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» LymeNet Flash » Questions and Discussion » General Support » Terrible NY Times article! Follow-up article is better

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Author Topic: Terrible NY Times article! Follow-up article is better
Ann-Ohio
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Glad this kid recovered. Otherwise the article is very dangerous! You can see why we want Dr. Shapiro off the Tick-borne Disease working group! The petition is approaching 25,000 people who want him removed. Shame on the NY Times! https://www.nytimes.com/2019/06/27/well/live/lyme-disease-children-treatment-diagnosis.html?smid=nytcore-ios-share&fbclid=IwAR0gOzDg54L3zswmCNEUp4cUhqJR3fj5iqwgVa7O2QcCG41HbywjauAw _3Q

[ 07-29-2019, 12:19 PM: Message edited by: Ann-Ohio ]

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Ann-OH

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Ann-Ohio
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I tried tinyurl.com for this long link, but was warned that it would be insecure. Is that okay???

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Ann-OH

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duncan
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Just in time for the release of the draft of the new IDSA Lyme Guidelines. [Smile]

Expect more of the same.

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Keebler
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Ann,

Thanks for this article. The NYT has never been good about proper journalist techniques regarding lyme but this is by far the most irresponsible in so many ways.

In addition to ignoring the real science of it all, also ignoring other tick-borne infections and ignoring doctors who have been working with this for decades / ILADS treatment successes, etc.

This article is obvious in its intention: patient SHAMING to the max, encouraging it as well. And prospective patient control: keep others from knowing the science of it and settle for the IDSA party line if they ever encounter lyme.


As for typically long NYT article links - I've found that searching Google for:

"article title" NYT (and maybe the date)

will often lead to a short URL to share. Hope this helps:


https://www.nytimes.com/2019/06/27/well/live/lyme-disease-children-treatment-diagnosis.html

My Son Got Lyme Disease. He’s Totally Fine.

Horror stories about lingering Lyme disease proliferate, but the illness is easily treated.

By Apoorva Mandavilli - The New York Times - June 27, 2019


Go beyond article to COMMENTS

211 Reader Comments as of 1 pm ET, June 28.

Most of the comments are excellent and from very well LL posters - while a few are terribly wrong & insulting in so many ways to posters / patients. Patient Shaming to the max, some try but guess what?

Many patients have really done their homework. I'm so thankful for those who post the truth.
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Bartenderbonnie
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Wow!

This article is everything you need to know about the DENIERS of chronic Lyme disease by the IDSA and the CDC. Lyme disease is easy to cure and hard to get, nothing to see here folks.

NOBODY BELIEVES THIS TRASH!

Quote;
"Everybody, I tell you everybody has an aunt or an uncle or a friend who has Lyme disease and is now chronically disabled. Unfortunately it's become ingrained that it's a chronic condition - and there could be nothing further from the truth."

OF COARSE EVERYONE HAS A STORY BECAUSE THAT IS REALITY!

Quote from Dr Eugene Shapiro (IDSA)
"Parents of children with certain symptoms are often anxious about a Lyme disease diagnosis. When it turns out to be Lyme disease, we go to the parents and say GREAT NEWS, ITS LYME DISEASE, THATS THE BEST THING IT COULD BE."

WHAT DOCTOR IN HIS RIGHT MIND WOULD SAY THIS TO HIS PATIENT????

OPEN YOUR EYES SHAPIRO - NOBODY BELIEVES YOUR TRASH

Here is a link to the NY Times in which you can send a letter to the editor, submit an opinion video, report a correction, report an error, or your feedback on this article;

https://help.nytimes.com/hc/en-us/articles/115015385887-Contact-Us

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Dan455
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That article has 346 comments since being published 2 days ago... I think this goes to show how many families and people have been affected of Lyme Disease today!

It amazes me that Shapiro is still perpetuating his propaganda. What an egotistical little Napoleon... I suspect some still think Shapiro does this because he wants for his side to be considered right, but honestly, with more of the truth come out in recent days, I just look it as propaganda to try and still cover up the truth about lyme being biowarfare, not to mention what their suing the IDSA down in Texas for, which is conspiring with Insurance Companies.

I mean come on, even Dr. H acknowledging the biowarfare side of this disease.
https://www.facebook.com/drrichardhorowitz/posts/2270529483035837

I think those that have enough common sense realize even back in the day something never sat right about this disease... And still to this day, there seems to be those that still try and perpetuate a series of lies and propaganda surrounding this disease to try and down play it. Because basically that's all it is, just fake news and propaganda... More you realize that, easier it is for it just roll off your shoulder and ignore it!

I sure hope that Shapiro and his cronies one day get what they deserve and karma chatches up with them.

lymediseaseassociation.org just responded with a great article
https://lymediseaseassociation.org/blogs/presidents-blog/shame-on-the-new-york-times/?fbclid=IwAR1GERvZzVIG43AvS0KNyi08A-t7NdqHF1v95CuKWMer5nsVe6NXi4gud3o

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Keebler
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REACTION to the NYT article "My Son Got Lyme Disease. He’s Totally Fine." as posted in first links of this thread.

https://www.lymedisease.org/mandavilli-response/

LymeDisease.org News

TOUCHED BY LYME: Singing from the IDSA Lyme hymnal

By Dorothy Kupcha Leland -28 June 2019
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MADDOG
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Hi Gang
The NY times is part of the Satanic one world government.

Everything the write is a LIE.

So don't get upset,we are in the first 3.5 years of the tribulation.

Most media are liers.

AJ tells the truth at IW'S!!!!!!!!

GET RAPTURED!!I think right before the 5G gets booted up.

WE WILL BE OUTTA HERE!!!!!

MADDOG

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Ann-Ohio
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Sorry Maddog, but I don't believe political and religious opinions are very supportive here. I do hope you are feeling better now. You have been through so much!

Lots of people have replied to the article and are posted under comments at the original article site. That is a way to call the newspaper to task for this harmful, inaccurate article.

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Ann-OH

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Ann-Ohio
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Here is Pam Weintraub's response to the article which she also posted on facebook. I split it up for easier reading.

"So happy the author and family are well, but this story misses the boat by emphasizing a he said-she said argument over chronic infection.

The more relevant issue here is that many Lyme patients are diagnosed late because of spotty, controversial tests, lack of education, and the dismissive type of attitude you see here.

Those advancing to late disease fail treatment –possibly for a number of reasons, including immune issues- at the uncontroversial rate of some 20% (well-documented in peer review).

Others suffer from undiagnosed co-infections from the same tick.

This very ill cohort was the topic of my book, Cure Unknown: Inside the Lyme Epidemic, published by St. Martin’s Press in 2009 and updated in 2013, and first place winner of The American Medical Writer’s Association book award.

For such patients, the situation is indeed alarming and sometimes tragic, and they should not be dismissed.

Complications may include serious cardiac and neurological disease.

There are many university-based scientists of stellar academic accomplishment who could have been interviewed for a more balanced report.

By the way, my son too got Lyme disease. He was misdiagnosed for 7 years despite exposure in our tick-infested yard in Westchester County

--complete with what was clearly an Erythema migrans rash and ultimately, several off-the-charts positive tests at mainstream labs.

His late diagnosis and treatment led to years of suffering, and thus, I could never write a story like this."

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Ann-OH

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Dan455
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Health.com just helped lyme patients fight back with a pretty good article.

"The New York Times Ran an Article Saying Lyme Disease Is No Big Deal—and People Are Furious"
https://www.health.com/condition/lyme-disease/ny-times-lyme-disease-backlash

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Kudzuslipper
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Hi All. I’ve been away from the site for a while. But I knew I had to come check out response to this article. I do hope Akash is completely cured. I know when I got my first borderline positive 10 years after my first symptoms and I took 3 weeks of Doxy I felt great for a year... and then all the rashes and pain started up again. It would be 10+ more years before I would get seriously treated. I also hope they gave him a high enough dose as we now know the usual dose just makes the buggers turn into cysts.
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Keebler
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Kudzuslipper,

Sigh. You - me - and so many others found out the hard way.

Yeah, the "cystic" form, other forms of Bb itself, justt seem too complicated for mainstream doctors and mainstream "journalists" who rely on IDSA.

The science of combination treatment just seems too much for so many writers to grasp. ILADS has been suggesting combination approach to all the different tick-borne infections for decades -

and with various / different Rx, on rotation, and individualized to the particular patient depending on the infections and symptoms.

I don't see why it's so hard to grasp. It's science for crying out loud. ILADS conferences and papers over the years have been mostly very good as considering the challenges, failures of treatment paths -

and also shining light on what is known, what is highly suspected about Bb forms, other TBD, too. They think. They study. They explore.

ILADS does not just toss a few doxycycline tablets at the patient. They know that has high failure rate in the long run for many. And even those who appear to have gotten lucky with just some doxycycline, well, often, later on their "luck" runs out and the science shows up.

It's been known science for years (thanks to ILADS) that doxycycline can cause chronic lyme because it allows / forces the Bb spirochete to go into the protective cyst form that doxycycline cannot touch.
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Robin123
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Over 600 responses now. It's incredible. Go read and respond as you wish.
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Bartenderbonnie
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Thank you to Dr Bill Rawls for posting his rebuttal;

https://rawlsmd.com/health-articles/real-talk-the-new-york-times-got-it-wrong-on-chronic-lyme-disease?utm_medium=social&utm_source=facebook&utm_campaign=organic

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Keebler
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It would be nice if Dr. R's rebuttal would be in places other than his website. Maybe many will start to link to it, though.

-------------

Back to the NYT article, linked at the start of this thread, sad post in the comment section, like he got the "last word" for the moment:

https://www.nytimes.com/2019/06/27/well/live/lyme-disease-children-treatment-diagnosis.html#commentsContainer

comment on top of list now: E. McSweegan. Rhode Island July 10 . . . . (at link)

-------------

For anyone new to lyme, E. McS has been the loudest voice to criticize, control & dismiss (and thereby, condemn) those who have reported that a single kind of treatment short course did not work - for them (or their loved one).

Well, of course E. McSweegan just weighed in. Too bad if anyone believes him but he sure has the arrogance full force.

Seven readers did reply directly to his post but their comments wind up below his.

I hope someone posts a whole new comments to keep him from the top.

Over 700 "hostile" responses" McS says, "a cult of anti-science" . . .

Most of the seven replies are good, well educated and correct.

Also, in recent days, below his "thread / reply" line are some really good comments.

Be sure to see those, too. Lorraine Johnson from LymeDisease.org. and Dr. K from ILADS . . . .

Still, most of the replies I've read are glad the author's son is okay - for now, they caution.

And, for the most part, the reader replies are also from very well (lyme & tick-borne disease) educated patients / family members who have had to find the doctors / articles / books, etc. to move past the bad model in general practice & the IDSA / CDC.

They share heart breaking experiences that hopefully. will inform others & several excellent links to data / research / treatment info. are also shared. Applause to the posters with courage to speak truth to power.

And, oh, oh, oh. You would think that any doctor who held such a tight line as lyme is no big deal and one or a few of just one kind of antibiotic is the cure -- well, don't you think that if 700 readers replied that the IDSA view is very wrong & fails so many -

don't you think they'd want to really take that to heart and talk to such patients, really explore it?

Well, that's what I used to think, too, until multiple doctors over years would just dismiss me, later, even with positive tests for 3 TBD

though doctors in my state are so controlled by the IDSA, they dare not even whisper the work "lyme" - for some who learned the reality have lost their licenses to treat.

That they also dismiss the other tick-borne infections is the height of malpractice, too. But this is standard in my state.

That so many posters share their reality of lyme, I so hope doctors will wake up and get themselves to ILADS, etc.
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Ann-Ohio
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The New York Times has published another article on Lyme disease - this time on testing and diagnosis- which is a bit more fair, but not perfect at all. It does refer to the earlier article discussed above.

https://www.nytimes.com/2019/07/29/well/family/the-challenge-of-diagnosing-lyme-disease.html?fbclid=IwAR1mdfgUrbrM0qLz2kbM99dRRq8Jfvmj6zar-7oBGaLHfeB5alsWNhmhmCc

But it still ends with this gem.

“If you’re in a Lyme endemic area, do tick checks at the end of the day,” Dr. Webber said. “The Lyme ticks have to be attached for 48 hours to transmit the Borrelia.”

There are 64 comments so far. Take a look and add your voice.

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Ann-OH

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Keebler
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Ann,

Thanks for posting that. I saw it this morning but was too discouraged to post it.

More gaslighting with some valid points and true facts mixed in with tired old myths so the reader is done such a disservice but won't even know it.

Many will not know what's right about this and what is so very wrong. No mention of the IgM being very important and that the CDC band requirements miss a lot. Or that most labs even do the tests wrong in a number of ways.

That attachment time is such a lie, too. There are studies that prove that, same as that not just one kind of tick carries lyme
and that it is in every state so the idea that if someone is not from an endemic area they get less attention as if they don't matter at all.

Some reader comments - even from doctors - are very cruel regarding those with "chronic" lyme, too.

Not as cruel and insulting and vile as comments to the New York Magazine article last week, but still it's surprising to have so many very personal attacks on anyone with a complex case..

Yet some truths are in the comments as well.

Over the course of the day, I managed to scan most comments. I saw one that suggested ILADS and two that suggested Igenex. I feel better knowing at least there is a mention there.

I don't post at these sites because I want to keep my identity private still really hope readers can find some good places to find help.
-

[ 07-30-2019, 12:12 AM: Message edited by: Keebler ]

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Ann-Ohio
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When comments are cruel, insulting or vile, I find that the person writing them is probably not worth reading. People who find verification that way are pretty sad.

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Ann-OH

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