Lyme disease is a complex infection that can affect various systems in the body including the joints, nervous system, heart and skin. Unfortunately, without an expanding ring-like rash (the “hallmark” bull’s eye rash is the most common skin manifestation), Lyme and other tick-borne illnesses often go undiagnosed and untreated, leading to deep seated infections and long-term impairments.
Many symptoms of Lyme are similar to other illnesses, which complicates diagnosis. The Centers for Disease Control and Prevention (CDC) recommends a two-step process when testing blood for evidence of antibodies against the Lyme bacterium. However, Lyme disease blood testing is fraught with problems, false negatives and false positives (false negatives could exceed 50%) and, at best, should only be an adjunct to a clinical diagnosis of the disease.
According to the CDC, the diagnosis should be based upon your symptoms, medical history, tick exposure, and geographical area (“endemic” locations). Blood tests should only be used to provide supporting evidence for the diagnosis.
Recently new Lyme and tick-borne disease treatment guidelines from the International Lyme and Associated Diseases Society were posted on the National Guideline Clearinghouse, part of the U.S. Department of Health and Human Services. The new guidelines encourage clinicians to work with patients to make decisions about their best treatment options based on the individual’s personal needs and circumstances. For this reason, it is important to be armed with as much background information as possible.
After a suspected tick/insect bite, if you see a rash(es), even if it’s not at the site of the bite, you or your physician should take a picture of it, date it, and the doctor should place a copy of it in your medical records.
It is important to keep a log, timing the start of the symptoms and keeping track of those that come and go over time. Fluctuating symptoms are hallmarks of Lyme disease. The log should also contain a record of when all medications (including non-prescription) are begun, ended, or have a dosage change.
Unlike adults, children with Lyme disease often can’t explain what feels wrong. They suffer when their bodies hurt, when they can’t get enough sleep at night, when they struggle at school, when they don’t feel like playing. Because some of their symptoms, such as irritability, joint aches and difficulty concentrating, can mirror “growing pains,” legitimately sick children are often told that their problems are “all in your head.” Parents and teachers may suspect the child or adolescent is simply trying to avoid schoolwork, daydreaming, or acting up, when, in fact, a tick-borne illness might be the cause.
Read more about the symptoms of Lyme disease or download a complete checklist to help you understand more about the illness. Even if you have been told that your blood tests are negative, do not be deterred from seeking further diagnosis.