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Thread: Charlie Gard

  1. #31
    International Captain Ausage's Avatar
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    Quote Originally Posted by vic_orthdox View Post
    Bit like the situation with Lyme Disease, not recognised in Australia but know two people who have it. End up having to raise their own funds to get to Germany to pay for treatment.
    The Lymes thing is completely crazy.

    My sister contracted it when she was 14, we think while on a trip to Lady Musgrave Island in QLD. When she first fell sick it went completely undiagnosed because she hadn't been out of the country. Ended up being treated for chronic fatigue and psychological issues. Went for over a decade of testing, being diagnosed with various things (worst was Fybromyalgia for which she was given medication that severely disrupted her mental health) before being recommended to a doctor who had to essentially break the law to secretly send a blood sample to the US to be tested. When it came back positive she again had to be treated in secret.

    Treatment ended up going fairly well, but she'll always have issues because the disease went untreated for about 13 years. She's now 32, has a child (who couldn't even be legally tested for it ) and lives a pretty normal life but others haven't been so lucky. I'm not one for conspiracy theories but something about the way the government treats that disease stinks to high heaven, even considering it's a notorious mimic and treatment is relatively invasive.
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  2. #32
    The Wheel is Forever silentstriker's Avatar
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    So I don't know what the deal is in Australia with Lyme disease. I am not knowledgeable enough to comment. I know the tick species are different and it's unclear (as far as I know), if they carry the bacteria that cause the disease.

    But I'll just put this here about the US. Lyme disease is obviously real. It's a pretty simple treatment that involves some antibiotics. No one doubts that. But the problem is this syndrome of "chronic Lyme disease". Some people with Lyme disease do have long term sequellae that we don't understand but the sham treatment of a picc lines with months of antibiotics is often very dangerous and hasn't been shown to work at all. In the past people have come to the ICU with massive infections caused by these crazy lines and long term treatment. People talk about the "government" but I personally know people who write the Lyme guidelines and you can read them yourself with all the primary sources attached. It's not some nefarious conspiracy. People are just analyzing the best available evidence and making the most appropriate guidelines. You can't go by anecdotes. And the plural of anecdote is not data.

  3. #33
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    Quote Originally Posted by silentstriker View Post
    So I don't know what the deal is in Australia with Lyme disease. I am not knowledgeable enough to comment. I know the tick species are different and it's unclear (as far as I know), if they carry the bacteria that cause the disease.

    But I'll just put this here about the US. Lyme disease is obviously real. It's a pretty simple treatment that involves some antibiotics. No one doubts that. But the problem is this syndrome of "chronic Lyme disease". Some people with Lyme disease do have long term sequellae that we don't understand but the sham treatment of a picc lines with months of antibiotics is often very dangerous and hasn't been shown to work at all. In the past people have come to the ICU with massive infections caused by these crazy lines and long term treatment. People talk about the "government" but I personally know people who write the Lyme guidelines and you can read them yourself with all the primary sources attached. It's not some nefarious conspiracy. People are just analyzing the best available evidence and making the most appropriate guidelines. You can't go by anecdotes. And the plural of anecdote is not data.
    Well apparently Australia does, because they're using some sort of outdated definition?

  4. #34
    The Wheel is Forever silentstriker's Avatar
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    I'm not an expert in what their definition is but as far as I know, the bacteria that causes Lyme disease has never been found in Australia. But as I said, I know nothing about Lyme disease in Australia so it's possible they aren't using a scientific definition. I just don't know.

    However, the problem with just "testing" people for it is that the test isn't very good in the absence of known exposure. So if you were to take a hundred random people, a bunch of them might test positive (e.g. a false positive test) despite not having Lyme disease. That's why if a patient comes in just asking for a test for Lyme disease, we tend to avoid doing it in the absence of history of exposure. This is true for many tests in medicine - and it's an important point to remember. People aren't saying no because they want to be assholes - no one likes being the guy that says no to a patient. False positives can have terrible repercussions including unnecessary medications (even chemo), major surgeries, etc etc.
    Last edited by silentstriker; 09-07-2017 at 03:57 PM.


  5. #35
    International Captain Ausage's Avatar
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    I'm aware of the problems treating Lyme's disease and I understand and support the caution surrounding it. I'm also aware that my sister and the people she's met who have contracted the disease here are just data points and that doctors (particularly) are not evil when they treat people in ways they don't want (this is true for both Lymes and the Gard case). But the government just saying "Lymes can't be contracted in Australia, end of story" is a cop out. It very obviously can be contracted here and they should factor that in while they work out how it's happening.

    I don't think there's a complicated conspiracy about it, I think they just don't want to open themselves up to a class action and that's more important than looking for ways to treat a complicated disease.

  6. #36
    The Wheel is Forever silentstriker's Avatar
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    I will defer to you on what's going on in Australia and I hope your sister is doing well!
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  7. #37
    Global Moderator vic_orthdox's Avatar
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    It seems ridiculous though, even if they say that it can't be contracted in Australia, that they won't help someone who may have contracted it overseas.

  8. #38
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    Quote Originally Posted by vic_orthdox View Post
    It seems ridiculous though, even if they say that it can't be contracted in Australia, that they won't help someone who may have contracted it overseas.
    As I understand they'll test/treat you if recently travelled to a place where they acknowledge the disease as existing. That's my mum's memory of the situation 18 years ago at least. It's definitely true that they won't treat you if you've been diagnosed overseas, arguably for the reasons SS mentioned. My nephew not being tested given my sister's history is also very strange given it's able to pass from mother to child (6 months in he's having no problems thankfully).

  9. #39
    The Wheel is Forever silentstriker's Avatar
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    She was treated, correct?

    https://www.ncbi.nlm.nih.gov/m/pubmed/17176487/

    Even in an area where Lyme is very common, we wouldn't really test the infant.

  10. #40
    International Captain Ausage's Avatar
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    She was. That makes more sense now, cheers.

  11. #41
    Hall of Fame Member Shri's Avatar
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    Wait, ss. You are an actual doctor? I thought you just had an useless phd.
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  12. #42
    The Wheel is Forever silentstriker's Avatar
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    No I'm pretty useless.
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  13. #43
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    https://www.theguardian.com/uk-news/...-not-be-helped

    So, in theory, this poor kid has been suffering since Christmas.

  14. #44
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    yeah, he's english

    sorry sorry
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