The Ad Hoc Patient and Physician Coalition against IDSA Proposed Lyme Guidelines

SEP 7, 2019 — 

Cc: (91 Undisclosed recipients)
Date: September 7, 2019 at 8:48 AM
Subject: The Ad Hoc Patient and Physician Coalition; Comments of the IDSA Proposed Lyme Guidelines September 6, 2019

To the Tick-Borne Disease Working Group;

Please follow the link below to see comments to the IDSA Proposed Lyme Guidelines. These comments are endorsed by members around the world because what has been established here in the United States has adversely affected public health globally.

The link provided is from my personal Dropbox storage area.

The Ad Hoc Patient and Physician Coalition

Comments of the IDSA Proposed Lyme Guidelines September 6, 2019

About the Ad Hoc Patient and Physician Coalition: The Ad Hoc Patient and Physician Coalition consists of patients and physicians who are concerned that the proposed Lyme disease guidelines of the Infectious Diseases Society of America (IDSA), American Academy of Neurology (AAN), and American College of Rheumatology (ACR) will further restrict access to care and harm patients by leaving them undiagnosed and undertreated.The coalition consists of over 75 organizations, from 8 countries: the US, Canada, Australia, UK, France, Netherlands, Germany, Belgium (including, the national Lyme Disease Association, Bay Area Lyme Foundation among others) and the International Lyme and Associated Diseases Society, which represents clinicians who treat Lyme disease nationwide. (List of signatories attached.)

These comments were authored by Lorraine Johnson, JD|MBA, CEO and Dr. Elizabeth Maloney, who represents the International Lyme and Associated Diseases Society. The comments were filed on August 8, 2019 and revised on September 6, 2019.

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Ad Hoc Patient and Physician Coalition Members As of September 6, 2019

The following 77 organizations have endorsed the Ad Hoc Patient and Physician Coalition Comments of the IDSA Proposed Lyme Guidelines. (List updated Sept. 6, 2019)

Countries represented: United States, Canada, Australia, France, United Kingdom, Netherlands, Germany, and Belgium.

Alabama Lyme Disease Association

Arkansas Lyme Coalition

Arkansas Lyme Foundation

Association Québécoise de la Maladie de Lyme (Canada)

Bay Area Lyme Foundation

BC Lyme (British Columbia, Canada)

Brookfield/Wolfeboro New Hampshire support group

Borreliose-Bund, Germany

Canadian Lyme Disease Foundation

Central Massachusetts Lyme Foundation

Charles E. Holman Morgellons Disease Foundation

Chronic Lyme Disease Support and Protest UK.

ChroniLyme (Lyon, France)

Colorado Tick-Borne Disease Awareness Association

Dean Center for Tick Borne Illness, Massachusetts

Dutch Lyme Association (Lymevereniging), Netherlands

Florida Lyme Disease Association

France Lyme, Association de Lutte Contre les Maladies Vectorielles à Tiques (France)

Howard County Lyme Awareness Group, Maryland

Hudson Valley Lyme Disease Association

Illinois Lyme Association

International Lyme and Associated Diseases Society

Kentucky Lyme Disease Association

Le Droit de Guerir (“The right to heal”), France

Litchfield County Lyme Network (Connecticut)

Living with Lyme, London/Middlesex (Canada)

LivLyme Foundation

Lyme Action Network

Lyme Alliance of the Berkshires

Lyme Association of Greater Kansas City

Lyme Center, Chico, California

Lyme Disease Association (US)

Lyme Disease Association of Australia

Lyme Disease Association of Southeastern Pennsylvania

Lyme Disease Association, Rhode Island Chapter

Lyme Disease Education & Support Groups of Maryland

Lyme Disease UK

Lyme Hope (Canada)

Lyme-int Association (Belgium)

Lyme Newport (Rhode Island)

Lyme Ontario (Canada)

Lyme Stats 57

LymeLight Foundation

Madison Lyme Support Group

Massachusetts Lyme Legislative Task Force

Memphis Tennessee Lyme Network

Midcoast Lyme Disease Support & Education

Military Lyme Support

MSIDS, Inc, Australia

NE Ohio Lyme Foundation

New Brunswick Lyme Disease Association Inc.- LymeNB (Canada)

New Jersey Lyme Resource

New York City Lyme Disease Support Group (Action Alliance Against Tick-borne Diseases), Germany

Ontario Lyme Alliance (Canada)

PA Lyme Resource Network (Statewide)

PA Lyme Resource Network, Bucks County

PA Lyme Resource Network, Columbia County

PA Lyme Resource Network, Lehigh Valley

Patient Centered Care Advocacy Group

Pennsylvania Lyme Disease Awareness Committee of Chester-Delaware County Farm Bureau (PLDAC)

Penticton, BC area Lyme Group (Canada)

Sam’s Spoons Foundation for Lyme Support & Education

Southern Arizona Lyme Disease Association

Southern Oregon Lyme Disease

Texas Lyme Alliance

Tick Wise Education, Inc. (501c3)

Time for Lyme, ASBL (Belgium)

TxLyme Yahoo Online Support Group (Texas)

Utah Coalition for Lyme Disease

Vernon Lyme Disease Support Group, Vernon, BC (Canada)

VIRAS – Vector-borne Infections: Research, Analysis, Strategy (UK)

VOCAL Ottawa (Voices of Canadians About Lyme)

Wisconsin Lyme Network

York North Lyme (Canada)


Carl Tuttle

Lyme Endemic Hudson, NH


For more on the proposed IDSA Lyme treatment guidelines:


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