If you have been diagnosed with a tick-borne illness, you may be feeling overwhelmed and frightened. This website has been developed to enable you to find the help you need. Likewise, if you have not been diagnosed but suspect you may have Lyme, this site offers some information about where you can turn. Regardless of your situation, it is important to be your own advocate when it comes to Lyme disease diagnosis and treatment.
Whatever your concerns with regard to Lyme disease, please know that you are not alone. Discussing your questions and concerns with others can be very helpful. Family and friends can be an excellent source of support, but there is no substitute to talking with others who are going through the same thing. Lyme disease support groups and online forums have been designed for this purpose.
If you have early Lyme disease and/or your symptoms are mild, you may feel alarmed by the information you read about chronic Lyme disease. The information about the seriousness of this illness is not intended to scare you, but hopefully you will recognize the need to seek antibiotic treatment as soon as possible. According to guidelines published by the International Lyme and Associated Diseases Society (ILADS), "The early use of antibiotics can prevent persistent, recurrent, and refractory Lyme disease. The duration of therapy should be guided by clinical response, rather than by an arbitrary (i.e., 30 day) treatment course." It is also important to be evaluated for co-infections. It may be helpful to review their pdf files, Top Ten Tips to Prevent Chronic Lyme Disease (pdf) and Prevent Chronic Lyme Disease Brochure (pdf).
Doctors often disagree on the diagnosis and treatment of Lyme disease. Many patients groups, including LymeInfo, encourage people to see a doctor referred to as a "LLMD", or "Lyme Literate Medical Doctor". This term is used amongst patients to describe any MD (Medical Doctor) or DO (Doctor of Osteopathy) who is knowledgeable about Lyme disease diagnosis and treatment as well as the diagnosis and treatment of related disorders. A LLMD can be in a number of different specialties of practice, but he/she most often adheres to the guidelines set forth by the International Lyme and Associated Diseases Society (ILADS). LLMDs generally have a lot of experience treating all stages of the illness, including chronic. The best ways to obtain the names of LLMDs in your area are as follows:
(2) Post to Online Forums found listed in LymeInfo's Directory.
(3) See the LDA's Automated Referral System.
(4) See the ILADS Officers.
(5) Still no luck? Try Roadback Foundation or Rheumatic.org.
To find a support group in your area, see the list of Support Groups. To partake in online discussions with Lyme patients, please see the online forums listed in the Disease Info Directory at this website. LymeInfo further recommends keeping informed via our Email News List. As is the case with this website, all of these resources are intended to supplement, not replace, the doctor-patient relationship.
Testing for tick-borne illnesses can be complicated, and disease must not be ruled out solely on the basis of a negative test result. However, LymeInfo considers IGeneX, Inc. (800.832.3200) and Medical Diagnostic Lab (877.269.0090) to be the top two labs in the country when it comes to testing for these diseases.
Must-See Links for New Patients:
Suspect Lyme Disease
Lyme Symptom Checklist
What are the Symptoms of Lyme?
Making the Most of your LLMD Visit
Synopsis of Coinfections
Chronic Lyme Prevention Campaign (pdf)
Parents of Children with Lyme
What is a Herxheimer Reaction?
Lyme Speak (Terms used online)
ILADS' Basic Information
Nine Reasons for a False Negative Test
50 Questions & Answers