*Added 16th Oct 2014
Newly Released ILADS guidelines for 2014 (PDF): https://ticktalkireland.files.wordpress.com/2014/08/ilads-2014.pdf
An announcement from the President of ILADS: http://www.ilads.org/ilads_news/2014/a-letter-from-our-president/
Check out some soundbites from the Autumn/Fall conference
Day One: http://lymewhisperer.com/2014/10/09/ilads-sound-bites-1092014/
Day Two: http://lymewhisperer.com/2014/10/10/ilads-sound-bites-101014/
Day Three: http://lymewhisperer.com/2014/10/12/ilads-sound-bites-day-3-101114/
If you’re new to Lyme you may be wondering what ILADS is all about.
International Lyme and Associated Diseases Society (ILADS) is a group set up to help the successful treatment of chronic Lyme sufferers. The IDSA (Infectious Disease of America) do not believe in long term treatment, feel that all Lyme patients can be picked using the insensitive Elisa test and fail to recognise the needs of chronic sufferers claiming their ills are due to normal aches & pains of modern living. ILADS however advocate evidence based medicine where individuals are put on a tailored treatment plan suited for long term sufferers with a means to making them well.
Their view is that:
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.
* Conclusions: The ILADS Practice Treatment Guidelines revises and expand use of clinical judgment and empiric treatment.
Timetable For Development Guidelines
2001 Practice treatment Guideline proposed by the International Lyme and Associated Diseases Society (ILADS).
2001 The experts from the ILADS board proposed to prepare guidelines consisting of experts in primary care, rheumatology, immunology, hematology, preventive medicine, preventive medicine, and psychiatry.
2002 MEDLINE, other databases, references of articles, and the collective experience of board members in treating thousands of Lyme disease patients were reviewed.
2002 The board reviews drafts of the guidelines.
2003 The board adopts the final draft of the guidelines.
2003 The guidelines are sent out for external peer review.
2004 The guidelines are in press in the Expert Review of Anti-infective Therapy. Ther. 2(1), Suppl. (2004) Future Drugs Ltd.
2004 The guidelines were disseminated through ILADS. The first printing was sold out. The second printing is made available.
2004 The guidelines are adopted by CALDA and Lyme Disease Association (national).
2004 The guidelines are published in the summer 2004 issue of LymeTimes.
2004 The guidelines were validated with a POEM – timely treatment – Patient Oriented Medicine that Matters.
2004 The guidelines are expected to appear in the National Guideline Clearinghouse by the end of October 2004.
Future The guidelines will be reviewed and recommendations update accordingly.
NB: The Guidelines have now been updated in 2014, refer to top of page for links 🙂
The steering committee of ILADS is made up of the following members:
The ILADS Working Group
Daniel Cameron, MD, MPH Internal Medicine and Epidemiology,Mt. Kisco, NY
Andrea Gaito, MD Rheumatology, Basking Ridge, New Jersey
Nick Harris, PhD Immunology, Palo Alto, California
Gregory Bach, DO Family and Integrative Medicine, Colmar, Pennsylvania
Sabra Bellovin, MD Family Practice, Portsmouth, Virginia
Kenneth Bock, MD Family Practice, Rhinebeck, New York
Steven Bock, MD Family Practice, Rhinebeck, New York
Joseph Burrascano, MD Internal Medicine, East Hampton, New York
Constance Dickey, RN Registered Nurse, Hampden, Maine
Richard Horowitz, MD Internal Medicine, Hyde Park, New York
Steven Phillips, MD Internal Medicine, Ridgefield, Connecticut
Laurence Meer-Scherrer, MD Internal Medicine, Flamatt, Switzerland
Bernard Raxlen, MD Psychiatry, Greenwich, Connecticut
Virginia Sherr, MD Psychiatry, Holland, Pennsylvania
Harold Smith, MD Emergency Medicine, Danville, Pennsylvania
Pat Smith President, Lyme Disease Association, Jackson, New Jersey
Raphael Stricker, MD Hematology and Immunotherapy, San Francisco, CA
A copy of the original guidelines can be found at http://www.lymeproject.com/pdf/ILADS_guidelines.pdf
NB: The Guidelines have now been updated in 2014, refer to top of page for links 🙂
A copy of Joseph Burranscanos’s Advance Topics in Lyme Disease 16th Edition can be viewed here: http://www.ticktalkireland.org/Dr%20Burrascanos%20Guide%202008.pdf
This includes advice on diagnosis, treatments, herx reactions, co-infections, diet & supplements.
Pop the cork off the Champagne and let the fireworks rip! ILADS made its document submission for the IDSA Lyme disease review panel. And the weight of evidence was staggering–
Who: I headed the working group, which consisted of Drs. Cameron, Stricker, Liegner, Maloney, Green, Phillips, Zackrison, Tao Liu, Ph.D., Allison DeLong, M.S., and Barbara Blossom, B.A.
When: Submission received by IDSA on April 23rd.
What: Over 1600 pages of analysis and research studies. Close to 300 pages of original analysis contesting IDSA recommendations.
Why: Because the recommendations are—well, are not just, and because, well, because the “recommendations” are treated as “mandatory” by insurers, medical boards, hospitals—you get the picture.
How many? 10. The working group contested the following recommendations and assertions:
The Lab Diagnostic Test Requirement–Page 1090
The Restriction on the Use of Clinical Judgment—Pages 1089-90
The Prophylaxis of Lyme disease–Page 1100
The Denial of Persistence–Page 1118
The Restrictions on Specific Therapeutic Options–Recommendation 5, Page 1105
The Early Lyme disease Treatment Duration–Recommendation 1, Page 1104
The Late Neurologic Lyme Disease–Recommendation 3, Page 1113
The Recommendations for the Treatment of Arthritis –Recommendations 1 and 2, Page 1113
Post Lyme Disease Syndrome Definition—Recommendation 1, Page 1120
Post Lyme Disease Syndrome Treatment Limitation—Recommendation 2, Pages 1120-1121
To view details on the IDSA review head on down to:
ILADS founder & first president passes away aged 57
Dr. Teresa Royer MacKnight, 57, Andover, Maine
ANDOVER, Maine — Dr. Teresa “Terri” Royer MacKnight, 57, passed away on Sunday, Aug. 15, 2010, peacefully at her home in Andover.
She was born March 25, 1953, in Lewisburg, Pa., a daughter of Russell and Louise Royer, of New Columbia, Pa.
She graduated from Lewisburg High School, Class of 1971 and received her Doctorate of Osteopathic Medicine, Des Moines University in Iowa in 1979.
Dr. MacKnight practiced medicine in Hollywood, Fla., Seattle, Wash., Negley, Ohio, and Beaver, Pa., before moving to Maine in 1990. She practiced medicine in Rumford until being disabled by Neurologic Lyme Disease. She was one of the founders of the International Lyme and Associated Disease Society and the society’s first president in 1999. As a lecturer and author, she strived to help the medical community and the public to recognize, treat and prevent Lyme Disease. Her desire to help others also took her to Barrow, Ala.; American Samoa and into rural areas where she was able to help those without access to medical care.
Terri was a loving mother who treasured the time she spent with her son Michael and was delighted to see the wonderful young man he has grown into. He was the apple of her eye. She was known as a compassionate physician and a good friend to many who knew her.
Terri enjoyed gardening, skiing, snowshoeing, canoeing, snorkeling, biking, hiking, and wilderness camping. When not outside, she could be found in the kitchen where she enjoyed cooking for her family. Some of her fondest memories were those spent at camp with family and friends. She also enjoyed traveling and exploring new areas.
Surviving are her son, Michael, and his father, Dirk MacKnight, of Andover, Maine; her mother and father, Russell and Louise Royer, of New Columbia; one brother, Rod Royer, of Salt Point, N.Y.; and one sister, Robin Yost, of Milton, Pa.