Lyme Disease Association

Settlement Announced in Landmark Investigation of Lyme Disease Diagnosis and Treatment Guidelines
“My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists,” said Blumenthal. “The IDSA’s guideline panel improperly ignored, or minimized, consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.”

Radio interview with LDA president Pat Smith's broadcast today in NJ and surrounding states on Connecticut Attorney General Richard Blumenthal's announcement of settlement with IDSA on Lyme guidelines.

For use by any radio station -- Lyme Disease Guidelines settlement reached!
Interview by Pat Smith, LDA president, on Connecticut Attorney General Richard Blumenthal's announcement of settlement with IDSA on Lyme guidelines. This material can be used by stations everywhere. Contact Pat Smith President, LDA Lymeliter@aol.com for any other necessary info. (To play, click the link. To save, right-mouse click on the link and choose "Save Target As...".)

Announcement from the Lyme Rights group
Wednesday, May 7th from 11am to 2pm, Lyme Rights will amass a patient presence in front of the office of Congressman Frank Pallone (NJ), House Health Subcommittee Chair, to let him know HR 741, the Lyme bill, needs to be put on that committee agenda now. Go to LymeRights.org for more information.

Open Eye Pictures Presents: UNDER OUR SKIN
Don't Miss the opportunity to see the world premier of the Lyme documentary that goes behind the scenes of the Lyme disease crisis.
Featured at the Tribeca Film Festival!
Lyme Documentary tickets on sale at Tribeca Premiere April 26-May 2, NYC.
Letter from Open Eye Crew

NEW! Save the Date! Forum & Exclusive Pre Release of Book for Sale & Signing
Lyme Disease: Insights into the Crisis, Key Players and the Future
7PM, Thursday, May 29, 2008 (easy access from NY, CT, PA, NJ)
Bergen County Community College
400 Paramus Road
Paramus, New Jersey 07652
Tec Education Building, Room 128
Sponsored by Lyme Disease Association (specific details to follow soon)

Author Pamela Weintraub, an editor at Discover Magazine, is featured in her first public discussion about her book, Cure Unknown: Inside the Lyme Epidemic, to be released June 19 by St. Martin's Press. The book, a narrative history of the Lyme experience and a deconstruction of the science and politics, discloses the research of some major players in the Lyme war and includes surprising, and to some perhaps shocking, revelations from researchers who have been behind the effort to debunk chronic Lyme disease. Patients, advocates, treating physicians, and other scientists are also interviewed and the reader will gain insight into living with Lyme as portrayed through the examples of several "Lyme families." At the forum, she will discuss the book, difficulties pulling the information together in a meaningful fashion, her thoughts as to how her work can impact the current Lyme disease crises, and the future direction see sees for Lyme disease. Cure Unknown will be available at the event for signing and purchase with profits going to LDA toward research.

Also featured will be Dr. Joseph Burrascano, Jr., one of the most notable physicians to treat Lyme disease patients. His treatment philosophies have inspired physicians worldwide to search for new methodologies to treat chronic patients. Now retired from private practice, Dr. Burrascano will share his insights from over 20 years of treating chronic Lyme disease patients, his on-going data base project which is amassing clinical data never before compiled, and what he sees as the future of Lyme treatment based on current research and his data base. Dr. Burrascano will touch upon what he sees as his immediate role in Lyme disease.

Register Now!!
LDA Presents Spotlight on Lyme, Sandy Hook National Park (Gateway Recreational Area), New Jersey. May 18, 2008. Rain or Shine!
Join with family and friends to ride or walk this beautiful oceanfront area peninsula across the water from Manhattan. A fun day for all. Your participation will raise awareness for Lyme disease. Proceeds will be used by LDA for Lyme and tick-borne diseases research. For information and sponsorship opportunities contact Kim Cronin at kimcronin@msn.com.

Lyme Disease Forum, April 30, 2008, 7pm-9pm (doors open 6pm)
Admission FREE, open to the public
Sponsored by: The Brookfield, Danbury Sunrise, Danbury Noon, Ridgefield, and Newtown Rotary Clubs & Ridgefield/ Newtown Lyme Disease Task Forces
Speakers: Richard I. Horowitz, M.D., Lyme & other tick-borne diseases, and Pat Smith, Update on Lyme Disease including infection rates, spread of the disease and solutions.
Western Connecticut State University, University Blvd. (off Lake Ave/Mill Plain Rd) Westside Campus. For information: rldtf@comcast.net.

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(front row) LDA president Pat Smith and Dr. Robert Bransfield Lyme disease forum speakers, with Christa Vanderbilt, PhD, LDASEPA Secretary and other Lyme Disease Association of Southeastern Pennsylvania Board Member hosts in West Chester, PA on April 19, (back row L-R: Anita Swayne, Treasurer; Ron Hamlen, PhD, Vice chairman; Doug Fearn Chairman; and Larry Linford, Communications Director).

Federal Employees: LDA CFC Eligible GOOD NEWS for Lyme disease!
The LDA has been found eligible for inclusion on the National Part of the 2008 Combined Federal Campaign (CFC) Charity list. Each year, federal employees can contribute to charities that meet the requirements of the CFC. The LDA’s CFC 2008 identification for donors is #11424 and Lyme Disease Association, Inc. will appear in the listing of National/International Independent Organizations which is published in each local campaign charity list. See your federal employer for details. Check the CFC website at: http://www.opm.gov/cfc/. [LDA also made the 2006 & 2007 CFC campaign and thanks to all those who have been contributing.]

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Framingham, Massachusetts April 12 garden in the Woods Lyme Forum sponsored by The Underground & New England Wildflower Society
Lyme Disease Association President Pat Smith ( C) is flanked by Massachusetts activists Rose Cruz (L) and Shelia Statlender, PhD (R). Standing are Rolf Briggs, certified tree expert, President of Tree Specialists; Jeanne Hubbuch, MD, family practitioner from Newton, MA; and Dori Smith owner, Garden of Life. Ms. Smith, Dr. Hubbuch and Mr. Briggs spoke about Lyme disease, with Ms. Smith addressing the surveillance and prevalence issues, canine Lyme and other tick-borne diseases in Massachusetts, prevention, and what is being done by government.

Lyme Groups Tell Congress About Lyme Controversy
LDA and its associated organizations faxed the following letters to Congress last week in response to a letter to Congress opposing the bills by IDSA.
LDA Senate Letter LDA House Letter

LDA Maps Lyme Across the USA – View Reported Case Numbers with a click!
Individual maps from 1990 through 2006 and total case number map 1990-2006 including state reporting criteria changes. Click on individual states for a pop up case number table and an incidence map. All have printer-friendly versions.

2007 Conference DVD now available!
Lyme & Tick-Borne Diseases: Bridging the Medical Chasm, Boston 2007
Includes Lyme Treatment Debate
Conference DVD now available featuring a dozen speakers on areas impacting tick-borne diseases including the debate, Treatment Controversies: Lyme Disease with Ray Stricker, MD (President, International Lyme & Associated Diseases Society) Treatment the ILADS Perspective; and Paul Auwaerter, MD, (Associate Professor in the Department of Medicine, Johns Hopkins University) Treatment the IDSA Perspective.

New Jersey Case numbers/rates by County
The reported numbers in this chart, which come from the NJ Department of Health, show a per county breakdown of Lyme disease cases in New Jersey by numbers of cases and rates of incidence from 2000-2006. The CDC has indicated that only 10% of cases that meet its surveillance definition are actually reported, thus true numbers may be 10 times higher than these reported numbers.

LDA has been accepted as partner in the Environmental Protection Agency’s Pesticide Environmental Stewardship Program (PESP)

The Pesticide Environmental Stewardship Program (PESP) is a voluntary program that forms partnerships to reduce the potential health and environmental risks associated with pests and pesticide use and to implement pollution prevention strategies. Although LDA does not recommend or endorse products, many individuals choose to use repellents against ticks. The informed actions of pesticide users help reduce risk to people and the environment. See http://www.epa.gov/pesp/ for program details. LDA will work with PESP to develop a strategy which will be forthcoming on this site.

Author Rebecca Wells Speaks out on the Columbia University Lyme Research Center
Author Rebecca Wells on Lyme disease and the opening of the Lyme & Tick-Borne Diseases Research Center at Columbia University (5 minute video, the first two black screens have no sound)

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(L to R) Pat Parke, Public Health Educator, Rockland County Department of Health; Pat Smith, LDA President; Lia McCabe, LDA volunteer at Rockland County Vector-Borne Disease Advisory Committee meeting in Rockland County, NY in September, 2007. Ms. Smith presented an update on the spread and impact of Lyme disease across the country to the Advisory Committee.

View Mary McDonnell, star of the Peabody Award Winning TV show BattleStar Galactica in a PSA on Lyme Disease. Ms. McDonnell stars as President Laura Roslin in the popular sci-fi series. She has starred in a number of movies including her Oscar-nominated roles in Dances with Wolves and Passion Fish. She serves as LDA's national spokesperson on Lyme disease.

New IDSA Guidelines Effectively Stopping Treatment for Lyme Patients: SIGN PETITION HERE
The new IDSA guidelines published in October by the Infectious Diseases Society of America (IDSA) are already causing patients to be denied treatment for chronic Lyme disease. The guidelines have recommended against any long term treatments, listing numerous specific antibiotic classes not to be given, listing alternative treatments and even supplements not to be offered to Lyme patients. Clinical discretion has been removed from treating physicians. We ask that you, your families, and friends across the country sign this petition immediately. Lyme treatment is at stake.

Petition Information: The petition on this website is for those 18 years and older to sign. Names and addresses will NOT appear on the internet but will be printed out with the petition when it is ready to be presented to the appropriate entity. LDA never sells names, nor shares them with marketers. The petition will be used in an effort to advance our cause at the appropriate time and will be kept private until that time. Remember, like many of you, LDA is all patients and families of patients ─ and all volunteer.

Other actions will be forthcoming. Please watch this site for details as our campaign for patients' right to be treated unfolds.

Federal Lyme Bill HR 741:

Congressman Smith helped us by introducing the Lyme bill. Let's help him to get this bill passed!
Lyme & Tick-Borne Disease Prevention, Education & Research Act of 2007

This bill was introduced into the US House of Representatives on January 31, 2007 by Congressman Christopher H. Smith (NJ). The bill is identical to last year's House bill (HR 3427) except for updated dates in the bill. We need your help now. Click on the link to get information on the Smith/Stupak bill, (history, co-sponsors, who to contact). Lyme disease desperately needs the $100 million over 5 years that this bill provides for research, physician education, prevention, and task force formation.

Statement from Pat Smith, President, Lyme Disease Association
Historic Move by CT Attorney General to Investigate IDSA Guidelines Process
Gives Hope to Thousands of Lyme Disease Patients

HARTFORD, CT Nov. 16 ─ The national non-profit Lyme Disease Association (LDA), representing more Lyme disease patients than any organization in the United States, applauds Connecticut State Attorney General Richard Blumenthal for beginning an investigation into the Infectious Diseases Society of America (IDSA) Lyme disease guidelines development process. In an unprecedented move, the Attorney General’s office filed a Civil Investigative Demand (CID) to look into possible anti-trust violations by the IDSA in connection with exclusionary conduct and monopolization in the development of the Lyme guidelines.

Literati with Lyme Book Sale:
Buy books with signed bookmarks from the authors. Support LDA’s Lyme disease research and education efforts! Order Today.

Acclaimed Literati with Lyme Authors Amy Tan, Meg Cabot, and Jordan Fisher Smith are part of LDA’s Literati with Lyme team. Literati with Lyme is an effort by nationally-known authors, publishers, editors, literary agents, other publishing professionals, and the national non-profit Lyme Disease Association to raise awareness of this growing infectious disease threat and to raise research funds for a cure.

Lyme Disease Association introduces you to the lineup for: Literati with Lyme
For the first time, four nationally acclaimed authors and an executive editor are sharing the stage with two prominent medical authorities on Lyme for a firsthand account of the disease and its impact on peoples’ lives and livelihoods. Thursday, May 19, 2005, 7-10PM, the Lyme Disease Association (LDA) will host Literati with Lyme, a fundraising event at New York University, entitled “Writer’s Block of the Worst Kind.” The event is featuring Literati who have all had Lyme disease: Amy Tan (The Joy Luck Club and movie); Meg Cabot (The Princess Diaries series and movies); E Jean Carroll (advice columnist for Elle Magazine); Jordan Fisher Smith (Nature Noir: A Park Ranger’s Patrol in the Sierra); and Jennifer Weis (executive editor St. Martin’s Press).

New Book for kids with Lyme Disease - BUY BOOK ONLINE
Lyme Disease Is No Fun: Let’s Get Well! written by Mary Wall MS Ed, CCLS, a Columbia graduate student, edited by Colleen M. Smith, a peer-review medical journal production editor and Johns Hopkins grad─each has battled Lyme disease as a child. Author Amy Tan has written the back cover note. Published by Lyme Disease Association, Inc.

Lyme Disease Update Now Available
Lyme Disease Association, Inc., (LDA) announces the publication of Lyme Disease Update: Science, Policy, & Law, the first Lyme disease resource book of its kind. Marcus Cohen, noted columnist for the Townsend Letter for Physicians & Patients is the author of the Update. NY Times Bestselling Author Amy Tan has written the Preface from her personal perspective on the difficulty of getting diagnosed and appropriately treated for Lyme disease.

The book is a must for busy physicians who lack time to read the peer-review on Lyme disease and for patients who have been refused treatment or even a Lyme diagnosis, the doctor perhaps citing a negative test (the book documents seronegativity) or the patients’ lack of conformity to the CDC criteria, which are meant for surveillance purposes only─the reference is cited in the Update.

Lyme Disease Association News Archives