Frequently Asked Questions
Children With Lyme- Dr. Jones Kids
Books, Films and Publications
Education, Support & News
Online Support Groups/Lists
The Following Sites and Information Contained Within
Are NOT Recommended
There are many articles and websites on the internet providing information about Lyme disease. Unfortunately, some are misleading, outdated, incomplete, questionable or inaccurate. Some were originally initiated or supported by those who have have ties to the infamous Lyme tests and kits, the short-lived Lyme vaccine that generated multiple law suits and was pulled from the market, those who have been involved with or promote questionable research findings based on inaccurate Lyme tests or the Infectious Diseases Society of America (IDSA) highly contested, "cost-effective", "insurance friendly" Lyme Treatment Guidelines which were determined by the Attorney General in Connecticut (Richard Blumenthal) to have been developed in a biased and unprofessional manner.
Therefore, for a number of reasons, the following articles, opinions and web sites are not generally recommended, especially by chronically ill Lyme patients and their physicians who are experienced in dealing with the devastation caused by improperly diagnosed or inadequately treated Lyme and tick borne diseases.
Infectious Diseases Society of America Lyme Disease Treatment Guidelines
A Critical Appraisal of Chronic Lyme Disease- Paul Auwaerter (Hopkins), Stephen Dumler (Hopkins), Gary Wormser (Previously from Hopkins), Edward McSweegan (Not from Hopkins but listed as such), et al.
Hopkin's John Meyerhoff- Lyme Treatment
Hopkin's Stephen Dumler- IDSA Guidelines Author
Hopkin's Paul Auwaerter- IDSA Guidelines Editor and Official Spokesman
Hopkin's Paul Auwaerter- Ten Clinical Pearls- Video
Hopkin's Paul Auwaerter- Issues and Controversies- Video
Maryland DHMH Information for Health Care Providers
IDSA Opposes Doctors and Patients Efforts in the Political Arena
Below are some of the Infectious Diseases Society of America (IDSA) Advocacy Efforts Opposing State and Federal Legislation designed to: increase research funding to develop more accurate tests, establish task forces and committees to enhance education and communication between agencies and help chronically ill patients and the health care professionals treating them. To see letters listed below, click here:
IDSA Sends Letter Opposing H.R. 1179 06/25/2009
Manhattan infectious-disease doctors- Laura Fisher, director of the Lyme Disease Center at New York Hospital-Cornell Medical Center (212-746-1771), and Christopher Busillo (212-238-0102) and Chester Lerner (212-238-0106) at New York University Downtown Hospital.
In Westchester, NY: Robert Nadelman (914-493-8865) and Gary Wormser (914-493-8865) at Westchester Medical Center.
In Nassau: Eileen Hilton (516-470-6900), director of the Lyme Disease Diagnostic and Treatment Center, and Sunil K. Sood (718-470-3480) at Long Island Jewish Medical Center.
In Connecticut: Eugene Shapiro at Yale-New Haven Hospital (203-688-4518) and Debra Adler-Klein at Stamford Hospital (203-325-0146).
Bruce Logan at Manhattan's New York University Downtown Hospital (212-608-6634) and Raymond Dattwyler at U Hospital, Stony Brook, in Suffolk (631-444-8364).
Rheumatologists- Thomas Argyros, director of the Lyme Disease Center at Lennox Hill Hospital (212-988-7680); in New Jersey: Leonard Sigal at Robert Wood Johnson Medical School (732-235-7210); in Connecticut: Robert T. Schoen at Yale-New Haven Hospital (203-789-2255).
Resources for Assistance
National and State Organizations
Air Care Alliance (http://www.aircareall.org/listings.htm)
The Air Care Alliance is a group of flying organizations whose volunteer pilots are dedicated to community service. This site's purpose is to connect volunteers that perform public benefit flying for health care, patient transport, disaster relief, environmental support, and other missions of public service with those who need help.
Benefits Checkup (http://www.benefitscheckup.org)
Benefits Checkup -is the nation's most comprehensive Web-based service to screen forbenefits programs for seniors with limited income and resources. Benefits Checkup includes more than 1,550 public and private benefits programs, such as: Prescription drugs, Nutrition & Food Stamps, Energy assistance, Financial, Legal, Health Care, Social Security, Housing, In-home services, Tax relief, Transportation, Educational assistance, Employment, and Volunteer services.
We provide limited grants for certain expenses related to cancer treatment.
Catholic Charities (http://www.catholiccharitiesusa.org)
Catholic Charities provides a wide range of services, from affordable low-income housing, to food banks, financial assistance,to youth counseling and health services. This site includes links to local sites throughout the U.S.
Citizen's Energy (http://www.citizensenergy.com/main/Home.html)
Citizens Energy Corporation created a number of assistance programs that help people afford energy, reduce health care costs, and serve a variety of other social and educational needs.
Disabled Children's Relief Fund (http://www.dcrf.com)
This organization provides disabled children with assistance to obtain wheelchairs, orthopedic braces, walkers, lifts, hearing aids, eyeglasses, medical equipment, physical therapy, and surgery.
Family Relief Fund (http://www.familyrelieffund.org/)
Family Relief Fund provides financial assistance to families who have children with Cystic Fibrosis and other chronic health problems.
First Hand (http://www.firsthandfoundation.org/)
First Hand helps the families of children with health problems address the financial aspects of their child's healthcare. 816-201-1569
Go Ask Alice (http://www.goaskalice.columbia.edu/index.html)
This is a Health Question and Answer site.
Health Resources and Services Administration (http://ask.hrsa.gov/pc/)
HRSA-supported health centers care for you, even if you have no health insurance. Youpay what you can afford, based on your income.
'www.health.gov is a portal to the Web sites of a number of multi-agency health initiatives and activities of the U.S. Department of Health and Human Services (HHS) and other Federal departments and agencies.'
Hill-Burton Facilities - Low Cost Healthcare (http://www.hrsa.gov/hillburton/hillburtonfacilities.htm)
This is a list of about 300 health care facilities nationwide are obligated to provide free or reduced-cost care to low-income families and individuals. Search the list for your state.
Insure Kids Now (http://www.insurekidsnow.gov)
The U.S. Department of Health and Human Services, provides free or low-cost health insurance in every state to children in working families. The insurance pays for doctor visits, prescription medicines, hospitalizations, and more. Children that do not currently have health insurance are likely to be eligible, even if their parents are working. Check this site for links to the program in your state, or call 1-877-543-7669.
Mental Health Services Locator (http://www.mentalhealth.org/databases/)
Almost every state has organizations that provide free or low cost counseling services.
Miracle Flights for Kids (http://www.miracleflights.org)
Provides free access to health care for people (especially children) who cannot afford transportation to treatment centers anywhere in America. They are not limited by distance and will use as many flights as necessary to get a sick patient to treatment. Request a flight online, or call 702-261-0494.
Multiple Sclerosis Foundation (http://www.msfocus.org/programs_events/prog_grants_bwmg.html)
The Brighter Tomorrow Grant is an award of up to $1,000 to provide goods or services that will help improve the quality of life of someone with MS.
National Eye Institute (http://www.nei.nih.gov/health/financialaid.asp)
Listing of organizations that provide financial aid for eye care.
National Eye Institute (http://www.nei.nih.gov/health/financialaid.htm)
Federal government assistance programs for eye care.
National Foundation of Dentistry for the Handicapped (http://www.nfdh.org/)
NFDH is a national charitable organization solely dedicated to meeting the dental needs of citizens with physical, medical, and mental disabilities.
National Hispanic Resource Helpline 1-800-473-3003 (http://www.selfreliancefoundation.org/hotline.htm)
The National Hispanic Resource Helpline is a national information and referral service that provides support for Hispanics throughout the nation who need information about educational, health and human service providers.
Remote Area Medical (http://www.ramusa.org/index.html)
One day free medical, veterniary, vision, and women's health. First come first served basis.
Salvation Army (http://www.usc.salvationarmy.org)
The Salvation Army offers utility bill assistance, emergency food pantry/vouchers,emergency financial assistance, general health screening and assessment, medical referrals and access to medical treatment. Check your local phone listings or this web site.
Sargent Shriver National Center on Poverty Law (http://www.povertylaw.org/)
Legal resources for advocates pursuing social and economic justice for poor people.
Susan G. Komen Foundation (http://www.komen.org/intradoc-cgi/idc_cgi_isapi.dll?IdcService=SS_GET_PAGE&ssDocName=Katrina)
Susan G. Komen breast cancer and Katrina-related funding options. Grant information and applications are available at the website.
Women's Health (http://www.hersource.com/breast/03/3d/cdcall.cfm)
Extensive listing of healthcare providers across the US who offer free mammograms and pap tests.
Please visit ModestNeeds.org and type in your State's name in the search box.
(Please also see subpages listed below for more information.)