Keebler
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posted
- They misinterpret what "relapse" really means. Really, it's no surprise that new rashes would be different strains, new infections. That information is not really new at all.
They fail to report that the "further" testing that disproves chronic lyme is often done incorrectly and has limitations.
They only tested NEW rashes here - and just from 17 people - so it's very misleading. Some huge errors of assumption and omission and use of an "expert" (Steere) who is not really one at all. Big Sigh.
But the NYT is only reporting what the medical journal prints - that has a much larger audience and will take on its own life in the medical world.
This may sound like news but it's really not. Any new rash can be a new infection.
This information is smoke and mirrors used to obscure the complexity of chronic infection and deny its very existence.
New Infection, Not Relapse, Brings Back Lyme Symptoms, Study Says
By DENISE GRADY � The New York Times - Published: November 14, 2012
Excerpts:
. . . The conclusion that new symptoms come from new infections is based on genetically fingerprinting the Lyme bacteria in people who have had the illness more than once, and finding that the fingerprints do not match.
The result means that different episodes of Lyme in each patient were caused by different strains of the bacteria, and could not have been relapses.
The study, by researchers at the University of Pennsylvania and New York Medical College, in Valhalla, was published online on Wednesday in The New England Journal of Medicine. . . .
. . . when the disease is detected earlier, treatment with an antibiotic, usually two to four weeks of doxycycline, can get rid of the bacteria, according to infectious disease experts.
Even advanced cases can be cleared by the drugs, doctors say, though an extra month or so of treatment may be needed. . . .
. . . [the test group consisted of just] . . . 17 patients . . . [and new rashes] . . .
. . . In an editorial accompanying the article, Dr. Allen C. Steere, a Harvard professor who was the first to identify Lyme disease, said the new study supported previous research suggesting that new infections, not relapses, were the cause of new symptoms in people who had taken antibiotics to treat earlier cases of the disease.
Dr. Steere acknowledged that symptoms, sometimes disabling ones, do linger for months after treatment in as many as 10 percent of patients. Doctors do not know why. But, Dr. Steere said, �antibiotics are not the answer.�
[A version of this article appeared in print on November 15, 2012, on page A22 ] -----------
No �comment� feature to this article, however, the author�s email link is a the bottom of her bio page here:
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For anyone new reading this, never count on the New York Times to offer correct detail about lyme. Historically, they are very much in the dark about lyme and prove that repeatedly with substandard reporting on this matter.
Journal of Neuroinflammation 2008, 5:40 doi:10.1186/1742-2094-5-40
Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis
Judith Miklossy1*, Sandor Kasas2, Anne D Zurn3, Sherman McCall4, Sheng Yu1 and Patrick L McGeer1
� 2008 Miklossy et al; licensee BioMed Central Ltd.
------------------------------
Also note that there are more forms of Borrelia b. than even just spirochetes and the cystic form. Antibiotics cannot address the cystic form of lyme -- and that cystic form can cause chronic lyme and relapses. Details:
And the fact that lyme seldom travels alone. There are many OTHER tick-borne infections that severely complicate most cases. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
They re so good at politics and so clueless about infections.
Posts: 214 | From Home | Registered: Apr 2011
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poppy
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Reporting on medical findings in the media has never been very good. Not analytical, just reads like a press release usually. This has been described in the past, but it does not seem to improve. Maybe it is because the media people don't have any science/medical credentials.
Posts: 2888 | From USA | Registered: Mar 2004
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-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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Keebler
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posted
- Great. The IDSA seems to do this every year right before the holidays: release "news" that will send families into a tailspin by discounting those who do, indeed, have chronic lyme.
This kind of media blitz just compounds itself to such a degree that every aunt Martha and Uncle Fred is bound to see it and remark at Thanksgiving dinner that lyme seems so simple and they have no idea why [whichever family member has been touched by lyme] is a looser.
Even if not the "family looser" label, it's just so sad because people DO believe what they see or hear in the press about medical issues, usually. And that leaves those who battle this on the front lines to be even more lonely and misunderstood as we come into the holidays.
It's very sad that the news organizations just keep burping all this back up with no investigation or balance in the matter.
I'm especially dismayed at the the intentional and consistent effort of the "medical journalists" at the NYT. I do expect better from them but they have become a strong mouthpiece for the IDSA and their huge errors.
Even if true for all 17 of those in the study, that THEIR repeat rashes were new infections - the way this is presented shift-changes into a dismissal of so many truths about lyme. It's interpreted as lyme is simple and can't be chronic.
Any news organization that keeps spitting this garbage at us should be ashamed. Why can't they also interview ILADS LLMDs? Why, oh, why?
But, BE PREPARED - for all you see in the next two weeks to mention this news article. Be prepared with a simple statement, maybe a few good links on note cards to just hand out. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
It does remind us that reinfection is always a possibility....and you could get different coinfections when you get reinfected.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
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posted
- While the NYT article has no "comment" feature for this particular article, when this appears at other news sites I hope there will be a way to leave a comment. I'm so burned out on this but hope others will be able to post.
It's it true, of course, that this is a good reminder that reinfection is always possible -- and, as TuTu points out, other NEW infections, too.
It's also important to remember that repeat rash is not always a new infection. It can be but not always.
But the main point readers should know is that to get the whole truth, ILADS is the place to begin. -
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Keebler
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posted
- I've been alone for more holidays than I care to count. However, I've also been clobbered just out of the blue, even by phone, with a phrase or two from a family member who thought they had the gist of it all from a news article.
CONVERSATION PREPARATION
If someone brings up this new NEJM "study" do remind them that, indeed, a new rash can be a new infection - and not just lyme.
You might practice what else to say to close the conversation and get onto a new topic. Whatever is said, whether true or not, I think it's best to steer clear of this topic over ANY meal or on ANY holiday event intended to bring family and friends closer.
This can just take such a wrong turn in an instant. What may work is to just always say something like:
"it's very complex" or "intricate" - or "it's not at all as simple as the media reports" and firmly leave it at that and redirect the conversation.
Here are a few other suggestions: -----------------------
It seems that no news organization has the resources to correctly research this topic so they get some bits and pieces right but, so often, many wrong, too.
I have a list in my purse (or coat, etc. or could send you) of some very solid research organizations in this field. You can take a look at that another time.
Right now, I'd love to hear more about . . . (plan in advance some good conversation topics to pull out of your hat).
posted
Droid is correct-Steere has done more incalculable damage to progress being made on this disease than almost anyone, and the mainstream media sadly plays along with it because of his reputation as a "preeminent expert." So sad that the hell we all live gets downplayed or denied time and time again. Another reason for lyme sufferers to make our voices heard as much as possible. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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posted
Worthless study and article. They look only at patients with rashes, when many patients have no rash.
Some patients with an initial rash, may experience relapse of symptoms without any rash - what about them?
Many of us have had multiple tick bites over many years. We may harbor several strains at the same time. Each different strain may periodically flare and cause a rash having a different fingerprint. I myself have had at least four episodes of secondary EM rashes while in treatment, each with multiple lesions, one episode in the middle of winter.
I am sick of this deliberate campaign by supposed "healers" to deny this devastating illness.
I am grateful for ILADS, but I wish that they would be more vocal in refuting these articles. I've done my share of writing letters and signing petitions, but nothing has the impact of scientists and doctors forcefully and articulately refuting the garbage that the IDSA crowd puts out there.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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poppy
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Paul, ILADS is probably worn out trying to refute these articles. I know I am, and just hoping some who still have some fight will continue to comment on these things. Not sure if it does any good, but we can always hope.
What is so tiresome and distressing is having these so called independent journalists just parrot what they are told without a single intelligent thought of their own. They are just not doing a very good job.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Yes, I have already had a few people either remark to me about this article or email me about it.
I say, stand your ground. Whenever this gets brought up in the next weeks to come, use it as an educating opportunity.
Posts: 13117 | From San Francisco | Registered: May 2006
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If a Lyme relapse occurs with a rash, it is not a relapse but a new infection.
Steere is saying "antibiotics are not the answer". Is he saying DO NOT TREAT THE NEW INFECTION????
If a Lyme relapse occurs with all symptoms flaring but WITHOUT the rash, can we assume from this study that patient has a another NEW INFECTION?
Do we treat this new infection or not???? Tell us what to do Allen!!!!!
The reasoning is NONSENSICAL.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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lax mom
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Exactly droid. I keep thinking that these original IDSA guys are not getting any younger.
Hopefully, when they are 100 years old and are finally forced to retire, science will win out over monetary interests.
poppy
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posted
What is depressing is that there was so little thought given to this result by the people who reported on it. Just swallowed it whole.
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Keebler
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- poppy,
Actually, I saw some considerable thought to the NYT article. The writer went out of the way to make it quit clear that those who disagree with Steere are full of hot air, in HER view.
She could have just posted the "study" details and left it at that. Instead, she had to include harsh words about those who believe in such a thing as complexity and on-going borrelia infection.
She went out of her way to say first - stupid, ignorant patients and the "other" doctors who believe and work with them.
This is what every lyme article at the NYT is full of: discounting those with serious and complicated cases (which is really the norm for most who get lyme complex).
The NYT has consistency undermined the truth. Consistently and on purpose. Even in some of the "medical mystery" columns where they pose a puzzling case and ask the readers for their thoughts, there are so many reader replies that insult those who posted that particular case could have been lyme.
A concerted effort, I'd say to strike a clear tone that there is no space for truth regarding the NTY and lyme.
And that is just really sad times many. For many areas, I do look up to the NYT as a standard for journalistic standards.
But, because of their stance and behavior about lyme, I can not longer see them in a good light at all, as an organization. I just have to ferret out the good from the bad.
For as bad - and close to criminally wrong - as their coverage of lyme is,
on the flip side, columnist and reporter Nicholas Kristof's work covering human rights, economic, personal and practical matters (I'm just so tired I can't express my thoughts now, though) . . .
well, he's the main reason I stick to the NYT. Kristof - and a few other excellent journalists. -
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poppy
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There was a NY times writer who did a good (and rare) job with a lyme story years ago. The last I heard he is retired and doing obituary stories for the paper. Wondered if there is any connection. Telling the truth about lyme is not good for a journalist's career at the NYT?
Posts: 2888 | From USA | Registered: Mar 2004
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Keebler
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- Yeah, I recall a guest piece years ago by a former NYT staff writer. His sister ended her life over the struggles of lyme. His writing was excellent and he covered many key points, especially about the torture of hyperacusis (caused by lyme).
This was a guest piece. While it's great the NYT allowed that to be printed, still their medical reporting staff, including their head medical writer, has since gone out of their way to stick with the IDSA.
I'll see if I can locate that guest piece. It was excellent. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
This study was actually cited in an article in our newspaper a couple of days ago. (small newspaper, supposedly no lyme here. go figure) I did respond to the editor.
Posts: 312 | From Utah | Registered: Nov 2010
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If they had new rashes does that mean they were bit again?
Do rashes just pop up again on some people? I can't say I'm aware of that if it's the case.
Posts: 105 | From east | Registered: Nov 2008
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quote:Originally posted by mr al: wait a minute. I don't get the study.
If they had new rashes does that mean they were bit again?
Do rashes just pop up again on some people? I can't say I'm aware of that if it's the case.
I myself have had four episodes of multiple EM rashes on my legs in 4 1/2 years of treatment. Once in the middle of winter. These rashes are the secondary rashes of chronic Lyme. In my case they could not have been caused by new infections, since my body was saturated with antibiotics.
The study purportedly proves that recurring rashes are due to new infections, not relapses of old infections. It just doesn't make sense.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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