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Medical treatment guidelines are tremendously important in determining your treatment options. All important treatment guidelines are listed by the National Guidelines Clearinghouse (NGC), which is part of the US Department of Health and Human Services. It’s the government’s way of providing updated information about different diseases to health care professionals. NGC’s own rules require that listed guidelines be updated every 5 years. The Infectious Diseases Society of America has not revised its controversial Lyme disease guidelines for more than 5 years. Nevertheless, the NGC recently permitted the IDSA to continue listing the Lyme guidelines without updating them. Continue reading
The NGC’s decision was based on the IDSA’s claim that its antitrust review process in 2009 fulfilled NGC review requirements. We strongly disagree. (Read why here.)
The NGC needs to remove the IDSA 2006 Lyme guidelines listing until they have been fully reviewed and revised. The IDSA needs to review its guidelines in an open and transparent process that includes both patient advocacy representatives and physicians who treat chronic Lyme disease, reflects the current state of the science, and complies with GRADE–a rigorous assessment standard that the IDSA adopted for guidelines reviewed after 2008. If you agree, sign the petition to let them know!
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org, formerly CALDA. Contact her at lbjohnson@lymedisease.org.
LYMEPOLICYWONK: Senators Request Removal of IDSA Lyme Guidelines from National Guidelines Clearinghouse
Today Senators Blumenthal and Gillibrand joined together to ask the National Guidelines Clearinghouse (NGC) to remove the outdated 2006 IDSA Lyme disease guidelines from their website.(Full text of letter below.) We applaud the Senators for speaking up loud and clear. Their letter voices concerns that the guidelines do not satisfy the currency requirement and asks that the NGC remove the guidelines until the IDSA conducts a review that ensures that the guidelines reflect current evidence-based medicine principles. The Senate letter comes on the heels of a letter from Congressman Smith, Wolf, and Gibson expressing similar concerns. New York Assemblyman Richard Gottfried, who chairs the Health Committee also requested that the NGC remove the guidelines pending a review for currency. Approximately 10,000 people have signed a petition launched by LymeDisease.org calling for the removal of the IDSA guidelines from the NGC.
Continue reading
LYMEPOLICYWONK: 10,000 Signatures in 9 days–On a Roll!
10,000 Signatures in 9 days–we are on a roll! That is more than 1,000 signatures a day. Continue reading
EVENT: Washington state Lyme conference for naturopathic doctors April 14-15
Lyme Disease Diagnosis and Integrative Treatment: A Practical Course for Naturopathic Physicians Approved for 11.75 CE Hrs Saturday, April 14, 2012 8:00 AM – 5:00 PM Sunday, April 15, 2012 8:30 AM – 4:00 PM (Pacific Time) Red Lion Hotel … Continue reading
NEWS: ILADS Lyme disease message on JumboTron Superbowl 2012
The International Lyme and Associated Diseases Society is running a powerful public service campaign to create greater awareness of the misdiagnosis of Lyme disease on a JumboTron outside the XLVI Super Bowl at Lucas Oil Stadium. Continue reading
NEWS: Morgellons disease probably a delusion, feds say
From the San Francisco Chronicle: “Morgellons disease – a creepy illness that leaves patients with painful lesions, gives them a feeling that bugs are crawling all over their body, and has them seeing colorful, threadlike fibers poking through their skin – isn’t infectious and probably isn’t caused by anything in the environment, according to the first government study of the condition.” Continue reading
NEWS: Advocate responds to CDC’s conclusion that Morgellons patients are “delusional”
Cindy Casey, RN, is director of the Charles F. Holman Foundation, an organization dedicated to the study of Morgellons disease. Morgellons is a mysterious condition that apparently causes bizarre and painful skin manifestations, including what seem to be fibers coming from the skin. Some, though not all, Morgellons patients also have Lyme disease. LymeDisease.org asked her to comment on recent conclusions by the Centers for Disease Control that Morgellons patients are delusional. Continue reading
HARD SCIENCE ON LYME: Research Finds Bartonella Transmission from Tick to Host
It has long been known that ticks harbor Bartonella and that humans who have Lyme disease may also have Bartonellosis. However, the actual transmission of Bartonella from tick to host has not been demonstrated until a mouse study by Drs Reis and colleagues was published in May 2011. The study is available free on line for those interested. “This work represents the first in vivo demonstration of a Bartonella sp. transmission by ticks. It . . . corroborate[s] a prospect that ticks play a role in the natural cycles of some of the bartonellae including those pathogenic for humans. Consequently, bartonelloses should be included in the differential diagnosis for patients exposed to tick bites.” Continue reading
TOUCHED BY LYME: “IDSA Guidelines, will you please go now!”
With apologies to Dr. Seuss. Continue reading
NEWS: Researchers find UK dogs at greater risk of Lyme disease than previously thought
Scientists at the University of Bristol found that ticks in dogs had a much higher Lyme infection rate than expected; they fear Lyme is likely to become more prevalent throughout the country. Continue reading
NEWS: Pennsylvania Lyme survey
The Pennsylvania Lyme Disease Awareness Committee–a collaboration of the Chester/Delaware County Farm Bureau, the Lyme Disease Association of Southeastern PA, Inc. and the Chester County Health Department–is conducting a survey of PA residents about Lyme disease. Continue reading
LYMEPOLICYWONK: Congressmen Call For Removal of Outdated IDSA Guidelines from National Guideline Clearinghouse
On January 17, 2012, Congressmen Smith, Wolf, and Gibson called on the National Guidelines Clearinghouse (NGC) to remove the IDSA’s outdated Lyme guidelines. We applaud them! But, this, of course, is the middle of the story not the beginning, so let’s go back. Continue reading
NEWS: Latest info about new Borrelia culture lab test
There continues to be high interest in the Lyme community about the recently available Borrelia culture blood test. Here’s an update. Continue reading
NEWS: Wisconsin Lyme doctor may be back to treating patients soon
In November 2011, Dr. John Gregory Hofffman, MD, who had treated Lyme patients for 20 years, had his license suspended by the Wisconsin medical board. This left 1300 Lyme patients scrambling for other medical care. This week, the medical board endorsed an agreement that may allow Hoffman to resume treating his patients. Continue reading
TOUCHED BY LYME: (guest blog) Remembering Elyssa Harte, ND
Elyssa Harte, a much-loved and respected Lyme-literate Naturopathic doctor, died from a fall in her home on January 7. Continue reading