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2008 Insights Into the Crisis, Key Players and the Future:

Note: Videos can be opened with Windows Media Player. Due to the age of the files, we are not sure that RealPlayer can still open the videos.

NEW VIDEO AVAILABLE!
Footage from the Bergen Community College Event Held Thursday, May 29, 2008

View the videos and read about the event and speakers in the program.

Program: Lyme Disease Forum
Click
here to access the printable program from this event.

Part 1: Lyme Disease Forum – Opening Remarks & Personal Insights
From Pat Smith, President, Lyme Disease Assoc., Moderator, and Pamela Weintraub, Author of “CURE UNKNOWN: Inside the Lyme Epidemic.” © 2008 Lyme Disease Association, Inc.
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RealPlayer or Windows Media Player

Part 2: Lyme Disease Forum – Discussion
Joseph J. Burrascano, Jr., MD & Attoney Elliott B. Pollack. © 2008 Lyme Disease Association, Inc.
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RealPlayer or Windows Media Player.

Part 3: Lyme Disease Forum – Interactive Panel Presentation
© 2008 Lyme Disease Association, Inc.
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RealPlayer or Windows Media Player

Part 4: Lyme Disease Forum – Questions & Answers with Audience
© 2008 Lyme Disease Association, Inc.
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RealPlayer or Windows Media Player.




Order 1 to 200 LDA Brochures

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Petition

We, the undersigned, are gravely concerned by the new Infectious Disease Society’s (IDSA) guidelines on Lyme disease. These guidelines call for absolute reliance upon either the presentation of an Erythema migrans rash or positive serologic blood tests to diagnose Lyme disease and recommend severely limited courses of antibiotic treatment when either a rash or a positive test are present. They take the place of a longstanding policy of deference to the clinical discretion of the treating physician in both diagnosing and treating the disease. We find it most troubling that the new IDSA guidelines fail to explain the scientific justifications for their absolute reliance upon the rash and current blood testing to diagnose the disease in light of the numerous studies and medical opinions concluding that the rash is either not discovered by or present in many infected persons and that the serologic testing methods recommended by the IDSA are inherently unreliable because they do not even remotely approach a dispositive level of accuracy. Widespread adoption of these guidelines by practitioners, insurers, and government entities will, therefore, cause real and egregious harm to many patients by inhibiting physicians who otherwise would be free to clinically diagnose and treat this disease.  
 
These guidelines fail to meaningfully address the needs of patients with chronic Lyme disease, who are now relegated to the pile of diseases with unknown etiology, like CFS and FMS, and who are provided with only symptomatic relief, while the underlying infectious disease is allow to progress unabated.  Studies have shown that patients with chronic Lyme disease suffer a degree of debility equal to that of patients with congestive heart failure.  Failure to address the underlying infectious disease etiology keeps these patients sick, which is inhumane and immoral.  There are no chronic Lyme disease patient studies supporting symptomatic therapies, which presumably would be necessary for life at considerable cost to insurers and society.  Moreover, the IDSA rejected out-of-hand the requests by patients and their treating physicians to participate in the guideline development process.  No medical society should be able to dictate patient healthcare through exclusionary guidelines that ignore considerable scientific evidence and fail to meet the basic goal of medicine─to improve the quality of life of the patient.
 
Currently we have over 45,000 signatures.

 




Dr. Referral Website Issues

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    Please consult our Dr. Referral service to find a Lyme literate health care professional near you.





Historic Lyme Bill, HR 220, Reintroduced in New Congress by Rep. Chris Smith

Smith HeadRep. Chris SmithRep. Chris Smith (R-NJ), founder and co-chair of the Congressional Lyme Disease Caucus, reintroduced legislation on January 3rd, the first legislative day of the 116th Congress, to create a new national strategy on Lyme disease and other tick-borne diseases and have a better coordinated federal response across agencies to fight, treat and prevent tick-borne disease. The bill number is HR 220, and Minnesota Congressman Collin Peterson is the lead Democratic co-sponsor of the legislation.

Regarding the legislation, LDA President, also an HHS Tick-Borne Disease Working Group member, Pat Smith, said: “Everyone deserves protection against Lyme disease, yet Lyme has marched forward unchallenged across the US for decades, disabling many including our most precious resources, our children, who are a high risk group. CDC announced in its Vital Signs monthly report that tick-borne disease case numbers have doubled between 2004-2016, and the US is not prepared to deal with this threat—a fact substantiated by the 2017 record number of CDC-reported Lyme cases, 42,743. Factoring in under-reporting, 427,430 new Lyme cases occurred in the US alone in 2017, a staggering number, which does not include other tick-borne diseases (TBD) and disorders facing Americans.

Tick vectors of disease continue to proliferate unchecked, and the recent emergence over last year of a new self-cloning tick in the US that can lay up to 2,000 eggs, longicornis—that has already spread to nine states—should signal that we have a new enemy, yet we still have no idea what damage this one can do. Everyone is a potential casualty. This bill provides a plan for a national strategy under HHS to help, through research, patients already debilitated by Lyme/TBD—fighting for diagnosis, treatment and for their very lives—and to help prevent others from facing the same fate by developing methods of tick control. The time for Congress to act on this bill is now! Losing this war is not an option, everyone is a potential casualty.”

The bill comes shortly after the HHS Tick-Borne Disease Working Group released its first annual report to Congress which states, “[t]ick-borne diseases have rapidly become a serious and growing threat to public health in the United States…. Studies indicate that Lyme disease costs approximately $1.3 billion each year in direct medical costs alone in the United States. A comprehensive understanding of the full economic and societal cost remains unknown…. Prompt diagnosis and treatment of tick-borne diseases are crucial to prevent long-term complications. Today, available diagnostic tests can be inaccurate and complex to interpret, especially during the earliest stage of infection when treatment is most effective.…This leaves physicians without the tools needed to diagnose; and without an accurate diagnosis, it is challenging for physicians to provide early treatment… Persistent symptoms after treatment of Lyme disease can be severe, yet their cause(s) remains unknown and debated. There are currently no uniformly accepted or validated treatment options for patients with these chronic symptoms…. Increased Federal funding, prioritization, and leadership are needed to reverse the alarming trends associated with tick-borne diseases.”

The Lyme Disease Association, Inc. supports the bill and will be posting updates on actions that can be taken to help support the passage of this ground breaking legislation.

Congressman Smith Press release

To read about the original introduction of the last House Session of this bill in 2018, Click Here.

Click here for HR 220 Bill Text

 

 




2018 LDA/Columbia Conference Agenda

Lyme & Tick-Borne Diseases: Turning the Corner Through Research

Saturday Agenda   Sunday Agenda   Registration

AGENDA – SATURDAY OCTOBER 27, 2018

7:15 – 8:00 AM Registration / Exhibits / Continental Breakfast
8:00 – 8:20 AM Patricia V. Smith, President, BA
President, Lyme Disease Association, Inc., Jackson, NJ
Conference Planner, Conference Organizing Committee

Welcome, Remarks / Brief Overview of LDA, Lyme & TBD

Introduction of:
Brian A. Fallon, MD, MPH, Course Director, Conference Planning Committee;
Morning Facilitator

8:20 – 9:00 AM Robert K. Naviaux, MD, PhD
Keynote

Professor of Medicine, Pediatrics, Pathology, and Genetics
University of California, San Diego School of Medicine
San Diego, CA

Metabolomic Features of Chronic Illness—Lessons from Gulf War Illness and Chronic Fatigue Syndrome

9:00 – 9:35 AM Claudia R. Molins, PhD
Microbiologist
Division of Vector-Borne Diseases
Bacterial Diseases Branch
Centers for Disease Control and Prevention
Fort Collins, CO

Use of Metabolic Profiles as Diagnostic and Prognostic Biomarkers of Lyme Disease

9:35 – 10:10 AM John Aucott, MD
Associate Professor of Medicine, JHU School of Medicine;
Director, Johns Hopkins Rheumatology Lyme Disease Clinical Research Center
Baltimore, MD

Updates on Research in Lyme Disease

10:10 – 10:25 AM Morning Discussion Panel
10:25 – 10:40 AM Coffee Break
10:40 – 11:15 AM Rafal Tokarz, PhD
Associate Research Scientist
Center for Infection and Immunity
Mailman School of Public Health, Columbia University
New York, NY

Novel Approaches to Serologic Diagnosis of TBD

11:15 – 11:50 AM Neil Lee Spector, MD
Associate Professor of Medicine
Sandra Coates Associate Professor
Associate Professor of Pharmacology & Cancer Biology
Member of the Duke Cancer Institute
Durham, NC

Applying the Lessons From Cancer Research to the Diagnosis and Treatment of TBD

11:50 – 12:25 PM William Robinson, MD, PhD
Professor of Medicine (Immunology and Rheumatology)
Staff Physician, VA Palo Alto
Stanford University
Palo Alto, CA

Protective and Pathogenic B Cell Responses in Lyme Disease

12:25 – 12:40 PM Late Morning Discussion Panel
12:40 – 1:45 PM Lunch
  Elizabeth Maloney,  MD  Conference Planning Committee
Afternoon Facilitator
1:45 – 2:20 PM Jon T. Skare, PhD
Professor and Associate Head
Dept. of Microbial Pathogenesis and Immunology
Texas A&M University
Bryan, TX

Pathogenesis-related features of Borrelia burgdorferi

2:20 – 2:55 PM  Utpal Pal, PhD
Professor & Director, VMSC Graduate Program
Veterinary Medicine
University of Maryland
College Park, MD

Immune Evasion of Lyme Disease Agents

2:55 – 3:30 PM Thomas A. Platts-Mills, PhD, FRS
Professor of Medicine and Microbiology
Chief, Division of Asthma, Allergy & Immunology
University of Virginia School of Medicine
Charlottesville, VA

Sensitization to Alpha-gal as a Consequence of Lone Star Tick Bites

3:30 – 3:45 PM Midafternoon Discussion Panel
3:45 – 4:00 PM Afternoon Coffee Break
4:00 – 4:35 PM James L. Occi, PhD (candidate)
Research Teaching Specialist RNJMS
Center for Vector Biology, Department of Entomology Rutgers University
Newark, NJ

The Discovery of the “Asian long-horned tick”, Haemaphysalis longicornis, in New Jersey: A Combination of Perseverance, Luck and the Joy of Tick Collecting”

4:35 – 5:10 PM Joanna Buchthal, PhD (candidate)
Project Manager, Mice Against Ticks
MIT Media Lab
Massachusetts Institute of Technology
Cambridge, MA

Mice Against Ticks: Community-Guided Research for Public Health

5:10 – 5:45 PM Beatrice M. Szantyr, MD, FAAP
Internal Medicine
Pediatrics and Adolescent Medicine
Lincoln, ME

Lyme Disease – An Ounce of Prevention: Survey of the Evidence for Prevention Strategies in Lyme Disease

5:45 – 6:00 PM Late Afternoon Discussion
6:15 – 8:15 PM NETWORKING RECEPTION

 

AGENDA – SUNDAY OCTOBER 28, 2018  (Breakfast on your own)

7:30 – 8:00 AM Registration / Exhibits / BREAKFAST ON YOUR OWN
  Bea Szantyr, MD
Sunday Facilitator
8:00 – 8:35 AM Kim Lewis, PhD
University Distinguished Professor
Director, Antimicrobial Discovery Center
Northeastern University
Boston, MA

Developing Therapies for Treating Lyme Disease

8:35 – 9:10 AM Choukri Ben Mamoun, PhD
Associate Professor
Department of Internal Medicine & Department of Microbial Pathogenesis
Section of Infectious Diseases
Yale School of Medicine
New Haven, CT

Targeting the Achilles Heel of Babesia Parasites’ Mode of Survival Within Human Red Blood Cells

9:10 – 9:45 AM Anne Louise Oaklander, MD, PhD
Associate Professor of Neurology
Harvard Medical School
Assistant in Neurology and Neuropathology at Massachusetts General Hospital
Director of Massachusetts General Hospital’s Nerve Unit Group.
Boston, MA

Small-Fiber Peripheral Neuropathy: A Pathway for Some Patients

9:45 – 10:20 AM Monika Gulia-Nuss, PhD
Assistant Professor, Howard Medical Sciences
Department of Biochemistry and molecular Biology
University of Nevada
Reno, NV

Generating Transgenic Ticks for Ticks and Tick-borne Diseases Management

10:20 – 10:55 AM Food Break
10:55 – 11:15 AM Morning Discussion Panel
11:15 – 11:50 PM Jaroslav Flegr, PhD
Professor of Ecology and Associate Professor of Parasitology
National Institute of Mental Health
Klecany, Czechia
Faculty of Science, Charles University
Prague, Czechia

The Effect of Pet-Transmitted Diseases on the Mental and Physical Health of the General Population

11:50 – 12:25 PM Shannon Delaney, MD, MA
Instructor in Psychiatry
Director, Child and Adolescent Research and Evaluation
at the Lyme & Tick-Borne Diseases Research Center
Columbia University Medical Center
New York, NY

Borrelia Miyamotoi Exposure in a Clinical Population

12:25 – 1:00 PM Kavin Patel, MD
Internal Medicine
Rhode Island Hospital and Alpert Medical School of Brown University
Providence, RI

Rebecca Reece, MD
Assistant Professor of Medicine (Clinical)
Warren Alpert Medical School of Brown University
Providence, RI

First Confirmed Case of Powassan Neuroinvasive Disease in Rhode Island

1:00 – 1:10 PM BREAK
1:10 – 1:25 PM Mid-Morning Discussion
1:25 – 2:00 PM Elizabeth L. Maloney, MD
(Conference Planning Committee)
President, Partnership for Tick-Borne Diseases
Family Practice Physician
Wyoming, MN

Concurrent Tick-borne Illnesses: A Case Report and Review of the Literature

2:00 – 2:35 PM Brian A. Fallon, MD, MPH (Conference Director)
Professor of Psychiatry,
Director, Lyme and Tick-Borne Diseases Research Center,
Director, Center for the Study of Neuroinflammatory Disorders & Biobehavioral Medicine,
Columbia University
Conference Planning Committee
New York, NY

Borrelia and the Brain Phase 1 of a Post-Mortem Study

2:35 – 3:00 PM Afternoon Discussion Panel



Alberg, Doreen & Blank, Denise

Doreen Alberg & Denise Blank
Poster Presentation
Improved Diagnostics for Lyme Borreliosis Using a New Stripe Immunoblot Test System
Sharon Hospital Laboratory
Sharon, CT

 

2017 Poster Presentation

Improved Diagnostics for Lyme Borreliosis Using a New Stripe Immunoblot Test System 

Introduction: Lyme Borreliosis, caused by the spirochete Borrelia burgdorferi, is the most commonly reported vector-borne infection in the United States. In the United States, the CDC prescribes a two-tier testing algorithm for determining if a patient is infected1. The primary step is a highly sensitive screen assay, using either an IFA (Indirect fluorescence assay) or an ELISA/EIA derived from Borrelia lysate or highly immunogenic C6 peptide. Patient samples that are positive or equivocal on screen assay are further confirmed using a highly specific immunoblot assay. Traditionally this was performed using western blots (WB) derivedfrom B. burgdorferi lysate. Although this is a highly sensitive and effective test system, the interpretation of results is complicated by immunoreaction of samples to non-specific portions of the B. burgdorferi proteome and variation in the CDC characterized immunogenic band locations. Line immunoblot technology, in which highly purified Borrelia antigens expressed using recombinant systems are striped on predefined locations on membranes, has simplified several procedural and interpretation challenges associated with WB 2. Moreover, the line blots are well suited for automated execution and result interpretation of the assays.

Study objective: This study compares the performance of a new line immunoblot assay to that of the traditional WB test used for serological confirmation of Lyme infection and highlights the advantages of the new format for the clinical labs.

Methods: Patient Population: Between 7/20/2016 and 8/29/2016, 274 patient samples testing equivocal or positive on a first-tier screen test (Device ref# VIDAS?) (clinical immunology laboratory at Sharon Hospital (Sharon, CT) were confirmed by MarBlot IgG test system (Trinity Biotech Plc). The same sera were further evaluated on a new LIA test system (B. burgdorferi MarStripe IgG test system, Trinity Biotech Plc).

Results: MarBlot test system provided an overall sensitivity of 47.8% . Overall agreement between the MarBlot (WB) device and the new MarStripe (LIA) was 95.6% (262/274). Positive agreement between the MarBlot (WB) device and the new MarStripe (LIA) was 94.7% (124/131) and negative agreement between the two devices was 96.5% (138/143).

Conclusions:
•Western blot is the gold standard confirmatory device for Lyme borreliosisby feature of presenting the complete B. burgdorferi proteome.
•The MarStripe IgG test preserves the superior diagnostic performance of a western blot, and substantially improves the accuracy and ease of interpreting immunoblot reactions.
•The MarStripe IgG kit uses a next generation reagent set that is upgraded for superior performance and stability.

References:
1. Engstrom, S. M., E. Shoop, and R. C. Johnson. 1995. Immunoblot interpretation criteria for serodiagnosisof early Lyme disease. Journal of clinical microbiology 33: 419-427.
2. Louis A. Magnarelli, S.J.P. ErolFikrigand A. R. A. F. John F. Anderson. 1996. Use of Recombinant Antigens of Borreliaburgdorferiin Serologic Tests for Diagnosis of Lyme Borreliosis. Journal of clinical microbiology: 237–224.

 

 




2018 LDA Conference Exhibitors

Great Plains Laboratory
Doctor’s Data, Inc.
Researched Nutritionals
XYMOGEN
Hopkinton Drug Compounding & Wellness
ArminLabs