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Below you will find the 2013 ILADS' Newsletters. You may read them online or download the pdf. Please note that many of the links are outdated.

Dear ILADS Member,

Happy New Year to all of our colleagues across the globe and a warm welcome to all of our new members who have joined since the Boston conference. Please send any news items between issues to us at Lymedocs@aol.com.

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

 

PRESIDENT'S MESSAGE

Greetings Colleagues,

The Boston conference was the most successful conference of any Lyme organization in history. We achieved approximately a 100% increase in attendance over the Toronto conference and had an upsurge in new members and renewals that will invigorate and energize our membership for the year to come.

Our program based on evidence-based medicine was extremely well received both by those attending and by those who viewed our program worldwide. Through the efforts of our staff and select board members, our conference was viewed by thousands of people on web streams to the United States, Europe and Australia.

This year’s Platinum Dinner, which was overseen by Andrea Gaito, M.D., our Treasurer, produced dramatic revenues over last year’s dinner and will contribute to our ability to provide greater administrative services to the membership.

It is also exciting news that the ILADS Educational Foundation is the beneficiary of a major training grant by the IGeneX Corporation to train physicians in the diagnosis and treatment of Lyme and other tick-borne illnesses. This compliments the work that we have done over a number of years in seeking to ensure that physicians interested in tick-borne illness were given the opportunity to train with ILADS physicians in the Physician Training Program and in doing so, improved their abilities to serve the affected patient population.

This year, we will have three conferences sponsored by ILADS: one in Hershey, PA in April, the European conference in Belgium in June and the annual conference in San Diego, CA in October.

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

 

Pennsylvannia ILADS Members In Action

The Lyme Disease Association of Southeastern Pa has three ILADS members on its Board; Doug Fearn, Ron Hamlen, and Christa Vanderbilt. Between the three of them, they have given over 75 public talks, educating the community about tick-borne diseases. Their booklet,”Lyme Disease: The Basics” is about to go into its sixth edition. It is distributed to public health departments, schools, health care providers, and patients.

Additional work by this group include meeting with legislators at local, state and federal levels in many health forums. Doug Fearn, the group’s Chairman, will offer some suggestions in the next ILADS newsletter about effective ways to interface with local Board of Health officials in your community.

Australian Lyme Documentary Film

A new movie, an Australian documentary on Lyme disease and other stealth infections, has just been released. “Invisibly III:Part One-A Stealth Reality” explores the concept of stealth infections and the role they play in chronic infections and illness. The movie follows the journey of Australian Lyme disease patients through treatment as they battle the political and medical logistics of Lyme disease recognition in Australia. Click here to view more information.

 

Dr. Liegner Applauded

The ILADS community would like to thank Dr. Kenneth Liegner for all of his efforts in securing the CME credits for our past meetings. Dr. Liegner volunteered his time to travel to Westchester Medical Center, and successfully lobbied on behalf of our group. Thank you Dr. Liegner.

 

Richard I. Horowitz, MD, Author "Symptom Free"

ILADS member Richard Horowitz, MD has completed his Lyme book which will be released through St Martin’s press, in a hardcover edition, in the summer/fall. The name is Symptom Free: A Revolutionary Approach to Detecting Lyme and Chronic Illness and Restoring Health. The book will be hundreds of pages long also with hundreds of scientific references. It explains both classical and integrative approaches to the treatment of tick-borne disorders.

If that wasn’t enough, Dr. Horowitz is speaking at the IHS conference in NYC at the end of February. This time, it will be on Meditation, Mind Training and Medicine, a scientific overview of meditation techniques to bring balance into our lives, and to help deal with stress and anxiety.

Finally, Dr. Horowitz has been invited to speak in France in late September at a European Conference with Dr Christiane Perrone. He will be providing an overview of tick-borne disease diagnosis and treatment in french to the french speaking doctors there.

 

Author Katina Makris Encourages Release of Delayed Massachusetts Lyme Disease Commission

The Massachusetts Lyme Disease Commission was created by the Massachusetts State Legislature in April of 2011. The Lyme Disease Commission’s charge was to develop a report to help combat Lyme Disease, including options in regards to screening programs, the improvement of preventative measures and to explore the value of public health screening measures. The release of the report has been delayed as the result of numerous technical issues. Makris believes it is imperative that Massachusetts and other affected states take action as soon as possible.

“The Lyme disease situation in Massachusetts is yet another red ‘dashboard’ light screaming for action alert regarding this exploding infectious illness.

Many medical authorities consider Lyme disease to be the polio of the twenty first century, as it has now surpassed HIV in how quickly it is spreading” says Katina Makris, Lyme survivor and author of “Out of The Woods; Healing Lyme Disease, Body, Mind & Spirit”.

As Dr. Leo Shea III, International Lyme and Infectious Disease Society president states, “we watched too many thousands die when the medical community did not take HIV seriously. We cannot afford to lose another generation to Lyme disease.”

“The sooner Massachusetts and other states adopt Lyme disease awareness, prevention, diagnostic and adequate early treatment protocols, the better chance we have to arrest the epidemic.”

 

Training Funds Available

Due to the generosity of IGeneX, ILADS members with a MD or DO degree may now take advantage of our Physicians’ Training Program. An ILADS member may spend one to two weeks shadowing a designated training physician. There is a stipend available. We encourage all qualified members to take advantage of this program. Click here to find out more about The Physicians' Training Program.

Call For Papers

The International Lyme and Associated Diseases Annual Scientific Session October 18-20, 2013 is in San Diego. We are now accepting abstracts of 200 words or less in paragraph form. Please remit to lymedocs@aol.com. Deadline is February 15th 2013. We are also soliciting poster presentations.

 

Moregellons Disease: New Research

Congratulations to Marianne Middelveen, MSc, Mdes, Raphael Stricker, MD, Peter Mayne, MD and Doug Kahn on their new publication, “Characterization and evolution of dermal filaments in patients with Morgellons Disease.” This landmark paper will be discussed at the CEHF 6th Annual Conference in Austin, Texas on April 6-7, 2013.
Click here to find out more.

Dr. Bransfield Offers Two Seminars

Dr. Robert Bransfield, will be offering two interesting seminars in the upcoming months. “The Psychoimmunology of Tick Borne Diseases and its Association with Neuropsychiatric Symptoms” at Cooper Medical School, NJ on January 22, 2013 and “Newer Treatments for Major Psychiatric Disorders” at Saint Claire’s Hospital, NJ on Feb 21, 2013.

 

2013 Directory

We are going to be printing the 2013 ILADS Member Directory. Please update us with any changes in contact information. New address? New e-mail? Opened a second office? Closed an office? Do you speak multiple languages? We continually have patients who are trying to find a doctor with whom they are comfortable communicating. Update us at lymedocs@aol.com Only those members with paid dues will be included in this printed edition sent to all ILADS members.

Seeking New Lyme Doctor For Practice in Minnesota

Sentinel Medical Associates in St. Paul MN presently has 2 ILADS member physicians involved in the treatment of tick-related disease. Sentinel is interested in adding another such physician specialist to our organization. Interested practitioners can contact us at 651.287.8781.

Charles Burton, M.D., Medical Director

 

ILADS Upcoming Educational Opportunities

April 20, 2013, ILADS and Jefferson University Hospital, Myrna Brind Center for Integrative Medicine are co sponsoring a one day course on basic Lyme disease.Host: PA Lyme Resource Network…. This is an opportunity for medical providers to meet other like minded doctors interested in learning more about diagnosing and treating chronic Lyme and tick borne diseases. Up to nine CME Cat. 1 credit hours are available for this course. The program schedule follows below. To register, go to http://ilads.org/ilads_media/hershey-registration/. Researched Nutritionals has graciously agreed to host a dinner on Friday night for the faculty and all registered ILADS members.

 

Additionally, ILADS will be headed back over to Europe. Thursday and Friday, June 6-7, 2013, ILADS is sponsoring a Lyme program in Brussels, Belgium. ILADS member Kenny deMeirleir, MD is organizing the sessions. More information to follow as soon as it is available.

 

Finally, ILADS will be returning to the West Coast in fall, 2013. The Fourteenth Annual Scientific Session will be held October 18-20, 2013 at Paradise Point Resort & Spa just a ten minute cab ride from San Diego International Airport. Room reservations are now available by calling 800 344 2626 or online by clicking here. If you make a reservation by September 22, 2013, you may take advantage of the group rate of $199 plus tax for a Lenai Garden room. Parking is complimentary. Once more information is available, we will be notifying you.

 

PA Lyme & Tick-Borne Disease Conference Program

The Hershey Lodge, Hershey, PA
Friday, April 19, 2013
ILADS MEMBERS NETWORKING and SPEAKERS FUNCTION

6:00 pm – Networking reception

7:00 pm – Dinner

Dinner Speaker: Updates on Research and Testing on Bartonella

B. Robert Mozayeni, MD

Dinner Sponsored by Researched Nutritionals

7pm-9pm – Exhibitor Set up

Saturday, April 20, 2013

6:45 am - Registration Opens

7:00-7:45am – Breakfast With Optional Presentation

Optional Breakfast Presentation: Results of a twenty patient study of the use of Curcumin and its effects on Immunologic and Cognitive/Metabolic Disorders

Philip DeMio, MD

Breakfast underwritten by Lee Silsby Pharmacy

8:00-8:05am

Welcome

Julia Wagner, MBA, President PA Lyme Resource Network

8:05-8:10am

Welcome

Daniel J. Cameron, MD, MPH, ILADS Moderator

8:10-8:40am

Keynote: The Role of Biofilms in Chronic Infections

Garth Ehrlich, PhD

8:40-9:40am

Lyme Disease History and Evolution of Tick Borne Disease

Joseph J. Burrascano, Jr., MD

9:40-10:00am – Networking Break

10:00-10:30am

ILADS Treatment Guidelines

Daniel J. Cameron, MD, MPH

10:30-11:00am

An Objective Analysis of Testing and Treatment Studies

Harold Smith, MD

11:00-11:10am – Networking Break

11:10-11:45am

Complicating Factors – Co-infections

B. Robert Mozayeni, MD

11:45am-12:15pm

Question and Answer for Morning Presenters

Dr. Jingduan Yang, MD, Jefferson Moderator

12:15-1:15pm – Lunch – Networking Tables by Topic (included in registration)

1:15-2:15pm

Tick Borne Diseases in Pediatric Patients

Ann F. Corson, MD

2:15-3:00pm

Neuropsychiatric Manifestations of Tick-Borne Disease in Pediatric and Adult Patients with Cases – What is going on?

Robert C. Bransfield, MD

3:00-3:15pm – Networking Break

Breakout Case Study Presentations and Discussions

3:15-4:15pm

BREAKOUT A:
Treating Lyme: Practical Considerations with selected case studies
Panel Discussion:

Daniel Cameron, MD, MPH

Harold Smith, MD

Joseph Burrascano, Jr., MD

BREAKOUT B:
Cases of Lyme in Pregnancy and Pediatrics
Panel Discussion:

Ann F. Corson, MD

Rita Rhoads, MPH, CRNP, CNM

BREAKOUT C:
Neurological/Psychiatric Cases
Panel Discussion:

Behzad Maghsoudlou, MD

Robert C. Bransfield, MD

4:15-4:45pm – Final Q&A Panel of ILADS Experts

Q&A Panel:

Robert C. Bransfield, MD

Daniel Cameron, MD, MPH

Ann F. Corson, MD

Behzad Maghsoudlou, MD

Harold Smith, MD

4:45-5:00pm – Summary of best take-aways from the day

 
ILADS BOSTON PHOTO GALLERY
 

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.

 

Schedule for Lyme Basics

8:00-8:10am

Welcome

Daniel A. Kinderlehrer, MD

8:10-9:00am

Lyme Disease History and Evolution of Tick Borne Disease

Joseph J. Burrascano, Jr., MD

9:00-10:15am

Clinical Presentation of Lyme

Chris Green, MD

10:15-10:45am – Networking Break

10:45am-12:00pm

Co-infections: Presentation and Diagnosis

Richard I. Horowitz, MD

12:00-1:00pm – Lunch

1:00-2:00pm

Laboratory Analysis of Tick Borne Disease

Daniel J. Cameron, MD, MPH

2:00-3:00pm

Treatment of Tick Borne Disease

Joseph J. Burrascano, Jr., MD

3:00-3:30pm – Networking Break

3:30-4:30pm

Building an Evidence Based Lyme Practice

Daniel J. Cameron, MD, MPH

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.

 

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.

 

Dear Members,

Greetings to all of our colleagues across the globe and a warm welcome to all of our new members who have joined since the Boston conference. Please send any news items between issues to us at contact@ilads.org.

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

 

PRESIDENT'S MESSAGE

Greetings Colleagues,

It has been my pleasure over the last two years to serve the ILADS community. I wish to express my thanks to the members of the Board of Directors, the ILADS national staff and all ILADS members who have participated in special projects to advance the mission and goals of ILADS.

During the last two years, our membership has grown significantly, attendance at the conferences has doubled, and our revenues have increased sufficiently so that we have been able to hire additional staff to keep up with the demands of thousands of patients across the country who access our services on an annual basis.

We have also been instrumental in providing speakers to advance legislation in various states focused on protecting

Lyme-literate physicians. Their earnest and dedicated work on behalf of suffering Lyme patients is often jeopardized by the entrenched medical establishment that seeks to limit patient information to one set of guidelines.

When I leave the Presidency in October, I will take some measure of satisfaction in having overseen the maturation of the organization during the last two years. The improved structure of ILADS will serve the incoming president, Dan Cameron, well and will allow for an expansion of services to all Lyme and other tick-borne disease patients.

I thank you for your support and continue to look forward to the day when we have a gold standard irrefutable diagnostic test for Lyme and curative treatments for all patients.

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

 

BARTONELLA WEBINARS:

Discussing Biology of Bartonella, Human Case Series Published in J EID (May 2012) and Long Term Clincial Experience

In May 2012, a team of veterinary and human medical scientists published in the CDC's Journal , Emerging Infectious Diseases (EID May 2012), the largest ever case series of Bartonella spp. bacteremic patients in the human medical literature.

These patients were examined and selected for testing by a single rheumatologist (Dr. Robert Mozayeni) due to concerns about Lyme disease, however, distinct clinical features associated with Bartonella were observed. Bartonella appears to be an important co-infection of in humans with Borreliosis, however, Bartonella sp. can be transmitted by a broad range of vectors that harbor these bacteria.

In addition, a broad range of animal hosts serve as persistently infected reservoirs for human infection. Awareness is emerging regarding Bartonella infections in domestic and wild animals and humans. Importantly, bartonellosis appears to share a high degree of overlap with the clinical manifestations of Lyme disease.

Beginning in September 2013, Ed Breitschwerdt, DVM, Professor of Veterinary Internal Medicine and Infectious Diseases at North Carolina State University, and B. Robert Mozayeni, MD, founder of the Translational Medicine Group, P.C., Rockville, MD will present a two-part webinar series for health professionals (CME's are being applied for, awaiting approval) regarding the biology, diagnosis and treatment of bartonellosis. These two hour sessions will be offered at Introductory and Advanced Levels.

There will also be a webinar regarding Bartonella sp. and bartonellosis for the general public to be held in October.

The webinar series will be sponsored by the Center for Translational Medicine, a 501c(3) research and educational organization co-founded by Dr. Mozayeni.

Dr. Breitschwerdt is a co-founder and Chief Scientific Officer of Galaxy Diagnostics, LLC. and Dr. Mozayeni is the Chief Medical Officer of Galaxy Diagnostics, LLC.

To register and reserve your seat for a Bartonella webinar, please visit: c4tm.org/center/edu

 
JUST PUBLISHED IN THE HUFFINGTON POST:

The Global Search for Education: In Search of Solutions - Ticks

FEATURING: Dr. Richard Horowitz, Dr. Gull Herzberg, Chantal Perrin, Dr. Leo Shea III
Written By C.M. Rubin

In search of solutions from around the world today, I continue to share news on Lyme disease in China, Germany, France, Australia, Poland, Norway, Switzerland and the United States. I am joined by Dr. Gull Herzberg, a Fellow of the Royal Australian College of General Practitioners who is that College's representative on the recently formed Clinical Advisory Committee on Lyme Disease in Australia, chaired by Australia's Chief Medical Officer; Dr. Richard Horowitz, one of the foremost Lyme disease doctors in the US and author of the highly anticipated new book, Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease (St. Martin's Press, Fall, 2013); Chantal Perrin, the Producer of a new documentary on the global Lyme epidemic coming at the end of October (co-produced by France Channel 5); and Dr. Leo J. Shea III, President of ILADS.

Read Entire Article.

More Articles In The Huffington Post Series:
Written By C.M. Rubin

The Global Search for Education: Canada - Ticks - Read Article.

The Global Search for Education: Australia - Ticks - Read Article.

The Global Search for Education: UK - Ticks - Read Article.

The Global Search for Education: Finland - Ticks - Read Article.

The Global Search for Education: The Netherlands and Ticks - Read Article.

We hope you will encourage others to engage
in our global conversation on Tick Borne Illnesses.
 
HOT OFF THE PRESSES:

ILADS member Richard Horowitz, MD announces the arrival of his long awaited book on Lyme disease.

The title is SOLVING THE MYSTERY OF LYME AND CHRONIC DISEASE. St Martin's press is the publisher. The tentative release date is November 2013. The book is a 520 page hardcover edition covering Lyme and associated co-infections in detail, with hundreds of scientific references.

The book also contains patient histories, and explains differential diagnoses for complex cases. It is written for the lay public with and an addendum for health care providers in the back.

Richard Horowitz, MD is offering to personalized autograph copies of his soon to be released Lyme book to ILADS San Diego attendees. His book will be available for sale at the ILADS San Diego conference in advance of the November release date. Write to contact@ilads.org to reserve your copy of the book for purchase and pick up in San Diego.

If you prefer an on line purchase click here.

 

Ceres Nanosciences Improved Lyme Disease Test, Market Launch Planned for 2014

A team of Ceres Nanosciences and George Mason University researchers are pleased to announce that they have accelerated the development of their novel Nanotrap? based Lyme Antigen Test by adding a new patient enrollment site to their clinical study. The new site will provide valuable patient samples needed for the development and delivery of the test to clinical labs. The addition of this new site was made possible through the support of Virginia Delegate, David Ramadan.

The new site, Internal Medicine of Northern Virginia, in Reston, VA, is led by Dr. Samuel Shor. As chair of the Loudoun County Lyme Commission and member of the Virginia Governor's Task Force on Lyme disease, Dr. Shor is a leading voice in the national discussion about Lyme disease diagnosis and treatment. "With the increasingVirginia Delegate, David Ramadan, has been a great supporter of Ceres' approach and was responsible for connecting Ceres with Dr. Shor's practice. Del. Ramadan said, "I'm very excited about this great advancement in early detection of Lyme and looking forward to 2014 when this test becomes available to the public. Further I'm proud of the hard work of the scientists at my alma mater George Mason University and thankful that Dr. Shor agreed to participate in this effort based on my request. Detecting Lyme at an early stage will help thousands of our friends and neighbors avoid years of pain and sufferinThe Ceres/Mason team plans to submit the results of the clinical study to a peer-reviewed scientific journal by the end of 2013, and hopes to identify a partner for a local market deployment by early 2014. "The test is being developed in adherence to very strict clinical guidelines so that it will be highly reliable and reproducible across labs," says Ceres' CEO, Ross Dunlap. "We hope to deliver this in partnership with an established health care provider so that it can reach patients and provide benefit as soon as possible."

Raw Data Contradict CDC's Lyme Position

The Centers for Disease Control and Prevention has been presented with well-documented cases of treatment failure with currently recommended regimens, as in the case of Vicki Logan ( "Rallies to raise awareness of Lyme disease, challenge CDC treatment guidelines" May 5), as well as instances of the dismal failure of the CDC's highly-touted "2-Tier" system of Lyme diseDespite these cases, which are representative of many others, Dr. Lyle Petersen turns a deaf ear to the experience of the patients ( "Valley View: Long-term antibiotics not warranted for Lyme treatment" June 16). Dr. Petersen implies short-term antibiotic treatment is invariably curative for Lyme disease and that chronic and seronegative cases of Lyme disease do not exist. I challenge Dr. Petersen to make public the raw data from CDC-funded research on cerebrospinal fluid from persons with Lyme disease conducted in three collaborating university research laboratories. These data appear to have been "deep-sixed," likely because results contradict the CDC's preconceived bias against the existence of chronic and seronegative Lyme diseases.nt of 140 frozen spinal fluid specimens from my patients tested positive on standard assays for Lyme disease whereas 62 percent tested positive on one or more of the four research assays used in the CDC-funded research: two antigen detection assays and two assays for borrelia-specific immune complexes, all in cerebrospinal fluid.

Unfortunately, many persons with Lyme disease fail to get diagnosed early or treated adequately, resulting in incalculable suffering, general and neurological deterioration, and sometimes death.

Kenneth B. Liegner, M.D.
Pawling, New York, USA

 
ALEXIS CHESNEY, ND
Best Practices in the Prevention, Diagnosis and Treatment of Lyme Disease New York Association of Naturopathic Physicians (NYANP) Conference
October 6, 2013
3 West Club, 3 West 51st Street,
New York, NY
Register at www.nyanp.org
Best wishes to Eboni Smith, MD
of Internal Medicine of Northern Virginia who is just married and
now to be known as
Eboni S. Cornish, MD
Looking for Lyme-open, and/or Lyme-literate doctor to help
1-2 days a week in a busy Lyme practice
in Stevensville, MD.
Please contact Barbara at
contact@ilads.org
 

ILADEF PSA/Press Release - LymePowerOfUs

ILADEF has produced a thirty second and sixty second PSA for distribution to create awareness about Lyme Disease and to engage the community through the LymePowerOfUs campaign. Please visit the Press page on LymePowerOfUs to download the PSAs if you would like access to the PSAs for your radio contacts.

You may also download the press release and other downloads that may be helpful when contacting the press.

We Need Your Help. 20 days left to launch our message viral.

Thunderclap is a new crowdspeaking platform that helps people be heard by saying something together. It just takes a minute. You simply pledge a tweet and once enough tweets have been "stockpiled", they are unleashed simultaneously.

We only need 29 more pledges in the next 20 days. If we dont reach our goal, our message will not go out. Please take a minute and join us in getting the message out "Put An End To The Lyme Disease Epidemic".

 

Educational Course Offered
By Dr. Betty Maloney

Dr. Betty Maloney continues to offer a half day course on Lyme Disease that is accredited for 4.0 credits through the American Academy of Family Physicians. The goal of the course is to provide a thorough and non-biased discussion of the science surrounding Lyme disease and enable attendees to be better prepared to diagnose the disease. Please contact Dr. Maloney directly at md@phhmd.com if you know a cluster of physicians looking for this kind of opportunity.

Dr. Corson Office Change

Dr. Ann Corson's New Office Address:
404 McFarlan Rd., Suite 201
Kennett Square, PA. 19348
Telephone: 610 444 8901

 

Lyme Literate Physician in the Twin Cities, MN Looking for PA, NP, or ND

Global Rehabilitation, LLC is an new integrative Physical Medicine and Rehabilitation clinic in the Twin Cities, Minnesota. Dayna Wolfe, M.D., an ILADS member is the owner and Chief Medical Officer of this practice with a growing case load of patients with Lyme disease and co-infections. The mission of Global Rehabilitation is to strive to enhance the quality of life for people with chronic medical conditions and disabilities.

We are interested in hiring a full-time PA, NP, or ND, who is motivated and shows an interest in helping the practice to grow through the years. Dr. Wolfe would like to hire an integrative/functional medicine practitioner. If you are interested in discussing this opportunity further, please email your resume and brief letter of interest to globalrehabllc@gmail.com. Thank you and best regards, Dayna Lorraine Wolfe, M.D. (612) 360-2041.

Dr. Steven Phillips To Reopen Office

Dr. Steven Phillips will be reopening his office practice on September 1, at 944 Danbury Road, Wilton, Ct., Telephone: 203 544 0005. Dr Phillips was one of the founding members of ILADS and served a President from 2004-2006. He will be accepting new patients.

Clongen Laboratories Moving To New Location

Clongen Laboratories, LLC will be hosting an open house at its new location at 211 Perry Parkway, Gaithersburg, Maryland on September 2, 2013. The new facility is needed due to the increased demand for the 250 DNA and RNA tests for infectious diseases that it offers, which includes testing for Lyme and other tick-borne diseases. Learn More.

 

ILADS Launches One Day Basic Lyme Course

ILADS is proud to announce a one day Basic Lyme course in San Diego, Thursday October 17, 2013. 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. The course is limited in size so that participants will have ample opportunity for interaction with the highly regarded faculty.

ILADS exhibitors will be on site to help newly treating doctors choose the products to complement their budding Lyme practices. The annual scientific conference will follow at the same venue, Paradise Point Resort, Friday-Sunday, October 18-20, 2013.

Lyme Basics Program Highlights

8:10-9:00am

Lyme Disease History and Evolution of Tick Borne Disease

Joseph J. Burrascano, Jr., MD

9:00-10:15am

Clinical Presentation of Lyme

Chris Green, MD

10:45am-12:00pm

Co-infections: Presentation and Diagnosis

Richard I. Horowitz, MD

1:00-2:00pm

Laboratory Analysis of Tick Borne Disease

Daniel J. Cameron, MD, MPH

2:00-3:00pm

Treatment of Tick Borne Disease

Joseph J. Burrascano, Jr., MD

3:30-4:30pm

Building an Evidence Based Lyme Practice

Daniel J. Cameron, MD, MPH

 

Combine Learning and Earning CME Credits,
With a Beautiful Vacation in San Diego

Paradise Point - San Diego's Island Resort is a private 44-acre island tucked away on gentle Mission Bay, minutes from the heart of downtown San Diego and adjacent to the famous SeaWorld Adventure Park. This San Diego Resort features comfortable, California beach bungalow-style guest rooms amidst lush, tropical gardens and meandering lagoons.

ILADS has negotiated a special room rate of $199 per night from October 14, 2013 until October 23, 2013. Click here to book a room online or call 800.344.2626 and use our group code: ILADS2013 to get the special rate. Rate is good until September 23, assuming room availability.

 
ILADS GALA AWARDS DINNER

Gala Chairs Richard Horowitz, MD and Raphael Stricker, MD are planning some fun for you. At the same time we are raising funds to support the ILADEF physicians' training program and the Lyme TAP program. Nick S. Harris, PhD, an inspiration to all will be awarded the ILADS Pioneer Award for his innovations in Lyme disease testing, his commitment to people suffering with Lyme disease, and his generous donations to people in need.

Saturday October 19, 2013 at the Paradise Point hotel, gala guests will be transported to the atmosphere of the Haawaiian Islands. Polynesian Dancers will greet each guest with a lei. A fire-knife performer and Polynesian dancers will wow the crowd. Then after dinner, Dr. Horowitz intends to entertain everyone with his latest Lyme inspired song. Come join the fun.

Click Here To Find Our More About The ILADS Gala Awards Dinner.

 

ILADS Gala Program - Add Your Voice

Show your gratitude to Nick Harris, PhD by buying a listing in the gala program. For $100 you may include a tile ad listing (2.528" x 1.847"). For $50 you may add up to 100 words of congratulations to Dr. Harris' Tribute Page within the Program.

If you would like to express your message in a big way here are additional options

AD SIZES

1 page (6 x 9): $1,600
1/2 page (6 x 4.5): $1,050
Inside Front Cover: $3,500
Inside Back Cover: $3,000
Back Cover: $3,250.00

Click Here To Purchase Your Listing, Text Congratulations or Ad.

 

ILADS LAUNCHES LYMEPOWEROFUS CAMPAIGN

ILADS Marketing Consultant and Web Developer, Laurie Martin has developed a a cutting-edge call-to-action social media campaign that emphasizes the power of people around the world unified with one voice to communicate the importance of Lyme disease awareness.

LymePowerOfUs offers simple tools to individuals to tell their story, restore their voice, and come together under a unified message: "The Power Of Us To Bring About Change. Join The Roar."

The Campaign was created in honor of Dr. Nick Harris who will be awarded the 2013 Pioneer Lyme Disease Award on October 19, 2013 at the ILADS Gala Awards Dinner in San Diego, California

Help us realize our vision of a world where no one is denied appropriate diagnosis and treatment of Lyme disease, where families aren't ruined financially, and where no one lives a life of suffering from chronic Lyme disease.

Click Here To Learn More About LymePowerOfUs

TEE SHIRT
STICKER
THIN WRISTBANDS
 

ILADS Scientific Session Goes West

Annual Scientific Session is October Friday 18 through Sunday October 20th, 2013 at the Paradise Point Resort in San Diego, CA. The goal this year is presenting evidence-based medicine which will define medical and mental health issues more clearly, inform treatment and increase professional and patient understanding of the scientific underpinnings of Lyme disease diagnosis and treatment. Each day will have a morning plenary session for all attendees. Friday and Saturday afternoons, registrants may choose from several breakout sessions. Sunday is plenary only with the presentation of the John Drulle Memorial Lectureship for the speaker who has given new hope to patients through his or her clinical research.

Some program highlights include Amiram Katz, MD speaking on IVIG in the Treatment for Autoimmune Issues in

Lyme Disease. Benjamin Asher, MD will be speaking on Ear, Nose and Throat Manifestations of Lyme and Daniel J. Cameron, MD, MPH will address Goal Directed Therapy of Lyme and Tick Borne Diseases.

New this year, Dr. Horowitz and Dr. Burrascano will lead a break out on Beyond Basics for those in the intermediary level of their tick borne disease diagnostic and treatment care. Continental breakfast, lunch and all networking breaks are included with the registration fee.

The beautiful hotel campus is 44 acres of lush vegetation on an island surrounded by Mission Bay. Relax for a few days and learn about the newest in Lyme disease diagnosis and treatment. Come join us.

ILADS Annual
Members' Meeting

ILADS Members join us in the Mission Bay Room of the Paradise Point Resort at 5:30pm on Friday October 18 to discuss important member business. The Nominating Committee headed by Robert Bransfield, MD is soliciting nominations for Board positions. Anyone interested in serving should email contact@ilads.org Please include a short bio.

Did You Get A Chance To Ask That Last Question?

ILADS will be offering the popular hosted tables at the upcoming annual meeting for the Friday lunch for all registrants. Speakers and other Lyme leaders will be leading a discussion at their table. Any registrant may sit at the table, first come first served and join the conversation. As is the custom, the conversation will be general in nature. No personal health issues may be addressed. A list of tables/hosts will be in the final program.

 

Dear ILADS Member,

Dear Member, A sincere thank you to all that made the Annual Conference in San Diego a huge success. As always, the camaraderie was infectious, even among so many new acquaintances. Please check the ILADS website for our upcoming regional and international conferences in the coming new year.

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

 

PRESIDENT'S MESSAGE

As the newly installed president of ILADS, I look forward to working with you over the next two years as we seek to continue our organization’s growth and to develop and enrich both our educational training programs and medical advocacy programs. Our goals are challenging and we often confronted by a scientific and medical subsector that is myopic and powerfully resistant to our efforts. I take heart however in the ILADS role as David confronting Goliath… and we know how that story ended. I am encouraged by the enthusiasm present at our ILADS Annual Meeting San Diego where we were graced with presentations by both national and international experts who addressed the 400 attendees. A noteworthy success was the preconference “Basics” workshop attended by 150 individuals. While many of the participants were new to the field of tick-borne disease even professionals with experience in treating Lyme disease patients appreciated the quality of the course. A very special thanks to Dr. Dan Kinderlehrer for chairing this workshop and contributing hundreds of hours of his professional time in organizing the speakers and materials that so enriched the process.

At the Member’s meeting several new changes were enacted to the bylaws to help in the growth of the organization. One of these was the passage of the term limits which allows voting members greater opportunities to

participate in the life of the organization. In keeping with this change, three long-standing members of our Board who have worked tirelessly for the organization, Lorraine Johnson, and Drs. Robert Bransfield and Andrea Gaito, stepped down to facilitate the election of three new ILADS directors. I welcome the newly elected members; Drs. Ken Liegner, Dan Kinderlehrer, and Carsten Nicolaus, all committed to the tradition of dedicated service.

This year we inaugurated the ILADEF “Pioneer Award” which was established to recognize individuals who have made seminal contributions in the field of tick-borne illnesses. The first recipient of this award was Dr. Nick Harris founder and Chairman of IGeneX. His work in this field is known and respected by medical professionals, scientific researchers and patients around the world.

A special note of thanks to Dr. Shea who dedicated his efforts during the past two year to increase the professional visibility and statue of ILADS. Under his direction ILADS membership and revenues have grown by more than 50%. I look forward to his continuing service on the Board as immediate past president and as the newly elected Chair of the ILADEF. I also wish to applaud the work of our Executive Director, Barbara Buchman and her national staff who did such an outstanding along with Dr. Shea in the planning, organization and management of this year’s ILADS conference in Dan Diego.

Daniel J. Cameron, MD, MPH
President, ILADS

 

ILADS Salutes Dr. Shea

Dr. Leo Shea was presented a congratulatory award by Dr.Daniel Cameron at the San Diego conference to recognize his outstanding accomplishments as ILADS President during the last two years. Under Dr. Shea’s diplomatic guidance, ILADS greatly enhanced its national recognition and increased membership dramatically. He was also instrumental in expanding ILADS educational conferences and outlining a long term strategy for the organization’s growth. Our sincere thanks to Dr. Shea for his dedication and effort.

Lyme Book Launched

Dr. Richard Horowitz’s groundbreaking new book, WHY CAN’T I GET BETTER? about diagnosing, healing and treating Lyme and chronic illness, goes on sale today! Please spread the word to your friends, colleagues and organizational members and put this book on the bestseller list. It will really advance our cause. The book is on sale everywhere books are sold and on Amazon at: www.amazon.com/Why-Cant-Get-Better-Solving/dp/1250019400.

 

Editor's Correction

In the last issue of ILADS NEWS, there was a story in which Dr. Kenneth Liegner was quoted. It was not made clear that this was an excerpt from the letters to the editor section of the Poughkeepsie Journal.

 

The San Diego Lyme Conference

The 2013 ILADS fall annual meeting was an incredible success on many levels. The day before the meeting, ILADS offered the first ever Lyme Basics course designed for practitioners who do not yet have experience treating Lyme. The full day course played to a sold out audience of 150 attendees, who gave us outstanding feedback. The conference itself had exceptional speakers, including Dr. Amram Katz on IVIg, Dr. Joe Brewer on mycotoxins, and Dr. Hassan Abdullah on POTS. Thirty-six new practitioners applied for membership by the end of the meeting. To view photos from the conference, click here.

We are already planning the next meeting in DC on October 10-12, 2014. If you want to recommend any speakers whom you believe would make excellent contributions to the conference, please contact Dan Cameron or Dan Kinderlehrer. To learn more about upcoming conferences, click here.

 

Vitamin D For Diego Was Strong

The exhibitors at the recent San Diego ILADS conference were very encouraged by the enthusiastic medical professionals in attendance. In total, there were 27 booths. ILADS adopted a new incentive for the attendees this year. Using a blank bingo card, we inserted the names of the companies onto the sheet and asked the exhibitors to stamp each attendees card as they visited their booth. Once the attendee had all booths filled in, they would then be entered into a drawing. The grand prize was a three night hotel stay at Paradise Point Resort. It was a great success and Rita Rhoads, CRNP claimed the reward! Look for new incentives in the upcoming conference!

 

The John Druille Award

After his death, this unique award was started to memorialize the work of John Drulle, MD, husband of ILADS’ member Emilia Eiras, MD. Dr. Drulle was an inquisitive doctor who tried all kinds of unconventional and creative ways to help his patients beat chronic Lyme disease. The John Drulle Award is given to a speaker at the ILADS meeting who shows the spirit of John Drulle in treating patients. This year’s award was given to Daniel Cameron, MD, MPH.

 

Lyme Loonies Limited Edition Prints Raise Funds For Physician Training Program

These are two of eight limited edition signed and numbered prints sold at the 2013 ILADS Gala Awards Dinner to raise funds for the ILADS Physician Training Program. These make great gifts or can be used to hang in waiting rooms or patient exam rooms. Print size: 12" x 14.5". To find out more about owning your own Lyme Loonies Limited Edition Prints, e-mail contact@ilads.org. These will be available in the online store for holiday giving shortly.

 

A Conversation with Robert C. Bransfield, MD, Past President, ILADS & ILADEF

What significant or positive progress has been made in last 15 years for Lyme disease?

As a psychiatrist throughout my entire career I have found myself treating many patients with poorly understood diseases that were considered imaginary because there has been difficulty for many to understand the true nature of their conditions and the high level of complexity of Lyme disease invites confusion and intense controversy.

I was surprised and puzzled at the rigidity and demeaning attitude I saw in some of my colleagues surrounding this condition and have attempted to understand this better. Without understanding to cause for this narrow and rigid definition of Lyme disease, many of us saw the need to better organized physicians, other clinicians, patients and advocates.

In the fifteen years the Finnish Lyme Borreliosis Association and other groups have existed and become stronger we have had an impact and the significance of Lyme disease has become increasingly apparent to the public and to the medical community. Collectively we have had a strong global impact.

I was still puzzled by the resistance that prevented the advancement of medicine and science in regard to Lyme disease. The reason for the resistance became apparent in a scene in the middle of the movie “Under Our Skin” when Dr. Willie Burgdorfer, who discovered Borrelia burgdorferi, the spirochete causing Lyme, stated—“The controversy in the Lyme disease research is a shameful affair and I say this because the whole thing is politically tainted. Money goes to the same people who have for the last 30 years produced the same thing—nothing.”

After some additional research it all made sense. A highly influential group was highly invested in defining this disease by antibody testing regardless of clinical realities. Those invested with the immune based definition were mostly a series of US National Institute of Health microbiologists, the bench scientists and research physicians who received grant money from them and many well intentioned physicians who viewed their research with authority. On the other side were physicians and other clinicians who valued clinical judgment and had the long term responsibility of caring for Lyme patients.

The Lyme disease controversy is now reaching a tipping point. After many years the US Center for Disease Control is beginning to recognize the magnitude of the Lyme disease epidemic and also recognize most patients receive longer courses of antibiotic treatment. Thanks to all in Finland and everywhere around the world for being a part of this effort!

What do you think is the biggest problem in LD patients and what are you hoping to happen?

The biggest problem with Lyme disease is a movement to replace traditional medicine that emphasizes the patient physician relationship, listening carefully to the patient, a thorough exam and individualized clinical judgment with a centralized power healthcare system that instead empowers a rigid significance of certain tests and guidelines.

Technology and the medical industrial complex helps us advance science and medicine but it must serve and empower the physician patient relationship and not compete and detract from it.

I am hoping the flaws of much of the current immune based testing is becoming increasingly obvious and will be eventually replaced with more reliance upon DNA, microarray testing and culturing. I would also hope the current cooperative efforts will continue to advance our knowledge of tick-borne diseases throughout the world.

 

Experiences of a Lyme Literate LCSW

by Nancy Baumgartner

Obtaining a correct diagnosis for tick-borne infections is a precarious process, even in apparently clear-cut cases. Teenagers, particularly those who have experienced trauma and loss, face special complications in this process.

A disseminated infection that undergirds primarily neurocognitive and/or psychiatric symptoms such as: mood swings, insomnia, fragmented sleep, panic/anxiety, depression, problems with memory and focus, headache, inertia, migrating pains, etc… are usually attributed to mere stress and grief marinated in teenage hormones. If the inflammation producing infection goes undetected and untreated, therapeutic work will prove to be an exercise in futility. It will ultimately increase a sense of resignation at best, and incite hopelessness and despair at worst. I am delighted to say that this was not the case for a bright high school student named Beth.

Her mother reported that Beth- then a freshman- would not attend school because of grief over her father’s death only months prior. Beth would spend hours on the couch, often in the dark, fiercely guarding her solitude. My visit to the lovely rural home, situated near a peaceful stream and surrounded by lush woods, yielded a brief peek at a somber, silent figure huddled in a dark room, fully folded into a gray hoodie sweatshirt. I did not make Beth come out and talk.

A conversation with Beth’s mother revealed that Beth had been experiencing symptoms long before her father’s death, and that he had helped her with the insomnia and panic attacks that began when she was eleven years old. After further discussion and information gathering, I provided Beth’s mother with a few articles on tick-borne infections along with the ILADS psychiatric brochure. These materials informed her decision to make an appointment with a lyme-literate doctor for Beth.

Toward the end of the last school year, Beth’s mother told me that Beth had been diagnosed with and was being treated for borrelia and bartonella. The most recent update came happily bounding into my office last month: all glorious, glowing, and hugging, now-sophomore Beth, who reported that she “has returned to the land of the living”, and wants to help other kids with lyme “any way she can”. There is no way anything in life can feel as good as moments like these!

Beth is now free to grow, grieve her father, live life, and actually benefit from our counseling sessions because she can fully participate in the process without being waylaid by an inflamed brain. Too often what we think we know obscures what we need to know. Looking at Beth through a narrow lens that allowed only for some truth to be identified would likely have left her with a greatly diminished life. The recognition and treatment of Beth’s infection has resulted in a life restored, and ignited a desire in her to help restore the lives of others. If that doesn’t ripple joyfully through eternity, what does?

 
Help Wanted!
If you know of a practitioner in the San Francisco Bay area wanting to join a busy Lyme practice, please contact bbuchman@ilads.org for an introduction.
Kevin Green, MD
Dr. Green has opened a functional medicine practice in Osh Kosh, WI. Green Medical Practice
can be reached at
920-651-3600.
 

Dr. Kinderlehrer Featured In Expert Beacon News

Daniel A. Kinderlehrer, M.D. is a nationally recognized holistic physician with expertise in the fields of nutrition, allergy, environmental medicine, Lyme disease and the healing of mind-body-spirit as a unified whole. Dr. Kinderlehrer co-founded The New England Center for Holistic Medicine in Newbury MA, and has taught extensively, including practitioner training courses at the National Institute of Behavioral Medicine and The Omega Institute. He coauthored The Antioxidant Save-Your-Life Cookbook and is the author of several review articles in medical journals and the Lyme Times. His integrated medical practice in Boulder, CO focuses on the diagnosis and treatment of tick-borne disease.
To view online, click here.

CQ Researcher Addresses Lyme

The CQ Researcher published an article today on Lyme disease. In the Pro’s and Con’s section, they used Sheila Statlender's, PhD recent legislative testimony and that of a local IDSA “authority”, Dr. Robert Pinsky. Both of which can be found by clicking here.

Dr. Pinsky’s testimony is primarily negative opinion regarding ILADS. This publication is widely used by “students” of current news items - the students are often attorneys and congressional leaders looking for background information. Unfortunately, one must purchase the article.

ILADEF News

ILADEF has produced a thirty second and sixty second PSA for distribution and to create awareness about Lyme Disease and to engage the community to The Power Of US. Please email contact@ilads.org if you would like access to the PSA for your radio contacts.

 

Huffington Post Goes Global To Spearhead Lyme Disease Awareness

The 300,000: In the Huff Post “Ticks” Part 14
Written By C.M. Rubin

Today in Part 14 of "Ticks," I have invited two leading Lyme disease doctors to comment on some of these major issues. Fresh off his recent appearance on the Katie Couric show, it's my pleasure to welcome clinician and author Dr. Richard Horowitz (Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease, St. Martin's Press). Additionally, I asked Dr. Daniel Cameron to weigh in. Dan just began a reprise of his presidency of the International Lyme and Associated Diseases Society (ILADS). He has testified as an expert on Lyme disease for legislation in Connecticut, Massachusetts, and Pennsylvania, and been featured as a Lyme expert on national media, including NBC's Today Show and ABC's Good Morning America. Read Entire Article.

Read Parts 1 to 13 of The Global Search for Education: “Ticks”:
Written By C.M. Rubin

More Research - Read Article

The Guidelines - Read Article

Prevention - Read Article

Research - Read Article

France - Read Article

Germany - Read Article

Norway - Read Article

In Search of Solutions - Read Article

Canada - Read Article

Australia - Read Article

UK - Read Article

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Task Force Testifies In Favor Of Lyme Bill

The Massachusetts Lyme Legislative Task Force, a group of patient advocates from throughout the Commonwealth, testified on Wednesday, November 13 before the Joint Committee on Financial Services, with an overflow crowd in attendance. The hearing concerned the passage of H.989, a bill that would require insurance companies to cover antibiotic treatment for Lyme as prescribed by a physician. The bill, authored by Rep. Theodore C. Speliotis (D-Danvers) is co-sponsored by 36 state legislators in the House and Senate.

Currently, there are conflicting treatment guidelines in the medical literature: some limit antibiotic treatment to 28 days, while others treat according to patient response. Although legislation enacted in 2011 (General Law section 67, Chap. 112, Section 12DD) enabled physicians to treat Lyme disease for longer than a month without censure, insurance companies often refuse to cover the expense of such treatment, citing the more restrictive guidelines. As a result, many patients have been unable to afford the treatment prescribed for them.

“H.989 is a patient protection bill that closes the gap between the physician’s recommended treatment plan and the patient’s ability to pay for it,” said Dr. Sheila Statlender, a psychologist practicing in Newton and a member of the Task Force. “Having seen so many lives ruined by Lyme disease, I know how important it is to have Lyme patients get adequate treatment as soon as possible.” Dr. Statlender also served on Governor Patrick’s Lyme Disease Commission last year. The Commission’s report recommended this legislation.

The Massachusetts Department of Public Health reported 5,050 total cases of Lyme disease in 2012. However, a recent CDC study reported that the actual cases are ten times higher, bringing cases in Massachusetts to over 50,000. Lyme disease is pervasive throughout the Commonwealth. The loss in productivity can be costly to families: a 2011 survey by LymeDisease.org noted that 44% of Lyme patients nationwide had to stop working during their illness, and 28% of those were debilitated for over a year. In the MA Lyme Commission Report, it notes that chronic illness accounts for 84% of healthcare costs. Only 21% of this figure is due to the cost of treatment, while 79% is due to lost economic output or productivity loss.

Additional members of the Massachusetts Lyme Legislative Task Force include Helen Brown of Whitman, Donna Castle of Groton, Janice Dey of Westport, Susan Fairbank-Pitzer of Danvers, Sharon Hawkes of Lenox, Jayme Kulesz of Groton, Patricia McCleary of Sturbridge, and Michelle Treseler of Newton.

The Task Force would like to acknowledge the contribution of LymeDisease.org Executive Director Lorraine Johnson, JD, MBA in analyzing the financial cost of illness of Lyme disease, and would also like to thank the following for providing written testimonies for the hearing: Pat Smith, President, Lyme Disease Association; Brian Fallon, MD, PhD, Director of the Lyme and Tick-Borne Diseases Research Center of Columbia University Medical Center; Leo Shea, PhD, immediate past president of the International Lyme and Associated Diseases Society; and Steven Phillips, MD, past president of the International Lyme and Associated Diseases Society.

 

ILADEF Honors The Top Social Ambassadors

Did you know that there are Social Ambassadors who work tirelessly to advocate on behalf Lyme Awareness and the ILADEF physician training program? Neither Vicki Petsy nor Annie Labrie were present to receive their round of applause from the doctors attending the recent gala in San Diego. However, Dr. Horowitz did a shout out to each of them as well as to the other Ambassadors. Congratulations from ILADS to you and your peers. We are so very appreciative of your efforts to spread the word about chronic Lyme and ILADS doctors. View All Social Ambassadors.

VICKI PETSY

I am interested in becoming an ILADS Social Ambassador because I believe so many of us already are. We work together through the social medias to raise awareness. We may be just passing the same information back and forth to each other but it\’s all worth it when it’s intercepted by just one new patient who may have been struggling for weeks or even years, not knowing what was wrong with them until one of our posts crosses their path.I had been busy myself taking care of my very sick 18 year old son. He had been struggling for some time to get treatment when I knew it was Lyme but I couldn\’t get a doctor in KY to listen to me. After finally finding an excellent LLMD, I was so busy in caring for him that I neglected myself and was bit in 2012. It is what brought me down. It turns out that I actually had it most of my life and had no idea. I had odd illnesses and surgeries, never connecting them to Lyme until I became educated about Lyme and talked to our LLMD. We are pretty sure I gave it to my kids as well. I cannot sit idly by and watch what was happening around us. I am now a board member & webmaster for the Kentuckiana Lyme Support Group. I take care of our Facebook page and our website. Coxs Creek, KY, US

TRISH MCCLEARY

Years of misdiagnosis left me paralyzed and unable to speak in June of 2006. Thanks to Lyme specialists and my family who helped me regain quality of life I’ve gone from patient to advocate and now legislative advocate. Actively working in MA to bring the change we need and am a Governor appointed member of the MA Lyme Commission. I am founder of S.L.A.M. (Sturbridge Lyme Awareness of MA) and the “Ribbons Across America” campaign you may have heard about. It’s time we talk about Lyme and it’s time we insist on the care we deserve. Education and awareness are key. When I know my children have access to their meds without having to self pay I will rest. Until then there’s work to be done. Together we can make a difference! Sturbridge, MA, US

ANNIE LABRIE

I am currently facing my second battle with Lyme Disease. After being diagnosed with Lyme Meningitis in August of 2012, I received a second diagnosis of Lyme Disease with associated Bannwarth’s Syndrome on July 29, 2013. In both cases, I’ve had to fight, along with Lyme-Literate Physicians to get the appropriate, individualized care that I’ve needed, which has included a PICC line with ceftriaxone after failed attempts with oral doxycycline. After poor experiences with two hospitals and their Infectious Disease staff, I am left with a passion to serve the community as an educator and an advocate. There is a huge need for the truth to be made known about this dangerous epidemic. The CDC & IDSA are attempting to limit individualized, patient care, preventing those battling Lyme Disease from receiving treatment based on their symptoms, as with any other infectious diease or illness. Experience has shown me that if I had been left in the hands of Infectious Disease alone, I could now be dead. My son, who is 8 years old, had Lyme disease in June. His only symptoms were a low grade fever and headaches. My husband & I pushed to have him tested because of our history. His Western Blot was +. He was treated early. However, he has recently had joint pain & swelling and is undergoing another 3 week treatment of oral doxycycline. Lyme patients should be treated individually, based on their symptoms. I am honored to be serving for ILADS as a Social Ambassador and hope to do what I can to help educate and advocate in my community and beyond. Rehoboth, MA, US

JULIE CONRAD

ILADS also honors Julie Conrad who jumped to the top of the social ambassador program just after the deadline for the competition.

 

Letters to the Editor:

November 11,2013

Dear Fellow ILADS Members,

Upon my return to the Philadelphia area from San Diego, I wrote this letter to share some insights in to the recent annual scientific meeting of ILADS in that lovely California city. First, Barbara Buchman, our Executive Director, and her entire team gave us a sterling performance on how to organize an incredibly complex venture-moving our cornucopia of speakers, support, equipment, literature etc., offering personal guidance and welcoming material for each speaker and guest - across an entire continent, landing them on their feet ready for action.

And, action there was! The fast paced program skipped no beats, was universally helpful and very often enjoyable. The entire meeting was void of any negatives and it was fun. lt represented an opportunity to meet and talk with colleagues about mutual interests and concerns.

I hope all members will consider attending next year's meeting in Washington, DC.

With my best wishes,
Virginia T. Sherr, MD

 
ILADS SAN DIEGO PHOTOS