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ILADS Summer 2014 Newsletter
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Dear Members,

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.
Barbara Buchman, Executive Director and Andrea Gaito, MD Editors ILADS NEWS

PRESIDENT'S MESSAGE

ILADS PUBLISHES NEW GUIDELINES  

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

  1. Laboratory testing is meant to contribute to rather than to supersede physicians' judgment.
  2. Clinical judgment is necessary to identify individuals who may benefit from antibiotics to avoid preventable persistent, recurrent, and refractory Lyme disease.
  3. Empiric treatment should be considered as routine treatment of patients for whom Lyme disease is a likely diagnosis.
  4. 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.
  5. Duration of therapy should be guided by clinical response rather than any arbitrary 30-day treatment course.
  6. A reasonable course would be to continue therapy to treat Lyme disease, after clinical and laboratory abnormalities are resolving and symptoms have resolved.
  7. 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
 
  1. Steere AC, Hutchinson GJ, Rahn DW et al. Treatment of the early manifestations of Lyme disease. Ann Intern Med, 99(1), 22-26 (1983).
  2. Donta ST. Tetracycline therapy for chronic Lyme disease. Clin Infect Dis, 25 Suppl 1, S52-56 (1997).
  3. Donta ST. Macrolide therapy of chronic Lyme Disease. Med Sci Monit, 9(11), PI136-142 (2003).
  4. Cimmino MA, Moggiana GL, Parisi M, Accardo S. Treatment of Lyme arthritis. Infection, 24(1), 91-93 (1996).
  5. Dattwyler RJ, Halperin JJ, Pass H, Luft BJ. Ceftriaxone as effective therapy in refractory Lyme disease. J Infect Dis, 155(6), 1322-1325 (1987).
  6. 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).
  7. Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med, 323(21), 1438-1444 (1990).
  8. Logigian EL, Kaplan RF, Steere AC. Successful treatment of Lyme encephalopathy with intravenous ceftriaxone. J Infect Dis, 180(2), 377-383 (1999).
  9. 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).
  10. 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).
  11. 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).
  12. 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).
  13. 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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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.
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