
             | 
             | That said, I have had to take them enough that I've
             | definitely experienced negative gut effects a couple of
             | times. Now I reach for probiotics after a regimen.
        
             | genewitch wrote:
             | I'm allergic to all cillins and had a spate of issues that
             | required antibiotics 15 years ago, 3 treatments in 17
             | months.
             | 
             | I'll have to take probiotics the rest of my life. Because
             | I'm not doing a fecal transplant, thanks. Those three times
             | of antibiotics completely wrecked my intestines.
        
               | meindnoch wrote:
               | >Because I'm not doing a fecal transplant, thanks.
               | 
               | Why?
        
               | FitCodIa wrote:
               | Previously on Hacker News (I had bookmarked it):
               | 
               | "Antibiotics damage the colonic mucus barrier in a
               | microbiota-independent manner"
               | 
               | https://news.ycombinator.com/item?id=41516419
        
           | TZubiri wrote:
           | Pretty sure antibiotics can make digestive problems worst as
           | a side effect, so it's cool that it worked for you, but
           | hindsight is 20 20
        
           | throwaway743 wrote:
           | I just went through that exact situation.
           | 
           | 5-6 years ago my buddy and I got violently ill on a trip to
           | Japan. Both agreed it's the sickest either of us have ever
           | been, and we both lost 15-20lbs each. Shortly after our
           | illnesses went away we both developed digestion issues. Went
           | through stool samples and colonoscopies. He got diagnosed
           | with uc and I got diagnosed with post-infectious ibs-d. Was
           | told all tests were fine, but life since was hell. That is up
           | until 2 months ago when I went to the ER with an infection.
           | 
           | Was given 2 weeks of doxycycline and voila, I'm no longer
           | scared to fart, not running to the bathroom after eating
           | anything, not going 7 times a day, and having solid stools.
           | Might be tmi but whatever this is something that I'm happy
           | and feel incredibly relieved (no pun intended) about.
           | 
           | Only problem is I still have what I went to the ER for, no
           | one knows what it is, and I have to get another colonoscopy
           | :/
        
         | sushid wrote:
         | Not to mention she swam in untreated water in the Amazon!!
        
         | CJefferson wrote:
         | I don't know the details of this story, but I had an illness,
         | and tried some antibiotics with no success. After a whole bunch
         | more tests they decided it was a bacterial infection which had
         | buried itself deep in my digestive system somewhere, and
         | killing it required Fluoroquinolone --- which causes serious
         | tendon damage in many people who take it.
         | 
         | It cleaned up my infection, and I didn't have any side effects
         | --- but hard to shift illnesses can require significant amounts
         | of antibiotics with significant side effects.
        
       | raincom wrote:
       | Crux:
       | 
       | "Metagenomics technology uses cutting-edge genomic sequencing,
       | which can identify all bacteria, fungi or parasites present in a
       | sample by comparing them against a database of millions of
       | pathogens.
       | 
       | [if you] do a separate test for each and every one and if you've
       | got an infection with something that's unexpected, rare or not
       | previously known, you won't find it."
        
       | bsder wrote:
       | Presumably the issue is that "went swimming in the Amazon"
       | suddenly puts a _ton_ of rare, difficult to identify diseases on
       | the table.
       | 
       | Leptospirosis is _known_ to be both prevalent in tropical areas
       | and to be difficult to positively culture and identify.
        
         | pelorat wrote:
         | Doctors here in Europe are not really into diagnostic medicine.
         | I'm going to compare with Dr. House from the TV series who with
         | a team spent days on a single patient. This is not the reality,
         | the reality is that your specialist doctor will spend 10
         | minutes thinking about your case before moving on to the next
         | patient.
        
           | snkzxbs wrote:
           | 10 minutes is extremely charitable. Make it more like 2
           | minutes. (And we give the government over half our salary for
           | this level of attention!)
        
             | IshKebab wrote:
             | > And we give the government over half our salary for this
             | level of attention!
             | 
             | Well that's factually bullshit.
        
             | williamdclt wrote:
             | Both your statements are just plainly false (and I'm pretty
             | sure you know it)
        
               | snkzxbs wrote:
               | They are both correct.
               | 
               | Primary care physicians do not spend more than two
               | minutes diagnosing you in my experience. The diagnosis is
               | always shallow and sometimes wrong because of how rushed
               | the process is.
               | 
               | You pay a third of your salary in taxes, then you pay VAT
               | on everything you buy plus many more taxes for other
               | things such as your property. It amounts to more than
               | half the money you earn.
        
               | wizzwizz4 wrote:
               | If I'm ever paying a third of my salary in taxes, I'm
               | positively _rolling_ in money. And, that 's not how VAT
               | works.
        
               | snkzxbs wrote:
               | Yes, that's how VAT works. You, the end consumer, pay it
               | and the government pockets it.
        
               | wizzwizz4 wrote:
               | The third sentence of the Wikipedia article begs to
               | differ. https://en.wikipedia.org/w/index.php?title=Value-
               | added_tax&o...
               | 
               | > A value-added tax (VAT or goods and services tax (GST),
               | general consumption tax (GCT)) is a consumption tax that
               | is levied on the value added at each stage of a product's
               | production and distribution. [...] VAT is an indirect
               | tax, because the consumer who ultimately bears the burden
               | of the tax is not the entity that pays it.
               | 
               | (Even then, Wikipedia is oversimplifying: "ultimately
               | bears the burden" isn't how economies work.)
        
               | snkzxbs wrote:
               | What that means is that you don't pay VAT directly to the
               | government, the business collects it from you and is
               | responsible for giving the money to the government. But
               | yes, the burden is on the end consumer.
        
             | kjkjadksj wrote:
             | Sounds like the american system only your employer takes it
             | out of your check before you even see it
        
           | swores wrote:
           | Keep in mind that even in the excellent documentary to which
           | you refer, about Dr Hugh "House" Laurie, MD. PhD. McT., the
           | premise is that his setup - a dedicated diagnostics team to
           | focus on difficult to diagnose cases - is a rare concept, not
           | something seen at most US hospitals. There wasn't, for
           | example, a similar team in that other great documentary
           | "Scrubs".
        
           | squigz wrote:
           | I'm pretty sure that's not the reality... anywhere. That's
           | TV.
        
       | pton_xd wrote:
       | > It is now presumed Ellie picked up the bug swimming in the
       | Amazon river in 2018, while on a trip to Ecuador and Colombia.
       | 
       | Don't doctors always ask about international travel when you
       | present with an unknown illness? The exact timeline is difficult
       | to infer from the article but that seems like pretty important
       | detail to overlook.
        
       | w10-1 wrote:
       | Leptospirosis is very rare (~100 cases/year in the UK?) and
       | typically affects other tissues (She's lucky it seems to have
       | only infected one eye), making it more like a unicorn than a
       | zebra diagnostically. Effective antibiotics are common, but even
       | via IV they might reach not therapeutic levels in the eye.
       | 
       | Metagenomics are particularly good in cases like this where
       | tissue samples are small. These spirochete are too small for
       | light microscopy - probably why the lab missed them.
        
         | John23832 wrote:
         | Given that leptospirosis is treated with doxycycline, you would
         | have thought that they would have at least done a resistance
         | study on the culture. Even if you don't know it's
         | leptospirosis, you can know it's susceptible to tetracyclines
         | and treat it.
        
       | uxhacker wrote:
       | The BBC article seems to overstate the uniqueness of the service
       | at Great Ormond Street Hospital. While it's true that they are
       | the first in the UK to offer a UKAS-accredited clinical
       | metagenomics service (UKAS being the United Kingdom Accreditation
       | Service, which certifies labs to meet medical testing standards
       | like ISO 15189), metagenomics itself is already being used in
       | several other places across the UK.
       | 
       | For example, the Earlham Institute, the University of Oxford, and
       | the UK Health Security Agency are all actively involved in
       | metagenomics research and surveillance.
       | 
       | For example: https://www.phgfoundation.org/blog/metagenomic-
       | sequencing-in...
       | 
       | https://www.earlham.ac.uk/events/nanopore-metagenomics-sampl...
        
       | sleepyguy wrote:
       | I'm curious if they initially diagnosed her with uveitis and
       | began treatment based on that. However, I'm surprised there was
       | no mention of consulting an infectious disease specialist.
       | 
       | In Canada, when a complex issue like this arises, it's common to
       | see several different specialists; the testing is typically very
       | thorough, even including some forms of genetic testing. They do
       | everything they can to get you off the steroids, knowing it will
       | cause issues if taken long-term.
        
       | animal531 wrote:
       | I'm currently struggling with my eyes. Over time my near vision
       | started degrading as I'm approaching 50, then I hit that wall
       | where it suddenly became a lot worse and I got glasses for the
       | first time.
       | 
       | But the problem is that it generates a ton of eye strain for some
       | reason, so now I'm on eye drops probably every 30 to 45 minutes
       | and if I don't take them my eyes become really sore and useless.
       | 
       | At least I'm working for myself so its less of a hassle, but
       | taking constant breaks to rest the eyes isn't great for
       | productivity.
        
         | OutOfHere wrote:
         | I would supplement vitamin A (10K IU), taurine (1g 2x/day),
         | lutein (20 mg) (naturally derived), and zeaxanthin (4 mg). As
         | for dry eyes, it is often triggered as an autoimmune condition
         | in the absence of adequate vitamin D, but punctual
         | cauterization can help.
        
         | jml7c5 wrote:
         | Have you tried "computer glasses"? (I.e., a glasses
         | prescription that sets the focal length at around 60 cm (or
         | whatever your normal distance to a monitor is).) It should help
         | with eye strain as the ciliary muscle remains relaxed.
        
       | donatj wrote:
       | > It was only after Ellie was offered a "last resort" analysis
       | called metagenomics, that she was diagnosed with a rare bacterial
       | infection which was cured with antibiotics.
       | 
       | After five years they'd never tried a broad-spectrum antibiotic
       | treatment? That's the real story here.
        
         | John23832 wrote:
         | What's even worse is that leptospirosis is treated with
         | doxycycline... the first line to pretty much all bacterial
         | infections (with a cell wall).
         | 
         | Even if you don't know what the bacteria is, if you have a
         | culture, do a resistance study.
        
           | sigmoid10 wrote:
           | The article literally says that all tests for infection came
           | back negative. It is not said explicitly, but this heavily
           | implies that she had negative cultures (not uncommon for
           | leptospirosis) and did not present with things like elevated
           | white counts (also not uncommon for this pathogen -
           | especially for superficial infections). The article also
           | clearly says they (mis-)diagnosed it as autoimmune disease
           | and treated with steroids, which is pretty much the worst
           | thing you can do in that case. Leptospirosis goes away most
           | of the time without any treatment if you have a working
           | immune system. So if you really need a contrarian takeaway
           | from this editorial, it's that doctors are still sometimes
           | more dangerous than diseases (which used to be true in
           | general up until about 100 or so years ago).
        
             | John23832 wrote:
             | I was skimming precoffee
        
         | phkahler wrote:
         | Yeah I came to quote this:
         | 
         | "All tests for infection came back negative and it was assumed
         | she had an autoimmune condition."
         | 
         | They never confirmed the autoimmune hypothesis but tried to
         | treat it. What about the hypothesis of "it's some other
         | infection our tests don't catch"? Antibiotics are a fairly
         | simple thing to try. She got cataracts due to that mistake. Now
         | that eye doesn't have dynamic focus.
        
         | shepherdjerred wrote:
         | That was my takeaway too. Such a simple solution, though I
         | understand over-prescribing antibiotics is not ideal
        
       | patrickhogan1 wrote:
       | Regular doxycycline treatment is 5-7 days. She used 21 days of
       | treatment. Meaning she may have tried antibiotics at some point,
       | we are talking about 5+ years of history.
        
       | loremm wrote:
       | I think there is a lot of hope because, in a purely research
       | setting, this is extremely routine. The field of genomics is vast
       | but the protocols are somewhat cheap and well understood. It's
       | always hard to do a trial, and the tools are still often aimed at
       | scientists (who are willing to spend months doing a single novel
       | analysis), not point and click for a clinician. But even some
       | relatively low hanging fruit will be extremely effective I think
       | 
       | Not viral/bacterial but human mutations but this is an inspiring
       | study --- https://pubmed.ncbi.nlm.nih.gov/31019026/ ,
       | https://radygenomics.org/2021/13-hours-rady-childrens-instit...
       | 
       | A child is born with potential rare genetic disease. They
       | sequence their DNA _within 13 hours_ and come back with a
       | diagonsis in some proportion of cases (they give lots of stats,
       | it 's small sample size, maybe 1/4 improved outcomes, maybe 2/3
       | have immediate change to their care)
        
       | epmaybe wrote:
       | Eye doctor here: some hot takes in this thread about the
       | diagnostic abilities of the specialists involved in this
       | patient's care. It's easy to be an armchair clinician.
       | 
       | The timeline for delayed immune reaction to a leptospirosis
       | infection makes diagnosis incredibly difficult. There was no
       | mention of an acute febrile illness preceding this during the
       | patient's trip to the tropics, which I assume a uveitis
       | specialist would ask.
       | 
       | While empiric treatment with doxycycline wouldn't be a bad idea,
       | you have to decide what to empirically treat with, and for how
       | long, and what the ramifications of increasing resistance to
       | antibiotics are for society. Do I commit a patient to the
       | hospital for two weeks of IV penicillin because I "suspect"
       | syphilis? of course not.
       | 
       | Better diagnostics for these occult diseases should be applauded.
       | But we shouldn't be vilifying the clinicians that are by all
       | accounts doing their best.
        
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       (page generated 2025-05-04 23:01 UTC)