There has been so much positive press, then wham, you have to read something like that. A few Lyme patients are speaking up.
Great news is you can't post a piece like this without offending your readership, too many people have it or know someone with Lyme!
Posts: 133 | From North Shore | Registered: Sep 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Neko,
I so appreciate the "caution" you posted so that I'll prepare before reading it (if that is ever really possible - these things can cut deep).
While it's important to know what is being said out there in the "popular" press for many reasons including when those we know might spring it on us -- but also must guard to be ready to face it when they get it all wrong.
Lyme / TBD are such caustic diseases to every level of a human being. The uneducated media and public attitude so often turns that up exponentially. Sigh.
Thanks for noting, though, that a few readers have posted good replies.
So, you likely had no warning. Hope you were able to steady your raft in the rough waves. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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Member # 12673
posted
- Wow, this is a very long article. I'll have to take this in pieces.
As for comments, so many terrible, ignorant and caustic comments. However, there are over 550 replies, so likely some are correct. I just did not find any in the first couple of pages of comments. -
[ 03-31-2016, 04:41 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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Member # 12673
posted
- Neko,
I still am glad you posted this as we do need to know. This is just how I've had to come around from my reaction to the article.
That thing I have about thinking I should read what's being printed / said about lyme / TBD just be informed as to what is out there - and what those I know may pick up and form incorrect ideas . . .
well . . . that has its limits. And this article, no, blog entry (for I do not see this as a serious journalism organization) is just so obtuse and dangerous in its perceived image (by their fans)
But, after all, it's a celebrity gossip sheet. So, after trying to read more, and seeing if any comments might have been educational to those wanting answers, I'm left in shock and concern for those who will take this as truth. I have to remember that this trash by Gawker Media - hopefully - will not be a source of reference for anyone who is really ill.
It is a commentary, though, on what's wrong with the "media" - it's more gossip from limited / lack of true research.
I did not search out the background of the "writer" as to why she did not do proper research or is so swayed but it's just not worth that. As for former journalism instructor, I'd truly like to know if she ever had any real training.
It won't let me post the WIKIPEDIA link. Wiki's search for: Jezebel (website)
Jezebel (website) is a blog geared towards women, under the tagline "Celebrity, Sex, Fashion for Women. Without Airbrushing." It is one of several blogs owned by Gawker Media . . . .
It may or may not be without "airbrushing" but - as they've not done their proper medical homework - it is most certainly is cruel to accuse those so very ill of the accusations the article indeed hurls.
This is about lives, not who wore the wrong dress. They should aspire to a higher standard of professionalism if they are going to write health articles. Opinions, criticism without substance in fashion is one thing, it has no place here.
What makes this so hard to brush off from such a gossip source is that this is just the such of trash that most IDSA doctors spew forth, too. I always have trouble with lies and purposeful deceptions, no matter who is spreading them.
Today, many won't pay attention to the source here but just register what they as credible as it's on TV, in a blog, in popular conversation. Sigh. Big Sigh. -
[ 03-31-2016, 05:37 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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Carl Tuttle's email today includes this near the bottom of his Change.org page
Suppressed scientific evidence:
Peer Reviewed Evidence of Persistence of Lyme Disease Spirochete Borrelia burgdorferi and Tick-Borne Diseases after the mandated IDSA treatment guideline.
When “evidence based medicine” has been spun to fit bias agendas and the patient voice has been intentionally ignored who investigates the dishonest science? -Carl Tuttle -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I figured I like add a note of caution for those thinking of reading...I had no such warning and was pretty blindsided by it.
Gawker media is a gossip rag, but Jezebel was always meant to be empowering for women. I frequent the site. They have recently been posting a lot of articles on medical issues, like cookie cutter make fun of anti-vaccers and recently moegellons is a psychiatric disorder ( they started out talking about Joni Mitchell I think? Is that the celebrity with it?)
I'm just a little disgusted with it because as a feminist site, they should be sensitive to ascribing women with chronic pain as having psychological problems. It's not feminist. It's demeaning.
My main problem is that they write about how 'chronic Lyme' is controversial, but the author could not even try to research what the controversy is about and why an organization like ILADS exists.
Of course, I don't know how many people with chronic Lyme actually have had, or still have Lyme. I'm willing to concede that some people might have other issues of unknown origin. But to say none of us have Lyme is non-sensical when proper diagnostic tests just don't exist.
To me, chronic Lyme just means Lyme that progressed to late stage due to lack of treatment, or improperly treated Lyme that has progressed into the body and out of the blood stream.
I think what the author is missing as well is when someone progresses as far as Lyme patients do, you can treat the Lyme and still have immune issues. Untreated Lyme destabilized my entire immune system, my thyroid after 3 years finally is back to normal and my hair stopped falling out.
I'm am totally willing to accept the idea that Lyme leaves the immune system in a reactive state or even causes auto immune issues that more antibiotics just can't help. But if they can't prove to me it's eradicated out if the body, how can one scientifically say, it's not active infection?
And it pains me to see people read that and think it's settled science. And that ILADS isn't evidenced based. Sure, we don't have much clinical proof that certain antibiotics work...because we keep getting poorly designed studies that pretend the case is closed!
I used to think Lyme patients were nutty, unril I got sick and actually read all the research. Then I became FURIOUS.
Posts: 133 | From North Shore | Registered: Sep 2015
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Jordana
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posted
The thing that makes me tired about the entire press in relation to Lyme is that they keep obfuscating what's at stake. People complain of "subjective" symptoms or headaches or joint pain; well, that's not so serious. It's not even that alarming apparently that perfectly healthy people can wind up bedridden with these "subjective" complaints and end up staying that way for years.
No one mentions that a chronic spirochetal infection can progress, to blindness and paralysis and dementia. Why? Because basically worms are eating your brain. Is that not serious enough to give these patients the benefit of the doubt?
If people really understood what this was - really - I think they'd be a little more attentive.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
I'm just blown away that anyone could describe what happened to me as "psychiatric' none if my symptoms are in the DSM for 'depression.'
How can depression describes my neurological symptoms? Heart palpitations? Joint pain? Neck pain so severe I can't move? Migrating joint pain? Rib pain? Loss of basic math and memory skills?
Who in their right mind would make all that **** up and spend their free time being poked by needles and constantly going to the doctors?
My body is covered in tattoos. When I complain of pain, it's not a 2 or 3 or even 8 on the pain scale. It's off the chart. I pretty much lose my mind when I hear the term ''aches and pains of daily living.'
There was a 3 month period that I was absolutely convinced I was dying and the doctors must have missed something, like I was terminal and no one figured it out.
I don't know how to get the medical establishment to understand pain. There is a complete lack of empathy and understanding. It's so systemic I just don't know how you fix it, it's as if doctors re trained that way now and very few understand how to listen,
Posts: 133 | From North Shore | Registered: Sep 2015
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Jordana
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posted
I felt the same way today Neko reading TIME magazine about the new "study."
Just sick and helplessly horrified.
Posts: 2057 | From Florida | Registered: Feb 2015
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bluelyme
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Member # 47170
posted
I second the worms on brain thing...i have visable sx and still in denial...i too am no stranger to pain so this is really surreal...i am thinking of contacting avril and yolanda and john caudwell and making a centre for msids...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
That new "study" makes me feel helpless. I've had several people point it out to me, I think they are trying to 'help' mere slide my disease is in my head or something.
I don't like how it's being used as proof that I'm making up a fake illness...instead of proof as to how difficult this disease is to treat and cure.
I get told a lot there is no research in humans that proves chronic Lyme, and that all these "quack" doctors should fund research and report their findings of what they say is true. I don't think it's my doctors job yo do that, my doctor is focused on getting me well, not placating the yahoos,
Posts: 133 | From North Shore | Registered: Sep 2015
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Keebler
Honored Contributor (25K+ posts)
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posted
- Neko,
oh, there is absolutely research that proves chronic lyme exists. It's just not with the IDSA / CDC websites or their friends who run the medical journals.
Yeah, it's very sad that those out and about read / hear mass media and think they know all about it and then so easily climb on the IDSA band wagon without even knowing there is so much complexity to this and how the IDSA is in a campaign against those with lyme.
LYMEPOLICYWONK: Chronic Lyme European PLEASE Trial—You know it’s spin when treatment “success” is called “failure”?
Lorraine Johnson, JD, MBA - LymeDisease.org - March 30, 2016
Excerpt:
. . . How should we define success? These authors were comparing 2 weeks of IV Rocephin against 2 weeks of IV Rocephin followed by oral antibiotics.
They found no difference between those who received additional oral antibiotics and those who did not. So maybe the oral antibiotics aren’t adding much or maybe they were the wrong oral antibiotics or maybe they weren’t given long enough. Who knows?
The fact is that all of the patient groups received IV Rocephin and all groups had clinically important improvement. Shouldn’t that be the headline? . . .
[Full article with excellent thoughts at link above.]
Also be sure to check the work of Pamela Weintraub now and then. She's an excellent LL journalist. New edition of her book is out. "Cure Unknown"
THAT would be good for anyone who makes uneducated comments to you to get. They likely have absolutely no idea the complexity. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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LisaK
Frequent Contributor (1K+ posts)
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posted
NEKO- you said "Only read if you don't want to be angry today:" but your comment later was that it made you upset? so did you mean we shouldn't read it if we dont' want to get mad? I don't want to get angry today, so .....
I hope I am making sense
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Keebler
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posted
- Lisa,
The article is written entirely giving credit to the IDSA for being the SOLE authority and this "new study" is so severely misguided in structure
and they didn't even see what clues came from that to tell them more. They just slammed on the IDSA approach.
What's worse is that they are not ignorant to the existence of ILADS but discount their work in a bold way.
So, if you are in a place where you can ride those waves to see more about this "new study" and see what's being writing out there -- in case others you know see it and then strike up conversation or carry assumptions . . .
well, then, sit down prepared with a cup of tea and take a few breaks to look out the window, etc. And plan something nice after reading the article to reframe your day.
If you are not in such a place right now, you've got the "Cliff Notes" version and you can move on.
The post / link a few up from Lorraine Johnson might be easier to digest and get the take-away from it.
Hope that helps. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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LisaK
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posted
no no I canoot. thanks keebler.
btw, I always have the urge to call you Keebs. is that offensive to you?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Keebler
Honored Contributor (25K+ posts)
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posted
- Lisa,
Thanks for asking and I appreciate that you want to shorten to something that may have a zippier vibe and, yeah, others have done that, too. Once in a while, maybe but not all the time, okay?
I looked up that name and it "keebs" means some very awful kinds of behavior out there in the world, according to the Urban Dictionary. I think it's important to know the words we use even if we don't mean then that way and after reading that, now I know and can't un-know.
Funny, though, when I choose "Keebler" as my posting name, I just thought it was about those cute elves who live in trees and bake cookies. Must have been from some TV commercials long, long ago but I did not connect to the commercial product.
I've been gluten free for about 20 years and, even before that, never ate box cookies or even went down that aisle in the store.
I am always looking for a name that means "cute & cheery little elf who lives in a tree & and can hop all over the forest in glee" if you happen to find such a term. -
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
zippier vibe, yes, haha, but OH NO to that urban usage meaning!!
I won't look it up. I don't want those cute little elves to be tarnished. I like them too.
if that shorter version of you comes out in a post it will be by accident by me. I will try and refrain.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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