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Latest Lyme Disease Research to be Presented Oct. 20-22 in Philadelphia

Media Advisory:
October 18, 2006

Contact: Vicky Jaffe, 617-937-2578,
Vicky.jaffe@mslpr.com

Latest Lyme Disease Research to be Presented Oct. 20-22 in Philadelphia
Featured Presentations include Lyme Disease Link to Alzheimer’s

The recent frost unofficially ends the high-risk season for Lyme disease infection, but with warmer, wetter weather over the past year, and ticks continuing to be active over the winter, experts predict 2006 may surpass 2005 for the number of reported Lyme disease cases. In the United States, 23,305 Lyme disease cases were reported by the Centers for Disease Control in 2005, but only 10 percent of cases meeting the CDC criteria are actually reported. Therefore, about 233,050 U.S. cases that met the CDC criteria occurred in 2005. Other physician-diagnosed cases that do not meet the narrow CDC criteria are not counted anywhere. The continued toll of Lyme disease brings together hundreds of physicians, researchers, health care providers, advocates and patients looking for the latest information about the most common tick-borne disease in the world today.


The 7th Annual Lyme Disease Association (LDA) Lyme & Other Tick-Borne Diseases Conference will be held on Friday, Oct. 20 at the Crowne Plaza Hotel, Center City, Philadelphia, jointly sponsored by the Columbia University College of Physicians and Surgeons which offers physicians continuing medical education credits for the one day session.

Highlights of presentations include:
• Pathologist Alan B. MacDonald, MD, will present his findings at 3pm on Friday, Oct. 20 that Borrelia burgdorferi (the bacteria that causes Lyme disease, typically found in a spiral form) can take different shapes when it invades mammals, including cystic forms and granular forms that may be found inside of neurons in Alzheimer’s disease in the Hippocampus. Three abstracts of Dr. MacDonald’s were accepted at this year’s International Meeting of the Alzheimer’s Disease Association in Madrid, Spain and have been published in “Alzheimer’s and Dementia,” a publication of the Alzheimer’s Society. 

• On Friday at 8:15 am, keynoter David Ecker, Ph.D., Chief Scientific Officer at the Ibis Division of Isis Pharmaceuticals in Carlsbad, CA, will discuss universal biosensor detection of emerging infections, which has applications for Lyme, as well as other infectious diseases.

• On Friday at 10:40am, Dr. Jeffrey D. Rothstein of Johns Hopkins University will discuss the ability of antibiotics to stimulate Glutamate Transporter Expression and delay the loss of neurons and muscle strength in animal models with ALS. 

The International Lyme and Associated Diseases Society (ILADS) Scientific Session on tick-bore diseases will follow over the weekend.

For more information, please go to www.LymeDiseaseAssociation.org




New IDSA Guidelines Forbid Doctors From Using Clinical Discretion in Diagnosing Lyme Disease

For Immediate Release:
Contact: Vicky Jaffe, MS&L
(617) 937-2578, Vicky.jaffe@mslpr.com

Statement from Pat Smith, President, Lyme Disease Association 

New IDSA Guidelines Forbid Doctors From Using Clinical Discretion in Diagnosing Lyme Disease

JACKSON, NJ Oct. 10 ─ The national non-profit Lyme Disease Association (LDA), representing more Lyme disease patients than any organization in the United States, objects strenuously and with great alarm, to the restrictive new Clinical Practice Guidelines published this October by the Infectious Diseases Society of America (IDSA.) The new guidelines make it far more likely that Lyme disease will be missed in the early stages, when it is easier to treat. As a result, the guidelines set the stage for creation of a new generation of chronic Lyme disease patients, individuals with Lyme disease diagnosed and treated so late that they may never be cured.


In a nutshell, the reckless new IDSA guidelines forbid doctors from using clinical discretion in determining whether or not patients have Lyme disease. Instead, they require that doctors either see a characteristic rash known to occur in about half the patients, or that patients register positive on the two tests recommended by the Centers for Disease Control & Prevention (CDC) ─ tests known to miss up to half the patients. At any stage of disease, as many as half the patients may remain undiagnosed.

Lyme disease diagnosed late and allowed to disseminate for months or years without treatment causes severe disease that may never completely resolve. Late stage patients suffer more sequelae ─ continued symptoms ─after treatment and are far more likely to fail treatment than patients diagnosed in a timely fashion, with early Lyme disease. Late-stage patients suffering chronic symptoms are frequently very sick and in great pain, often as impaired as those with congestive heart failure and sicker than people with type two diabetes. 

Despite the basic math and the documented sequelae of late-diagnosed and late-treated Lyme disease, the new IDSA Guidelines state (without offering evidence or any supporting citations) that most Lyme patients are diagnosed early. This defies the experience of the LDA and of the patient community. It is also flies in the face of a study, now in press at the Journal of Evaluation in Clinical Practice, which has found that when patients fail treatment, the reason is overwhelmingly because they were diagnosed and treated late. 

The IDSA guidelines also deny that chronic persistent infection exists, arbitrarily dismissing all studies documenting persistent infection after short-term therapy and ignoring mounting evidence that more treatment is beneficial in chronic cases.

Finally, the IDSA guidelines fail to even mention another set of diagnostic and treatment guidelines published by the International Lyme and Associated Diseases Society (ILADS) listed with the National Guideline Clearinghouse, which offer an alternative view of Lyme disease diagnosis and treatment. 

LDA understands that the debate over the cause of chronic Lyme disease continues to be contentious and to divide those treating and studying the disease. There continue to be two standards of care. But the need to diagnose Lyme disease early enough to obtain the best treatment outcome and most favorable prognosis has never been controversial. Despite this, the IDSA guidelines are so draconian they stand poised to let many patients slip through the cracks and elude diagnosis until they are suffering late-stage, difficult-to-treat Lyme disease. As the voice of the Lyme disease patient community, LDA challenges these guidelines on humanitarian grounds.




Chronic Lyme Patients Can’t Get Treated CDC Director Told by National Patient Group

Contact:
For Immediate Release
Pat Smith
888 366 6611
Lymeliter@aol.com
www.LymeDiseaseAssociation.org

Chronic Lyme Patients Can’t Get Treated CDC Director Told by National Patient Group

Lack of treating physicians, inadequate testing, and under diagnosis are leading to more chronic Lyme disease with surveillance problems contributing to lack of focus & funding

JACKSON, New Jersey (July 19, 2006) ─Lyme patients have fought for years to have their public voice heard by the Centers for Disease Control and Prevention, CDC. They finally got their opportunity when the Lyme Disease Association, a national non-profit consisting of patients and families of patients, met with the nation’s leading public health officer, CDC Director, Dr. Julie Gerberding. She and other CDC officials listened as the Lyme Disease Association and four Congressmen addressed rising Lyme cases, chronic disease and causes, inability to get treatment, and lack of funding. The government only expends ~$33M each year on Lyme disease despite about 220,000 new cases of Lyme disease nationally that meet CDC surveillance criteria. That does not even include cases, usually chronic, which fall outside that non-diagnostic criteria.


Dr. Brian Fallon from Columbia University College of Physicians and Surgeons presented long-term Lyme disease treatment studies and their significance, including his recently completed NIH-funded chronic Lyme disease study showing improvement in patients. LDA president Pat Smith discussed the need for direct communication between patient groups and the CDC and between treating physicians and the CDC. Congressman Christopher Smith (no relation) offered to host a forum for those issues in New Jersey. 

Ms. Smith presented the need for mandatory lab reporting in each state, uniform surveillance, and a dual CDC reporting system allowing for clinical cases to be accepted in a separate tier of reporting. She also recommended removing the ELISA as a screening test due to its insensitivity and allowing the Western Blot to be used alone for diagnosis, after re-adding two bands removed by CDC in the mid 90’s. “New technology also needs to be looked at in the testing arena,” Smith added, referring to a recently published CDC article on chronic diseases and the use of cutting edge technology to diagnose. Researcher Dr. Steven Schutzer, New Jersey Medical School, who also attended, affirmed that need.

Ms. Smith asked the CDC to write every state health department informing them that the CDC criteria are not meant for diagnostic purposes, only for surveillance. Health departments can then notify physicians in their states. “Too many people,” she said, “are being refused diagnosis, treatment, and insurance reimbursement based on surveillance criteria. This is leading to a huge increase in chronic disease, costing people their health, homes, jobs, education, and childhood.” LDA presented a comprehensive notebook including statements from dozens of Lyme patients attesting to their diagnostic and treatment problems often related to CDC surveillance criteria. 

Lorraine Johnson, JD, MBA, Executive Director of CALDA and Member of the LDA Professional Advisory Board, spoke about peer review and guideline issues. Her main thrust was explaining how unsettled science and two sets of treatment guidelines have led to two standards of care, and all physicians need to be aware that there is a standard which allows for long-term treatment of chronic patients. “What we would like to see is for the CDC to treat Lyme disease the same way it treats prostate cancer—providing patients with information regarding treatment options until the science is more settled,” she said. 

The LDA-initiated meeting was hosted by Congressman Christopher Smith (R-NJ). Other US Representatives who personally attended were Congressman Tim Bishop (D-NY), Congresswoman Sue Kelly (R-NY) and Congressman Wayne Gilchrest (R-MD). Each spoke about rising Lyme disease cases in his/her state and personal experiences through family and friends with the disease. Staff from the offices of Senator Christopher Dodd (D-CT) and Senator Chuck Schumer (D-NY) also attended the meeting.

Dr. Gerberding agreed that tick-borne diseases are very complicated diseases that are poorly understood. There is a lack of awareness and early primary care is critical. Her concern that there is little government funding for tick-borne diseases dovetails with the purpose of the bills currently in Congress, HR 3427 (Smith-Kelly) and S 1479 (Dodd-Santorum) which will provide $100 million for Lyme disease research, prevention, physician education, and surveillance issues. 73 congressmen currently co-sponsor the House version and over 100 Lyme groups support it.

In closing, the LDA mentioned the unchecked spread of the deer tick populations nationwide over the past 20 years and how we need to learn from history and try to stop the spread of the more aggressive lone star tick now invading the Northeast.

The CDC is now reviewing the recommendations made by the Lyme Disease Association.




List of Bill Supporters to Date 6/11/08

List of Bill Supporters to Date 6/11/08

Celebrity Support:
Author Amy Tan (author, Joy Luck Club)
Jordan Fisher Smith (author, Nature Noir)
Rebecca Wells, (author, Divine Secrets of the Ya-Ya Sisterhood)
Meg Cabot (author, Princess Diaries)
Brooke Landau (ABC News Traffic Anchor, San Diego)

Lyme Organization Support:
Lyme Disease Association, Inc. (national)

LDA Chapters, Affiliates, Supporters:
Alaska Lyme Support (AK) 
California Lyme Disease Association, Inc. (CA)
Eastern Connecticut Chapter LDA (CT) 
Newtown Lyme Disease Task Force (CT) 
Ridgefield Lyme Disease Task Force (CT)
Time For Lyme, Inc. (CT)
Florida Lyme Advocacy, Inc. (FL)
Lyme Disease Association of Southeast Florida (FL)
Lyme Association of Greater Kansas City, Inc.(KS, MO)
Cape Cod Chapter LDA (MA)
Harford County Lyme Disease Support Group, Inc. (MD)
Mid-Shore LDA, Inc. (MD) 
Minnesota Lyme Action Support (MN) 
Mid-Missouri Tick Illness Coalition (MO) 
Montana Lyme Support (MT) 
Brookfield-Wolfeboro NH Lyme Support (NH)
Lymequest (NJ)
Lyme Disease Network of NJ, Inc. (NJ)
Hudson Valley LDA (NY)
LDA Corning/Finger Lakes Area Chapter (NY)
New York Lyme Support Program (NY)
LDA Southeastern PA, Inc. (PA)
Pennsylvania Chapter LDA (PA)
Rhode Island Chapter LDA (RI)
Greenville Lyme Advocacy Group (SC)
Texas Lyme Disease Association, Inc. (TX) 
Lyme Disease Support Group of Southwestern VT (VT)
Military Lyme Support (national)

Lyme Groups & Non-profit LDA Friends:
International Lyme & Associated Diseases Society, Inc. (ILADS) professional medical society (international)
Lyme Rights (national)
LymeTopics (national) 
Albany Lyme (CA)
Mid-Peninsula LDSG (CA)
Partners in Lyme (CA)
Southern California Lyme Support (CA)
The National Lyme Disease Memorial Park Project (CA) 
Wolcott Lyme Disease Network (CT)
Delaware Lyme Support (DE)
Southern Delaware Support Group (DE)
Lanford Foundation – Lifelyme, Inc., The  (FL)
Lyme Disease Education & SG of Florida (FL)
Lymnet (FL)
Eye on Lyme Network (GA)
Georgia Lyme Assoc (GA)
Iowa Lyme Disease Association (IA)
Lyme Disease Network (IL)
Lyme Wellness Center of Kansas (KS)
LA Lyme Disease Association (LA)
Mid-Shore Lyme Disease Association, Inc. (MA)
South Shore Lyme Support (MA)
After The Bite (MD)
Central Maryland Lyme Disease Support Group (MD)
Lyme Disease Education & SG of Maryland (MD)

 

Tri County Lyme Support Group (MD)
Maine Lyme Disease Support Groups (ME)

RelivCarolyn@gmail.com
(ME, International)
St. Louis Lyme Foundation (MO,IL)
Missouri Lyme/Masters Disease Support Group (MO)
North Carolina Lyme Disease, The (NC)
Minot Lyme Disease SG (ND)
Know Lyme in New Hampshire (NH)
Lakes Region Lyme Support (NH)
New Hampshire Lyme (NH)
New Mexico Lyme Support (NM)
Lyme In Orange (NY)
Nevada Lyme (NV) Empire State LDA, Inc. (NY)
Mid Hudson Valley Lyme Disease Support Group (NY)
Lyme in Orange (NY)
Northern Dutchess Lyme Disease Support Group (NY)
NYLyme (NY)
Turn the Corner Foundation (NY – tri state area)
Westchester Lyme Disease Support Group (NY)
NY PENN Lyme disease Support (NY, PA) 
OregonLyme.NET (OR)
North Eastern PA Lyme Support Group (PA)
Lyme Disease Network of Middle Tennessee (TN)
Austin Lyme Support Group (TX)
NW Houston Lyme Support Group (TX)
Public Health Alert (TX)
Stand Up For Lyme (TX)
Gear Up for Lyme (VT)
Partners in Lyme (VT)
Vermont Lyme Information Resource (VT)
SEWILL (WI, IL, MN & IA)
Western Wisconsin Lyme Action Group (WI)
Lyme Disease Education & Support Group of America (national)

Others:
Central Florida Research, Inc (international)
NutritionAtHome.com (international)
Lynn McCabe Photography (national)
Innovative technology group (South East USA)
IGeneX, Inc. (CA)
Just Health/CA Consumer Health Care Council (CA)
Laborfair Inc. (CA)
High Point International, Inc. (CO)
Bills Country Garage, Inc. (CT)
Family Connections Center for Counseling (CT & NY)
Palumbos Good Year Car Care (DC)
Karstedt International, Inc. (FL)
Supernets, Inc. (FL)
Today Solutions Now (IL)
Alkalol Company, The (MA, nationwide)
Ivy Associates, Inc. (MA)
Parts Alternatives (MA)
Westporter Plantation & Cookery, Inc., The (MA)
Centreville Shipping & Services (MD)
Dance Connection, The (ME)
Delfino Financial Services, CPA, PA (ME)
Mainely Ticks (ME)
Lucky Finds Antiques, Collectibles & Quality Used Furniture (ME & NH)
Lyme Alert (ME)
Independent Consultant to the Pampered Chef (ME)
Oakwood Payroll Services, LLC (ME)
STOZ,LLC (ME)
Weight Room Fitness (ME)
Chandler Financial, Inc. (NC)
Grass Roots Landcare (NH)
Icarus Furniture (NY)
New Morgellons Order, The (TX) 

 


Federal Legislation: $100 Million for Lyme and Tick Borne Disease Research & Education
National Lyme Disease Association & Numerous Groups & Notables Nationwide Announce Support for Bill

Jackson, NJ ─ The national non-profit Lyme Disease Association announces its support of federal legislation, “The Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2007”. On January 31, 2007 , Congressman Christopher Smith (R-NJ) introduced H.R. 741, known as the Smith/Stupak (D-MI) bill, into the US House. Senator Christopher Dodd (D-CT) introduced the senate version, S 1708, on June 27, 2007 , on behalf of himself and Senators Schumer (D-NY) and Hagel (R-NE). Currently, there are over 124 co-sponsors combined with congressional representation from 28 states, reflecting the fact that tick-borne diseases are a national problem.

The legislation authorizes an additional $100 million for Lyme and tick-borne disease research, education and prevention over five years and provides goals which address the issues surrounding tick borne diseases. About 230 thousand Americans develop Lyme each year, making it the most prevalent vector-borne disease in the US today. According to the Centers for Disease Control & Prevention (CDC), only 10% of cases that meet its criteria are reported.

The bills provide a much needed and higher level of resources dedicated to Lyme and tick-borne disease and also contain numerous measures to ensure that resources are expended effectively to provide the most benefit to people with tick-borne disease. The bills direct the U.S. Secretary of Health and Human Services to include over a 5 year period development of a sensitive and accurate Lyme diagnostic test; improved surveillance and prevention; and clinical outcomes research to determine long-term course of illness and effectiveness of different treatments. It establishes a Tick-Borne Diseases Advisory Committee to ensure interagency coordination and communication among federal agencies, medical professionals, and patients/patient advocates.

“These bills are an outstanding piece of legislation that addresses chronic Lyme and tick-borne disease, an area often neglected by government and physicians alike,” stated LDA President Pat Smith . “Now we have a comprehensive set of goals designed to help patients receive early diagnosis and appropriate treatment and to help in the development of education and prevention programs. As a result of the introduction of this legislation, we are one step closer to realizing a federal law for Lyme and tick-borne disease, and we thank Representative Smith and Senator Dodd for their commitment to making this happen. Patients should contact their Congress members to co-sponsor this bill, H.R. 741/ S. 1708.” 

Organizations, businesses and celebrities nationwide have signed on to a letter to support this legislation, with 118 currently on board.  Internationally acclaimed author Amy Tan, Joy Luck Club, Jordan Fisher Smith, and Meg Cabot, part of LDA’s Literati with Lyme team (see www.Lymeliterati.org) support the bill, as does author Rebecca Wells. All these authors have had Lyme disease, and Tan and Fisher Smith have discussed their personal experiences in their books. “As yet another patient with Lyme disease, I personally look to this bill as my hope for the future” Ms. Tan states. “For the rest of this country, this bill represents the first reality-based plan for dealing with an epidemic that must be stopped. It is a devastating disease–one that is widely misunderstood, even within the medical community. Lyme is not simply temporary arthritis. Lyme can quickly become a brain disease with lifetime consequences. The Lyme bacterium is a more clever bacterium than previously thought. It can transform itself.”

Ms. Tan also questions why the disease is spreading so quickly in nearly every state and so many of its victims go undiagnosed, and why treatment fails in a proportion of late-stage patients. “If the disease goes unchecked, we will soon face a costly medical crisis nationwide,” Tan said. “Research is our war plan against Lyme disease. It is the only way we will be able to detect, combat, and destroy a bacterium that has spread to nearly every state in the union.”

The International Lyme & Associated Diseases Society (ILADS), a professional medical society, also endorses this legislation. The Society consists of treating physicians and other health care providers for chronic Lyme disease (see www.ILADS.org). ILADS is particularly concerned about the vast number of doctor-diagnosed cases which do not fit the CDC surveillance criteria and are never able to be reported, thus leading to an inaccurate picture of actual case numbers and distribution. These bills ask for reform of the diagnosis and reporting system.

LDA urges people to contact their US Congress members to co-sponsor H.R. 741 (Smith/Stupak) and S 1708 (Dodd/Schumer/Hagel). For link to bill text and more information and to locate contact information for your congress members, please visit the LDA website www.lymediseaseassociation.org and click Government on top menu. 

 




Federal Lyme Legislation Gaining Momentum in the Northeast

National Contact: Pat Smith 888-366-6611 
Lymeliter@aol.com
Lyme Disease Association, Inc.
www.lymediseaseassociation.org

For Immediate Release

Federal Lyme Legislation Gaining Momentum in the Northeast

Jackson, NJ June 11, 2006─The Lyme Disease Prevention, Education and Research Act of 2005, HR-3427 (Chris Smith/Sue Kelly), introduced in the U.S. House, has had a huge increase in co-sponsors this spring. RI congressmen demonstrated 100% support of this bill by early February 2006. Other Congressmen have followed. Every member of congress in Connecticut is now committed to sign on as a co-sponsor. Currently, New York has 28 of 29 representatives cosponsoring, PA has 53%, and NJ has 50%. The legislation will authorize an additional $20 million annually for Lyme disease research, education and prevention over five years. Improved surveillance and prevention, development of accurate diagnostic tests, research to understand long-term illness, and formation of a Tick-Borne Advisory Committee are in the bill.


U.S. Senate companion bill, S-1479 (Christopher Dodd/Rick Santorum), now has 100% committed support from the senators in Connecticut, Rhode Island, New York, and New Jersey and Senator Rick Santorum from Pennsylvania. Lyme cases are on the rise nationwide, and the legislators understand the need for more research to stop the spread of tick-borne diseases (TBD) and to develop a definitive test to help clinicians diagnose Lyme disease.

Lyme disease is only a portion of the problem. The diagnostic and treatment picture is clouded by the spread of other tick-borne diseases carried by the same tick that carries Lyme disease. Additionally, other ticks, including the lone star tick, are on the move, spreading throughout the Northeast, carrying a Lyme-like disease called STARI, southern tick-associated rash illness, and a number of other tick-borne diseases which can be acquired by one tick bite.

Our children are at the highest risk for tick-borne diseases due to their play habits and unawareness of a disease lurking in their backyards. Unfortunately, they are often some of the hardest hit, losing years of school. A recent study from Columbia University demonstrated a 22 point drop in IQ for a child with Lyme, reversible with treatment. 

The Lyme Disease Association (LDA) is a national organization whose goals are Lyme disease education, prevention, raising research dollars, and patient support. We applaud CT, RI, NY, NJ, PA, and all federal legislators from other states for their commitment to these bills. We urge everyone to check http://thomas.loc.gov/home/c109query.html to see if his/her congressmen have signed on yet. If they have not, call, fax, email them today and ask them to co-sponsor these bills.




Middlesex School Nurses Meet With Lyme Disease Association to Learn About Lyme Disease

Middlesex School Nurses Meet With Lyme Disease Association to Learn About Lyme Disease

WHAT: Nurses from private schools belonging to the Middlesex Regional Educational Services Commission will meet with Pat Smith, president of the Lyme Disease Association. The informational session will aim to provide local school health professionals with steps to help ensure students with Lyme disease receive an appropriate education.


WHERE: Monday, December 19, 2005, 2:30 PM
Middlesex Regional Educational Services Commission
1660 Stelton Road
Piscataway, NJ 08854
(732) 777-9848

WHY: About 220,000 – 240,000 cases of Lyme disease are estimated to occur each year. New Jersey is third in the nation in reported cases of Lyme disease and high in cases of babesiosis, another tick-borne disease which can be acquired with the bite of the same tick. School age children are at great risk of acquiring Lyme and other tick-borne diseases.

Lyme disease, the most common vector-borne disease in the United States, is contracted by the bite from a bacteria-infected tick.
A vector-borne disease is one primarily transmitted to humans by ticks or mosquitoes.

In humans, infection with Lyme disease bacteria can lead to problems related to the nervous system, heart, joints as well as the brain. Symptoms of Lyme disease vary for each individual patient, but may include fever, chills, headache, backaches, fatigue, and a bull’s eye rash. Later manifestations can cause cognitive impairment, affecting the educations of thousands of children, who often miss months or years of school due to Lyme disease.

WHO: Interviews available with:
Pat Smith, President, Lyme Disease Association

CONTACT: To set up an interview or for more information, contact:

Julie Halzel,
MS&L
617-437-7722
julie.halzel@mslpr.com




STAFF FROM ROCKLAND COUNTY SCHOOLS PARTICIPATE IN PROGRAM TO LEARN BETTER LYME DISEASE MANAGEMENT

***MEDIA ALERT***MEDIA ALERT***MEDIA ALERT***

STAFF FROM ROCKLAND COUNTY SCHOOLS PARTICIPATE IN PROGRAM TO LEARN BETTER LYME DISEASE MANAGEMENT

WHAT: Staff from eight Rockland County school districts, including Clarkstown, E. Ramapo, Pearl River, Haverstraw, Nanuet, Nyack, Ramapo Central, and S. Orangetown, will participate in “The ABC’s of Lyme Disease: It’s Impact on Children and Families,” an educational seminar aimed to instruct local educators how to better manage Lyme disease in their schools.


The “ABC’s of Lyme Disease: It’s Impact on Children and Families” will be co-hosted by the Lyme Disease Association (LDA) and the Rockland Board of Cooperative Educational Services (BOCES) and will feature speakers from the medical, education, and patient advocacy communities.

WHERE: Tuesday, November 8, 2005, 9:00 AM – 11:30 AM
BOCES Educational Resource Center
131 North Midland Avenue
Nyack, NY 10960
(845) 348-3500

WHY: About 220,000 – 240,000 cases of Lyme disease are estimated to occur each year. This number includes many school age children who are at great risk of acquiring the disease.

Lyme disease, the most common vector-borne disease in the United States, is contracted by the bite from a bacteria-infected tick.

A vector-borne disease is one primarily transmitted to humans by ticks or mosquitoes. In humans, infection with Lyme disease bacteria can lead to problems related to the nervous system, heart, joints as well as the brain. Symptoms of Lyme disease vary for each individual patient, but may include fever, chills, headache, backaches, fatigue, and a bull’s eye rash. Later manifestations can cause cognitive impairment, affecting the educations of thousands of children, who often miss months or years of school due to Lyme disease,

WHO: Interviews available with:
Dr. Brian Fallon, associate professor of Clinical Psychiatry, Columbia University

Pat Smith, president, Lyme Disease Association

CONTACT: To set up an interview or for more information, contact:
Kathleen Gibney, MS&L, 617-437-7722, kathleen.gibney@mslpr.com




National Institutes of Health Study on Lyme Disease Reveals Significant Chronic Symptoms and Common Misdiagnosis

National Institutes of Health Study on Lyme Disease Reveals Significant Chronic Symptoms and Common Misdiagnosis


MEDIA CONTACTS:
Sandy Dawkins, 617-937-2571
sandy.dawkins@mslpr.com

Kira Edler, 617-937-2578
kira.edler@mslpr.com

FOR IMMEDIATE RELEASE

National Institutes of Health Study on Lyme Disease Reveals Significant Chronic Symptoms and Common Misdiagnosis

Columbia University and Lyme Disease Association Announce New Data at 6th Annual Lyme Conference in Philadelphia

PHILADELPHIA, PA (October 28, 2005) – Columbia University and the Lyme Disease Association today announced results from a National Institutes of Health (NIH)-funded study, which found that 76 percent of women and 24 percent of men with chronic Lyme disease exhibited specific symptoms, including pain similar to post surgical pain, fatigue comparable to Multiple Sclerosis, and physical disability comparable to congestive heart failure. Results were previewed at the 6th Annual Lyme Conference in Philadelphia, PA.

In addition, the study, titled “Chronic Lyme Disease in Adults,” found that adults, during the course of their Lyme disease, often showed neuropsychiatric symptoms, such as mood problems, which could cause them to be misdiagnosed as having a psychiatric disorder. Delay in diagnosis is common and can contribute to a more entrenched disease, as well as persistent or relapsing symptoms after treatment, such as severe pain, fatigue, and physical disability. On average, people struggle for 1.2 years before they are accurately diagnosed with Lyme disease.

“While much is known about early Lyme disease, very little is known about chronic Lyme disease, despite its rising prevalence and disabling effects,” said lead investigator Brian Fallon, M.D., associate professor of Clinical Psychiatry, Columbia University, and director, Lyme Disease Research Program, New York State Psychiatric Institute. “Continued research of this disease is essential to bring about earlier detection and more effective treatment.”

Another first-time presentation will be data from a placebo controlled clinical trial studying the quality of life and outcomes of treatment. The trial, “Results from Lyme Disease Clinical Trial: Effectiveness of Retreatment on Health-Related Quality of Life,” was conducted by Dr. Daniel Cameron, director, First Medical Associates, Mt. Kisco, New York, looked at the quality of life and the outcomes of treatment. This study showed that the quality of life of patients with recurrent Lyme disease is less than other chronically ill populations, such as patients with chronic heart failure, and that re-treatment with amoxicillin is helpful in treating long-term symptoms of Lyme disease.

“The Lyme Disease Association is pleased to collaborate once again with Columbia University to facilitate insightful discussions regarding the latest research findings about this prevalent infectious disease that significantly affects the lives of so many individuals and their families,” said Pat Smith, president, Lyme Disease Association. “Coupled with the soon-to-be opened Lyme Disease Research Center at Columbia University, this flagship LDA event serves as a national resource, and fosters important continued patient support.”

Other highlights at the conference include:

• “Infection biology of relapsing fever Borrelia: mechanisms of evasion and persistence,” results from a study conducted by Sven Bergstrom, Ph.D., Department of Molecular Biology, Umeå University, Umeå, Sweden. This study for the first time provides insight into how Lyme bacteria can stay in the human body without causing an immune system response. The study revealed that Lyme bacteria can persist in immune privileged sites that can be triggered to be reactivated. Typical symptoms with Lyme disease besides fever, are chills, headache, enlarged spleen and liver, meningitis and often severe involvement of the central nervous system.

• ”Invasion of human tissue ex vivo by Borrelia burgdorferi,” a study conducted by Dr. Joshua Zimmerberg from the NASA/NIH Center for Three Dimensional Tissue Culture, National Institute for Child Health and Human Development, showed that the lack of an adequate in vitro system for human tissue infection by Lyme bacteria, is an obstacle to fully understanding how the Lyme bacteria interact and adapt in the human body.

Sponsored by Columbia University and the Lyme Disease Association, the Lyme Conference is expected to attract more than 250 physicians, health care providers, advocates, and patients. Other speakers at the conference include:
– Martin Fried, M.D., director, Pediatric Gastroenterology & Nutrition, Meridian Health Systems, JSMC, New Jersey: Co-infection with Bartonella & other organisms
– Richard Brown, M.D., associate clinical professor of psychiatry at Columbia University College of Physicians and Surgeons; private consultation practice in integrative psychopharmacology in New York City: Complementary medicine strategies for the relief of Lyme-related symptoms
– Susan E. Little, DVM, Ph.D., professor and Endowed Chair Department of Pathobiology Center for Veterinary Health Sciences, Oklahoma State University: Tick-borne diseases in southern U.S.
– Dr. Klaus-Peter Hunfeld, MPH, Institute of Medical Microbiology, University Hospital of Frankfurt (SPEECH TOPIC NEEDED)

About Lyme Disease
Lyme disease, the most common vector-borne disease in the United States is contracted by the bite from a bacteria-infected tick. A vector-borne disease is transmitted from an infected individual to another individual by ticks or mosquitoes, serving as intermediary hosts. In humans, infection with Lyme disease bacteria can lead to problems related to the nervous system, heart, joints as well as the brain. In humans, infection with Lyme disease bacteria can lead to problems related to the nervous system, heart, joints as well as the brain. Symptoms of Lyme disease vary for each individual patient, but may include fever, chills, headache, backaches, fatigue, and a bull’s eye rash. The Centers of Disease Control and Prevention estimate that more than 220,000 to 240,000 Americans are infected with Lyme disease each year.

About the Lyme Disease Association
The Lyme Disease Association (LDA), an organization which expanded its focus nationally about 5 years ago, is dedicated to Lyme disease education, prevention, and raising research dollars. About ninety-six cents of every dollar raised by the Lyme Disease Association has been used on programs. In its search for a cure for chronic Lyme, the LDA has funded dozens of research projects coast to coast, some of which are featured in peer-reviewed journals, such as Journal of the American Medical Association, JAMA and The Proceedings of the National Academy of Science. Along with an affiliate, Time for Lyme in Connecticut, the Lyme Disease Association is providing the funds to open with Columbia University, an endowed Lyme disease research center at Columbia in XXXX. For more information, please visit https://lymediseaseassociation.org.
 




Senate & House Lyme Bills: $100 Million for Lyme Research & Education

National Contact: Pat Smith 888 366 6611
FOR IMMEDIATE RELEASE

Senate & House Lyme Bills: $100 Million for Lyme Research & Education
National Lyme Disease Association Announces Support for Bills
Nearly 90 Lyme groups supporting measures

Jackson, NJ─ The national non-profit Lyme Disease Association announces its support of two new companion bills introduced in Washington July 25 and 26: Senate bill, S.1479 introduced by Senator Christopher Dodd (CT) for himself and Senator Rick Santorum (PA) and House bill H.R. 3427 introduced by Congressman Christopher Smith (NJ) for himself and Congresswoman Sue Kelly (NY). The “Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2005,” authorizes an additional $100 million for Lyme disease research, education and prevention over five years and provides goals which address the issues surrounding Lyme disease. About 220 thousand Americans develop Lyme each year, making it the most prevalent vector-borne disease in the US today. According to the Centers for Disease Control & Prevention (CDC), only 10% of cases that meet its criteria are reported.


The companion bills provide a much needed and higher level of resources dedicated to Lyme disease. They also contain numerous measures to ensure that resources are expended effectively to provide the most benefit to people with Lyme and other tick-borne diseases (See http://thomas.loc.gov/ for text).

The bills direct the U.S. Secretary of Health and Human Services over a 5 year period to include development of a sensitive and accurate diagnostic test; improved surveillance and prevention; and clinical outcomes research to determine long-term course of illness and effectiveness of different treatments. They establish a Tick-Borne Diseases Advisory Committee to ensure interagency coordination and communication, among federal agencies, medical professionals, and patients/patient advocates.

“These bills are outstanding pieces of legislation that addresses chronic Lyme disease, an area often neglected by government and physicians alike,” stated LDA President Pat Smith. “Now we have the same legislation introduced in both the US Senate and US House of Representatives with a comprehensive set of goals designed to help Lyme patients receive early diagnosis and appropriate treatment and to help in the development of education and prevention programs. As a result of the introduction of the bills, we are one step closer to realizing a federal law for Lyme disease and we thank Senators Dodd and Santorum and Representatives Smith and Kelly for their commitment to making this happen.” She indicated that the next step is to have patients contact their senators and representatives to co-sponsor these bills.

Nearly 90 organizations nationwide including all LDA chapters and affiliates have signed on to a letter to support the bills. Internationally acclaimed author Amy Tan, Joy Luck Club, author Jordan Fisher Smith, and E. Jean Carroll, part of LDA’s Literati with Lyme team (see www.Lyme literati.org) support the bills. All three authors have Lyme disease, and Tan and Fisher Smith have discussed their personal experiences in their books. “As yet another patient with Lyme disease, I personally look to these bills as my hope for the future” Ms. Tan states. “For the rest of this country, this bill represents the first reality-based plan for dealing with an epidemic that must be stopped. It is a devastating disease–one that is widely misunderstood, even within the medical community. Lyme is not simply temporary arthritis. Lyme can quickly become a brain disease with lifetime consequences. The Lyme bacterium is a more clever bacterium than previously thought. It can transform itself.”

Ms Tan also questions why the disease is spreading so quickly in nearly every state and so many of its victims go undiagnosed, and why treatment fails in a proportion of late-stage patients. “If the disease goes unchecked, will we soon face a costly medical crisis nationwide,” Tan said. “Research is our war plan against Lyme disease. It is the only way we will be able to detect, combat, and destroy a bacterium that has spread to nearly every state in the union.”

The International Lyme & Associated Diseases Society (ILADS), a professional medical society, also endorses the bills. The Society consists of treating physicians and other health care providers for chronic Lyme disease (see www.ILADS.org). ILADS is particularly concerned about the vast number of doctor-diagnosed cases which do not fit the CDC surveillance criteria and are never able to be reported, thus leading to an inaccurate picture of actual case numbers and distribution. These bills ask for reform of the diagnosis and reporting system.

LDA urges people to contact their U.S. Senators to co-sponsor S.1479 (Dodd/Santorum) and their US Congressmen to co-sponsor H.R. 3427 (Smith/Kelly). Please visit the LDA website for more information www.LymeDiseaseAssociation.org. See http://thomas.loc.gov/ for bill text and http://www.visi.com/juan/congress/ to locate contact information for your congressmen and senators.

List of Bill Supporters to Date 8/15/05

 

Lyme Disease Association, Inc.

LDA Chapters, Affiliates, Programs:  LDA Blue Ridge Chapter (VA)
LDA Cape Cod Chapter (MA)
LDA Delaware Chapter (DE)
LDA Pennsylvania Chapter (PA)
LDA Rhode Island Chapter (RI) 
New York Lyme Support Program (NY)
California Lyme Disease Association, Inc. (CA)
Time for Lyme, Inc. (CT)
Lyme Disease Network of New Jersey, Inc.  (NJ)
Lyme Association of Greater Kansas City, Inc.(KS, MO)
Oregon Lyme Disease Network, Inc. (OR)
Lyme Disease Assoc. Southeastern PA, Inc. (PA)
Texas Lyme Disease Association, Inc. (TX) 

Support & Non-profit LDA Friends:
Lyme Disease SG of Alabama, Mobile (AL)
Fairfield Bay Support (AR)
Arizona Lyme Disease Association (AZ)
Sacramento Lyme Support Group (CA)
Sonoma County Lyme Support (CA)
SDA Lyme Support Group (CA)
South Orange Co. Lyme Support Group (CA)
Trinity County Lyme Disease Network (CA)
Danville/East Bay Lyme Support Group (CA)
Mid-Peninsula LDSG (CA)
San Diego County (CA)
Marin County Lyme Disease Support Group (CA)
San Francisco Lyme Disease Support (CA)
Easton Connecticut Lyme Support (CT)
Newtown Lyme Disease Task Force (CT)
Greater Danbury LD Support Group (CT)
Colorado Support Group (CO)
American Lyme Association (DE, CA)
Florida Lyme Advocacy (FL)
Florida Lyme Disease Network (FL)
LifeLyme (FL)
Georgia Lyme Assoc (GA)
Lyme Disease Assn. of the State of Iowa, Inc. (IA)
Idaho Lyme Support Group (ID)
Mississippi Valley Lyme Disease Network (IL)
Sewill Lyme Leagues (WI, IL)
Lyme Support Group of Kansas (KS)
Massachusetts Lyme Disease Coalition (MA)
Cape Cod Lyme Disease Awareness Assn. (MA)
Maine Lyme Disease Support Group (ME)
Lyme Disease Assn. Southeastern Maryland (MD)
Midshore Lyme Disease Association, Inc. (MD)
Mid-Missouri Tick Illness Coalition (MO)
Missouri Lyme/Masters Disease Group (MO)
Green Hills Lyme Disease Support Group (MO)

Minnesota Insect Borne Disease Education Council, Inc. (MN) 
LymeNet North Metro Support Group (MN)
Lyme Disease Coalition of Minnesota (MN)
Lyme Disease Support Group of Mississippi (MS) 
Montana Lyme (MT)
The North Carolina Lyme Disease Foundation (NC)
Minot Lyme Disease Support Group (ND)
Midwest Alliance for Understanding LD (NE)
New Hampshire Lyme (NH)
Lyme Disease Action Network (NM)
Greater Raritan Lyme Support (NJ)
Lehigh Lyme League (NJ)
Long Valley Lyme Disease Support Group (NJ)
North Jersey Lyme Support (NJ)
Turn the Corner Foundation, Inc. (NY)
Hudson Valley Lyme Disease Association (NY)
Mid Westchester Lyme (NY)
Westchester Lyme Disease Support Group (NY)
Mid Hudson Lyme Disease Support (NY)
Northern Dutchess Lyme Disease Support Group (NY)
Hyde Park Lyme Disease Support Group (NY)
Voices of Lyme/NY Lyme (NY)
Oklahoma Lyme Disease Support Group (OK)
Lyme Disease Association of Ohio (OH)
Hood River Support Group (OR)
NY PENN Lyme disease Support (NY, PA)
The James Loughran Foundation, Inc. (PA)
Elk County Lyme Support Group  (PA)
Susquehanna Lyme Disease Association ( PA)
5 County Central PA Support Group (PA)
NE PA Lyme Support Group (PA)
Mid-South Lyme Disease Support Group (TN)
Mountain West Lyme Disease Support (UT)
Gear Up for Lyme (VT)
Partners in Lyme (VT)
Vermont Lyme Support (VT)
Minnesota/Wisconsin Duluth/Superior LSG (MN, WI)
Washington LD Support & Information Group (WA)
Nevada, Arizona & Utah Network Grp. (NV, AZ, UT)
US Military Lyme Support (nationwide)

Professional Groups
International Lyme & Associated Diseases Society, Inc. (ILADS) a professional medical society

Others
Author Amy Tan (Joy Luck Club)
Jordan Fisher Smith (Nature Noir)
E. Jean Carroll (author, columnist & TV writer for Sat. Night Live)
Brooke Landau – E! Entertainment, ESPN




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). Literati Photo Album
Link: Literati With Lyme Website (Because this event has passed, certain links will be unreachable.)

 

 

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.