SUPPORT LDA MENU
For more Lyme Disease information,
visit our affiliate
Welcome to Lyme Disease Association, Inc. (LDA)
LDA NEWS & UPDATES
SAVE THE DATE! LDA/Columbia University Scientific Conference Oct
2 & 3
Lyme & Other Tick-Borne Diseases: The Science & Clinical Implications
The Lyme Disease Association, Inc. will hold its 11th annual Lyme & Tick-Borne Diseases Conference on Saturday Oct 2 (8-5:30, reception until 7PM) and Sunday October 3 (8:00-1:30) at the Hyatt Penns Landing in Philadelphia, PA. The conference, jointly sponsored by Columbia University, will include the science and also clinical breakout sessions. Go to
www.LymeDiseaseAssociation.org for details as they become available.
Spotlight on Lyme
Sunday, May 23, 2010
Pier Village, Long
Branch, New Jersey
Album | Results
Lyme & Tick-Borne Diseases Forum
Wednesday, June 2, 2010, 7-10PM
Over the last decade, New Jersey has ranked 3rd in the U.S. in the number of reported Lyme disease cases and has shown an increase in other tick-borne pathogens. To help the public, officials, physicians
and constituents learn more about tick-borne diseases, Congressman Christopher H. Smith
is hosting this Lyme and Tick-Borne Diseases Forum. Featured speakers will include national experts on treatments and testing for Lyme and other tick-borne diseases, on ticks and pathogens, and on the impact on patients.
Forum Location: In the Wall Township NJ Municipal Building (Monmouth County)
2700 Allaire Rd Wall, NJ 07719 (behind the Wall police station and Wall library)
Easily accessible from: Garden State Parkway, New Jersey Turnpike, Pennsylvania Turnpike, I-195
Click for directions.
An audience Question & Answer session will follow presentations from the following speakers:
Dr. Joseph Burrascano, MD, an Internist, is recognized internationally as a skilled Lyme disease clinician and founding member of the International Lyme and Associated Diseases Society. He has authored a number of papers and three textbook chapters on Lyme disease and has provided expert testimony before state legislatures and before Congress. He will focus on the clinical diagnosis and treatment of tick-borne diseases.
Nick Harris, PhD, is the founder and CEO of IGeneX, Inc., a specialty laboratory devoted exclusively to patient testing and research related to Lyme disease and its associated co-infections. He has spent over 25 years researching and developing tests in this underserved area. He will focus on the role of the laboratory in the diagnosis of Lyme and its co-infections.
Ellen Stromdahl, PhD, (invited) is an Entomologist with the Tick-Borne Disease Laboratory for Entomological Sciences with the US Army Public Health Command. She will focus on tick species found in the US and the pathogens they carry, focusing on New Jersey and the Northeast.
Pat Smith, President, national Lyme Disease Association (LDA), is a Member of the Columbia University Lyme and Tick-Borne Diseases Research Center Advisory Committee and former chair of the Governor’s Lyme Disease Advisory Council (NJ). She will focus on the spread of Lyme disease, its impact on patients, and what is being done. For information on Lyme disease,
browse this site.
STATEMENT OF THE NATIONAL NON PROFIT LYME DISEASE ASSOCIATION, INC. ON THE IDSA GUIDELINES PANEL DECISION 4-22-10
We are not surprised by the conclusions reached by the IDSA review panel but are certainly disappointed. It is certainly suspect that in considering a disease with numbers on the rise (250% increase from 1993-2008), one which is so highly controversial and with unsettled and “undone” science, that the panel would vote “lockstep” (8-0) except for one dissenting vote to uphold all of the original recommendations. The national Lyme disease Association (LDA) and its 35 associated organizations publicly expressed their concerns about bias in the panel selection throughout the process, including the selection of the chair, who is a former president of the IDSA, and the pronounced lack of community treating physicians.
We note with interest that IDSA separated out the only real area of contention among its panel, a 4-4 vote, and because it did not fit the required voting process, IDSA alleged that this was NOT a recommendation they needed to review, but only a statement in their Guidelines executive summary that the Attorney General asked them to review. It is a crucial statement on testing, the essence of which appears throughout the guidelines and is most often used by doctors and insurers to prevent patients receiving diagnosis and treatment. The panel’s apparently improper first vote on this issue was uncovered by a FOIA, (freedom of information act) on the panel voting process. The vote was 4-4, not meeting the supermajority required to pass it, so they characterized the testing issue as a non recommendation, which they claim, does not require a supermajority.
The IDSA’s empty “political” rhetoric, adherence to these guidelines is only voluntary, certainly we support clinical judgment, is belied by their statement “Based on current research for patients with non specific symptoms that may be seen in may illnesses...it would be a deviation from “best fit” [association between illness and likely diagnosis established by medical evidence] to attribute such symptoms to Lyme disease in the absence of more specific clinical features or laboratory results...All Lyme disease clinical findings including erythema migrans can be seen in diseases other than Lyme...It would thus be clinically imprudent to make this diagnosis of Lyme disease using these non specific findings alone.”
The IDSA’s position at the onset of this investigation and settlement process has been that the Attorney General of Connecticut’s investigation was interfering in medical practice rather than the guidelines formation process. To apply logic to their way of thinking, any changes in the Guidelines would admit wrongdoing on their part and set a precedent for future government actions in creation and development of their many guidelines. So instead, the IDSA panel upheld all the recommendations, failed to provide after each recommendation the specific references that were considered and used to justify upholding each recommendation (the resources are lumped at the end of the paper). We consider it striking that they provides lists of items that need to be considered in the “next” upgrade of their guidelines, thereby relieving themselves of responsibility of acknowledging that changes are needed to these current guidelines.
The IDSA admits to receiving a large volume of case reports & case series that attested to “PERCEIVED” clinical improvement with long term treatment. One would assume that in most cases, doctors were perceiving the improvement in patients, and thus their years of clinical judgment would carry significant weight. Yet the IDSA excluded all of that evidence as not justified. IDSA also discounted the controlled studies which did indicate improvement after long term antibiotics
Patients cannot wait for the entrenched medical establishment to address the problems with this disease. They need treatment and relief now. The ratification of these guidelines by IDSA becomes another nail in the coffin for those afflicted with Lyme disease. We call upon the Attorney General of Connecticut to examine the entire process to determine compliance with his stated requirements and to take further action should grounds be found to do so.
Pat Smith President www.LymeDiseaseAssociation.org
Health and Nursing Division, Township of West Milford NJ, Announces Free Public Lyme Disease Program
Speaker, Pat Smith, President of Lyme Disease Association, Thursday, April 15 at 7:00
p.m. to 9:00 p.m. at the West Milford Elks Club, Union Valley Road, West Milford, 07480.
Further questions, call the Health Department at 973-728-2725.
Benefit for family of Musician Bill Chinnock (Open to public)
He battled Lyme disease for many years before his death in 2007
On Saturday March 27, 2010 from 7PM until 1AM, Asbury Park music legends will perform to celebrate the life and music of Emmy winner Bill Chinnock at the Stone Pony in Asbury Park, New
Jersey. The late Mr. Chinnock was a founding member of what later became Bruce Springsteen's E Street Band and was an accomplished guitarist, keyboardist and singer-songwriter who released 13 albums, his first in 1975. In 1987, he won an Emmy award for his song "Somewhere in the Night which was used as the theme song for the daytime soap “Search for Tomorrow.” In the early 90's, he recorded a duet with Roberta Flack.
Bill Chinnock died in March of 2007 after a long battle with Lyme disease. This event is a benefit for his son’s trust
fund. Also, The Lyme Disease Association, LDA, will have an information table at the event.
Additionally, LDA will have an information table and host a panel discussion at the Paramount Theater in Asbury Park at the
Garden State Film Festival (Thursday March 24) showing of Under Our Skin, the award winning Lyme disease documentary. Here, LDA will distribute post cards to those who want to attend the Saturday night Chinnock benefit, and each card turned in at the
Stone Pony door Saturday night will give the LDA $10 toward its research and education programs for Lyme disease.
LDA and UOS part of Garden State Film Festival
The Garden State Film Festival (March 25-28) is in its 8th season, and this year has chosen for its charity partner the Lyme Disease Association. The festival will show Under Our Skin on Thursday March 25, 2010 at 7PM at the Paramount Theater in Asbury Park. LDA will host a panel discussion featuring Dr. Robert Bransfield, Red Bank, Psychiatrist, President, International Lyme & Associated Diseases Society at the conclusion of the award winning Lyme disease documentary. LDA will also staff an information booth with literature.
Vote online for Lyme Awareness car in NASCAR Race, few days left!
Designed by a Lyme patient/advocate
The Lyme Disease Awareness Race Car has passed final inspection and is now ready to "race" awareness for Lyme disease! The winner of the 'design a race car contest' will have their original design painted on an official race car in time for the weekend NASCAR races in North Carolina, where millions will see it live and on TV!
here to see 3D pictures (watch for the bulls-eye rash to appear), then cast your vote! You can vote once
a day, so be sure to re-visit the site and watch the number of votes climb! The winning car designer receives an all-expenses paid weeks vacation, race passes, etc. for the Charlotte, NC NASCAR races. If the Lyme car wins the contest, the grand prize will be donated to a family dealing with Lyme disease.
LDA president Pat Smith and LDA of Southeastern Pennsylvania President Doug Fearn in Worcester PA on December 3, 2009 where they testified before the Pennsylvania House Majority Policy Committee on Combating Lyme
Disease. Also pictured are advocate Don Hannum, Pennsylvania Lyme Disease Awareness Committee, and Melissa Walsh, MPH, Supervisor of Chronic Disease Injury Prevention Division, Chester County Department of Health, who testified about the amount of Lyme disease in Chester County and the reporting issues, and Karen Simeone, Program Director and Julia Wagner, Director of the Montgomery County Lyme Information & Support Group who spoke about a number of local families and their children who are affected. Ms. Smith addressed the federal issues, epidemiology, state issues and provided recommendations table to the Committee. Mr. fearn spoke about the programs provided for PA Lyme patients by LDASEPA and factors contributing to the spread, especially the increase in deer population.
Pat Smith, LDA President, Andy Holzman Manchester Rotary (VT), Richard Smith, LDA volunteer, and Dr. Stepahnie Holzman at the Gear Up for Lyme Bike Climb up Mt. Equinox in Manchester, Vermont on August 1, 2009. The Rotary sponsors the benefit for the LDA and charities of Manchester.
LDA President Pat Smith (L) and NJ LymeQuest Support Group Leader, Jeannine Phillips (R), meet with Assemblyman Chivukula about Lyme disease issues in New Jersey.
Check out the Sale prices on Literati with Lyme books. Buy them online here.
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. A number of publishers including Houghton
Mifflin, Milkweed Editions, Penguin Group (USA) Inc. and Harper Collins
donated books to the Lyme Disease Association to help in its work. Now you can
purchase books/tapes by these authors with a personally signed bookmark
included from the author and benefit the work of LDA at the same time.
See list and ordering
Benefit for Corning Fingerlakes Area Chapter, Lyme Disease Association
A concert sponsored by Grace United Methodist Church to benefit the Corning
Fingerlakes Chapter of the national Lyme Disease Association will take place
Nov. 22, 4pm, at Grace United Methodist Church, 191 Bridge St. in Corning, New
York 14830. Entitled “A Little Bit of Broadway,” the concert will feature
vocal performance by Jim Hudson and Claire Smock. Lyme disease literature will
be distributed. Admission is free, donations will be accepted.
Lyme Disease Association Annual Affiliate, Chapter, Supporter Meeting 2009
Some of the attendees of the Lyme Disease Association's annual Affiliate, Chapter, and Supporter Meeting held in National Harbor Maryland on October 22, 2009. Each year, leaders from LDA associated groups across the county meet before the annual scientific conference to discuss national and state issues of importance to the Lyme disease community. Currently, 35 organizations are associated with
Georgia Lyme Disease Association Announces New Website
Lyme disease in Georgia? Information on this new site may surprise those who think Lyme is not a problem in the South. The Georgia Lyme Disease Association is one of 35 groups associated with the LDA.
Columbia Lyme & Tick-Borne Diseases Research Center
Fundraiser - Order by Nov. 2
Come have dinner at Carmine's and see the new musical MEMPHIS with the Columbia Lyme Center on Thursday, November 19 in NYC. It's a hot show, lots of "bring it home and sing it" music, fabulous male and female leads. Limited seating. Tickets are $375 per person ($185 tax deductible) for dinner and prime orchestra seats.
Print out the RSVP and mail to address provided.
Email any questions.
EPA Announces New Website with Repellents, Effective times, Active ingredients
The EPA has a new website containing a table for tick and/or insect repellents. It includes company name, active ingredient, % of ingredient, hours effective against ticks and/or mosquitoes, and EPA registration number. LDA does not endorse products but feels that consumers need to have available information that is easy to access to make informed choices if they decide to use any products. This site is a great resource.
Diane Blanchard, President, Time for Lyme; Alison DeLong, Brown University; and Pat Smith, LDA President, at the July 30, 2009 IDSA Hearing on the Lyme Disease Treatment Guidelines. Ms. DeLong, an expert in statistics, presented a statistical analysis of the Klempner study showing why the Klempner study is not useful to rule out benefits of long-term treatment. Ms. DeLong has just been selected by the LDA as its newest member of the Lyme Disease Association Professional & Scientific Advisory Board.
Lyme by the Numbers
While awaiting final 2008 numbers which are published by CDC in August 2009, you can check out all the reported numbers and incidence of Lyme by state and nationally since 1990 on a national map, or if you click your state on the map, you can find the case numbers on a table. You can also find an analysis of the 2007 numbers prepared by LDA.
LDA Maps Lyme Across the USA
- View Reported Case Numbers with a click!
Analysis of 2008 CDC Reported Lyme Cases
38% increase in Lyme cases in 2007
LDA analysis of 2007 CDC reported Lyme cases.
Florida Lyme Advocacy Announces New Website
The Florida Lyme Advocacy, Inc. has published its new website to raise awareness about Lyme disease in Florida and help raise funds for Lyme disease.
LDA Announces New Tick Cards
LDA, with support from the Brookfield CT Rotary and design help from CT resident David Shugarts, has produced a new business card sized tick card with up-to-date info on ticks and diseases they carry, proper removal, and symptoms. The cards join the LDA's popular LymeR Primer, ABCs of Lyme Disease, and Tickmarks (bookmarks) which can currently be ordered online for free. The tick cards will be available to order soon. Click the link to see a downloadable PDF of the card
LDA President Pat Smith and NJ State Senator Sean Kean, on August 13, 2009, at a meeting to discuss the issue of Lyme disease in New Jersey and nationwide.
Topics in Forest Lake Minnesota
LDA President Pat Smith (L) with LA TV's host Greg Ochs after she appeared on his hour long show
Hot Topics in Forest Lake Minnesota on August 9, 2009. Author Pam Weintraub, (R) taped another show the next day with Greg. Ms. Smith discussed the spread of the disease, prevention, legislation, and the controversies. Ms. Weintraub focused on the science in her show.
LDA Meets with Congressional Offices in Minnesota and Wisconsin
Wisconsin ranks 7th in the country and Minnesota ranks 8th in reported Lyme disease cases, dispelling the myth that Lyme is a disease only found in the Northeast. LDA discussed HR 1179 with legislative offices there after a 4-day August trip in those states, hosted by the Minnesota Lyme Action Support Group, an LDA affiliate.
Goes to Wisconsin
Lake Minnesota Lyme Disease Forum
the Minnesota Senate
Lyme Disease, Legislation, and Spread
Host Larry Rifkin interviewed Dr. Dan Cameron, President, ILADS; Pat Smith, President of the Lyme Disease Association; and Maggie Shaw, RN, a patient and part of the Newtown Lyme Disease Task Force; on Talk of the Town on 1320 WATR, Waterbury, CT on Aug. 13, 2009. Listen now.
LDA Announces Lyme Disease Language in US Senate Appropriations Committee
The Lyme Disease Association (LDA), Time for Lyme (TFL), and the California Lyme Disease Association (CALDA) are pleased to announce that on July 30, 2009, the Senate Appropriations Committee reported out language on Lyme disease contained in the Fiscal Year 2010 Labor, Health & Human Services, Education Appropriations bill. Senators Chris Dodd (CT) and Tom Harkin (IA), Labor HHS Subcommittee Chair, were instrumental in passage of the language through the committee. It will now be brought before the full Senate.
The full House already passed Lyme language on July 24. Click for language & details.
Federal Employees: LDA CFC Eligible
NEWS for Lyme disease!
The LDA has been found eligible for inclusion on the National Part of the 2009
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
2009 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:
[LDA also made the 2006, 2007, 2008 CFC campaign and thanks to all those who
have been contributing.]
Challenge to the IDSA Guidelines
Written testimony by Dr. Steven Phillips to IDSA Guidelines' Panel
LDA/34 Groups Submit Written Guidelines Challenge to IDSA panel
Present Patient Viewpoint
34 Lyme groups submitted a challenge to the IDSA guidelines in conformity with the IDSA settlement with Attorney General Richard Blumenthal (CT). Under the settlement, a newly selected IDSA panel formed under the auspices of an ethicist, solicited public input. Deadline for written public testimony was April 24. Additionally, a one-day public testimony period will be broadcast over the Internet.
LDA Presents: One Presentation You Missed
The settlement between the Attorney General of Connecticut and the IDSA over the 2006 IDSA Lyme disease guidelines was historic yet much of the agreed upon process was left under IDSA control. Not only did IDSA get to choose the panel members, thereby restricting the range of opinions represented, it also set the hearing length, location and date. Most importantly, IDSA retained the power to select the speakers, including those challenging the guidelines. Among those not chosen is Dr. Betty Maloney. This is disappointing because Dr. Maloney wrote 6 evidence-based challenges to the recommendations on prophylaxis, early Lyme disease, late neurologic Lyme disease, post-treatment Lyme disease, the list of not recommended therapies and the use of clinical judgment in Lyme disease. Some of her points were taken up by other ILADS presenters but the strength of her material is best understood when seen as a whole. Here is the
PowerPoint presentation (Save
to your computer when prompted. Microsoft PowerPoint program is needed
to view.) she would have presented to the panel had she been
selected . The text of her narrated slides can also be down loaded here.
One Advocates Perspective: News Release by Lyme Disease Education and Support Groups of America
The Evidence Is In: Chronic Lyme Disease Does Exist
LDA Announces Lyme Disease Language in US House Appropriations Committee
The Lyme Disease Association (LDA), Time for Lyme (TFL), and the California Lyme Disease Association (CALDA) are pleased to announce that on July 17, 2009, the Fiscal 2010 Labor, HHS Appropriations Committee reported out language on Lyme disease which was written and introduced by Congressman Christopher Smith (R-NJ). U.S. House Appropriations Committee Members Frank Wolf (R-VA), and Nita Lowey (D-NY) were instrumental in its inclusion, as was Subcommittee Chair, David Obey (D-WI). The next step is consideration by the full US House of Representatives.
Gear Up for Lyme
Presented by the Manchester (VT) Rotary Club to benefit the Lyme Disease Association and charities of the Manchester Rotary. Saturday, August 1, 2009. The Gear Up For Lyme Mt. Equinox Uphill Bike Climb is a challenging 5.4 mile bike race up the scenic Mt. Equinox Skyline Drive finishing at the top of Mt. Equinox in beautiful Manchester, VT. LDA President Pat Smith will briefly address the riders about the dangers and spread of Lyme.
signing for the bill, HB 6200
"Beneath the rule of men entirely great, The pen is mightier than the sword." (Bulwer-Lytton)
Governor M. Jodi Rell signs HB 6200 into law in a ceremony on July 16, 2009 in Brookfield, Connecticut.
bill signing photo album.
signing for the bill, HB 6200
President Pat Smith with Connecticut Governor Jodi Rell (C) and Emily Bragg,
Time for Lyme Board Member (R), at the Lyme doctor protection bill
signing ceremony in Brookfield CT, June 16. This was a ceremonial signing for
the bill, HB 6200, which became law July 1. The law allows clinical judgment
in diagnosis and treatment for Lyme disease. LDA and its Connecticut partner
groups were instrumental in the passage of the bill.
bill signing photo album.
LDA Salutes the Connecticut Legislators for the New "Lyme" Doctor Protection Law. Thank You!
Connecticut House Bill 6200 sponsor Peggy Reeves (R to
L); Russ Cornelius, a founder of the Brookfield Lyme Task Force; Kim Fawcett, bill
sponsor; Pat Smith, LDA President; Chris Lyddy, a sponsor; Emily Bragg, Time for
Lyme; Jennifer Reid, Co-chair of the Ridgefield Task Force; and other advocates at the ceremonial bill signing in Connecticut. LDA worked with many legislators in Hartford including those pictured.
bill signing photo album.
LDA Meets with Federal Government on Lyme Prevention for Kids
Brassard, Senior Biologist, Environmental Protection Agency; Dr. Ben Beard,
Chief of Vector-Borne Diseases, Centers for Disease Control & Prevention;
and Pat Smith, President, Lyme Disease Association at a meeting in DC on
June 24 to discuss strategies to protect children from getting Lyme disease.
LDA meets with EPA on Lyme Disease Prevention
LDA President Pat Smith held a Lyme briefing for the Environmental Protection Agency employees in Washington, DC on June 4 and afterward, met with EPA officials Edward Brandt, Senior Economist, Pesticide Environmental Stewardship Partner
Liasion; and Frank Ellis, Senior Entomologist and Team Leader, Biopesticides and Pollution Prevention Program. LDA is a PESP partner of the EPA, to try and reduce ticks and risks associated with ticks--with LDA's program goals to apply especially to
meets with the Sponsor of HR 1179, the Lyme bill, on June 3
LDA president Pat Smith with Congressman Chris Smith in his office after a meeting about Lyme disease issues including HR 1179, Lyme & Tick-Borne Diseases Prevention, Research, & Education Act 2009, a bill which will provide monies for better tests and education on Lyme disease.
Signup CALDA Patient Survey to be Presented to IDSA
The Infectious Diseases Society of America’s new Lyme disease guidelines
review panel will hold a one day hearing on July 30. This hearing is part of
the antitrust settlement that the Connecticut Attorney General negotiated.
CALDA, an affiliate of the Lyme Disease Association, is conducting a survey of
individual Lyme experiences to give patients a chance to have input. Results
of the survey will be included in testimony to the IDSA panel. To participate
in this survey,
Columbia University Lyme & Tick-Borne Diseases Research Center Studies
Check out current studies and the current blood draw for a study that has as a goal to develop a national resource specimen bank for diagnostic test and biomarker development. Next blood draw, office of Andrea Gaito, MD, rheumatologist in Basking Ridge, NJ
on July 25, 10:00am . 908-766-0339
CONNECTICUT DOCTOR PROTECTION BILL FOR LYME SIGNED BY GOVERNOR RELL
JUNE 21, 2009 − Patient groups across Connecticut and the nation are
elated by the June 21 announcement by Connecticut Governor Jodi Rell that she
has signed the Lyme disease doctor protection bill, following its recent
unanimous passage in both houses of the Connecticut General Assembly.
LDA Salutes Russ Cornelius!
American Red Cross, 2009 Heroes of Western Connecticut
Russell Cornelius-Community Health Impact Award
Brookfield, CT resident Russ Cornelius is an advocate for tick-borne disease education and awareness. Russ is a founding member of the Brookfield Lyme Disease Task Force and as the part of a Brookfield Rotary project he helped promote a First Aid Kit for Tick Removal and helped implement a Lyme disease education program, Time For Lyme, Inc Curriculum., that is now part of Brookfield's education program. Russ has also helped bring LDA educational awareness programs to Connecticut. Countless people are better equipped to prevent, prepare for and respond to tick-borne related emergencies, thanks to his relentless efforts and impact to provide knowledge of Lyme and other tick-borne diseases.
Smith, President, Lyme Disease Association, appeared on the Nashville, TN Fox
17 – “Tennessee Mornings” program with Hosts Charlie Chase and Kelly
Lyme Disease in Tennessee
LDA President Pat Smith with Michael Schulz, Field Representative for Lamar Alexander after a meeting in the Senator's Nashville Office on Lyme and other Tick-borne diseases in Tennessee.
Pat Smith, LDA President (R seated) and LDA volunteer Rich Smith (L seated) with some of the Tennessee Lyme patients and activists with whom she met about the problems facing
patients nationwide and in Tennessee.
The Lyme and Tick-borne Diseases Research Center at Columbia University NEW WEBSITE
For patients and families, physicians and researchers in need of information about chronic Lyme disease. A powerful and credible source of Lyme-related materials, it represents the only academic research center in the country to focus multidisciplinary research on chronic Lyme. Synonymous with the Center's mission, the website offers up-to-date resources, new research results from Columbia University and elsewhere, frequently asked questions, an "ask the doctor" section (most popular to date), and commentary on important events in the Lyme world. Feedback on the site is welcome.
NJ Lyme Disease Case Numbers/Rates by County 2007
Latest stats from the NJ Department of Health and Human Services
Dr. Betty Maloney, Minnesota; Tim Lynagh, Legislative Director for Congressman Christopher Smith (NJ-4); and Pat Smith, President, Lyme Disease Association; in the office of Congressman Smith (not pictured) after a meeting he hosted with officials from the National Institutes of Health. The meeting concerned research and education on Lyme and other tick-borne diseases, what NIH is doing, what advocates feel needs to be done to learn more about the growing epidemic.
Connecticut Doctor Protection Bill Passes House
Connecticut Lyme groups and the national Lyme Disease Association, Inc. are pleased to announce that
H.B. 6200, with a floor amendment by Representative Betsy Ritter et al., passed through the Connecticut House of Representatives.
NY Congressman John Hall's April 17, 2009 Press Conference, Dutchess County
Congressman John Hall hosted a press conference to raise awareness of Lyme and other tick-borne diseases in
Dutchess, one of three highest counties in per capita Lyme cases nationally. Speakers were the Congressman (C), LDA President Pat Smith (R), Bill Mc Cabe (L), Dutchess County Legislator, and Hudson Valley LDA president, Jill
Auerbach. Congressman Hall shared his concern over this increasing epidemic and discussed the many ways he is trying to encourage change on the federal level, including co-sponsorship of the "Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2009", HR 1179.
here to view his press release.
Lyme Groups Testify in Hartford on Doctors' Right to Treat
Three of the Connecticut State Legislative co-introducers of HB 6200 (top L) Kim Fawcett; (2nd row 3rd, 5th from left) Jason Bartlett, Chris Lyddy; with (2nd from L) Maggie Shaw, Newtown Lyme Disease Task Force; (4th from L) Daniel Cameron, MD, President, ILADS; Karen Gaudian, Ridgefield Lyme Disease Task Force; Pat Smith, LDA president; and Kim Pappa, Eastern Connecticut Chapter, LDA. Other Lyme activists are also pictured.
The LDA and the Task Forces were in Hartford for meetings with legislators and to testify on the bill, HB 6200, in the Public Health Committee. The groups were favorable to the concept of doctor protection with some bill language changes.
Regional Conference to Assess Research and Outreach Needs in Integrated Pest Management to Reduce the Incidence of Tick-Borne Diseases in the Southern US
Group workshop attendees at the Lyme in the South 3-day workshop at the CDC in Atlanta in January 2009. The conference was sponsored by the Southern Region Integrated Pest Management Center, Centers for Disease Control and Prevention, Bayer Environmental Science, Focus Diagnostics, Novozymes Biologicals, Inc.
Click the picture for enlargement and identification.
LDA Speaks after UOS in Saybrook CT
(L to R) Kim Pappa, Lyme Information Network (LINK); Julie Ciucias, (LINK); Pat Smith president, Lyme Disease Association; and Jessica Naylor, (LINK), at a showing of Under Our Skin in Saybrook, CT on March 6. The showing was arranged by two seniors as part of a senior project at the High School and LDA was asked to speak about Lyme disease at the event. Kim Pappa is also Lyme Disease Association, Eastern Connecticut Chapter Chair.
Check out LDA research projects 1992-2009
LDA has awarded many grants over its lifetime. See a partial list here and the resultant publications and some of the conference presentations.
LDA Educates NY Congressman About Lyme
LDA president Pat Smith, LDA Corning Fingerlakes Area Chapter Chair Lis Heininger, and Jennifer Ruland aide to Congressman Eric Massa (NY) in Corning for a March 2009 educational briefing on Lyme disease issues.
Announcing the introduction of HR-1179: Lyme and Tick-Borne Diseases Prevention, Education & Research Act of 2009
Introduced by: US Representative Christopher Smith of New Jersey [for himself, Mr. Tim Holden (PA), Mr. Bart Stupak (MI), Mr. Frank Wolfe (VA)].
LDA, TFL, CALDA hire DC lobbing firm to assist patients' efforts.
See complete bill text
LDA briefs Dutchess County Lyme and Tick-Borne Disease Task Force and NY Congressmen
LDA was invited by the Dutchess County (NY) Lyme & Tick-Borne Disease Task
Force to brief the Task Force and the invited Congressional offices on Lyme
disease in New York and issues at the federal level. Pictured are NY State
Assemblyman Joel Miller; Pat Smith, President, Lyme Disease Association, Inc.;
Benedict B. McCaffree, PhD, Regional Representative from Congresswoman
Gillibrand’s office; Rich Winters, Staff Assistant, Congressman John Hall’s
office; Bill McCAbe, Dutchess County Legislator, and Dutchess County Lyme and
Tick-Borne Disease Task Force; Patricia Valusek, Federal Liaison, and Gina
Bisille, aide, both from Congressman Maurice Hinchey’s office.
LDA strategy for reduction to tick exposure accepted by EPA's PESP Program
LDA is part of the Environmental Protection Agency's Pesticide Environmental Stewardship Program (PESP) in an effort to reduce risks to pests, in particular, ticks, thereby reducing risks to tick-borne diseases. The thrust of this partnership with USEPA is to educate schools and families on the necessity of protection from exposure to ticks which may carry disease causing pathogens. This strategy includes developing tools to be used in schools and developing educational tools for people who have access to public lands for outdoor uses, i.e. walking, hiking.
EPA has now accepted LDA's strategy.
Who are Most At Risk for Lyme Disease? Our Children!
LDA Introduces the FREE Educational On-Line Module: How A Tick Can Make You Sick
Designed for grades 6 through to adult, this 4 section slide show module in Adobe Presenter can be opened on the Internet or printed from the Internet. It contains pre and post tests and an audible pronunciation guide. A resource section is also included. The LDA is concerned that a 39% increase in Lyme cases occurred in 2007 and that children are at the highest risk of developing Lyme disease, so we offer this module free and urge its use by schools, scouts, park systems, and the public.
Lyme Disease Bill Held
Back By Infectious Diseases Society of America (IDSA)
for video from May 7th Lyme Rights protest at Congressman Pallone's Long
Branch, NJ office
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.”
For more information visit the Connecticut Attorney General Website.
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...".)
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
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.
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)
View with: RealPlayer
View with: Windows
NEJM Owes Patients Responsible Journalism Says Lyme Disease
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.
format | .swf format
New IDSA Guidelines Effectively Stopping Treatment for Lyme Patients:
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.
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
Buy books with signed bookmarks from
the authors. Support LDA’s Lyme disease research and education efforts!
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.
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).
Literati Photo Album
Literati With Lyme Website (Because this event has passed, certain links
will be unreachable.)
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.
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
Lyme Disease Association
Last Modified: June 10, 2010