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Below you will find the 2014 ILADS' Newsletters. You may read them online or download the pdf. Please note that many of the links are outdated.

ILADS NEWS header

Dear ILADS Member,

We hope that everyone is enjoying the summer months. ILADS has been very productive since our last newsletter, as outlined in the message from our President, Dr. Daniel Cameron. We look forward to seeing everyone at the annual meeting in October.

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

PRESIDENT'S MESSAGE

ILADS PUBLISHES NEW GUIDELINES  

ILADS has released its new treatment guidelines.
The 2014 ILADS guidelines highlights included:

  • Laboratory testing is meant to contribute to rather than to supersede physicians' judgment.
  • Clinical judgment is necessary to identify individuals who may benefit from antibiotics to avoid preventable persistent, recurrent, and refractory Lyme disease.
  • Empiric treatment should be considered as routine treatment of patients for whom Lyme disease is a likely diagnosis.
  • The previously recommended practice of stopping antibiotics to allow for a delayed recovery is no longer recommended for patients with persistent, recurrent and refractory Lyme disease.
  • Duration of therapy should be guided by clinical response rather than any arbitrary 30-day treatment course.
  • A reasonable course would be to continue therapy to treat Lyme disease, after clinical and laboratory abnormalities are resolving and symptoms have resolved.
  • Indications for retreatment should be broadened from meningitis, heart block, and arthritis to include symptomatic presentations.
The 2014 ILADS evidence based treatment guidelines working group was led by Cameron, DJ, Maloney B, and Johnson with contributions from the entire ILADS board of directors and outside reviewers. The guidelines cover 3 common clinical scenarios faced by clinicians – management of a known tick bite, antibiotic treatment of patients with erythema migrans, management of patients who remain ill following antibiotic therapy for Lyme disease.
 
ILADS’ guidelines are the first set of Lyme disease guidelines that follow the GRADE format and the first set to comply with the 8 standards identified by the Institute of Medicine identified as being critical to the development of trustworthy guidelines.  GRADE is systematic and transparent analysis of the evidence as a whole used by several organizations including Cochrane Collaborative and the World Health Organization.
 
Using GRADE, a single dose doxycycline study was poorly designed; results only relate to prevention of an EM rash and NOT prevention of non-EM early disease or late Lyme disease.  Moreover, antibiotic regimens with durations of 20 or fewer days for the treatment of EM rashes had unacceptably high failure rates.  The quality of the evidence regarding the effectiveness of antibiotic retreatment in patients with persistent symptoms following standard and appropriate antibiotic therapy for Lyme disease is very low, implying that the true effectiveness of retreatment is likely to be substantially different from the effectiveness rates seen in the four NIH-sponsored retreatment trials.  For example, in a well-designed trial of antibiotic retreatment in patients with severe fatigue, 64% in the treatment arm obtained a clinically significant and sustained benefit from additional antibiotic therapy 
 
The guidelines conclude the following 1) Low quality of evidence necessitates that recommendations be made on a risk-benefit basis that provide therapeutic options as opposed to dictating a given approach, 2) clinical judgment is essential element of patient management,  and 3) shared decision making is because the scientific evidence is uncertain and patients vary with regard to disease severity, therapeutic goals, willingness to assume the risks associated with antibiotic treatment and/or not treating an ongoing infection.
 
Examples of recommendations include: 
 
Recommendation 2a: Treatment regimens of 20 or fewer days of phenoxymethyl-penicillin, amoxicillin, cefuroxime or doxycycline and 10 or fewer days of azithromycin are not recommended for patients with erythema migrans rashes because failure rates in the clinical trials were unacceptably high. Failure to fully eradicate the infection may result in the development of a chronic form of Lyme disease, exposing patients to its attendant morbidity and costs, which can be quite significant. (Recommendation, very low-quality evidence).
 
Recommendation 2c: Clinicians should provide ongoing assessments to detect evidence of disease persistence, progression or relapse or the presence of other tick-borne diseases. Lacking a test of cure, ongoing assessments are crucial for determining if treatment has been clinically effective. (See Remarks following Recommendation 2f) The first assessment should immediately follow the completion of therapy and subsequent evaluations should occur on an as-needed basis.  (Recommendation, very low-quality evidence)
                                                                                  
Recommendation 2d: Clinicians should continue antibiotic therapy for patients who have not fully recovered by the completion of active therapy. Ongoing symptoms at the completion of active therapy were associated with an increased risk of long-term failure in some trials and therefore clinicians should not assume that time alone will resolve symptoms. (See Remarks following Recommendation 2f.) There is a wide range of options and choices must be individualized, based on the strength of the patient’s initial response. Dosage ranges for oral agents are as noted in Recommendation 2b.
 
Strong to moderate responses favor extending the duration of therapy of the initial agent at the same dosage. Modest responses may prompt an increase in the dosage of the initial antibiotic or a switch to a different first-line agent. Tetracycline, with a total daily dose of 1000 -1500mg in 3 or 4 divided doses, is an additional option.[1,2] Due to its favorable pharmacokinetics, tetracycline may be more effective than doxycycline when initial therapy is non-curative.[2]
 
Minimal or absent responses suggest a need for a combination of first-line agents, which includes at least one antibiotic that is able to effectively reach intracellular compartments.[2,3] Injectable penicillin G benzathine (Bicillin LA), totaling 1.2 -3.6 million units weekly, or intravenous agents such as ceftriaxone are other options. Intramuscular benzathine penicillin avoids the risks associated with gaining intravenous access and it was effective in seemingly recalcitrant Lyme arthritis.[4] Ceftriaxone, 2 grams IV per day is known to be effective [5-10] and IV cefotaxime [11], another cephalosporin, has also been recommended. IV penicillin is less effective and requires more frequent dosing.”[12] Additional IV cell wall agents from the carbapenem and monobactam classes were effective in vitro but have not been studied clinically.[13]
 
For the full GRADE assessment and recommendations, see Expert Review of Anti-Infective Therapy.  
 
Daniel Cameron, MD, MPH
Elizabeth Maloney, MD
Lorraine Johnson, JD, MBA
 
  • Steere AC, Hutchinson GJ, Rahn DW et al. Treatment of the early manifestations of Lyme disease. Ann Intern Med, 99(1), 22-26 (1983).
  • Donta ST. Tetracycline therapy for chronic Lyme disease. Clin Infect Dis, 25 Suppl 1, S52-56 (1997).
  • Donta ST. Macrolide therapy of chronic Lyme Disease. Med Sci Monit, 9(11), PI136-142 (2003).
  • Cimmino MA, Moggiana GL, Parisi M, Accardo S. Treatment of Lyme arthritis. Infection, 24(1), 91-93 (1996).
  • Dattwyler RJ, Halperin JJ, Pass H, Luft BJ. Ceftriaxone as effective therapy in refractory Lyme disease. J Infect Dis, 155(6), 1322-1325 (1987).
  • Dattwyler RJ, Halperin JJ, Volkman DJ, Luft BJ. Treatment of late Lyme borreliosis--randomised comparison of ceftriaxone and penicillin. Lancet, 1(8596), 1191-1194 (1988).
  • Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med, 323(21), 1438-1444 (1990).
  • Logigian EL, Kaplan RF, Steere AC. Successful treatment of Lyme encephalopathy with intravenous ceftriaxone. J Infect Dis, 180(2), 377-383 (1999).
  • Krupp LB, Hyman LG, Grimson R et al. Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology, 60(12), 1923-1930 (2003).
  • Fallon BA, Keilp JG, Corbera KM et al. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology, 70(13), 992-1003 (2008).
  • Pfister HW, Preac-Mursic V, Wilske B, Schielke E, Sorgel F, Einhaupl KM. Randomized comparison of ceftriaxone and cefotaxime in Lyme neuroborreliosis. J Infect Dis, 163(2), 311-318 (1991).
  • Steere AC, Green J, Schoen RT et al. Successful parenteral penicillin therapy of established Lyme arthritis. N Engl J Med, 312(14), 869-874 (1985).
  • Hunfeld KP, Weigand J, Wichelhaus TA, Kekoukh E, Kraiczy P, Brade V. In vitro activity of mezlocillin, meropenem, aztreonam, vancomycin, teicoplanin, ribostamycin and fusidic acid against Borrelia burgdorferi. Int J Antimicrob Agents, 17(3), 203-208 (2001).

ILADS Marks Fifteen Years with 2014 Annual Conference in Washington, DC

 
The calendar will read October, but as the official tourist site for the nation’s capital heralds:  Summer lasts even longer in DC!  So why not plan on attending the 15th annual ILADS conference and test this hypothesis!
 
The event opens on Thursday, October 9th with the ILADS course: The Fundamentals of Diagnosing and Treating Tick-Borne Illness.  Speakers for this day-long program include Richard Horowitz, MD, treating physician and author of the NY Times bestseller Why Can’t I Get Better?: Solving the Mystery of Lyme and Chronic Disease. Additional course instructors include Joseph Burrascano, MD, Daniel Kinderleher, MD, Steven E. Phillips, MD, and Ginger R. Savely, DNP, FNP. 
 
Those who should consider taking this ILADS course include medical professionals new to treating patients with tick borne infections as well as those wishing a refresher course on the fundamentals of diagnosis and treatment.  Nurse practitioners and physician assistants who work with Lyme literate physicians should also plan on attending.
 
Registration options, as well as the course program may be found on the ILADS website.
 
The main attraction, the scientific portion of the ILADS conference, follows immediately after the Fundamentals course.  Registrants can begin Thursday evening activities with a viewing of the Washington, DC premiere of Under Our Skin 2: Emergence.  Filmmaker Andy Abrahams Wilson will be on hand for the screening.  This second installment of Under Our Skin looks at the progress made by several patients and physicians featured in the first documentary.
 
ILADS closes out Thursday with a reception open to attendees and invited representatives from Capitol Hill.
 
Friday, Saturday, and Sunday, learn from those who have direct patient contact and experience treating the neurological issues associated with lyme and other tick borne infections.  What have they learned? What works well with patients? What needs to change? All conference attendees will receive copies of the Executive Summary from the updated ILADS treatment guidelines issued on August 1, 2014. Breakout sessions will allow for further discussions and questions.
 
The conference will be held at the Grand Hyatt Washington at 1000 H Street NW in downtown Washington, D.C.  Located at DC’s Metro Center, conference participants will find themselves in walking distance of the White House and other cultural attractions. The Orange, Red, Silver, and Blue train lines run from the Metro Center station near the hotel, allowing attendees the freedom to explore the wonders of Washington, D.C.
 
Registration for professionals and non-professional travel companions may be completed easily on line at www.ilads.org.
 
ILADS Executive Director Barbara Buchman and her staff look forward to greeting you all in Washington, D.C.

ILADS Reaches Out to NJ Healthcare
Providers and now the Public

  
MonmouthOn Saturday, September 13, 2014, ILADS members Dr. Joseph Burrascano and Dr.Robert Bransfield will present a half-day workshop titled Overview of the Fundamentals of Diagnosis & Treatment of Lyme Disease and Co-infections with an Emphasis on Neuropsychiatric Issues. The workshop will be held at Monmouth University, West Long Branch, NJ.
 
The course is now open for those who want to attend for non-CME credit at a cost of $150. For those taking the course for CME credit, the cost is $200.  
 
More information and registration details are here.
 
In an effort to reach doctors still in their training years, the John Drulle Memorial Lyme Fund generously providing funds to cover the costs of New Jersey based medical doctors in hospital residency programs.
 
ILADS would like to thank the John Drulle Memorial Lyme Fund for its financial support and continuing commitment to the ILADS mission of education about Lyme and its associated diseases.
 
Learn more about the John Drulle Memorial Lyme Fund at: www.johndrullelymefund.org

ILADEF’s Pioneer Award to be given to a “Ray of Hope”.

 
Ray of HopeEach year, the International Lyme and Associated Diseases Educational Foundation (ILADEF) hosts a gala charity dinner to raise funds to support its Physician Training Program, Lyme Basics Course and other educational and training programs presented regionally and internationally. As part of the annual event, ILADEF honors a professional for his or her dedication to the advancement of diagnosis and treatment of Lyme and other tick-borne illnesses. 
 
This year, ILADEF will present the Pioneer Award to Charles “Ray” Jones, MD, the pediatrician who has been a Ray of Hope to thousands of children and their parents who struggle with the consequences of Lyme and other associated diseases. Dr. Jones, like other medical pioneers before him, has had to withstand the scrutiny and criticism of his peers as well as, professional and governmental organizations in his ground-breaking work. In the course of his seminal work treating children with tick-borne illnesses, Dr. Jones has always been committed to his promise to the Hippocratic Oath:  First, do no harm.  His dedication to healing children with these illnesses means that his patients will grow up to optimize their potential and experience a successful future. 
 
Like most pioneers, his perseverance has come at an enormous cost. His customized approach in treating children with Lyme and its associated diseases has been challenged by power professional and governmental forces who disagreed with his treatment methods.  Despite substantial legal costs and as well as a negative impact to his practice and health, Dr. Jones was not deterred from a course which he knew to be right. With courage and determination, he continued to dedicate his life to his patients and their families. In turn, his patients, families, colleagues and others supported him throughout his ordeal.   
 
Now is your time to show your appreciation for all that he has done to enhance the lives of others. We invite you to attend ILADEF Gala to celebrate the accomplishments and courage of Dr. Jones, this “Ray of Hope” for children with tick-borne illnesses. Make your reservations to attend the Pioneer Award Dinner at the ILADS Washington Conference website
 
For those of you who cannot come to Washington but would like to honor Dr. Jones, you can show your appreciation for his life and work by making a donation in his honor at the ILADS conference website.  Money raised in honor of Dr. Jones will support educational initiatives, including teaching pediatricians about treating Lyme and its associated diseases.  

Classified Ads- Seeking Office Help

 
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Contact:  scottsdalemedical@gmail.com


Nurse practitioner or Naturopathic Doctor
Very busy, fast-paced clinic in Amherst, NH looking for a qualified nurse practitioner or naturopathic doctor interested in treating tick-borne diseases for a contract position 4-5 days a week (Saturdays if desired).  Please contact us at assistgreenhouse@yahoo.com or 603-249-5771 for more information.


Advanced Practice Provider (Nurse Practitioner) for Integrative Clinic 
Holistica Integrative Care - Boulder, CO
Seeking a nurse practitioner to join our busy, integrative medical clinic three days per week. No weekends or call. This position is non-salaried; pay structure is based on a percentage of patient visits and supplement sales. This is an opportunity to build a thriving practice through referrals from our medical doctor and naturopathic doctors and learn about botanical medicine, homeopathic therapy, nutraceuticals, and treating acute and chronic illness including Lyme through natural means.
Qualifications
  • Graduate from an accredited nurse practitioner program.
  • Licensure in the State of Colorado in good standing.
  • Current BLS certification from the American Heart Association.
  • Prescriptive authority and DEA certification a must.
  • Ideal candidate will have family practice experience and training in Functional/Integrative Medicine with an interest in learning how to treat patients desiring a collaborative and natural approach to healing.
  • Candidate must have excellent verbal and written communication skills to effectively interact with a diverse patient population.
Please email a cover letter and resume to Mary Shackelton, ND at mary@holisticacare.com.

Executive Summary on
NY State Lyme Task Force

The Senate Majority Coalition Task Force on Lyme and Tick-Borne Diseases was convened on October 8, 2013, to address rising concerns in New York State regarding the outbreak and spread of Lyme and Tick-Borne diseases. The Task Force was charged with examining state and federal efforts to combat the continued spread of these diseases and make recommendations for submission to the New York State Department of Health for a State Action Plan to facilitate improved prevention, diagnosis, and treatment protocols in order to better protect New York residents.

While Lyme and Tick-Borne diseases have had a significant history in New York to date, recent events have raised the level of alarm regarding the broader consequences that these diseases may have - in significant contrast to information that was previously reported. According to new analyses of State Health Department records, over the past thirteen years, Lyme disease was listed as the cause of death for nine New Yorkers, outside of New York City. Five of the victims lived in the mid-Hudson Valley. Given the tragic consequences of Lyme and Tick-Borne diseases, the Senator Majority Coalition Task Force recognizes this epidemic as a pressing public health crisis, and has initiated steps to create a comprehensive statewide response.

Lyme disease is a bacterial infection spread through the bite of infected ticks. The blacklegged deer tick (ixodes scapularis) is primarily responsible for the spread of the disease in the northeastern, mid-Atlantic, and north-central United States. If left untreated, the disease can cause a number of health problems, including a serious infection that can spread to the joints, heart and nervous system. Treatment efficacy and the likelihood of long-term health effects largely depend on timely diagnosis and treatment plans. According to the Department of Health, since Lyme disease first became reportable in 1986, over 95,000 cases have been confirmed in New York State and the number is still growing.
 
The report goes on from here.  To view the entire document go to www.ILADS.org  and click on News from ILADS.

 

ILADS NEWS

 
Please check out our new ILADS.org tab under the NEWS section for news of interest to the Lyme Community.  You will find interesting articles such as a recent story out of Old Dominion University citing the tick count is vastly underreported.  To see the story click here

 

ILADS Experts Joined Colleagues for International Vector-borne Diseases Conference in Oslo, Norway

 
A Norwegian patient interest group calling itself NorVect sponsored its first ever conference in Olso this past May in an effort to bring together experts on vector-borne diseases, including Lyme and its associated diseases.  In attendance were several ILADS members and presenters Joseph Burrascano, MD, Richard Horowitz, MD, and Alan MacDonald, MD along with researchers Ed Breitschwerdt, DVM, Eva Sapi, PhD and Jyotsna Shah, PhD.
  
NorVect, according to its website, is a newly-formed organization “founded and run solely by patients with the desire to make a difference.”  The organization’s mission focuses “on research, focus on dialogue, and focus on the patients are the cornerstones of our organization.”
 
Blogger Huib Kraaijeveld reporting on the conference noted: The content was divided in two topics: how to find Lyme and how to treat it. Day one was spent on assessing and testing Lyme. The main question was how to best assess complex diseases that can have more than one cause (as opposed to the Pasteur postulation that every disease has a single cause, which dates from 1800) to help doctors and patients to best assess what is the matter.
 
NorVect will host its next conference from May 30-31, 2015, also in Oslo.

 

Lyme News From Canada

 
ILADS will be sponsoring a one day fundamentals course in Banff, Alberta on February 7. 2015.  Check our web site for more details.
 
Canada Lyme is offering grants for first time attending Canadian physicians to attend the ILADS conferences. Contact jimwilson@telus.net for more information.

Jim Wilson testified before the federal parliamentary Standing Health Committee on May 29th and then the executives of the Public Health Agency of Canada testified on June 3rd.  You can listen to the testimony here.




 

Matthew Murray and
Lyme Disease Awareness

Murrray
 
In the fall of 2009 I approached my mother about running the NYC Marathon for her and to create Lyme disease awareness, a disease that is very misunderstood. My mother agreed it was a good idea, but wanted to make sure the money donated went to the right organization, as the Lyme disease community is cluttered. So, my mother reached out to Dr. Horowitz and he suggested that the money be donated to ILADS. Thus began my journey of raising awareness and donations through running the NYC Marathon and 4MOMMA.com was born.
 
My first NYC Marathon was in 2010, which presented a major challenge after I split the bottom of my right foot wide open – about five inches long and one inch deep – exactly four weeks before the marathon on Kona covering the Ironman World Championships for Oakley.
 
Needless to say, it was difficult to stay positive, but four days before running my first ever marathon I got out and tested the foot by walking on it for the first time. In the end, the marathon was a massive physical challenge, but I finished in the arms of my mother and father – a moment I will keep ingrained in my mind forever.
 
The 2011 NYC Marathon presented its own set of challenges, but I was motivated to continue the story of my mother’s struggle with Lyme disease and how this disease needed national attention.
 
During the marathon, one moment that really stood out and will remain in my head took place around mile marker eight in Brooklyn. I was running strong but was realizing how long it takes to get around everyone when running this insane race.
As I drew closer to this bigger group that was protecting a runner with guides I glanced over to see who it was…maybe it was some celebrity or something…but no. Instead in a matter of one second my eyes weld up with tears and I was astonished at what I saw. 
It was a young man running with no arms or legs; he had returned from Iraq and wanted to run the marathon. He had prosthetic legs, but no arms, which must have made running and keeping his balance extremely difficult. 
As I pulled away and headed towards Queens, I thought to myself how fortunate we all are for those that not only protect our country but how lucky we are for our health and way of life in America.
I will never forget that young man and how it motivated me to once again to push through and finish the marathon in 2011.
 
Then in 2012 we had the mega-storm Sandy that swept through the metro area and the NYC Marathon was cancelled for the first time, which was sad on so many levels, but was the right decision.
 
And then this past year, the 2013 New York City Marathon would be my third New York marathon to raise awareness for Lyme disease and brought its own set of challenges once again, mostly because I was given notice that I was invited to run in August, which only gave me three months to train.
 
So I began running each morning from Santa Monica to Venice on the bike path and slowly built up my stamina. And this past November was one of the harsher weather conditions I had run in, but once again I was blessed to finish the marathon and in a personal best of 4:16, which was 31 minutes faster then my first marathon.
 
It’s funny – my close friends and family members ask me why I run the marathon because they know that running was never my strong suit when it came to my athletic prowess. And I tell them it’s because it’s not easy and when I feel winded or tired or cramped, I picture my mother and the pain she endures every single day with endless pills and/or injections to deal with a disease that has no end or solution in sight.
 
Ultimately, my mother is my inspiration, but so is everyone else that battles with Lyme disease because no matter how much I feel out of it or discouraged at times, all I need to think about are the millions of infected individuals that wake up each morning with no answer to this disease that is slowly taking away all their abilities.
 
In the future, I hope to find new ways to create awareness and work with ILADS and the Lyme disease community as a whole to create the awareness this disease deserves and to someday find a cure.
 
Thank you,
Matthew Murray

Back to School:
The ABCs of Lyme and Other Tick-borne Infections

 
As families transition from summer activities to back-to-school preparations, the International Lyme and Associated Diseases Society (ILADS) urges parents to think about where their children have been this summer, where they will play during recess at school, and especially where student athletes will practice or compete during sports seasons. Learning the simple ABCs of tick bites will help parents keep students safe and healthy.
 
Daniel Cameron, MD, MPH, the current president of ILADS, suggests parents watch their children who are returning from a summer away at camp for signs of possible Lyme infection. “Many people never see a tick as it’s biting; and, many people won’t exhibit what has become known as the bull’s eye rash,” said Dr. Cameron.  “However, there are other signs parents should look for including fatigue, headaches, poor concentration and joint pain.”
 
Understanding ticks and the infections they transmit is still a work in progress, Dr. Cameron noted.  Until recently, most health care providers treated a tick bite or the bull’s eye rash with one of two regimens:  one dose of 200 mg of doxycycline or three to four weeks of treatment with 100 mg of doxycycline twice a day, respectively. On August 1, 2014, ILADS released updated guidelines suggesting a change in treatment protocols. “Lyme disease is a complex illness,” noted the guideline authors. “Patients may experience both acute and persistent manifestations.”  Those persistent manifestations of the disease, said Dr. Cameron, are poorly understood and often labeled as having developed from something other than a tick bite.
 
Students can get bitten in their own backyards. However parents should instruct their children to stay out of tall grass while walking to and from school or while playing outside during recess. Parents and coaches should also be mindful of the areas around playing fields used for practice and games. Parents of students who run cross-country should talk about whether or not to use an insect repellant containing DEET, which is effective against mosquitoes and may repel ticks. Parents could also have uniforms treated with permethrin.
 
Here are the ABCs of lyme and tick-borne diseases from ILADS:
 
A - Awareness 
While people associate ticks with wooded areas, the fact is that many people get bitten in their own backyards. Ticks can be transmitted to people by pet dogs and cats.  Horses have been known to transfer ticks as well. Being aware of your environment and taking precautions can reduce one’s exposure. The University of Rhode Island hosts the TickEncounter Resource Center which provides lots of information.
 
B - Bites
The National Institute of Allergy and Infectious Diseases maintains a tick must be attached for 36 hours in order to transmit lyme, but newer research challenges that claim. Consequently, checking for ticks is the best defense available right now. Don’t allow your students to merely shower after being outside. Ticks can remain attached even after a cleansing. Don’t forget to look along the hairline. Examine your child’s back— a place they can’t see. Also, look behind the knees. If you find a tick, remove it carefully and immediately. ILADS has an instructional video.
 
C - Challenges
While some cases of Lyme disease resolve with routine treatment, many patients suffer long-term consequences. Ticks can transmit more than Lyme disease. Diagnosing associated illnesses from tick bites takes a skilled practitioner. Finding what many patients call a Lyme Literate health care provider is the key to getting better. ILADS provides patient information and can assist with finding the appropriate physician in a given area. There are also a number of Lyme patient support groups on the national, state and local levels. Those organizations also help patients find physicians.
 
For more information:
ILADS
www.ilads.org

At the Feet of the Master

My week with Dr. Charles Ray Jones
By Ginger Savely, DNP
 
SavelyRemember when you were a child and an illness or injury prompted a visit to your doctor’s office? Chances are you dreaded the experience and were bribed with the promise of a treat afterwards, especially if needles were to be involved. Now enter the waiting room of pediatrician and Lyme disease specialist Charles Ray Jones in New Haven, Connecticut. Here children play video games, watch movies, and look forward to seeing the man they view more as a lovable grandpa than as a doctor.
 
Charles Ray Jones has been treating children with Lyme disease since 1968, before the disease was named for the town in Connecticut where the first outbreak was described. He currently estimates that he has treated over 15,000 children with Lyme and other tick-borne diseases.  Health care providers from all over the world call him daily for advice and he generously gives of his time and his expertise. I was honored to spend a week training with him, observing his style of interaction with children and parents, learning his examination techniques, and generally taking in the pearls of wisdom that only a healer with many years of experience can provide.     
 
A shy, soft-spoken man, Dr. Jones has never been motivated by prestige or money.  He is the consummate old-fashioned pediatrician whose love for children and a calling to heal have been his impetus to forge ahead, swimming against the tide.  The humble doctor claims that he was the “ugliest, dumbest and least likely to succeed” in his family. He accepts his notoriety with reluctance and even a bit of bemusement. Nevertheless, it is clear that he is touched by the attention and adulation heaped upon him by scores of grateful patients and their parents.
 
Shunning the professional look of a lab coat, Dr. Jones prefers to wear a bright blue warm-up suit when he sees his young patients, a uniform that has become his signature.  “Dr. Charles Ray Jones” is embroidered across the back of the jacket with the words:  “Keep marching to fulfill the dream” under his name. His receding hairline merges with long, thick, salt-and-pepper hair that falls into ringlets at his shoulders. If you were to trade his large, thick glasses for a pair of pince-nez spectacles, you would swear you were looking at Ben Franklin in modern garb.  Like Franklin, Dr. Jones is a maverick: a humanist with a wry sense of humor and a man of deep common sense who is not afraid to challenge conventional wisdom and the powers-that-be.   
 
His fraternal twin brother’s battle with bone cancer and tragic death at the age of sixteen undoubtedly influenced Dr. Jones’ desire to pursue medicine. In fact, his pre-Lyme calling was pediatric oncology and in those days, he says, there was little to do but watch children die. With a background that includes a bachelor’s degree in Philosophy and Psychology and a stint at the Theological Seminary at Boston University (where he befriended Dr. Martin Luther King), Dr. Jones has an artistic sensibility and appreciates music, poetry, and painting.  An intuitive man, he truly practices the art of medicine, with solid science as his foundation but ultimately his senses as his guide.
 
His office is located on the ground floor of an apartment building in downtown New Haven, in the shadow of Yale University, the epicenter of Lyme denialism. Dr. Jones lives in a top floor apartment in the same building with his daughter, the son she adopted from Guatemala, and too many dogs and cats to mention. Dr. Jones loves to talk about his Guatemalan grandson whose “Incan” mind, he claims, operates on a higher spiritual plane than the average person’s. This precocious boy accurately predicts the future and writes poetry with sophistication and insight beyond his chronological age.  Dr. Jones is clearly fascinated with his grandson’s mystical mind and proud to regale the listener with anecdotes of the boy’s musings.
 
Despite his 80+ years, Dr. Jones puts in hours that would exhaust someone half his age.  He works seven days a week, seeing patients Monday through Saturday and conducting telephone follow-up visits on Sunday.  A typical weekday starts at 8am and ends at 8pm with a lunch break just long enough to wolf down some canned soup.  The proximity of his dwelling to his office makes it all too tempting for this devoted doctor to return to his work after dinner, burning the midnight oil as he reviews medical records and prepares for the next work day. Dr. Jones’ hard-working assistants are friendly and competent. They are clearly protective of and devoted to their boss, and a family feeling is quite evident in his casual office. 
 
Not one to be guarded, the doctor speaks openly of some of the more intimate details of his life. However, the authenticity of his statements is not always obvious, as a dry sense of humor and love of pulling the listener’s leg are his modus operandi. There were times when I didn’t know whether a claim was truth or fiction, although a devilish grin and glint in the eye were often, but not always, his giveaway.     
 
In fact, his dry wit is an important aspect of Dr. Jones’ style as a clinician. He teases his young patients, who all appear to enjoy it since the love behind it is clear. Some of his comments might seem politically incorrect at face value, but the children know that his goal is to make them smile. An example: A recovering fifteen-year-old boy reported that for a long time he didn’t want his friends to visit him. He was afraid they might be alarmed by the frightening motor disorder he was experiencing at the time. Dr. Jones replied: “What do you mean? You should have charged admission!”
 
Every visit includes an affectionate moment with the good doctor, who hugs and caresses the children as though they were his own. He has an amazing memory of all of his patients, recalling details from the patient’s medical history even if he had not consulted the chart for many months. He clearly loves them all. Dr. Jones is known to go above and beyond for his patients’ families as well. On one occasion I saw him provide a patient’s mother with a second opinion on the reading of her mammogram!
 
Lest you be tempted to hurry to the phone and call Dr. Jones’ office for an appointment for your child, be forewarned that he gets up to thirty such calls a day. New patient visits are at least a six-month wait. Since time is of the essence in treating children with Lyme disease, Dr. Jones’ staff will happily refer you to other health care providers who treat pediatric Lyme with Dr. Jones’ blessing.
The legal ordeal with the state medical board that Dr. Jones had to endure has become legendary.  The protracted harassment squandered his time, finances and energy.  A Google search of his name will provide the reader with details of what appears to be a shameful political vendetta against a man whose life has been devoted to helping children whom no one else would help.  He has been tolerant of the process but is growing weary of the absurdity of it all.
 
At his last hearing, the usually-patient Dr. Jones had to restrain himself from saying what he was really feeling, lest he be held in contempt of court.  A Walt Whitman poem kept coming to his mind and he thought of the lines, over and over, written more than a hundred years before. The poem brings to mind the juxtaposition of deliberation versus action, of theory versus experiential knowledge, of ivory tower medicine versus medicine in the trenches. It provides a thoughtful ending to an article about a thoughtful man.
 
                  When I heard the learn’d astronomer;
                  When the proofs, the figures, were ranged in columns before me;
                  When I was shown the charts and the diagrams,
                  To add, divide, and measure them;
                  When I, sitting, heard the astronomer,
                  Where he lectured with much applause in the lecture – room,
                  How soon, unaccountable, I became tired and sick;
                  Til rising and gliding out, I wander’d off by myself,
                  In the mystical, moist night air, and from time to time,
                  Look’d up in perfect silence at the starts.

Man vs Dog: Study on Lyme and Anaplasmosis in NJ


GaitoDr. Andrea Gaito, in collaboration with veterinarian, Dr. Vedrana Gjivoje has published a study comparing the infectivity rates of both Lyme disease and Anaplsmosis in  both humans and dogs in a community endemic for tick-borne diseases in New Jersey. The authors found the infectivity rate to be remarkably similar in both the human and veterinary population. Full text: Infection and Drug Resistance 2014:7 199-201

ILADS ANNUAL MEMBERS MEETING


The International Lyme and Associated Diseases Society will be holding its annual members meeting on Friday October 10, 2014 5:30pm at the Grand Hyatt Hotel, Washington, DC.  All members are invited to attend to learn about what your leadership has been doing this past year.  There will be a discussion about the new Treatment Guidelines and a report from the officers.  Come meet your fellow members and voice your opinions on how we can do to serve you better.
ILADS | PO Box 341461 | Bethesda, Maryland | 20827-1461 | Phone: 301.263.1080 | contact@ilads.org | www.ilads.org

Dear ILADS Member,

May is Lyme Disease Awareness month! This issue features the many projects that our members have planned. Please consider making a donation to ILADEF this month to honor the work of all of our members. Your tax deductible contribution will go a long way to promote our mission.

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

 

PRESIDENT'S MESSAGE

Greetings Colleagues,

ILADS continues to grow as evidenced by our spring conferences in Hershey, Pennsylvania and Augsburg, Germany. I was encouraged by the ever-growing number of professionals that attended these conferences that are new to the field. Their interest in the field was clearly demonstrated by the numbers that applied to be members of ILADS and expressed an interest in ILADS physician training program.

ILADS messaging is coming through loud and clear in the media. Recent coverage in the Wall Street Journal, National Geographic, Prevention Magazine and the Huffington Post

continued to encourage the dialogue we need to solve the Lyme disease problem.

The ILADS Board of Directors and staff are eagerly preparing for what should be the best professional conference yet in Washington October 10-12, 2014. The conference will continue its leadership in professional education and training. The basics course that was so well received in San Diego in 2013 will be repeated in Washington, October 9, 2014.

We always like to hear from our stakeholders, you! Please feel free to reach out to us at contact@ilads.org We always appreciate your suggestions as we continue to enhance member benefits.

Daniel J. Cameron, MD, MPH
President, ILADS

 

Ever Wondered How ILADS Is Governed?

ILADS Board of Directors consists of 10 members who are each responsible for a different aspect of ILADS work. This year, we will be replacing two current Board members whose terms are expiring at the annual meeting.

The Board meets on a monthly basis, currently the second Wednesday of each month via telephone call. In between Board members schedule evening meetings with their committees and respond to e-mails of general interest to the Board. All agree the satisfaction of service is rewarding. Each Board member has a term of three years with the possibility of one renewal. The By Laws states that all Board members need to be voting members of ILADS.

If you are interested in exploring the possibility of serving on the Board of Directors of ILADS, please contact Leo J. Shea, III, PhD, Chairman of Nominating at contact@ilads.org.

ILADS Elections

ILADS Elections will be held at the annual member meeting in October 2014 in Washington DC. We are seeking individuals who would like to be considered for board positions and help to advance the mission and goals of ILADS.

Board members are expected to participate actively in the ongoing work of the board by:

  1. Attending monthly telephonic board meetings of approximately 2 hours in duration,
  2. Chairing or participating in specific committees defined to advance the goals of ILADS with a monthly commitment of 5-10 hours of committee time,
  3. Attendance at twice-annual offsite organizational meetings of 1 day in duration and
  4. Willingness to participate in other activities as requested by the National Director.

Candidates should be voting members and have a history of development and management of organizations and have an understanding of financial and fundraising activity. Please submit a statement to contact@ilads.org of no more than 500 words indicating why you wish to be a member of the board of directors and what contributions you would bring to it.

 

NEW! Member's Presentations & Papers on ILADS' Website
Recent Member Postings

Advances in Pleomorphic Forms of Borrelia

Leona Gibert’s Presentation on 26 April 2014, ILADS European Conference, Augsburg, Germany.

The Establishment of a Blacklegged Tick Population by Migratory Songbirds in Ontario, Canada

John D. Scott, Lyme Disease Association of Ontario

If you are an ILADS member, and you would like to include papers you have written in the new public Members' Presentations & Papers section on the ILADS website, please send your paper to contact@ilads.org for consideration.

 

ILADS PRESENTS: Half Day Lyme Fundamentals Course

Registration will up shortly. If you would like to stay updated on course information, please fill out our "Stay Updated" form by cicking here

The Fundamentals of Diagnosis and Treatment of Lyme Disease & Coinfections : Implications for Adult and Pediatric Neuropsychiatric Issues

An Evidenced Based Course for Health Care Professionals. This half day course is designed to teach the practitioner how to recognize signs and symptoms in the differential diagnosis of early and late stage Lyme disease and common co-infections. Various testing techniques and treatment options will be discussed with neuropsychiatric implications for adults as well as children. The course will provide ample opportunity for Q & A and open discussions with nationally known speakers.

Location: Monmouth University,
400 Cedar Avenue,
West Long Branch, NJ 07764-1898;
Date: September, 13, 2014

 

ILADS COMES TO DC:
2014 ILADS Annual Conference and Fundamentals Course

Registration will up shortly. If you would like to stay updated on conference and course information, please fill out our "Stay Updated" form by cicking here

The 2014 ILADS annual conference will be held at the Grand Hyatt DC Hotel in Washington, D.C. Thursday through Sunday, October 9-12, 2014. ILADS has negotiated a special sleeping rate of $189 per person for registrants good until September 17, 2014. See www.ilads.org for details.

The first day, Thursday October 9, 2014 is a Lyme Fundamentals intensive course for professionals only. The Friday through Sunday noon basic schedule is plenary sessions each morning followed by breakout sessions in the afternoon. Medical professionals are invited to register early. Others will be allowed to registered within a month of the meeting, space pending.

The Grand Hyatt is located at 1000 H Street, N.W., Washington, D.C. and is conveniently situated at the Metro Center station of the Washington Metro system. The nearest airport is Ronald Reagan Washington National Airport from which the hotel is accessible by Metro or taxi.

Most of the Washington area’s major attractions may be reached either by walking or a short Metro ride, so a car is not necessary. The Capitol itself is nearby, the closest Metro stops being either Union Station (closer to the Senate Office Buildings) or Capital South (closer to the House of Representative Office Buildings. To arrange tours or the Capitol, please go the the website www.visitthecapital.gov.

Other nearby sites include the Library of Congress, the Smithsonian Museums on the National Mall, The National Archives, the International Spy Museum and the White House. The Washington Monument has also just reopened, following extensive repairs. The neighborhood surrounding the hotel is home to some of the city’s best restaurants and casual eateries as well as many shops. One good source for information regarding the neighborhood is www.dc.about.com.

 

Charles Ray Jones, MD 2014 Pioneer in Lyme Awardee

This year, Dr. Charles R. Jones, an ILADS training physician and pediatrician will be awarded the second annual PIONEERS IN LYME DISEASE AWARD October 11, 2014 at the Grand Hyatt Hotel in Washington, DC. We will be asking everyone who has been touched by Dr. Jones to participate either by attending or by posting tributes on our web site.

As stated by Gordon Medical, “Even though Dr. Jones is in Connecticut, every child and pregnant mother who has been treated for Lyme disease will have been affected by the work and research of Dr. Jones over his long career, and every doctor who treats children with Lyme will have learned from him.”

Please plan to join us in DC for a special night of celebration Dr. Jones’ legacy.

 

ILADS Screening of UOS II

On Thursday October 9th ILADS will be screening the sequel to Under Our Skin, the power Lyme film that raised awareness about the plight of chronic Lyme disease patients. Registrants of the ILADS conference, plan to join us the evening of October 9th for a special reception hosted by IGENEX. Andy Wilson, the film’s producer, will be on hand to greet you and answer questions about his journey in making the films. www.underourskin.com/sequel/.

John Drulle, MD Memorial Lectureship

Each year one speaker at the annual ILADS conference is chosen to be the grantee of the John Drulle Memorial lectureship. Dr. Drulle was a creative thinker who knew no limits to help his chronic Lyme patients. ILADS is delighted that the 2014 recipient will be announced at the annual meeting and will receive a stipend of $5,000.

 

Case Discussions At Annual Meeting

Anyone who anticipate attending the fall annual conference in October, please consider a 10-15 minute case presentation. Dr. Sam Shor is accepting requests. Contact him at contact@ilads.org and put in the subject line Case Presentation for Annual Meeting. Include your contact information as well as your case presentation.

New ILADS Research Committee

Armin Schwarzbach, MD, PhD and Leona Gilbert will be heading a new Research Committee for members who are doing research relevant to tick borne diseases. From time to time, one or the other will be updating the membership as to the activities of the working group and asking for input from the ILADS membership.

 

Prevention Magazine Publishes Article Supporting Lyme Disease
By Katherine Harmon Courage

The Truth About Lyme Disease. Why One Man Volunteered To Have 8 Blood-Sucking Ticks Attached To His Knee. Not concerned about Lyme disease? You might want to rethink that if you ever go outside. Read the article.

The Karl McManus Foundation

We needs funds urgently to set up a Lyme disease research centre at the University of Sydney so that Australians suffering from Lyme disease can get proper diagnosis and treatment. A donation at www.karlmcmanusfoundation.org.au will help us to do this. You can also help us get Lyme disease recognised in Australia if you are inclined to be politically active with your state and/or federal MP. Thank you for your support.

 

ILADS IN AUGSBURG
Carsten Nicolaus MD, PhD

This year’s European ILADS Conference took place on April 25th and April 26th 2014 in Augsburg (Germany). People from 17 countries took interest in the topic and came to the Bavarian city of the Fuggers, near Munich.

The conference welcomed 115 participants overall and was supported by 11 exhibitors and 13 speakers who exposed current information about the topic. The BCA-clinic in Augsburg organized the ILADS Conference on site. The day before the official inauguration, Dr. Carsten Nicolaus and Dr. Armin Schwarzbach welcomed approximately 30 participants within the premises of the BCA-clinic, where they were able to learn about the possibilities of diagnosis with Infectolab (partner of the BCA-clinic) and therapies in the BCA-clinic.

After the official welcoming speech of the Board and the organizer of the program, Dr. Carsten Nicolaus, ILADEF treasurer, the first day of the conference was inaugurated. Traditionally, the first day is designed for ILADS-therapists as its purpose is to convey standards in diagnostics and therapy for physicians who want to work according to the ILADS guidelines. Every participant receives a certificate which shall represent a standard of quality for therapists. ILADS will only transfer patients to physicians who are in possession of this certificate.

The introductory speech was held by Raphael B. Stricker, MD. He presented in a general overview of tick-borne diseases and exposed the history of the disease, its epidemiology and its pathogens. He emphasized on the different borrelia strains and the clinical dilemma that arises from the diversity of symptoms of chronic Lyme disease, the known co-infections and other additional infections.

Christine Green, MD, discussed the difficulties emerging from the diversity of symptoms in tick-borne diseases, which should be registered on standardized questionnaires. She also presented the diverging opinions of the CDC, the IDSA and the ILADS about the subject. She insistently pled that therapists should listen carefully to what the patients have to say.

Armin Schwarzbach MD, PhD, informed about the interpretation and application of laboratory tests when treating tick-borne disease. He highlighted the importance of preanalytics for labresults. He differentiated various tests such as PCR, ELISA and immunoblot, CD-57-NK cells as well as LTT-Elispot in reference to multisystem diseases.

Samuel M. Shor MD, FACP, reported on his personal practice of treating tick-borne diseases. In the first part of his presentation, he showed how to explain the therapy to the patients and what supportive measures have to be taken, i.e. detox, diet, and treatment of the intestine to reduce side effects and improve the sleep. In the second part of his presentation, he explained the different antibiotic therapies he uses, either with synthetic or natural antibiotics (herbs). He commented on the application of i.v. schemes, such as combination therapies and pulsing.

Carsten Nicolaus, MD, PhD, presented a European view of the epidemiology and pathogenesis. The varied co-infections were put in the spotlight. He presented thoroughly the different tic-borne co-infections, but also 5 those transmitted or caught otherwise (additional infections). He exposed the symptoms of those infections and highlighted the difficulty of diagnosis due to the overlapping symptoms. At last, he presented the combination therapy he applies for multiple infections.

Leo J. Shea III., PhD, dedicated his presentation to a special subject: the neuropsychological challenges of Lyme disease for children and families. As a psychiatrist, he conducted a study on 77 children. He described extensively the effect of the disease on the central nervous system and how these psychological symptoms and dysfunctions show in the patient. He explained which neurological and psychiatric diagnoses should also be checked on tick-borne diseases. Anxiety Disorder or ADHD, for instance, are examples that were mentioned. In his study, he also effect those symptoms have on the families of the affected children.

Further, Samuel Shor, MD, FACP, pled for a practice based on evidence when it comes to tick-borne diseases. He explained the reasons for opening such a practice from the ILADS’ point of view and showed the different positions of IDSA and ILADS. He, then, mentioned existing literature.

In the evening of the first day, the Mayor of Augsburg had organized a reception in the impressive Golden Hall of the Town Hall of Augsburg. On behalf of the Mayor Dr. Kurt Gribl, Max Weinkamm cordially welcomed the participants of the congress and highlighted that the City of Ausburg is proud to host yet again the International Congress and to be the home for a renowned European Lyme Center. This day ended with a cozy evening and professional conversations in the historical “Ratskeller” of Augsburg.

On the main day oft he congress the speakers presented new scientific studies and how their findings affect the examination of Lyme and co-infections.

After the inauguration of the second day, Valerie Obsomer, PhD presented the results of a survey about the spreading of tick-borne diseases that she conducted in Belgium. To begin with she spoke about the results of another study that had been carried out under her supervision. Thus, she could prove the presence of up to 95 different pathogens in ticks. In specific examined regions, there are more than 45% of the ticks infected with borrelia. She also informed the audience that 30% of the ticks spread by birds were infected with up to 6 human pathogenic strains. 41% of the interrogated participants had more than 5 tick bites. The means of transport are extremely diverse but 27% of the participants were bit in their own garden.

The second speaker of the day was Samuel M. Shor, MD, FACP. He explained the use of hyperbaric oxygen therapy to treat tick-borne diseases. He describes from his own practice the successful treatment and therapy possibilities of chronic and other diseases such as cystitis or MS.

Mrs. Leona K. Gilbert, PhD gave very important input for therapy by presenting the pleomorphic forms of borrelia that she had studied. She showed that the results of her study did not confirm the existence of “cystic” forms of borrelia. Those forms are not cell wall deficient but have a cell envelope. She calls those forms “round bodies”. They are cable to develop rapidly back into bioactive, mobile forms. These proven pleomorphic forms (round bodies, biofilms and bubbles/loop shaped forms) allow a protection against the immune system and, therefore, lead to a chronic disease. She has proven this in an experiment in the laboratory.

Armin Schwarzbach, MD, PhD explained the limitations of the laboratory diagnostics in Lyme disease. He highlighted the low sensitivity of ELISA and Immunoblot-tests. To compensate this, additional cellular immune system tests should be carried out: LTT-Elispot and CD-57-NK-cells as laboratory cells. In the second part of his presentation, he explained the possibilities to use the laboratory tests for the diagnostics of co-infections and additional infections.

A clear appeal was made by Albin Obiltschnig, MD, to perform a direct proof for borrelia in different tissues. First, he explains the issues related to indirect laboratory tests. Then, he offered various methods for direct pathogenic evidence. He presented, for instance, the setting of a culture from a tissue sample (low sensitivity), the histopathological examination and the PCR. Thanks to his p hand surgery practice he has been able to examine samples of tissues and, as a consequence of the results, had to question many surgical operations.

Pol de Saedeleer, RPharm, started the second half of the day thanks to his presentation on adrenal stress. He presented the highly complex processes that lead to adrenal stress. He showed that adrenal stress could trigger disturbances in the immune system, dysfunctions in the intestine, the brain and to the mitochondrial system. Extreme stress and continuous stress also trigger chronic disturbances, and therefore chronic diseases. This way, it also promote chronic infections, as mentioned by the speaker.

Raphael B. Stricker’s, MD, presentation of sexual transmission of borrelia had already been a discussed subject. He presented a collaborated studywhich isolated and proved the existence if B. burgdorferi in vaginal secretion and sperm. As a consequence of this result, a sexual transmission of borrelia cannot be denied. However, a more amplified study is necessary and it does not prove that every sexual partner is infected.

Christine Green, MD, reports that chlamydia pneumoniae have similar escape mechanisms (similar polymorphism forms). These pathogens are not only transmitted by ticks, but also by other means such as the air. She also presented symptoms, diagnostics and treatment of Chlamydia infections.

The presentation performed by David C. Martz, MD, was extremely impressive. Many years ago, he got ill himself and got a “death sentence” with MND (or ALS). His thesis is that MND could be a special manifestation of an infection with B. burgdorferi. Thus, he presented the history of his disease and the results of his practice. Out of his 900 patients, 120 have had a MND diagnosis. He treats them in his practice with a antibiotic-monotherapy (Cetrifaxon). 28 patients managed tos top the progress of the disease and 14 patients showed improvements. He reached out to many doctors in order to help these condemned patients.

Frau Ginger R. Savely, DNP, reported about morgellons and insisted on her thesis that it is a new co-infection related to Lyme. She is trying to prove that morgellons are a special form of Lyme-borrelia manifested in a special skin disease. She described the difficulties to accept the disease as something more than just a psychological delusion. Many pictures were shown of these skin lesions and the fibers that are recognizable under the microscope (60 times magnified).

To conclude the day, Bernhard Ammann, Dipl.-Ing. (FH) presented “Lymecare”. He demonstrated the difficulties lyme patients have when it comes to control the development of their symptoms. “Lymecare” is an app that the patient uses daily to record his state of health and symptoms on his smartphone or laptop. The results are registered and can be seen on a weekly or monthly basis. This way, both patient and doctor have a daily development without having to meet as often. Moreover, the patient would get the information if intolerance or even a dangerous side effect occurs as a response to the antibiotics. This app could also be useful for other chronic diseases and/or for medical follow-up studies. It should be considered by many universities who conduct a variety of studies.

To close the conference, a yoga workshop was given for which 16 participants were present. The speaker and trainer Mrs. Katherine Kirk first demonstrated the difference between regular yoga and MSIDS-yoga. She reported the benefits of certain yoga exercises for patients affected with multisystem diseases. The presented exercises had been specifically designed for the particular group of patients, according to their needs and abilities.

Photos from the ILADS Augsburg Conference are posted on the website.

 

Position Available

Busy Naturopathic practice looking for an experienced and integrated Lyme Literate practitioner (ND, DO, MD, NP). We have a 9-month waiting list for new patients. Therapeutics commonly used in our practice are oral and IV antimicrobial therapy, nutrition, botanical medicine, IV nutritional therapy, exercise prescriptions among others. We are located in Portsmouth, NH. Please respond with your resume/bio to DrHecht@naturopathic-doctors.com. For further information about our practice, visit our website www.naturopathic-doctors.com. Our office phone is 603-427-6800 and leave a message with our staff for Dr. Leon Hecht, ND.

ILADS Member, Gary Kaplan, DO Has Written a New Book of Interest to the Lyme Community

In Total Recovery, Dr. Gary Kaplan argues that we’ve been thinking about disease all wrong. Drawing on dramatic patient stories and cutting-edge research, the book reveals that chronic physical and emotional pain are two sides of the same coin. New discoveries show that disease is not the result of a single event but an accumulation of traumas. Every injury, every infection, every toxin, and every emotional blow generates the same reaction: inflammation, activated by tiny cells in the brain, called microglia. Turned on too often from too many assaults, it can have a devastating cumulative effect. Find out more at: www.kaplanclinic.com/books/total-recovery/

 

Complex, Late Stage, or Chronic Lyme Disease?
WILTON, CT – Has your life been significantly impacted by Lyme disease?

Steven Phillips, M.D., a Yale trained physician specializing in the diagnosis and treatment of Lyme disease, has re-opened his practice. Dr. Phillips initially began his practice in Ridgefield in 1996, and then about 7 years later moved just over the border to the Georgetown part of Rt. 7 in Wilton, where he practiced until June 2011. At that time, a serious medical condition with his back required that he take a leave of absence. Now that his back is better, he is very much looking forward to offering regular medical care as of 9/1/13.

Lyme disease, as well as other vector-born pathogens such as Babesia, Ehrlichia, and Bartonella, can seriously disrupt the lives of previously healthy individuals. These infections can be difficult to diagnose and treat if not caught early.

About the practice

We’re located at 944 Danbury Road, Wilton. Just South of Bruce Bennett Nissan. Tel 203-544-0005. If you need an appointment, please leave your contact information to join our waiting list.

About Steven Phillips, MD

Dr. Phillips has been a proponent of treating stubborn cases of Lyme disease with longer, more intensive courses of antibiotics. His long list of accomplishments include: Being well published in the medical literature on the topic of Lyme disease; having been asked by the states CT, NY, and RI to give numerous testimonies as a Lyme disease expert at the state level; and being a past president of The International Lyme and Associated Diseases Society (ILADS.org). He has extensive experience not only in the management of Lyme disease, but its other associated vector-born infections as well. An internationally known physician/researcher, he has treated patients from over 20 countries. Contact: JoAnn Nadeau, Steven Phillips, MD PC 203-544-0005

 

Dr. Margaret Helene Bayer - July 8, 1931 - May 12, 2014
by Pat Smith

Margret H. Bayer, a researcher whose early work with her husband, Dr. Manfred Bayer, on Lyme disease PCR, is still cited today, died on May 12. The Drs. Bayer received funding from the LDA for their groundbreaking research which resulted in the often cited publication in Infection 24 (1996) (abstract below). Her contribution to Lyme research with that project and others that followed showed her dedication to helping provide Lyme patients with answers as to why they continue to be sick despite treatment for the disease. It is sad to lose someone with her talent and dedication and we send our condolences to her husband, Dr. Manfred Bayer, and to her entire family for their loss.

Groundbreaking research publication

Infection 1996: Borrelia burgdorferi DNA in the Urine of Treated Patients with Chronic Lyme Disease Symptoms: A PCR Study of 97 Cases, Bayer ME, Zhang L, Bayer MH. Author affiliation Fox Chase Cancer Center, Philadelphia, PA 19111, USA

 

Stewart Bint Takes Barefoot Walk

UK novelist Stewart Bint is going completely barefoot 24/7 for two months culminating in a 10k barefoot walk to raise awareness of Lyme Disease. Stewart takes up the story: “I discovered that my Twitter and Facebook friend, Cat Kozich, from Tennessee, suffers from Lyme Disease. Although I had heard of it I didn’t actually know anything about it, and was horrified when I found out the effects it has on people if not treated early. And I was equally horrified to learn that some sections of the medical profession don’t recognise it as a disease.

“I wanted to do something to raise awareness, and as I had already signed up to do the organised Amis Sans Shoes 10k barefoot walk in the UK on July 20, I decided to dedicate it to Cat, and use it to bring this dreadful disease into the public eye.

“To increase the opportunity of both gaining media coverage and talking to people, I have decided to do everything barefoot in the two months leading up to the walk. So I will be having bare feet 24/7 from May 20 until the walk. I am confident that many people will stop me in the street to ask why I’m barefoot, and I’ll be able to bring Lyme Disease to their attention.

“As an experiment last week I gave an author talk at a local school, barefoot, and was quizzed by the children about it...in fact they were more interested in that, than they were in my books! So the ball is rolling, and it’s working.”

“Although the purpose is principally to raise awareness, it would also be nice if people could sponsor me. ILADS has set up a campaign and donating page at www.ilads.org/fundraise/campaigns/for-cat-kozich-the-barefoot-lymie/.

If you would like to set up your own Crowdfunding Campaign, click below.

 

LYME COMMUNITY EVENTS

Dr. Horowitz speaking at Lyme Seminar in Norway
Date: May 26-27, 2014
Where: Grand Hotel in Oslo, Norwary
Website: View Website

Dr. Horowitz speaking at Lyme Seminar in France
Date: June 6th-8th, 2014
Where: Strasbourg, France
Website: View Website

The Mayday Project
Date: May 22 & 23, 2014
Website: www.themaydayproject.org

Ticked Off Art: Understanding Lyme Through Art
Date: May 5 - 29
Opening Reception: May 8, 6:30-8:30pm
Where: Maple Grove Arts Center is located at 7916 Main Street, Maple Grove, MN 55369
State Coordinator: Vicki Koecher & Kara Welch
Join our Minnesota Art Show Facebook Planning Page:
View Website
For Art Show Information:
View Website

 

National Lyme Disease Research Center in the Netherlands

On May 5, 2014 the House of Parliament unanimously supported the proposal of MP Henk van Gerven to establish a national Lyme disease research and treatment center. Van Gerven, “It is a unique event that a citizens initiative has been taken over by the House of parliament. This will hopefully give more insight into the diagnosis of Lyme and tickbite related diseases and offers better chances on the proper treatment of thousands of Lyme disease patients in the Netherlands”.

 

Dear ILADS Member,

Hope that you are all “braving the storm” for what has turned out to be a rough winter across the country. We have seen a nice increase in emails between issues with notifications of the many varied and interesting events and news among our group. Please as always feel free to contact us at any time.

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

 

PRESIDENT'S MESSAGE

Greetings Colleagues,

I am excited to moderate the upcoming April 12, 2014 ILADS regional conference in Hershey Pennsylvania. We have been working with Julia Wagner and her associates with PA LymeResource Network to organize our second regional conference for education and networking on tick borne diseases in Hershey. Last year we sold out with more than 150 professionals attending.

This Hershey meeting will include a basic curriculum covered by Drs. Burrascano, Dr. Horowitz and myself, a format that was quite successful in San Diego even for professionals experienced in treating Lyme disease. We have added a roundtable format at lunch to allow attendees to meet network with regional and national leaders. Judy Leventhal will share her work with Encephalopathy in

Children with Tick Borne Diseases and implications for Development and Learning. Stewart J. Greenleaf, PA State Senator will also join us. CME credits are available.

For those coming to the Hershey Workshop early, I will be speaking Friday evening during dinner on evidencebased treatment following Jane Hoffman, PhD presentation on Changing Ecology and Vector Borne Diseases: The Wildlife Perspective.

Also save the dates for the April 25th and 26th Augsburg, Germany conference, October 9, 2014 Overview of Lyme and Tick Borne Diseases, and October 10-12, 2014 Annual Scientific Session in Washington DC. If you would like to present a poster or case study at the annual meeting, contact us. I will be attending both conferences and am looking forward to meeting you.

Daniel J. Cameron, MD, MPH
President, ILADS

 

Ridgefield, CT Spring Seminar - By Sandra Berenbaum, LCSW

As an advisor to the Ridgefield (CT) Lyme Disease Task Force, as well as a member of the Program Committee for the Ridgefield Spring Seminar, I’m pleased to let my fellow ILADS members know about the Seminar we have planned for this year. This Seminar will take place on Tuesday, May 13th, at Western CT State University, Westside Campus, in Danbury, CT. It is free and open to the public.

Now in its eighth year, the Spring Seminar draws a crowd of to 300 and 400 people. While attendance is largely from CT and surrounding states, we have also had attendees come from around the country and Canada.

This year’s Seminar is entitled “Lyme Disease: Body, Mind and Spirit”. The speakers, all ILADS members, are former ILADS president and leading Lyme disease physician Steven Phillips, MD, former ILADS president and leading Lyme knowledgeable psychiatrist and psychopharmacologist Robert Bransfield, MD, and Sandy Berenbaum, LCSW, BCD, a leading Lyme-literate mental health practitioner.

The program begins at 6:00pm, with a Health Fair focused on presenting information from laboratories specializing in testing for Lyme and other tick-borne diseases, Naturopathic Physicians and other ancillary professionals, specialists in the field of supplemental treatment as well as tick control products and many other services.

The speakers will start at 7:00pm and run to 9:30pm. In addition to the presentations, we will be honoring Mary Beth Pfeiffer, for her “Courage in Journalism.” Ms. Pfeiffer has researched and written a landmark series of articles on tick-borne diseases for the Poughkeepsie (NY) Journal. Her articles are read and appreciated by professionals and patients throughout the country.

This excellent program is sponsored by the Ridgefield Lyme Disease Task Force, an organization founded 11 years ago by Karen Gaudian and Jennifer Reid, together with Ridgefield’s First Selectman, Rudy Marconi. Known for their commitment to collaboration within the community, Karen and Jennifer have formed alliances with Town of Ridgefield, Western CT State University, the Ridgefield Visiting Nurse Associaton, the Leir Foundation, and others, to develop programs that have had an influence far beyond the community in which they are located.

For more information, visit https://www.facebook.com/RidgefieldLymeResource

 

Ellie Hynote, MD Passes
(1957-2013)

Dr. Eleanor Hynote died Dec. 17, 2013, in Napa. She was born in Brookline, Mass., to Francis and Rita Dimento on June 21, 1957.

Hynote graduated from Brookline High School, Vassar College and UC Irvine School of Medicine. She opened her internal medicine and clinical nutrition practice in Napa in 1989. She enjoyed snow skiing, travel, the beach at Martha’s Vineyard and, most of all, her family. She devoted her professional life to the practice of medicine from which she received great gratification.

Hynote is survived by her husband, Robert Hynote of Napa; daughters, Caroline, Julia and Olivia Hynote, all of Napa; parents, Francis and Rita Dimento of Boston; and brothers, James and Francis Dimento, and sister, Melissa Lang, all of Boston.

The family requests that in lieu of flowers, donations be made in Hynote’s memory to organizations dedicated to infectious disease research. ILADEF has received several donations in Dr. Hynote’s memory.

Report on Misdiagnosed Patients in Irish News

An Irish Newspaper, The Independent.ie/Irish News had a feature story on Lyme disease November 22, 2013 reporting on a government Lyme hearing.

“There have been 19 cases of Lyme Disease reported to the Health Protection Surveillance Centre of the Health Service Executive (HSE) to date this year, more than double the eight cases reported in 2012.

Yet the actual number is likely to be hundreds, due to the lack of public awareness of the disease as well as among GPs and even consultants,University College Cork Zoology Professor Dr Eoin Healy told the Oireachtas Joint Committee on Health and Children yesterday.

Describing the disease as “endemic” in Ireland, he said the bacterial infection transmitted to humans and animals from the bites of ticks feeding on deer, sheep, cattle and goats, was first identified here in 1982.

It often attacks the nervous system and can result in arthritis, joint and muscle pain as well as cardiac complications, with 40pc of Lyme patients developing long-term health problems...”

ILADS mission is global education about Lyme disease.

 

Increased Effort To Combat Lyme Disease in 2014 Omnibus
From Congressman Frank Wolf’s office

Washington, D.C. (January 27, 2014) – Efforts to combat Lyme disease get a much-needed boost in the FY 2014 Omnibus spending bill recently signed into law, according to Rep. Frank Wolf, one the leading champions to find a cure to the debilitating disease.

In addition to providing $9 million to Centers for Disease Control (CDC) to help to combat Lyme, the bill directs the CDC to develop better diagnostic testing and national surveillance systems. The measure also directs the National Institute of Sciences to continue its efforts to more accurately assess the presence of acute and chronic Lyme disease and encourages the National Science Foundation to continue to support Lyme research efforts.

The four research agencies within the Department of Agriculture are also directed to build on ways to protect humans and livestock from tick-borne illnesses and to consider how such diseases impact the local economy.

The increased effort comes in the wake of recent news reports that suggest Lyme disease affects nearly 300,000 people each year, up to 10 times more than previously thought.

“I know that many are suffering from this devastating disease,” Wolf said. “My approach to Lyme disease always has been two-fold: help those who are sick get the treatment they need; and help prevent healthy people from becoming sick. This Omnibus continues these efforts.”

Wolf has hosted a number of forums in Virginia’s 10th District to help educate residents and medical professionals about the dangers of Lyme. In addition, he is cosponsoring two bills with Rep. Chris Smith (R-NJ) and Rep. Chris Gibson (R-NY) that would change permanent law.

One measure, H.R. 610, would require the secretary of Health and Human Services create a federal Tick-Borne Diseases Advisory Committee charged with coordinating research and advising federal agencies on priorities related to Lyme and other tick-borne diseases, while also recognizing that patients can provide valuable and needed feedback. The other, H.R. 611, builds on H.R. 610 but further increases authorized funding for Lyme disease research.

Lyme is the most prevalent vector-borne disease in the U.S. today. If not diagnosed and treated early, Lyme can lead to disseminated infection and can affect every system in the body, including the central nervous system. Later symptoms of Lyme disease include arthritis of weight-bearing joints; neurological problems such as facial paralysis, encephalopathy, memory problems and weakness of the extremities; and heart symptoms, such as blockages and inflammation.

 

Seeking Lyme Doctor

Ron Gangemi of Lyme Awareness of Cape Cod has purchased a building out of his own funds for the purposes of opening a Lyme Center this Spring.

Walls are coming down and we have an architect drawing up plans and patients lining up but unfortunately we have no LLMD yet to treat them.

If you have any ideas we are most happy to listen. Center will be located in Mashpee Mass just off Route 28 which is a well traveled location.

If interested in working here please contact Lisa Freeman BSN, Nurse advocate and liaison, Lyme Awareness of Cape Cod 508-896-3299 phone and fax

French Event and Conference on Lyme Disease

The French Lyme Association is organizing 3 independent events to mark World Lyme Day, also known as the World Wide Lyme Disease Project. First, there will be a gathering in the morning at La Place Montparnasse, followed by lunch in a restaurant near the Montparnasse Station. A large conference regarding Lyme disease will be held at Montrouge, featuring specialists on both ticks and Lyme disease. Among the speakers will be Prof. Perrone, Dr. Teulieres, Dr. Bransten, Dr. Boucher and Mme. Vayssier-Taussar. The conference fee for members is 9 euros if purchased before before 3/15/14, and 15 euros for nonmembers.

For more information, visit
http://francelyme.fr/wwlp2014-inscription/ or contact contact@francelyme.fr.

 

ILADS Offers CME Programs This Spring

The conference, geared towards medical professionals, will feature some of the best well known mentors in the Lyme community: Drs. Cameron, Burrascano and Horowitz. The meeting begins with a dinner lecture on Friday night (optional) and then a full day of lectures Saturday. There is a special hotel rate of $179 per night is good until March 10th. Register now and bring the family to enjoy the lovely Hershey Lodge. To view the full schedule and register go to http://ilads.org/lyme_programs/hershey/ilads_hershey.php.

ILADS will be returning to Augsburg, Germany April 11-12, 2014 for two days of intensive Lyme training for medical professionals. The first day’s course is aimed to teach a Lyme overview of the basics. The second day delves in to more comprehensive subject matter. The European ILADS meetings are smaller than the annual scientific meetings. So, there is ample opportunity to get to know your European peers. All talks will be given in English with simultaneous translation to German. To view the full schedule and register go to http://ilads.org/lyme_programs/augsburg/ilads_augsburg.php.

 

ILADS Announces Lyme and Tick Borne Disease Conference in Hershey, PA

Objective

To provide physicians and other medical practitioners with insight into recent developments in the understanding of Lyme and other tick-borne diseases, and to provide basic tools and strategies for counseling prevention, and for diagnosing and treating these diseases.

Location: Hershey, PA; Date: April 11-12, 2014

Highlights of Hershey Program

7:00pm - Dinner Speaker - April 11, 2014

Evidence Based Lyme Treatment

Daniel J. Cameron, MD, MPH, ILADS Moderator

8:00-8:45am - April 12, 2014

Clinical Presentation of Lyme

Joseph J. Burrascano, Jr., MD

8:45-9:45am - April 12, 2014

Lyme-MSIDS Part I: Treating the 3 I's: Infection, Inflammation and Immune Dysfunction

Richard I. Horowitz, MD

11:45am-12:00pm - April 12, 2014

Lyme Disease in Pennyslvannia

Stewart J. Greenleaf, PA State Senator

1:00-2:00pm - April 12, 2014

Lunch Speaker (Magnolia Room) - Encephalopathy in Children with Tick Borne Diseases: Implications for Development and Learning

Judith G. Leventhal, PhD

 

ILADS Announces 2014 Annual European Lyme Disease Conference

Objective

The Annual European ILADS Lyme Disease Conference will provide updates in clinical knowledge and treatment techniques for tick-borne diseases with an emphasis on the European experience.

Location: Augsburg, Germany; Date: April 25-26, 2014

Highlights of European Program

8:30am-9:15am - April 25, 2014

Lyme Disease History and Evolution of Tick Borne Disease

Raphael Stricker, MD

10:30am-11:15am - April 25, 2014

Interpreting and Using Laboratory Tests in Practice

Armin Schwarzbach, MD, PhD

1:30pm-2:15pm - April 25, 2014

Co-infections: Presentation, Diagnosis and Treatment

Carsten Nicolaus, MD, PhD

2:15pm-3:00pm - April 25, 2014

Lyme Disease, Neuropsychlogical Challenges for Children and Families

Leo Shea, III, PhD

9:15am-10:00am - April 26, 2014

Hyperbaric Oxygen Therapy in the Management of Lyme Disease

Samuel Shor, MD, FACP

3:00pm-3:30pm - April 26, 2014

Lyme Treatment in ALS and MS Patients

David Martz, MD

4:00pm-4:30pm - April 26, 2014

Morgellon's Disease: The Newest Lyme Co-infection?

Ginger Savely, DNP, FNP

 

Download registration form at:
https://www.facebook.com/events/517940644944670/.

Lyme Disease: Call for a "Manhattan Project" to Combat the Epidemic

Raphael B. Stricker, Lorraine Johnson
PLoS Pathog 10(1): e1003796. - January 2, 2014 Opinion

Lyme disease is the most common tick-borne illness in the world today. Until recently, the Centers for Disease Control and Prevention (CDC) reported an average of only 30,000 cases of Lyme disease per year in the United States. Three preliminary CDC studies, however, have indicated that the true incidence of Lyme disease may be greater than 300,000 cases and as high as one million cases per year in the United States. A majority of these cases occur in women and children. Based on this new information, Lyme disease should be recognized as a virulent epidemic that is at least six times more common than HIV/AIDS. In response to these alarming statistics, we review the ongoing problems with diagnosis and treatment of Lyme disease. We propose the need for an HIV/AIDS-style “Manhattan project” to combat this serious epidemic that threatens the physical and mental health of millions of people around the world.

Free, full text: http://doi.org/10.1371/journal.ppat.1003796.

 

NJ State Dept of Health Issues Warning On Lyme Carditis CARDITIS

The NJ State Department of Health distributed a special report in December to all medical practitioners in the state, warning of 3 cases of fatal Lyme carditis involving patients ages 26-38 years old. In all 3 cases, the diagnosis of Lyme carditis was made by tissue harvesting for organ donation. Donated corneas from two of the patients were transplanted into three recipients before the diagnosis was made. The special bulletin included an alert to monitor all patients with unexplained cardiac symptoms for Lyme disease and encouraged reporting of all cases.

Congratulations to ILADS Member
GINGER SAVELY, DNP
for being awarded the 2014
AANP State Award for Excellence NP

 

Lyme Disease May Be Sexually Transmitted, Study Suggests.

CONTACT: Guinnevere Stevens - 415-399-1035
FOR RELEASE: January 25, 2014

Carmel, CA - A new study suggests that Lyme disease may be sexually transmitted. The study was presented at the annual Western Regional Meeting of the American Federation for Medical Research, and an abstract of the research was published in the January issue of the Journal of Investigative Medicine.

Lyme disease is a tickborne infection caused by Borrelia burgdorferi, a type of corkscrewshaped bacteria known as a spirochete (pronounced spiro’keet). The Lyme spirochete resembles the agent of syphilis, long recognized as the epitome of sexually transmitted diseases. Last summer the Centers for Disease Control and Prevention (CDC) announced that Lyme disease is much more common than previously thought, with over 300,000 new cases diagnosed each year in the United States. That makes Lyme disease almost twice as common as breast cancer and six times more common than HIV/AIDS.

“Our findings will change the way Lyme disease is viewed by doctors and patients,” said Marianne Middelveen, lead author of the study presented in Carmel. “It explains why the disease is more common than one would think if only ticks were involved in transmission.”

The present study was a collaborative effort by an international team of scientists. In addition to Middelveen, a veterinary microbiologist from Canada, researchers included molecular biologists Jennie Burke, Augustin Franco and Yean Wang and dermatologist Peter Mayne from Australia working with molecular biologists Eva Sapi and Cheryl Bandoski, family practitioner Hilary Schlinger and internist Raphael Stricker from the United States.

In the study, researchers tested semen samples and vaginal secretions from three groups of patients: control subjects without evidence of Lyme disease, random subjects who tested positive for Lyme disease, and married heterosexual couples engaging in unprotected sex who tested positive for the disease.

As expected, all of the control subjects tested negative for Borrelia burgdorferi in semen samples or vaginal secretions. In contrast, all women with Lyme disease tested positive for Borrelia burgdorferi in vaginal secretions, while about half of the men with Lyme disease tested positive for the Lyme spirochete in semen samples. Furthermore, one of the heterosexual couples with Lyme disease showed identical strains of the Lyme spirochete in their genital secretions.

“The presence of the Lyme spirochete in genital secretions and identical strains in married couples strongly suggests that sexual transmission of the disease occurs,” said Dr. Mayne.

“We don’t yet understand why women with Lyme disease have consistently positive vaginal secretions, whilst semen samples are more variable. Obviously there is more work to be done here.”

Dr. Stricker pointed to the unknown risks of contracting Lyme disease raised by the study. “There is always some risk of getting Lyme disease from a tickbite in the woods,” he said. “But there may be a bigger risk of getting Lyme disease in the bedroom."

Reference: The Journal of Investigative Medicine 2014;62:280-281. Presented at the Western Regional Meeting of the American Federation for Medical Research, Carmel, CA, January 25, 2014. http://afmr.org/Western/. Additional information: officemanager@usmamed.com