10 Things to Know About Lyme

I've talked before about my daughter's and my struggle with Lyme Disease. The sad thing is many, many people are infected with Lyme and don't even know it. It is so important to get treated early when treatment is most successful.

Below are ten things you should know about Lyme (via Lyme Disease Research Database)

1. Lyme disease is a bacterial infection known to be caused by the bite of a tick. Tick bites are not always detectable, and every person who contracts Lyme has a unique response. Contrary to old notions, Lyme can be extremely difficult to cure. Your best approach is to educate yourself and take a proactive stance in your recovery.

2. The bull's eye rash is not a reliable marker of Lyme. Many people, perhaps even as high as 80% of people who have Lyme, never get the bull's eye rash. In addition, Lyme disease is a superb mimic of hundreds of other diseases and conditions. Therefore, Lyme is frequently misdiagnosed.

3. Lyme tests used by IDSA doctors (the Western Blot and the ELISA) are notoriously unreliable. Lyme-aware doctors (also called LLMDs or Lyme literate MDs) observe the patients' symptoms and make a clinical diagnosis. As a patient, it is preferable to avoid delayed treatment, and LLMDs will begin treatment even while test results are pending, if they deem it appropriate.

4. There are two different standards of care for Lyme disease. The opposing views represent two organizations made up of physicians. On one side is the IDSA (Infectious Diseases Society of America). On the other is ILADS (International Lyme and Associated Diseases Society). Your doctor is probably aligned with one side or the other. This will directly affect your diagnosis, your treatment, and your recovery.

5. Many highly skilled, well-educated doctors are not trained how to recognize the symptoms, diagnose and/or treat Lyme. It is not unusual for people with Lyme disease to seek help from multiple doctors before finally receiving a positive diagnosis and beginning treatment.

6. Lyme is a multistage illness. You may receive a positive diagnosis while the disease is in the early stage. In this case, many doctors agree that the antibiotic protocol recommended by the IDSA will help you get better quickly. Many people, however, discover they have a Lyme infection when the illness has progressed to the second or tertiary stages. In this case, antibiotics may be administered long-term, via IV, and/or alternative treatments are frequently advised.

7. If you have been diagnosed with late-stage Lyme (also called chronic Lyme or Post-Lyme Syndrome), and you don't remember getting a tick bite, you are not alone. Many people do not recall the tick bite, and are not correctly diagnosed until the disease has progressed. Take heart. There are many treatment options you and your doctor should be aware of.

8. Your doctor may not be willing to test you for Lyme disease. Myths are rampant, such as, "[Your state] doesn't have Lyme disease."

9. Ticks do not simply carry Lyme bacteria. Chances are high that along with Lyme, they will deliver co-infections such as Babesia, Bartonella, and Erlichiosis. Therefore, the possibility of co-infections must also be detected and treated.

10. New testing options are becoming more widely available. Educate yourself about the types of tests available, and ask your doctor if these tests will be covered by your health insurance plan.