Resources
NEW INFORMATION WILL BE ADDED AS AVAILABLE.
Lyme and Tick Borne Disease Resources
Internet
http://www.ilads.org/ International Lyme and Associated Diseases Society
http://www.lymediseaseassociation.org/ Lyme Disease Association
http://www.lymedisease.org/ Lyme information and advocacy
http://www.empirestatelymediseaseassociation.org/ Empire State Lyme Disease Association provides listing of NY State Lyme Support Groups, events and Lyme information
http://www.lymenet.org/ information and worldwide support group listings
Tick Testing
NYSDOH no longer identifies ticks, previously they would identify type and estimate length of attachment (Stony Brook now does this, see below)
https://www.tickreport.com/ UMass tick testing service, quick results, notify by email. $50 insurance does not pay
http://tickencounter.org/ tick testing, information, pictures of ticks, tick ID service; tick testing for infection will be sent to UMass (above link)
http://medicine.stonybrookmedicine.edu/pathology/tick Will identify tick and estimate length of attachment for free if reported over the phone, if want written report will charge a fee. Do not test for infection
Suggested Reading
Unlocking Lyme by Dr. Rawls This book is considered an important reference book for Lyme Patients and practitioners. Initial antibiotic treatment is covered as well as extended herbal treatments. If you want to get an insight into what is happening to the body after being infected with Lyme, and how to treat this disease, this is a must read.
Why Can’t I Get Better Richard Horowitz MD
Discusses MSIDS, the concept of Multiple Systemic Infectious Disease Syndrome; why it is more than just Lyme making people chronically ill.
Healing Lyme Stephen Harrod Buhner
Herbal Treatment with detailed explanation of how borrelia burgdorferi (the Lyme spirochete) affects the body.
Cure Unknown Pamela Weintraub A science journalist whose entire family became ill after moving to NY City suburbs. Uncovers the politics of the disease, why it is not being properly diagnosed and treated. Essential reading for anyone sick but being told nothing is wrong with them, ride it out, viral etc
The Lyme Disease Solution Kenneth Singleton MD, best for the anti inflammatory diet discussed in his treatment plan. Good overview of treatment.
Lab Testing
http://www.igenex.com/Website/ Lyme Western Blot covered under Medicare
Test uses multiple strains and includes Lyme Specific bands 31 and 34
They also will test ticks but only for pathogens, 68.00 for each pathogen, will not identify type of tick.
Documentaries UNDER OUR SKIN (2008) & UNDER OUR SKIN 2 - EMERGENCE (2014) are being used by support groups for community viewing to promote Lyme Awareness and to educate the public on the difficulty involved in obtaining diagnosis and treatment of Lyme Disease. Under Our Skin can be found on Hulu.com. Libraries often have copies or contact your local Lyme Support group for a showing.
This list is not all inclusive. Those affected need to research for themselves and determine what is best for them. There is much information on the internet, good and bad.
There is no miracle cure, just as the disease affects each individual differently no one treatment works for all. It is always best to work with a medical provider knowledgeable in the treatment of Lyme and other tick borne illnesses.
Most effective is prevention of tick bites; next would be early detection and appropriate treatment. Once advanced the disease can be very difficult to treat.
Recent Consumer Reports Ratings of Insect Repellents: TOP 5
Sawyers Fisherman’s Formula 20% Picaridin
Repel Lemon Eucalyptus 30% oil of eucalyptus
Both repelled mosquitoes and deer ticks for at least 7 hours Consumer Reports found
RECOMMENDED rating
Repel Scented Family 15% DEET
OFF Deepwoods VIII 25% DEET
Natrapel 8 Hour another Picaridin product
SUPPORT - EDUCATION - RESOURCES