Difficulties in Diagnosing Lyme Disease

Many of our patients with tick borne illness struggled for years before getting an accurate diagnosis. Unfortunately, they are not alone. A survey by Lymedisease.org of over 9,000 Lyme patients found that 62% of them took more than two years to get diagnosed. Why is it so difficult to diagnose Lyme?

The answer is almost as complex as the disease. Let’s break it down:

Bullseye: Not As Spot On As You May Think

The common perception that Lyme is easy to spot because it causes a bullseye rash is, in fact, a myth. While such a rash, called Erythema-Migrans or EM, is a hallmark sign of the disease, it is estimated as few as 27% of infected individuals develop a rash. It can also appear in a different form, such as a blotchy or spotted rash. Rashes can be in hard-to-spot places like on the head, behind the ears, or in the groin; they also can appear weeks, months or even years after the initial tick bite, if at all.

The Great Imitator

Signs of Lyme disease can be nebulous and can affect every system of the body, making the disease difficult to diagnose. Lyme is sometimes called the “Great Imitator” because symptoms such as fatigue, joint and muscle aches, fevers, headaches, and cognitive impairments mirror those of other illnesses. Lyme is commonly misdiagnosed as chronic fatigue, lupus, multiple sclerosis, rheumatoid arthritis, Parkinson’s, Alzheimer’s, fibromyalgia, and/or depression.

The Trickiness of Testing

Doctors who are not Lyme literate may have trouble differentiating Lyme from illnesses with similar symptoms because laboratory testing for Lyme is insensitive. The standard two-tiered test used by most physicians, which consists of an ELISA test followed by a Western Blot, misses more than 50% of positive Lyme cases. Both tests are indirect, meaning that they test for antibodies against Lyme, not for the bacteria itself. Lyme disease suppresses the immune system, and can also evade it; the body may not be able to see the bacteria due to it clustering in biofilms or hiding in tissue, and therefore may not create the antibodies necessary for a positive test.

The standard Western Blot test reads bands of Lyme antibodies present in your blood. The CDC guidelines, for which bands are necessary for a positive Lyme test, are outdated. They were originally designed for case reporting, not for diagnosis. Luckily, there are labs that do more sensitive testing. Igenex laboratory uses a more specialized Western Blot to detect a broader and more relevant range of bands than those considered in standard tests. Igenex also tests for two strains of Lyme bacteria, called B. burgdorefi, instead of only one, making it the most comprehensive test available for Lyme disease.

The Importance of a Clinical Diagnosis

As noted by the CDC, laboratory testing is helpful in diagnosing Lyme, but doctors must also look for signs and symptoms. The International Lyme and Associated Diseases Society (ILADS) concurs that clinical judgment is crucial in diagnosing and treating Lyme. In addition to using the most specialized testing available, we at Marin Natural Medicine Clinic evaluate your complete medical history and symptom presentation in an effort to make an accurate clinical diagnosis.

If you are experiencing symptoms of Lyme disease or have been diagnosed with one of its imitators, make an appointment with us to see if you may be suffering from tick borne illness.