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Kathleen Hanna on battling Lyme

Discussion in 'Lyme Disease and Co-Infections' started by worldbackwards, Jun 5, 2015.

  1. worldbackwards

    worldbackwards A unique snowflake

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  2. Daffodil

    Daffodil Senior Member

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    wow so many famous people coming forward these days about this! its only a matter of time before this begins to be taken seriously, i hope!
     
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  3. duncan

    duncan Senior Member

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    I wish I could select 7 or 8 of the chief denialists of chronic Lyme, or even of the prevalence of late stage Lyme refractory to treatments (not counting Lyme arthritis), and put them in a media room.

    Let's say Steere, Wormser, Shapiro, Lantos, Halperin, Johnson, and Baker. Oh, can't forget McSweegan.

    One at a time, and sequestered so they cannot hear each other's responses, place each in front of the major news outlets: Reuters, AP, BBC, ABC, CBS, NBC, CNN, etc. Provide those news outlets appropriate questions, then let them pepper those eight with questions revolving around these famous people that have stepped forward to reveal their battles with Lyme.

    I want to hear what they would say in front of a global audience about these stars' struggles with Lyme.
     
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  4. barbc56

    barbc56 Senior Member

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    @duncan

    I don't think anyone is disputing the seriousness nor the undereported number of lyme cases. It's important the public understand this.

    What is in dispute is chronic lyme vs post lyme syndrome.

    One really doesn't necessarily have to do with the other. More cases being publicized doesn't prove chronic lyme.exists.

    It simply means more cases are being reported.

    Barb
     
    Last edited: Jun 5, 2015
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  5. SDSue

    SDSue Southeast

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    From the interview in Pitchfork:

    I found this so curious. I always assumed that if I get well, I’ll have a different, more joyous view on life, but I never expected that someone released from the prison of chronic illness could simply want to feel normal things, like wasting a day without a second thought.

    It makes perfect sense now. With ME, I'm so accustomed to thinking about every tiny activity and how it will affect me, that I lost the concept of what “normal” or “healthy” mean - they mean you can squander time because there’s always another great day waiting.
     
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  6. Antares in NYC

    Antares in NYC Senior Member

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    So what you are saying is that you don't believe chronic Lyme exist. That's your opinion.

    I think more celebrities coming out with their years-long struggles with Lyme helps people understand the seriousness of the disease. And yes, chronic Lyme is an issue, whether you believe on it or not. That's the crux of the Lyme debate.
     
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  7. Martial

    Martial Senior Member

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    Post treatment lyme disease infection has already been well documented in numerous published medical journals. The issue with the CDC is they would have to run their own trials and be much more invasive with follow up. Something like checking autopsy of deceased patients, doing biopsy for persistant bacteria.

    When something is advising long term antibiotics you can bet they will do anything, and everything to prolong the ability to make that possible. It opens up a whole host of legal issues for them, along with potentially a public health hazard for further risk of drug resistant bacterias. What they do not take into consideration is that you can treat Lyme disease with things other then pharmacutical antibiotics. Or in the least target specific antibiotics, or pulse treatment to minimize risks.
     
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  8. justy

    justy Donate Advocate Demonstrate

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    There is a whole documentary about Kathleen Hannah - The punk Singer - its a great doc, here is the trailer, not sure where you can watch it - I saw it on Amazon instant.

     
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  9. duncan

    duncan Senior Member

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    @barbc56 I think you may have misunderstood my intent, although this brand of publicity indeed may be a good thing, considering who more or less has controlled access to the media for the last three decades.

    I was speaking to the discussion that would ensue with these denialists, in front of a room packed with reporters and TV cameras.

    I want the world to hear, first hand, how the logic of denialists seems ultimately rooted in minimising the reports of the sick.

    How it frequently pivots on flawed, circular reasoning.

    How it has built into it a failsafe mechanism that ensures a deliberate, managed, and sanitized perspective of what some would typically promote as an illness of slight import.

    How it insidiously and inexorably snakes its way to a pychosocial characterization that cavalierly victimizes victims.

    I want to see them apply these characterizations to respected people who have their own spotlight, who have behind them a following of their own, and some money and clout and media-savvy of their own, and who have at their ready a proper support system and proper representation.

    I want to see people respected and revered, cut down and reduced to a status of deluded dupes, and I want the world to see it on Prime Time TV. This is the daily lot for the hoi polloi who do not respond positively to IDSA-recommended therapy. The common man hasn't much to fall back on in the face of these assaults. They don't have the money. They don't command air time.

    Famous people, people with money, lots of it, can help expose a dark back alley of the contemporary medical community. I want famous people who have some resources most do not, respond to the twisted haranguing logic seeping from Mainstreet Lyme, and I want it on TVs in living rooms and kitchens and bedrooms everywhere.

    Then, maybe the world can see it in action, see people admired, even loved, cut down not just by the disease, but by a grim and often outrageous manifesto and PR machine that has resulted in an assembly-line mentality - one of whose primary effects, imo, appears to be to churn out negative diagnoses, and deny treatment to many very sick people.
     
    Last edited: Jun 6, 2015
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  10. Dufresne

    Dufresne almost there...

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    That's the impression I get, again and again and again...:)
     
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  11. barbc56

    barbc56 Senior Member

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    That is correct.;)

    No, it's the science. Chronic lyme is not the same as post treatment or untreated Lyme. Nor is it a denial of the impact Lyme disease on patients.

    Barb
     
  12. msf

    msf Senior Member

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    Barbc56, since you don't believe in Chronic Lyme, I find it hard to understand why you often post on the Lyme forum threads. Perhaps you hope to convince other people not to undergo unnecessary and potentially damaging treatments for a condition you do not think exists. I do not think you will convince many people though, as you seem a bit confused about things - you said that chronic is no the same as post treatment or untreated Lyme. What then is, Chronic Lyme? Can you explain this? If it is not Lyme either before or after treatment, then what is it? If, as I have to assume, you mean that untreated Lyme does not persist, so that there are no chronic cases, I would point out that a.) you are wrong, and b.) why would the IDSA treat people for Lyme then? Yersinia, for example, usually goes away on its own, so the advice for doctors is not to treat it with antibiotics - why then would Lyme be different?
     
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  13. msf

    msf Senior Member

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    Oh, and just so you know, the kind of Lyme the IDSA doesn't believe in is antibiotic-refractory Lyme. At the moment you do not agree with the positions of either IDSA or ILADS - perhaps you should start a new Lyme association!
     
  14. msf

    msf Senior Member

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    Ah, I see now you may have just been not very precise - you meant that it isn't Post-treatment Lyme Disease Syndrome, right? In that case you agree with the IDSA, whose position to my mind is utterly illogical (as well as contradicted by the evidence).
     
  15. barbc56

    barbc56 Senior Member

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    @msf

    I think I made myself clear.

    You can always search my posts if you are still confused by my answers.

    Barb
     
  16. msf

    msf Senior Member

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    No, you didn't make yourself clear, that was the problem - if you had made yourself clear I wouldn't have been confused, would I? Anyway, I just thought I would make clear that you are wasting your time if you are trying to convince me that I don't have Lyme, since I don't think I have Lyme either, and if I did think I had it I wouldn't be convinced by the arguments and evidence you favour.
     
  17. msf

    msf Senior Member

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    As I mentioned before, the correct term for the thing you believe in is Post-treatment Lyme Disease Syndrome, and the correct term for the thing you don't believe in is Antibiotic Refractory Lyme. If you want to get your point across you might want to try using these.
     
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  18. duncan

    duncan Senior Member

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    I frequently find that individuals who like to chime in and stake a claim in the chronic Lyme vs Post-Treatment Lyme Disease Syndrome controversy have about as much handle on the dispute as the average person who characterizes ME/CFS as chronic fatigue or a psychosomatic illness.

    I expect that.

    I did not expect that here.

    And no, @barbc56 , you are wrong when you write "...it is the science" vs just your opinion. What you color as science is far too often cherry picking, and you need to understand that if you're going to invoke science as your private anchor to reality. It would be good if you could appreciate the difference.

    So I too am interested in your definitions, @barbc56. Because I think it's good to start at the ground level. You certainly are entitled to your opinion. But if you want to volunteer that opinion in the midst of a thread, I think it only fair that we ensure we are speaking to the same entities, at the very least to make certain your opinion is an informed one. Please articulate how you interpret the terms "chronic Lyme" and "post lyme syndrome", as you referred to it (in error), and how you think the movers behind the Guidelines are using them today. Otherwise, I will write off your opinion as...well, as without the merit you seem to think it deserves.
     

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