TOUCHED BY LYME: Media drinks kool-aid on Lyme study
In an article published this week in the New England Journal of Medicine, European scientists reported on their study of whether giving oral antibiotics after two-weeks of IV Rocephin was helpful to Lyme patients.
As Lorraine Johnson explains in the Lyme Policy Wonk, even though most of the patients showed improvement in their symptoms, the results were labeled a “failure” by the study’s authors.
She states: These authors were comparing two weeks of IV Rocephin against two 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?
However, the IDSA’s public relations machine has made sure that this story has been widely trumpeted throughout the US media as “Proof that long-term treatment won’t help Lyme disease.”
Media outlets as diverse as Time magazine, NPR, Forbes, US News & World Report, Today.com and even Teen Vogue picked up the story. Most of them headlined their coverage with some variation of “Long-term antibiotics ineffective for Lyme disease.” To their credit, a few media outlets at least acknowledged the ILADS point of view.
Here’s what Time.com said:
Still, others maintain that current tests for Borrelia aren’t sensitive enough to pick up ongoing infections. Dr. Samuel Shor, associate clinical professor at George Washington University Health Care Sciences, says those people may benefit from continued antibiotics. He notes that the tests look for antibodies to the bacteria, and that the sicker patients are, the less likely they are to have sufficient immune responses against the bug, and therefore they may test negative. “When they say there is no evidence of Borrelia, they’re saying there is no test evidence. On the other hand, there is clinical evidence, which is the patient sitting in front of you with symptoms,” says Shor, who is also president of the International Lyme and Associated Diseases Society, which supports the existence of a chronic Lyme disease condition. “That’s what they are disregarding.”
NPR’s “Health Shots” included the following from ILADS and LymeDisease.org board member Dr. Ray Stricker:
Stricker argues that that mainstream professional societies are ignoring these (Lyme) patients’ needs. “They’re horribly sick,” he says. “They need decent treatment. Unfortunately, this study is going to be misinterpreted to say there is no treatment for these patients.”
Interesting timing that all this “proof” that long term treatment won’t help is ratcheting up on the Internet, just as the IDSA is “responding” to patient comments about what we see as its misguided efforts to review the group’s patient-unfriendly Lyme guidelines.
Stay tuned for more. It’s going to be a wild ride.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.
This is so devastating to the Lyme community. This has set our progress back substantially.
Taking a ton of turmeric, garlic, olive leaf, vitamins and minerals. + Claritan. Helping.
this article which is presented as if it is some new and valuable information , was originally published in 2014 in BMC Infectious Disease .. the study was called PLEASE… many of supporting research were publishe 2007 and before down to 1998… it really bothers me to see the media reporting the data without seeming to understand that this study is unsupported by current research. I can understand individuals not knowing how to look at research critically but the editors should know what’s what ., it’s very disappointing frustrating and just plain wrong ..,
I knew they wouldn’t go down without a fight!
The folks that “study” Lyme and the folks that “battle” Lyme are in 2 separate camps. Seems as if the ILADS and the ISDA organizations are nothing more than social lobbying organizations that will spend exorbitant amounts of time and money (mostly others) glamorizing lab work and studies, yet FAIL in taking any advice, or proof of proven protocols, from those of us that actually live with this manufactured disease. I think each and every member of the CDC, ILADS and ISDA should be injected with all strains of Lyme and see how their “research” changes…..AND, they should have to pay for all of THEIR medical care from their own pocket.
I am so bothered by IDSA being so eager to tell us what doesn’t work but never anything about what does work… ILADS on the other hand takes a stand against the bozos and attempts to keep us updated on treatments available as well as in the pipeline …
Rusty White – I love your comment!! I have printed it out and taped it in my kitchen where I refer to it daily.
Yes… study vs battle; social lobbying organizations; manufactured disease; inject them all.
The oral antibiotic following IV Rocefin difference is between being a functioning citizen versus one who ends up ill in a wheelchair. We’ve been dealing with Lyme Disease for 29 years.
I don’t get it, I started using natural cures because I can’t find a doctor that treats disseminated Lyme’s. I’m positive on my western blot and they’ve never thought to check for tick borne bacterium. Even after years of night sweats, fevers, headache, sore throat, neck pain, joint pain, I’ve got osteoporosis, chronic poly peripheral neuropathy, fibromyalgia, sinus, ears and throat infection on a regular basis, flu symptoms that never end. Now my heart is acting up. How many people have to die of coinfections like a flu or virus and chalk it up to side effects. Instead they should listen to there patients and run the needed test. My sanctuary lies at the Urgent Care up the street where they give me antibiotic on a 29 day basis, because all my specialist have a 6 month waiting list and ignore Lyme’s disease. Nothing like having specialist who won’t address the real issue. That’s living in hell. I’m not afraid to die because it beats putting up with this Political BS in the medical community. You can talk about it and talk about it. But for those of us that are so sick we drag ourselves to even have a resemblance of a life. Talk is cheap. And if Doctors are so afraid to address it, what the hell is the Hippocrate Oath For? Let us start seeing things happen like running the proper test or just address it. We live in hell. Enough with the talk. Show some action. Or we all live and die in vain. And if one does of Rochepin was the cure than if we’re cured then let’s all flood the blood bank and donate blood. I bet treatment would change when supposed cure Lyme’s patients line up to the blood banks. Everyone would change there tune then huh?