Dear ILADS Member,

May is Lyme Disease Awareness Month. As another tick season is upon us, think of something that you could do in your community to increase public awareness and education about Lyme disease. This edition features many ideas from our varied membership. We are currently tracking any news items between issues. Please contact us at any time at contact@ilads.org.

Thank you. Editors: Andrea Gaito, MD, Barbara Buchman, Exec.Director ILADS

 

 

 

PRESIDENT'S MESSAGE

 

 

Greetings Colleagues,

May is National Lyme Awareness Month and groups across the nation will be gathering to educate medical and mental health professionals, educators and politicians to the need for greater awareness, understanding, education and information on Lyme disease. We encourage all our members to participate in Lyme gatherings that will be taking place across the country on May 10th and 11th to bring awareness of this disease to the public.

In other news, the ILADS Program Committee has spent many hours in planning meetings and now has finalized the program for the upcoming San Diego conference which will bring together national and international experts, in both clinical and research fields, to address the newest diagnostic and treatment modalities.

In addition to the preparation for the annual conference, the national staff in Washington and other members of ILADS

 

have diligently prepared a regional conference presented this month in Hershey, Pennsylvania that provided the supportive scientific and clinical information to medical and mental health professionals in the Pennsylvania and the surrounding states. We envision this Co conference to be the first in a series of regional conferences to be given across the country over the next several years to facilitate regional awareness and understanding of the disease.

In keeping with the evolutionary process of our organization, the members of the ILADS Boards met on Saturday April 6th in New York City for a management retreat to evaluate the mission and goals of ILADS. During that retreat, the Board members crafted a vision for the future of the organization including a three-year strategic plan that will enhance the benefits to all ILADS members as well as patients in general.

Leo J. Shea III, Ph.D.
President, ILADS
Neuropsychological Evaluation & Treatment Services, P.C.
212-951-4545
www.leoshea.com

 

 

 

 

 

One Day Basic Sold Out

ILADS partnered with the Pennsylvania Lyme Resource Network on a one day basic Lyme course in Hershey, PA on Saturday April 20th at the Hershey Lodge. The meeting was attended by 120 medical professionals. Having sold out, this reflects the great need for additional medical education courses covering chronic Lyme disease and associated tick borne diseases. ILADS members residing in PA on the faculty included Ann F. Corson, MD of Cochranville, PA; Harold Smith, MD of Bloomsburg, PA; and Rita Rhoads,MPH, CRNP, CMN of Christiana, PA. Dennis Schoen of Researched Nutritionals is hosted a dinner on Friday night preceding the conference. There, Robert Mozayeni, MD gave a stimulating lecture on Bartonella treatment.

 

Major Rally Planned For NYC

A Worldwide Lyme Disease Awareness Protest will be held in New York City on May 10, 2013 in Union Square from 12-4pm. Over 20 countries and 23 US States will participate. The rally is being held to raise awareness regarding the misdiagnosis of Lyme disease, the need for better tests, and the medical-political disadvantages that many Lyme patients face. Several government officials and ILADS members will be speaking.

Please plan on attending this significant event. For further information, please contact Vanessa Holden, at vfholden@vfholden.com.

 

 

 

 

 

VA Congressman Wolf and Lyme Commission to Hold Forum

Congressman Frank Wolf and the Loudoun Lyme Commission are partnering to present a community forum on “Keeping Kids Safe from Lyme”, which will be held on Thursday, May 9, 2013 at Douglass Elementary School in Leesburg from 6-8:30 pm. This is part of the Loudoun Targets Lyme Initiative.

The format of the meeting will include a panel discussion, covering questions about children and Lyme disease. The panel will be moderated by Dr. Samuel Shor, Chair of the Loudoun Lyme Commission. Panel members include physicians, parent advocates, a representative from the Virginia Department of Health and students. There will be children’s activities coinciding with the panel discussion.

Please submit your questions related to children and Lyme disease to lyme@loudoun.gov or at:
www.facebook.com/LoudounTargetsLyme.

The Loudoun Lyme Disease Commission was formed by the Loudoun County Board of Supervisors in 2012, to address community concerns about Lyme Disease. The Board adopted a 10- point plan, with the goal of bringing county staff, citizens and organizations together to address concerns about Lyme Disease in Loudoun County.

 

 

 

 

 

PA Group Excels in Work with Local and State Health Departments

 

 

Only seven of the 67 counties in Pennsylvania have their own health department, and we are fortunate in SE PA that Chester County has one of the best.

The Lyme Disease Association of Southeastern Pennsylvania has worked closely with the Chester County Health Department for over a decade. The long-time director of the health department, John Maher, MD, MPH (now semi-retired) is extremely knowledgeable about tick-borne diseases (his experiences as a military doctor in tropical areas may account for this). Since the 1980s he has educated our physicians about TBDs, including sending a copy of Dr Burrascano's guidelines to every doctor in the county.

For the past few years, the Pennsylvania Lyme Disease Awareness Committee (a collaborative effort between LDASEPA, the Pennsylvania Farm Bureau local chapter, and the Chester County Health Department) have met with

 

health department officials on a monthly basis. We share information, collaborate on research surveys, and help keep the health department aware of the most recent developments in tick-borne diseases.

Invitations to speak in our community arrive frequently to all three organizations, and we sometimes share the stage in making our educational presentations. When a scheduling conflict occurs, we can often ask the health department to provide a program, and vice-versa.

Twice in recent years we have designed surveys of the PA population to learn more about the incidence, experience, and knowledge level of the people in our state. These surveys have been designed as projects by senior MPH students at West Chester University, with input from the PLDAC, and direction by the health department's statistical experts. The results are analyzed using the statistical resources of the CCHD. Our most recent survey was presented as a poster at the 2012 LDA/Columbia Conference.

 

 

 

 

 

ILADS MEMBER NEWS

 

 

 

Seeking Doctor For Maryland office

Announcing an opportunity for an ILADS Physician in a very successful ILADS/Wholistic medical practice. We need an ILADS doctor to fill in for current Physician (ASAP) starting sometime in April 2013, for 8-9/months during his absence. A great opportunity working 3/days a week in Kent Island near the Annapolis, Maryland area for turnkey operation. Please check the ILADS members’ only area or write to lymedocs@aol.com for more information.

 

ILADS President Lecturers at Harvard Medical School

In February 2103, Leo J. Shea III, Ph.D. lectured on Understanding the Neuropsychological Consequences of Lyme Disease at Harvard Medical School Spaulding Rehabilitation Hospital in Cambridge, Massachusetts.

 

 

 

 

 

Dr. Horowitz to Speak Globally

Dr. Richard Horowitz, recently returning from testifying in Vermont regarding Lyme disease at the Vermont Senate and House, will be speaking at the Mohonk Mountain House in New Paltz on May 5 for a 3hour seminar. He will additionally be speaking in the next few months in Florida, Paris, Strasbourg and Arizona. Dr. Horowitz’s new book, “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease” is scheduled for release on September 3.

 

Board Member Appointed to PCORI

Lorraine Johnson, JD, MBA has been appointed to the Patient Engagement Advisory Panel for the Patient Centered Research Outcomes Institute (PCORI). PCORI was established by Congress under health care reform that funded $41 million in research projects to date. The Patient Engagement Advisory Panel will advise PCORI on processes and methods to ensure the highest standards for, and a culture of, patient-centeredness in all aspects of its work. Patients make up 60% of the members of that panel.

 

 

 

 

 

Dr. Cameron Addresses German Borreliosis Society

I am writing from Hamburg Germany as an invited speaker by the Deutsche Borreliose-Gesellschaft (German Borreliosis Society), a multidisciplinary medical society The meeting this year is April 12-14, 2013, and covers Lyme and infectious diseases - immunology, biology, historic finding (stone age), diagnosis, treatment. The conference is attended by more than 100 participants comprised of about 60% practitioners, 10% scientists, 10% working in laboratories and the rest remaining are patients. There is clearly a strong interest in Lyme disease in Germany as echoed by our German ILADS members Armin Schwarzbach and Carsten Nicolaus. The conference features live English and German translation as offered at our recent ILADS conference in Europe.

 

Lyme Conference and Advocacy in Australia

“The Australian TBD 2013 Conference was a huge success, with 83 delegates in attendance,” says Dr. McManus, one of the conference organizers. The event was attended by Prof Chris Baggoley, Chief Medical Officer of Australia. He has formed a clinical advisory committee to advise him on matters pertaining to Lyme disease in Australia. Spearheading this important committee will be ILADS member, Dr. Armin Schwarzbach, along with Dr. McManus, and scientist Dr. Ann Mitrovic of the Tick Borne Diseases Unit, University of Sidney.

 

 

 

 

 

Dr. Bransfield Testifies at Rare Disease Awareness Day

In a ceremony at the Connecticut State Capital in New Haven on February 28th to recognize Rare Disease Awareness Day and to support legislation introduces by Senator Witkos that would improve public awareness and education about the Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus, also known as PANDAS, Dr Robert Bransfield presented testimony by telecommunication on the Devastating Effects of Mental/Neurological Illnesses and the Impact on Our Community.

Dr Bransfield presented details describing how the economic cost to our society of mental illness is $2 trillion dollars per year in addition to the human cost, yet there is aggressive obstruction by third parties preventing access to mental health care even though treatment is highly effective and consists of only 7.5% of total healthcare costs.

Several other physicians and advocates presented on other related topics. PANDAS was originally described 20 years ago as a pathological immune reaction following Streptococcal infections. This concept has more recently been expanded to encompass other infections, including tick-borne diseases and is labeled PANS (Pediatric Acute-onset Neuropsychiatric Syndrome).

A press release regarding the program can be viewed by clicking here.

 

Nicola McFadzean, ND Publishes New Book

ILADS member Dr. Nicola McFadzean, ND, has just completed her new book, The Beginner's Guide to Lyme Disease: Diagnosis and Treatment Made Simple.

Dr. McFadzean is a Naturopathic Physician and owner of RestorMedicine in San Diego, California where she sees patients. She also practices in Australia and recently completed another book, Lyme Disease in Australia: Fundamentals of an Emerging Epidemic.

The Beginner's Guide To Lyme Disease includes a Foreword by Dr. Joseph Burrascano, MD.

As a comprehensive resource, the book fills a need in the marketplace that previous books haven't met, as it is the first of its kind to approach Lyme disease from the perspective of "beginners"—those doctors, patients and caregivers who are new to the topic of diagnosing and treating Lyme disease.

 

 

 

 

 

Lyme-TAP Update

 

 

The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program offered by Ferndale Foundation in coordination with Lyme Patients Assistance Group to provide reimbursement assistance of initial Lyme-related lab tests to patients who demonstrate true financial need.

Please visit the program website www.lymetap.com for an application and eligibility requirements.

 

If approved, you may be reimbursed for up to 75% of your out-of-pocket costs of eligible testing from a qualified CLIA/Medicare approved laboratory of your choice.

Funds are limited & are available on a first-come, first-served basis. Children under 18 years of age are given priority. The intention of this program is to help as many patients in need as possible. It is not intended to cover insurance deductibles or to cover patients not truly in financial need.

The program currently has funding. Please check the website regularly for updates.

 

 

 

 

 

ILADS Announces One Day Basic Lyme Course

 

 

 

 

Dr. Daniel Kinderlehrer will moderate a one day basic Lyme course to be held Thursday October 17, 2013 at the Paradise Point Resort in San Diego, CA.

This course targets medical professionals who are new to the treatment of tick-borne diseases, or would like a refresher course on the basics of diagnosis and treatment. It will also serve as a primer for physician assistants and nurse practitioners who are practicing in the offices of Lyme literate physicians.

 

 

 

Course Description and Goals

·                                 To teach medical practitioners the skills necessary to evaluate and treat acute and chronic Lyme disease and other tick borne infections.

·                                 To review the evolution of tick borne disease in the U.S.

·                                 To describe the clinical presentations of Lyme disease and associated co-infections.

·                                 To identify appropriate laboratory testing and interpretation.

·                                 To delineate appropriate treatment strategies for acute and chronic Lyme disease and associated co-infections.

·                                 To interpret the medical literature and build an evidence based Lyme practice

The course will be limited to 200 participants. Registrants may attend this course alone or may stay for the ILADS annual meeting October 18-20, 2013 at the same location. Lunch and Networking Breaks will be included in the Registration Fee. Registration for the Lyme Basics Course will be up shortly at www.ilads.org.

 

 

 

 

 

 

 

 

 

 

 

Schedule for Lyme Basics

8:00-8:10am

 

Welcome

Daniel A. Kinderlehrer, MD

View Bio

8:10-9:00am

 

Lyme Disease History and Evolution of Tick Borne Disease

Joseph J. Burrascano, Jr., MD

View Bio

9:00-10:15am

 

Clinical Presentation of Lyme

Chris Green, MD

View Bio

10:15-10:45am – Networking Break

10:45am-12:00pm

 

Co-infections: Presentation and Diagnosis

Richard I. Horowitz, MD

View Bio

12:00-1:00pm – Lunch

1:00-2:00pm

 

Laboratory Analysis of Tick Borne Disease

Daniel J. Cameron, MD, MPH

View Bio

2:00-3:00pm

 

Treatment of Tick Borne Disease

Joseph J. Burrascano, Jr., MD

View Bio

3:00-3:30pm – Networking Break

3:30-4:30pm

 

Building an Evidence Based Lyme Practice

Daniel J. Cameron, MD, MPH

View Bio

4:30-5:00– Question and Answer with Panel of Experts

 

 

 

 

 

 

ILADS Announces Annual Scientific Conference

 

 

 

 

The Board of Directors of the International Lyme and Associated Diseases Society announces its Annual Scientific Conference Friday October 18- Sunday October 20, 2013 at the Paradise Point Resort in sunny San Diego California.

The Annual ILADS Lyme Disease Conference is designed to foster collaboration and dialogue between Lyme disease researchers and those who care and advocate for Lyme disease patients in a variety of settings.

The conference will provide updates in clinical knowledge and treatment techniques. Innovations in care will be addressed in plenary sessions and workshops. Watch www.ilads.org for registration soon. You may reserve a hotel room at this time.

A grant stipend program will be available for first time attending attending physicians. Contact lymebarb@aol.com for more information

Course Description and Goals

·                                 To teach medical professionals the cutting edge techniques of diagnosing and treating Lyme and other Tick Borne Diseases

·                                 To provide the scientific underpinnings of an evidenced based medical practice that treats Lyme and other Tick Borne Diseases.

·                                 To explore pathophysiological mechanisms of chronic diseases that may apply to Lyme and other Tick Borne Diseases

·                                 To enhance collaboration between community clinicians and university scientists

·                                 To encourage initiation and publication of clinical studies of Lyme and Other Tick Borne Diseases by ILADS members

 

 

 

 

 

 

OpED

Babesia by Dr. Daniel Jaller

Editor’s Note: We hope this is the first of a new series of articles by our membership to promote conversation and learning. The conversation may be continued in the members’ only section at www.ilads.org/ilads_member/memberhome.php

 

 

Babesia: an example of failed “evidence based medicine.”

When I was a 3rd year med student, some 33 years ago, we wouldn’t be having this conversation. Medicine, as practiced at that time would have understood we are in the midst of a devastating epidemic. Medicine, as an art, was practiced in a slower, more methodical fashion - when MRI machines, managed care, the debasement of physicians as “providers” and “evidence based medicine” were not on the horizon. In an era devoid of CT scanners patients were admitted to hospitals for diagnostic evaluation - old fashioned tools (and emerging technology) were at least equal partners.

The new and improved practice of medicine is “evidence based,” which encompasses the opinions of experts as evidence. Evidence is not truth. Evidence relates to facts or interpretations of facts. Inevitably, the “truth” hinges on which evidence one chooses to consider. Medicine is ever evolving: the state of the art is always a moving target. The clinical practice of medicine should consider evidence from a wide variety of sources. Studies in laboratory animals is evidence. The clinical experience of many patients and physicians is evidence; and published studies are evidence. In the final analysis: medicine is still at its core, a healing art; it is not a science.

when I was a medical student a patient suffering with multiple complaints: fatigue, fevers, sweats, headaches, shortness of breath, joint and muscle pain, numbness and tingling, mental changes, hallucinations - would be seen as sick - not crazy, because of a life-long relationship with a personal physician who knew the patient well.

Patterns would be uncovered as happened with another contemporaneous emerging disease, HIV/AIDS. I think blood would have been examined by non-rushed, hospital employed pathologists looking for parasitic illness: a basic tool. Malaria-like parasites within red blood cells would be seen: Babesia species.

In “Clinical Vaccine Immunology,” November 2010, the authors report that evidence of Babesia duncani was found in 2% of blood donor samples and 27% of clinical samples. B. duncani was found to be distributed throughout the United States, including my state of Maryland. Contrary to

 

dictum, Babesia microti was found much less frequently. In the Medscape “peer reviewed” reference, April, 2012, “Drugs, Disease and Procedures,” Dr. Cunha,and colleagues provide a topical summary of Babesiosis. Other, CDC accepted species of Babesia, MO1, CA1 and Divergens have been shown to cause human disease in the United States for which do not test at all. In Europe, human disease is associated with various species, including B. bovis, once only known as a cattle disease. (B. divergens, also from cattle, is the predominant agent). The authors report B. microti and “B.microti-like agents” in Europe causing human disease. At least one unknown Babesia species has been linked to human disease. Over 100 species of Babesia are known to exist. The 27% number for B.duncani presented above, may represent only be the tip of the iceberg.

Currently used high tech procedures: IFA, PCR, FISH are of limited diagnostic value. The definitive diagnosis of Babesiosis hinges on the observation of organisms seen in a fresh (less than an hour old) meticulously stained blood smear, carefully screened by an experienced observer; numerous fields, over 100 must frequently be screened.

Degraded blood smears examined by busy, mill lab techs (Labcorp/Quest) are of no value. Bartonella are much easier: species jump off the slide as soon as you look.

In bygone days, physicians used the tools readily available: a tuning fork, a stethoscope, a microscope and something else, much more important - our brains.

In this day and age of “evidence based medicine,” where medicine is considered a science; where limited studies(which are not science) are taken out of context, the results of which unreasonably generalized; where physicians work on corporate/HMO time clocks; where the autonomy of individual physicians has been relinquished to “the experts;” where doctors are encouraged not to think for themselves; where medicine has become a job, not a calling; where the art of medicine has been tossed out like the proverbial baby in the bath water - much is lost.

Discoveries which might otherwise be clear, are lost in the muddied waters of “mainstream” medicine, blinded by a dysfunctional system and by its own arrogance.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

You're receiving this newsletter because you signed up at ilads.org or you are a member of ILADS

Having trouble reading this? Click here to view it in your browser.

ILADS | PO Box 341461 | Bethesda, Maryland | 20827-1461 | Phone: 301.263.1080 | contact@ilads.org | www.ilads.org

 

Dr Marc Michael Bransten

166 Avenue Henri Barbusse

Drancy 93700

tel 0148950777

 

Association Internationale pour les recherches médicales

c/o Docteur Trihn

6 Avenue Mac Mahon

75017 Paris

sur R.D.V.

Actualités

 

POUR ACCEDER AU INFOS DE NOTRE SITE IL FAUT DISPOSER D'UN PC  éQUIPé DE FLASHPLAYER

 

19 mai 2012

International Meeting for Autism Research

On l'appelle hormone de l'amour, du bien-être ou parfois de la confiance. Et les résultats préliminaires de cette étude à grande échelle menée par la Yale School of Medicine montrent que cette hormone, l’ocytocine, une substance produite naturellement dans le cerveau et dans tout le corps, contribue à améliorer la fonction cérébrale dans les régions clés qui traitent la communication sociale chez les enfants et les adolescents, atteints de troubles du spectre autistique (TSA). Ces conclusions présentées le 19 mai à l’International Meeting for Autism Research ouvrent un espoir de nouveau traitement, en combinaison avec d'autres thérapies, pour les enfants atteints.

Le Pr Kevin Pelphrey, professeur agrégé de psychiatrie pédiatrique et l’étudiant postdoctoral Ilanit Gordon résument leur conclusion: «L’administration d’ocytocine en combinaison avec d’autres interventions cliniques peut aboutir à un traitement plus efficace des déficits de la communication sociale typiques de l'autisme ». Alors que ces déficits de communication sont un des principaux symptômes de l’autisme, il y a peu de traitements efficaces et aucun qui ne cible directement ce dysfonctionnement social de base.

L'ocytocine avait déjà retenu l’attention de chercheurs pour sa capacité à réguler de nombreux aspects du comportement et de la cognition sociale chez les humains, mais, afin d’évaluer précisément son impact sur la fonction cérébrale, Gordon et son équipe ont mené cette étude en double aveugle, contrôlée versus placebo auprès d’enfants et d’adolescents âgés de 7 à 18 ans atteints de TSA.

Les jeunes participants ont reçu une dose unique d’ocytocine par vaporisation nasale puis l’effet du médicament dans le cerveau a été suivi par IRM. Les chercheurs constatent que l'ocytocine parvient à augmenter l’activation des régions cérébrales connues pour traiter l'information sociale. Les chercheurs précisent que ces activations cérébrales étaient liées à différentes tâches impliquant divers modes de traitement de l'information, comme par la vision, l’écoute, et la compréhension de personnes extérieures.

 

Source: Yale University via Eurekalert (AAAS) International Meeting for Autism Research
Oxytocin improves brain function in children with autism