4 ms·

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 h

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...
- ceejayoz 7y ago
  PTLDS is not entirely a rebrand of "chronic Lyme". It's specific to "people who had Lyme and still have issues". "Chronic Lyme" frequently involves people with no verifiable (or even likely) Lyme exposure. https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-disease https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-d... > In some patients, symptoms, such as fatigue, pain and joint and muscle aches, persist even after treatment, a condition termed “Post Treatment Lyme Disease Syndrome (PTLDS)”. > The term “chronic Lyme disease” (CLD) has been used to describe people with different illnesses. While the term is sometimes used to describe illness in patients with Lyme disease, it has also been used to describe symptoms in people who have no clinical or diagnostic evidence of a current or past infection with B. burgdorferi . Because of the confusion in how the term CLD is employed, and the lack of a clearly defined clinical definition, many experts in this field do not support its use.
stubish 7y ago
Given the total population of 'famous people', are they over represented? In some cases the over exposure of famous people can be good, such as raising awareness about things that otherwise might be ignore (depression, breast & prostate cancer, dementia). I will grant that 'famous people' may well be more likely to be involved with quackery, due their social environment and on average having more money to waste.
bin0 7y ago
You're largley right, and it infuriates people who actually got it that it isn't taken seriously because of people like these. To be clear, I think they are crazy, not sick. With that said, spme cases are legitimate. The distinguishing factor is this utter bunk about "chronic" lyme disease. You can absolutely get it and have a serious problem, but once it's gone, it's gone (so long as it was treated thoroughly and you didn't stop antibiotics as soon as symptoms stop, but this is true of most or all bacterial illnesses). Sadly, I think many of these "famous people" (which, funnily enough, I hadn't heard of) are simply attention-seeking d-list personalities.
- mrfredward 7y ago
  >You can absolutely get it and have a serious problem, but once it's gone, it's gone I've seen firsthand that this is not entirely true. My dad ended up hospitalized for a serious Lyme infection. He had Bell's Paulsy on the right side of his face. A thorough course of antibiotics saved his life. A decade later he still has issues moving the right side of his face, and his right eye tears up every time he chews. The damage Lyme does to the body can be permanent. That doesn't mean long courses of antibiotics years later will do anything to help...but it's important not to lump the people who have long term complications in with the tinfoil hat wearing nutjobs who never had symptoms of a bad bacterial infection in the first place.
  - bin0 7y ago
    Yes, I know people who have such issues and have the greatest sympathy for them. Permanent joint damage, heart issues, etc. However, the distinguishing factor is usually that people with serious lingering complications don't run around claiming they're still infected. I wasn't intending to lump your father nor those I know in with the crazies, just trying to make a point that the crazies make the people with real problems look bad. This is a sort of group version of the boy who cried wolf - if enough people run around fussing about something which isn't, those for whom it is won't be taken seriously.
tyingq 7y ago
"literally injecting air into your veins" Wait, giving yourself an air embolism? Yikes. I don't know the odds, but that can definitely kill you.
- erentz 7y ago
  No the parent I think was being a bit hyperbolic and referring to ozone treatment. They draw out a half pint or so if blood, shake it around in a plastic bubble that has ozone pumped into it to enrich the blood somehow, then infuse it back into you. Then repeat. Like a kind of ozone plasmapheresis but not. Costs up to $10,000 for the course. It looks very unpleasant. (It’s a popular treatment in the Lyme community but I’ve never seen any good evidence that really supports it, nor heard any actual anecdotes where it’s worked.)
  - tyingq 7y ago
    Googling for "ozone blood treatment embolism" shows several credible links to gas embolisms related to ozone treatment. Apparently some providers don't shake out all the bubbles after pumping in the ozone.
    - erentz 7y ago
      I’m surprised people don’t get infections from it too having seen it done. Although these probably do happen but get “explained” as “Herxing” response proving it’s killing the Lyme, “you need X sessions to kill the Lyme completely so sign up for more sessions now!”
      - tyingq 7y ago
        Probably accompanied with a bunch of colon cleansing, essential oil, and antivaxx pamphlets.
paulcole 7y ago
> Not a lot of sham science on here otherwise There's more than you might think. Any post about mental illness, exercise, or nutrition really brings them out.

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...

ceejayoz 7y ago
PTLDS is not entirely a rebrand of "chronic Lyme". It's specific to "people who had Lyme and still have issues". "Chronic Lyme" frequently involves people with no verifiable (or even likely) Lyme exposure. https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-disease https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-d... > In some patients, symptoms, such as fatigue, pain and joint and muscle aches, persist even after treatment, a condition termed “Post Treatment Lyme Disease Syndrome (PTLDS)”. > The term “chronic Lyme disease” (CLD) has been used to describe people with different illnesses. While the term is sometimes used to describe illness in patients with Lyme disease, it has also been used to describe symptoms in people who have no clinical or diagnostic evidence of a current or past infection with B. burgdorferi . Because of the confusion in how the term CLD is employed, and the lack of a clearly defined clinical definition, many experts in this field do not support its use.

stubish 7y ago

Given the total population of 'famous people', are they over represented? In some cases the over exposure of famous people can be good, such as raising awareness about things that otherwise might be ignore (depression, breast & prostate cancer, dementia). I will grant that 'famous people' may well be more likely to be involved with quackery, due their social environment and on average having more money to waste.

bin0 7y ago

You're largley right, and it infuriates people who actually got it that it isn't taken seriously because of people like these. To be clear, I think they are crazy, not sick. With that said, spme cases are legitimate. The distinguishing factor is this utter bunk about "chronic" lyme disease. You can absolutely get it and have a serious problem, but once it's gone, it's gone (so long as it was treated thoroughly and you didn't stop antibiotics as soon as symptoms stop, but this is true of most or all bacterial illnesses). Sadly, I think many of these "famous people" (which, funnily enough, I hadn't heard of) are simply attention-seeking d-list personalities.

mrfredward 7y ago
>You can absolutely get it and have a serious problem, but once it's gone, it's gone I've seen firsthand that this is not entirely true. My dad ended up hospitalized for a serious Lyme infection. He had Bell's Paulsy on the right side of his face. A thorough course of antibiotics saved his life. A decade later he still has issues moving the right side of his face, and his right eye tears up every time he chews. The damage Lyme does to the body can be permanent. That doesn't mean long courses of antibiotics years later will do anything to help...but it's important not to lump the people who have long term complications in with the tinfoil hat wearing nutjobs who never had symptoms of a bad bacterial infection in the first place.
- bin0 7y ago
  Yes, I know people who have such issues and have the greatest sympathy for them. Permanent joint damage, heart issues, etc. However, the distinguishing factor is usually that people with serious lingering complications don't run around claiming they're still infected. I wasn't intending to lump your father nor those I know in with the crazies, just trying to make a point that the crazies make the people with real problems look bad. This is a sort of group version of the boy who cried wolf - if enough people run around fussing about something which isn't, those for whom it is won't be taken seriously.

tyingq 7y ago

"literally injecting air into your veins" Wait, giving yourself an air embolism? Yikes. I don't know the odds, but that can definitely kill you.

erentz 7y ago
No the parent I think was being a bit hyperbolic and referring to ozone treatment. They draw out a half pint or so if blood, shake it around in a plastic bubble that has ozone pumped into it to enrich the blood somehow, then infuse it back into you. Then repeat. Like a kind of ozone plasmapheresis but not. Costs up to $10,000 for the course. It looks very unpleasant. (It’s a popular treatment in the Lyme community but I’ve never seen any good evidence that really supports it, nor heard any actual anecdotes where it’s worked.)
- tyingq 7y ago
  Googling for "ozone blood treatment embolism" shows several credible links to gas embolisms related to ozone treatment. Apparently some providers don't shake out all the bubbles after pumping in the ozone.
  - erentz 7y ago
    I’m surprised people don’t get infections from it too having seen it done. Although these probably do happen but get “explained” as “Herxing” response proving it’s killing the Lyme, “you need X sessions to kill the Lyme completely so sign up for more sessions now!”
    - tyingq 7y ago
      Probably accompanied with a bunch of colon cleansing, essential oil, and antivaxx pamphlets.

paulcole 7y ago

> Not a lot of sham science on here otherwise There's more than you might think. Any post about mental illness, exercise, or nutrition really brings them out.