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I did this and it didn't take long to reach a lot of newspapers. Let's spread the word and help to change Lyme disease treatment across the country!
For all you internet wonks, here's a way to spread the news about the new ILADS guidelines from the comfort of your armchair or wherever you play with your iphone.
Click on your state and choose a city -- the paper's name is followed by several letters. Each one will take you to a different place, e.g. (F) takes you to the paper's facebook page. (T) to Twitter.
Sometimes you can Message them but not post. Do that.
If you want a Twitter message, this will fit (with the URL): Too many patients fail standard treatment for Lyme. New guidelines offer a different approach.
Repeat!
Let us know how many you do! This is good news, we should let the world know.
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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In medical questions, some readers were upset that this paper doesn't address coinfections.
If you read the paper, the authors state very plainly that they addressed three clinical questions.
How to treat a tick bite. How to treat a bulls eye rash. How to treat persistent symptoms of Lyme disease.
They also state that they intend to publish more articles on more topics in the future. My guess is that they have already started writing these articles and that at least one of those documents will include co-infections. I see no indication in this document, that ILADS is backtracking on their emphasis on the importance of treating coinfections. Patients have to realize that because of the extreme politics surrounding anything to do with Lyme disease in the medical community, the peer review process is stacked against any publication supporting clinical judgement in the treatment of Lyme disease. It took several years to get this paper answering these three questions published. Getting this high quality evidence-based review published raises the credibility of ILADS tremendously and lends more weight to all of their positions. Some of the critical positions supported in this paper include placing a high value on clinical judgement and shared decision making that includes consideration of patient values.
Having a daughter who has been diagnosed with four tick-borne illnesses, I know about the importance of treating coinfections for recovery. I also understand just how incredibly important the publication of this paper is to changing the whole dynamic of how all tick-borne illnesses are treated and for getting insurance coverage for extended treatment.
To me it is clear that this publication is a giant leap forward for patient rights to effective treatment. Please do what you can to bring attention to this paper in the press. Phyllis Mervine has provided information on how too reach a large number of newspapers using the www.usnpl.com website. I would also encourage readers to write to their local newspaper and tell them how newsworthy and important this paper is.
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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Great article on why the new ILADS Lyme treatment guidelines are important. We need articles like this across the country. If you have a connection to a local reporter, contact them and urge them to report this newsworthy and important story.
KarlaL
New Treatment Guidelines for Lyme Disease will benefit Minnesotans
Web posted August 12, 2014 Lyme disease infections are increasingly common in Minnesota yet the Minnesota Lyme Association (MLA) medical advisor Dr. Elizabeth Maloney notes that the diagnosis is frequently missed the first time a patient is seen for the illness and many patients remain ill after short courses of therapy. New guidelines for the treatment of Lyme disease by the International Lyme and Associated Diseases Society (ILADS) published today demonstrate that commonly used antibiotic regimens have unacceptably high failure rates and encourage clinicians to adopt new treatment approaches.
Published in the August 2014 edition of the journal Expert Review of Anti-infective Therapy, the new guidelines, titled: Evidence Assessments and Guideline Recommendations in Lyme disease: The Clinical Management of Known Tick Bites, Erythema Migrans Rashes and Persistent Disease, call on physicians to provide evidence-based, patient-centered care for those with Lyme disease in order to reduce the risk of patients developing a chronic illness.
“Chronic manifestations of Lyme disease can continue long after other markers of the disease, such as the erythema migrans rash, have resolved,” said Daniel Cameron, M.D., M.P.H., and lead author. “Understanding this reality underlies the recommendation for careful follow-up to determine which individuals with Lyme disease could benefit from additional antibiotic therapy.”
ILADS is the first organization to issue guidelines on Lyme disease based on the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) process. This rigorous review format is used by other well-respected medical organizations including the Cochrane Collaboration and the World Health Organization. ILADS also developed its guidelines with the goal of meeting the 8 standards identified by the Institute of Medicine as being critical to the development of trustworthy guidelines.
ILADS’ GRADE-based analyses demonstrated that research studies guiding current treatment protocols were of very low quality; and, the regimens based on these studies often failed. “For this reason, we moved away from designating a fixed duration for antibiotic therapy for tick borne illnesses and instead encourage clinicians to tailor therapy based on the patient’s response to treatment,” noted Dr. Cameron.
“We not only recommend clinicians perform a deliberate and individualized assessment of the potential risks and benefits of various treatment options before making their initial selection,” said guidelines coauthor Elizabeth Maloney, M.D., “we also recommend careful follow-up.
Monitoring a patient allows clinicians to adjust therapy as circumstances evolve. This more selective approach should reduce the risk of inadequate treatment giving rise to a chronic illness,” added Dr. Maloney, a family physician from Wyoming, MN who develops accredited continuing medical education courses on Lyme disease for healthcare professionals.
The guidelines encourage shared medical decision-making, which takes patient values into consideration. Lorraine Johnson, J.D., MBA, a coauthor and Executive Director of LymeDisease.org, noted, “A lot of the treatment decisions in Lyme disease depend on trade-offs. How sick is the patient? How invasive is the treatment? What is valued by the patient? Patients need to understand the risks and benefits of treatment options to make informed medical choices,” added Ms. Johnson. “These guidelines provide that information.” . .
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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