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The Chronic Illness Debate Is More Mainstream — But Still Mysterious, NYT

Discussion in ''Conditions related to ME/CFS' news and research' started by Jaybee00, Dec 3, 2022.

  1. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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  2. Solstice

    Solstice Senior Member (Voting Rights)

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    Wow, ok. I've had the Bartonella "stretch-marks" myself. I still went to the gym when they started occurring, when I got out of the shower some guy asked me wtf was on my hips, I thought it were actual stretchmarks from working out to hard and growing to fast. Which was funny because I still looked like a stick-figure so the guy told me that can't be right. Took about 7 years to get that actually diagnosed.

    I started feeling better with treatment but dropped off a cliff again when exerting myself too much. The bartonella looked gone on tests and my hips had cleared up to the point where the marks went from a bright purple to skin-toned, which for me is RAL 9010.

    Something was still off in the bloodworks, but it was unclear what. In 2019 I discovered it to be Borrelia Miyamotoi and Relapsing Fever. I'd put my recent improvements down to combatting that, but I can't be sure.

    Tick-bite diseases usually come with co-infections from what I've been told and have read, but diagnostic tools are severely lacking and treatments even more so. So I'm gonna have to see if my current situation is just a purple patch or that something did change definitively.
     
    Helene, alktipping, Lilas and 6 others like this.
  3. Hubris

    Hubris Senior Member (Voting Rights)

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    It is dangerous to paint functional medicine doctors as the heroes of medicine. They are usually quacks that run a large number of nonsensical tests (often from private labs they get a cut from that give false positives) and prescribe nonsensical treatment regimens.

    If the story is true the kid had an undiagnosed bartonella infection - it is unfortunate that he happened to come across so many incompetent physicians in a row. But for every complex patient that gets "figured out" by a functional medicine doctor (and it is never something that a normal doctor couldn't figure out!) there are dozens that are ripped off and prescribed ridiculous 30 pill regimens with nothing to show for it. This idea that you can figure out an illness like me/cfs or autism by seeing a functional medicine Dr has been tossed around for years and it honestly just makes us look crazy. As usual, positive anecdotes like this one are touted as evidence and the negative ones ignored.
     
    alktipping, Helene, Wonko and 4 others like this.
  4. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Thanks for sharing. Quote from the article:

    "But the stereotype of people refusing to accept a mental health diagnosis seems like an odd fit for contemporary American society. From our ever increasing rates of antidepressant prescriptions to our therapeutic style of spirituality, neither our medical system nor our culture writ large seems meaningfully resistant to psychiatric diagnoses or mind-body treatments. If anything, the medical system’s bias often runs the other way: If your blood tests come back negative or your symptoms don’t yield a simple diagnosis, you’re very likely to be told to consider seeing a mental health professional, and most people who like and trust their own doctors (which is to say, many people) will follow that advice."​
     
    EzzieD, Helene, alktipping and 8 others like this.
  5. Solstice

    Solstice Senior Member (Voting Rights)

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    Seems like I wandered into something I don't know enough about. What is a functional medicine doctor and how is he or she different from a regular doctor?
     
  6. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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  7. Mij

    Mij Senior Member (Voting Rights)

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    Functional medicine is also known as 'complementary medicine' for people who have cash to spend.
     
    Sean, alktipping, Lilas and 4 others like this.
  8. Solstice

    Solstice Senior Member (Voting Rights)

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    Enough said then.
     
  9. Solstice

    Solstice Senior Member (Voting Rights)

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    So ILADS-doctors for example would fall into the category too?
     
    Peter Trewhitt likes this.
  10. bobbler

    bobbler Senior Member (Voting Rights)

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    Oh wow. I've had big scratch lines across my upper back (from sides around should blades almost) for years, with them being really obvious when I've showered.

    I assumed it was something itching me at other times and it was just the showering that made them more obvious
     
    Peter Trewhitt likes this.
  11. duncan

    duncan Senior Member (Voting Rights)

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    ILADS doctors are ones whose primary focus are tick-borne diseases. They are typically infectious disease specialists, but not necessarily.
     
    Peter Trewhitt likes this.

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