Lyme Disease Diagnostic Challenges

The CDC recommends a clinical diagnosis, including symptoms and exposure to infected ticks. The FDA Public Health Advisory dated July 7, 1997 states, “Physicians are advised to base diagnosis on history (including symptoms and exposure to the tick vector), physical findings and laboratory data other than the anti Bb blood results.” Lyme disease must not be ruled out solely on the basis of a negative test result. The results of commonly marketed antibody tests to detect Borrelia burgdorferi (anti Bb), the organism that causes Lyme Disease, may be misinterpreted. Not only can Lyme disease be incorrectly diagnosed as other conditions, it can also occur concurrently with other conditions or be diagnosed incorrectly. Therefore, patients who suspect Lyme disease must have a full clinical evaluation by a knowledgeable, “Lyme Literate” physician. While a “bulls-eye” rash is diagnostic for Lyme disease, the types of rashes seen in Lyme disease vary greatly. A significant number of patients do not recall any rash or tick-bite. Bites may go unnoticed, especially in the spring, when ticks are small. Transmission may also occur without a bite, (i.e. placental transmission, blood transfusion, etc.) Symptoms can appear quickly or develop over time.

Misdiagnosis Issues:

“Lyme disease is the latest great imitator and should be considered in the differential diagnosis of MS, ALS, seizure and other neurologic conditions, as well as arthritis, CFS, Gulf war syndrome, ADHD, hypochondriasis, fibromyalgia, somatization disorder and patients with various difficult-to-diagnose multi-system syndromes.” International Lyme and Associated Diseases Society (ILADS),

Some Possible Infections Transmitted by Ticks:

Lyme Disease
Ehrlichiosis*
Rocky Mountain Spotted Fever*
Babesiosis
Bartonellosis
Tularemia

*prevalent in Southeastern Pennsylvania.

Symptoms

Early in the illness Lyme disease can be confused with the flu, but as the disease progresses it can lead to cardiac, musculoskeletal, neurological, and/or other system involvement. Patients with chronic Lyme disease often experience severe headaches, fatigue, pain, insomnia, and memory problems. Chronic Lyme disease can render people completely disabled. For a comprehensive list of symptoms, click here.

Treatment:

Lyme disease is treated with antibiotics, either orally or intravenously. Prompt and thorough treatment early in the illness is the most effective method for preventing a persistent, disabling condition. There is no known cure for chronic Lyme disease, and its treatment is surrounded by much controversy. Many patients find improvements when treated long term, either for Lyme disease bacterial infection and/or for the presence of co-infection.

Why Don’t Most Cases of Lyme Disease Get Reported?

Support groups have helped thousands of people with Lyme and Lyme-like illnesses in central, southern, and western states. Only a very few of these cases were reported.

Many doctors, unaware that it is in all 50 states, don’t suspect it.
Diagnosis is difficult:
- Symptoms resemble other diseases.
- Tests are not very sensitive.
- Many, perhaps most, cases don’t get diagnosed.
Most diagnosed cases don’t meet reporting criteria. The CDC revised their reporting criteria in 1996, 2008, and 2011 so that fewer cases could be reported.
Most cases that do meet reporting criteria don’t get reported. The CDC estimates that only about 10% of cases that meet reporting criteria are actually getting reported.