6 ms·

Maybe It’s Lyme

67 points by elliekelly 7y ago

Ericson2314 7y ago
May a decent medical system in the US end all sorts of madness.
- p1necone 7y ago
  But you've got to end all sorts of madness before the US gets a decent medical system.
nosefrog 7y ago
I'm sure there are some overzealous folks who are misdiagnosing themselves with chronic Lyme, but I think the author's attitude is a bit too dismissive. I have a close family friend who became paranoid after getting Lyme, and I have another friend who's sister committed suicide because of Lyme symptoms that didn't go away. If the mainstream medical establishment is ignoring what seems to be a real issue, then they're partially responsible for the quackery that's come about in the vacuum they've created.
- bitexploder 7y ago
  It was a long article, but the point was there is no way to actually diagnose it so it is not possible for the medical establishment to treat it. And Lyme is “everything” including run of the mill depression. Culture impacts how psychiatric illness manifests. It’s quite possible most or almost all of these people have a mental illness and they find support and acceptance in the Lyme community. Not saying it isn’t real, but it could have a mundane explanation.
  - saiya-jin 7y ago
    My wife is a doctor, and prevailing opinion in their community that Lyme is a blanket statement for many unexplainable symptoms like you describe. There is this notion (which i also had in the past due to not knowing much about medicine) that doctors are almost all-knowing and all-powerful in treatments. Reality is unfortunately still very far from it. Imagine constant stream of people who have chronic untreatable ailments, are on various cocktails of medicines, often have some psychiatric issues (not enough for proper treatment, enough for them to be utter unrealiable pain in the ass), are variously addicted. Or they come with issue like 'chest pain' which can mean 50 different things, or nothing. It is often a proper detective work, with very limited tools (if all tests are OK but patient is not, what to do?). After realizing current state of affairs in medicine, my advice is simple - live healthy till 80 and then simply drop dead. Now how to achieve it...
  - davidjnelson 7y ago
    > there is no way to actually diagnose it Erythma Chronica Migrans rash and western blot blood test...
    - bitexploder 7y ago
      Lyme Disease vs Chronic Lyme. Or Lyme Disease vs Lyme. The article and what I was talking about are when you no longer have Lyme Disease, or maybe you never had it, but you think you have “chronic Lyme”
- amiantos 7y ago
  To be fair to the article it does state that people who get Lyme disease for real sometimes have lingering symptoms like you describe. The article isn’t about that, it’s about quack doctors prescribing huge amounts of antibiotics to people who never had a Lyme infection, whose symptoms are likely psychosomatic. Most of the symptoms read like stress, depression, and exhaustion to me.
  - nosianu 7y ago
    > Most of the symptoms read like stress, depression, and exhaustion to me. Apart from the first one in your list, do you think the other ones are "spiritual"? To me, giving those as a "final verdict" is not dissimilar to blaming a deity. Everything has a material basis in my book. Myself, and you can see a few posts in my history about it, I was diagnosed with chronic mercury poisoning. I was fortunate indeed that I actually had clearly elevated levels of mercury in blood and urine - but that was because of some strange coincidences coming together. Normally someone like me would not be so easily to diagnose, in chronic exposure levels on the "highways" of your body (blood) are very low. I had lots of issues that I ignored, I was fit and all the many many small issues (see some pasts comments for some of them) were easily ignored. Not because they didn't matter, they did make life inconvenient to say the least, and how far my brain was impacted I only realized in the years of chelation when I could suddenly comprehend things much, much better. You don't realize the impact yourself because you have nothing to compare yourself against, since the change is so slow and gradual! If I had ever gone to a doctor with any of those symptoms I would have gotten exactly your advice: It's just stress, it's psychosomatic. Don't worry so much. For what it's worth, my own doctor, researcher at a university clinic, thinks the heavy metal problem is vastly under-appreciated. For the same reason as was mentioned in this thread: It's really next to impossible to diagnose with what we have. We can only diagnose acute poisoning, meaning when it is still present in blood in large amounts. Current teaching is "no amount of lead (but same for mercury, which is even worse - and both together are several orders of magnitude more toxic according to an LD study somewhere on PubMed) is safe" and many people are aware of it. But somehow this is too abstract for anyone who has not been impacted (or does not know about it, very likely when it happens). But anyone who shows up with mild symptoms is told "it's in your head". We can, sort of, make a connection between heavy metals and populations. But we are unable to use that knowledge for any individual, because while we can show that there is a population level impact we have no way to do the far harder thing and show that an individual has been impacted. So we have a disconnect between what we know and what we can actually do, since treatment cannot be done on the population level apart from what has already been done (but even so there's plenty of heavy metal exposure left, as became clear after Flint in headlines for far more places than just that one city and issue). Just to clarify, I'm not saying "everything undiagnosable is a heavy metal issue", I'm saying everything has a material basis. Among them environmental issues play next to no role - for the simple reason that we don't have the means to diagnose them (even if we did get accurate numbers about what is stored in somebody's body we still have no way of saying of what that actually means). The problem is that "we cannot diagnose it" turns into "you have nothing, it's all in your head" because what you don't know exists does not exist. I certainly see why there is little point in teaching much about it to doctors given what I wrote, that there simply are not even good ways to diagnose it. One has to remember doctors are not researchers. They don't go for the novel ideas and the unknown, they are not supposed to work like a production line worker, albeit very well-paid ones: Use known-to-work methods for known issues. Next (patient)!
- Ericson2314 7y ago
  That there are long term affects is not the dispute. Rather it's whether those are the lingering effects of a prior infection or present effects of an ongoing one. Ongoing intravenous antibiotics is very dangerous to the recipient.
amiantos 7y ago
It’s interesting to see how many famous people end up with “chronic Lyme”. It was John Lurie who introduced me to chronic Lyme, I think he’s “cured” now but I haven’t seen a lot of details as to how or why—while he wouldn’t stop talking about it when it was going on. Lurie told me once he had “ozone therapy” (literally injecting air into your veins) because Flea (from RHCP) had good luck with it for his “chronic fatigue syndrome”. It’s quackery all the way down, semi-famous people seem to fall for it, I’m sure Michael Shermer can explain why. Also I find it weird how many Lyme stories are popping up on HN lately. Not a lot of sham science on here otherwise. Seems fishy.
- laser 7y ago
  Peak in Lymes disease stories may be related to it being summer time, and bug levels (at least speaking in the Midwest) are at the highest in recent memory, not to mention the surge in Lymes disease itself in recent years. Personally, I’ve been having more trouble with chiggers than ticks, but infected ticks are always that lurking nightmare scenario.
- power 7y ago
  30000 Lyme cases a year are reported by health services to the CDC so eventually some celebs are going to catch it, and since they make good news you'll hear about it. On "chronic Lyme", it's been rebranded as post treatment Lyme disorder (PTLDS), it's acknowledged by the CDC [0] and they also acknowledge that some experts hypothesize it may be the result of persistent infection, others an autoimmune disorder. One John Hopkins study [1] found the typical symptoms of PTLDS do persist for some after treatment for Lyme and another[2] found a set of symptoms allowing them to reliabily identify PTLDS. Any disease that lasts a long time and doesn't have a set treatment is going to attract quackery and plenty people will fall for it, but that doesn't mean there's no disorder there. The fact the symptoms can come and go makes it that much easier to associate their most recent treatment with a cure. [0] https://www.cdc.gov/lyme/postlds/index.html https://www.cdc.gov/lyme/postlds/index.html [1] https://www.hopkinsmedicine.org/news/newsroom/news-releases/study-shows-evidence-of-severe-and-lingering-symptoms-in-some-after-treatment-for-lyme-disease https://www.hopkinsmedicine.org/news/newsroom/news-releases/... [2] Mentioned here https://www.hopkinslyme.org/lyme-disease/treatment-and-prognosis-of-lyme-disease/ https://www.hopkinslyme.org/lyme-disease/treatment-and-progn...
mgamache 7y ago
People look for an answer and "once found, the disease could explain everything. It engulfed any alternative." That's the key to much of alternative medicine. Often they start with a conclusion and find supporting evidence. It's like a horoscope we project ourselves into it.
- moby_click 7y ago
  As the article pointed out, the hallmark here is the "Herxheimer reaction" or "detoxing" elsewhere. I'm not making a statement on endotoxin release one way or another, but one has to be very careful to apply reasoning that explains bad reactions to treatmens.
bsaul 7y ago
It would be interesting to look back in history on how many real diseases used to be categorized as psychological by doctors at the time. Or how many proved to be in fact a single name given to many different diseases for lack of better understanding. But it would also be interesting to find out how many things we considered to be diseases were actually psychological.
- 0xcde4c3db 7y ago
  Probably the most striking case of the former is anti-NMDA-receptor encephalitis, which causes schizophenia-like symptoms in its early stages (delusions, hallucinations, disorganized thinking, depersonalization/derealization) [1]. It doesn't even seem to be especially rare, but it wasn't identified until 2007. The latter is tricky because modern psychiatry doesn't really give us the notion of confirming that a condition is psychogenic. Almost all modern psychiatric diagnoses are diagnoses of exclusion (more or less) and do not carry any particular assertions about etiology. We can be reasonably certain that cases of psychogenic disorders do exist, but I don't think they tend to explain any preexisting diagnosis because the signs and symptoms vary so much. [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3983958/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3983958/
odyssey7 7y ago
Reading the article gives an impression of the people who seek out and provide bunk medicine. It’s also a picture of how actual medicine is incomplete and has failed a lot of people, leaving many suffering and looking high and low for whatever might work.
- elliekelly 7y ago
  It was really interesting to me the way the one doctor described her difficulty even discussing bunk science it with her "chronic Lyme" patients: > Chronic Lyme becomes an identity, being anti-vax becomes an identity, and once a belief is incorporated into someone’s identity, it’s very hard to counter. I think it echos a lot of issues we're dealing with today. Once a person "identifies" as something - political party, illness, anti-vaxx, etc. - it's like the brain becomes impervious to any information that might challenge their identity.
dekhn 7y ago
What I find so bizarre is that I spend my youth in Connecticut (not far from Lyme itself) walking with bare legs/feet through the woods for long periods of time and never found any ticks on me or showed any Lyme symptoms, while people I went with would end up covered in ticks after just ten minutes in the grass.

Maybe It’s Lyme

67 points by elliekelly 7y ago

Ericson2314 7y ago

May a decent medical system in the US end all sorts of madness.

p1necone 7y ago
But you've got to end all sorts of madness before the US gets a decent medical system.

nosefrog 7y ago

I'm sure there are some overzealous folks who are misdiagnosing themselves with chronic Lyme, but I think the author's attitude is a bit too dismissive. I have a close family friend who became paranoid after getting Lyme, and I have another friend who's sister committed suicide because of Lyme symptoms that didn't go away. If the mainstream medical establishment is ignoring what seems to be a real issue, then they're partially responsible for the quackery that's come about in the vacuum they've created.

bitexploder 7y ago
It was a long article, but the point was there is no way to actually diagnose it so it is not possible for the medical establishment to treat it. And Lyme is “everything” including run of the mill depression. Culture impacts how psychiatric illness manifests. It’s quite possible most or almost all of these people have a mental illness and they find support and acceptance in the Lyme community. Not saying it isn’t real, but it could have a mundane explanation.
- saiya-jin 7y ago
  My wife is a doctor, and prevailing opinion in their community that Lyme is a blanket statement for many unexplainable symptoms like you describe. There is this notion (which i also had in the past due to not knowing much about medicine) that doctors are almost all-knowing and all-powerful in treatments. Reality is unfortunately still very far from it. Imagine constant stream of people who have chronic untreatable ailments, are on various cocktails of medicines, often have some psychiatric issues (not enough for proper treatment, enough for them to be utter unrealiable pain in the ass), are variously addicted. Or they come with issue like 'chest pain' which can mean 50 different things, or nothing. It is often a proper detective work, with very limited tools (if all tests are OK but patient is not, what to do?). After realizing current state of affairs in medicine, my advice is simple - live healthy till 80 and then simply drop dead. Now how to achieve it...
- davidjnelson 7y ago
  > there is no way to actually diagnose it Erythma Chronica Migrans rash and western blot blood test...
  - bitexploder 7y ago
    Lyme Disease vs Chronic Lyme. Or Lyme Disease vs Lyme. The article and what I was talking about are when you no longer have Lyme Disease, or maybe you never had it, but you think you have “chronic Lyme”
amiantos 7y ago
To be fair to the article it does state that people who get Lyme disease for real sometimes have lingering symptoms like you describe. The article isn’t about that, it’s about quack doctors prescribing huge amounts of antibiotics to people who never had a Lyme infection, whose symptoms are likely psychosomatic. Most of the symptoms read like stress, depression, and exhaustion to me.
- nosianu 7y ago
  > Most of the symptoms read like stress, depression, and exhaustion to me. Apart from the first one in your list, do you think the other ones are "spiritual"? To me, giving those as a "final verdict" is not dissimilar to blaming a deity. Everything has a material basis in my book. Myself, and you can see a few posts in my history about it, I was diagnosed with chronic mercury poisoning. I was fortunate indeed that I actually had clearly elevated levels of mercury in blood and urine - but that was because of some strange coincidences coming together. Normally someone like me would not be so easily to diagnose, in chronic exposure levels on the "highways" of your body (blood) are very low. I had lots of issues that I ignored, I was fit and all the many many small issues (see some pasts comments for some of them) were easily ignored. Not because they didn't matter, they did make life inconvenient to say the least, and how far my brain was impacted I only realized in the years of chelation when I could suddenly comprehend things much, much better. You don't realize the impact yourself because you have nothing to compare yourself against, since the change is so slow and gradual! If I had ever gone to a doctor with any of those symptoms I would have gotten exactly your advice: It's just stress, it's psychosomatic. Don't worry so much. For what it's worth, my own doctor, researcher at a university clinic, thinks the heavy metal problem is vastly under-appreciated. For the same reason as was mentioned in this thread: It's really next to impossible to diagnose with what we have. We can only diagnose acute poisoning, meaning when it is still present in blood in large amounts. Current teaching is "no amount of lead (but same for mercury, which is even worse - and both together are several orders of magnitude more toxic according to an LD study somewhere on PubMed) is safe" and many people are aware of it. But somehow this is too abstract for anyone who has not been impacted (or does not know about it, very likely when it happens). But anyone who shows up with mild symptoms is told "it's in your head". We can, sort of, make a connection between heavy metals and populations. But we are unable to use that knowledge for any individual, because while we can show that there is a population level impact we have no way to do the far harder thing and show that an individual has been impacted. So we have a disconnect between what we know and what we can actually do, since treatment cannot be done on the population level apart from what has already been done (but even so there's plenty of heavy metal exposure left, as became clear after Flint in headlines for far more places than just that one city and issue). Just to clarify, I'm not saying "everything undiagnosable is a heavy metal issue", I'm saying everything has a material basis. Among them environmental issues play next to no role - for the simple reason that we don't have the means to diagnose them (even if we did get accurate numbers about what is stored in somebody's body we still have no way of saying of what that actually means). The problem is that "we cannot diagnose it" turns into "you have nothing, it's all in your head" because what you don't know exists does not exist. I certainly see why there is little point in teaching much about it to doctors given what I wrote, that there simply are not even good ways to diagnose it. One has to remember doctors are not researchers. They don't go for the novel ideas and the unknown, they are not supposed to work like a production line worker, albeit very well-paid ones: Use known-to-work methods for known issues. Next (patient)!
Ericson2314 7y ago
That there are long term affects is not the dispute. Rather it's whether those are the lingering effects of a prior infection or present effects of an ongoing one. Ongoing intravenous antibiotics is very dangerous to the recipient.

amiantos 7y ago

It’s interesting to see how many famous people end up with “chronic Lyme”. It was John Lurie who introduced me to chronic Lyme, I think he’s “cured” now but I haven’t seen a lot of details as to how or why—while he wouldn’t stop talking about it when it was going on. Lurie told me once he had “ozone therapy” (literally injecting air into your veins) because Flea (from RHCP) had good luck with it for his “chronic fatigue syndrome”. It’s quackery all the way down, semi-famous people seem to fall for it, I’m sure Michael Shermer can explain why. Also I find it weird how many Lyme stories are popping up on HN lately. Not a lot of sham science on here otherwise. Seems fishy.

laser 7y ago
Peak in Lymes disease stories may be related to it being summer time, and bug levels (at least speaking in the Midwest) are at the highest in recent memory, not to mention the surge in Lymes disease itself in recent years. Personally, I’ve been having more trouble with chiggers than ticks, but infected ticks are always that lurking nightmare scenario.
power 7y ago
30000 Lyme cases a year are reported by health services to the CDC so eventually some celebs are going to catch it, and since they make good news you'll hear about it. On "chronic Lyme", it's been rebranded as post treatment Lyme disorder (PTLDS), it's acknowledged by the CDC [0] and they also acknowledge that some experts hypothesize it may be the result of persistent infection, others an autoimmune disorder. One John Hopkins study [1] found the typical symptoms of PTLDS do persist for some after treatment for Lyme and another[2] found a set of symptoms allowing them to reliabily identify PTLDS. Any disease that lasts a long time and doesn't have a set treatment is going to attract quackery and plenty people will fall for it, but that doesn't mean there's no disorder there. The fact the symptoms can come and go makes it that much easier to associate their most recent treatment with a cure. [0] https://www.cdc.gov/lyme/postlds/index.html https://www.cdc.gov/lyme/postlds/index.html [1] https://www.hopkinsmedicine.org/news/newsroom/news-releases/study-shows-evidence-of-severe-and-lingering-symptoms-in-some-after-treatment-for-lyme-disease https://www.hopkinsmedicine.org/news/newsroom/news-releases/... [2] Mentioned here https://www.hopkinslyme.org/lyme-disease/treatment-and-prognosis-of-lyme-disease/ https://www.hopkinslyme.org/lyme-disease/treatment-and-progn...

mgamache 7y ago

People look for an answer and "once found, the disease could explain everything. It engulfed any alternative." That's the key to much of alternative medicine. Often they start with a conclusion and find supporting evidence. It's like a horoscope we project ourselves into it.

moby_click 7y ago
As the article pointed out, the hallmark here is the "Herxheimer reaction" or "detoxing" elsewhere. I'm not making a statement on endotoxin release one way or another, but one has to be very careful to apply reasoning that explains bad reactions to treatmens.

bsaul 7y ago

It would be interesting to look back in history on how many real diseases used to be categorized as psychological by doctors at the time. Or how many proved to be in fact a single name given to many different diseases for lack of better understanding. But it would also be interesting to find out how many things we considered to be diseases were actually psychological.

0xcde4c3db 7y ago
Probably the most striking case of the former is anti-NMDA-receptor encephalitis, which causes schizophenia-like symptoms in its early stages (delusions, hallucinations, disorganized thinking, depersonalization/derealization) [1]. It doesn't even seem to be especially rare, but it wasn't identified until 2007. The latter is tricky because modern psychiatry doesn't really give us the notion of confirming that a condition is psychogenic. Almost all modern psychiatric diagnoses are diagnoses of exclusion (more or less) and do not carry any particular assertions about etiology. We can be reasonably certain that cases of psychogenic disorders do exist, but I don't think they tend to explain any preexisting diagnosis because the signs and symptoms vary so much. [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3983958/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3983958/

odyssey7 7y ago

Reading the article gives an impression of the people who seek out and provide bunk medicine. It’s also a picture of how actual medicine is incomplete and has failed a lot of people, leaving many suffering and looking high and low for whatever might work.

elliekelly 7y ago
It was really interesting to me the way the one doctor described her difficulty even discussing bunk science it with her "chronic Lyme" patients: > Chronic Lyme becomes an identity, being anti-vax becomes an identity, and once a belief is incorporated into someone’s identity, it’s very hard to counter. I think it echos a lot of issues we're dealing with today. Once a person "identifies" as something - political party, illness, anti-vaxx, etc. - it's like the brain becomes impervious to any information that might challenge their identity.

dekhn 7y ago

What I find so bizarre is that I spend my youth in Connecticut (not far from Lyme itself) walking with bare legs/feet through the woods for long periods of time and never found any ticks on me or showed any Lyme symptoms, while people I went with would end up covered in ticks after just ten minutes in the grass.