The difficulty in detecting Lyme
Editor’s note: Second in a three-part series on Lyme disease.
FAIRMONT – In Minnesota, the summer months are feeding season for the deer tick nymph, the second stage in a tick’s life, when the miniscule arachnid is just the size of a pin head.
This is when most cases of Lyme disease are reported, and it’s also when the tick is likely to go undetected. How long a tick has to be attached to the body to transfer the bacterial infection is a point of debate, but the commonly accepted timeframe is 24 to 36 hours. In Europe, however, ticks have been found to transmit Lyme disease much more quickly.
Symptoms of Lyme disease can take anywhere from three to 30 days to manifest. Since it takes time for the Borrelia burgdorferi bacteria to spread through the body, blood tests done in the early localized stage of Lyme disease almost always show negative results.
But even when the bacteria has spread throughout the body, the blood tests used to diagnose Lyme disease, by almost anyone’s standards, can be finicky – if a physician even thinks to look for Lyme disease.
Before Blue Earth resident Sue Hauskins was diagnosed with Lyme disease in 2010, she was diagnosed by Mayo Clinic in Rochester with chronic fatigue syndrome, fibromyalgia and Hashimoto’s thyroiditis.
“I felt like I had the flu all the time. I had swollen glands, pains in my legs, horrible, horrible fatigue,” said Hauskins, who works at the Blue Earth city clerk. “… I just kept getting sicker and sicker and sicker, and nobody could tell me what was wrong.”
Hauskin’s daughter, Dr. Breana McElgunn, was not satisfied with the earlier diagnoses, and the Montana-based naturopathic physician encouraged her mother to get tested for Lyme disease.
“These are just symptoms, not the cause,” McElgunn told her mom.
McElgunn suggested her mother have blood drawn, and then have the sample sent to a lab out of California called IGeneX. A Western Blot test showed Hauskins did have Lyme disease, and she was able to begin treatment.
Before her treatment could begin, however, she needed to find a Lyme doctor, Hauskins explained.
By “Lyme doctor,” Hauskins actually means “Lyme-friendly doctor,” or someone who would believe her diagnosis. The speculation she encountered from various physicians until she found such a doctor came in part because her diagnosis was not reached following Centers for Disease Control and Prevention recommendations.
“I can appreciate people’s doubt,” she said, “but I didn’t have any choice. I just kept getting sicker and sicker. The next step was a rest home.”
When Jessica Sheehy, a physician assistant and Mayo Clinic Health System infectious diseases specialist in Mankato, suspects a patient has Lyme disease, she follows CDC protocol: A blood sample is first sent off for what is commonly known as an ELISA test. If the result is positive, another blood test called the Western Blot is called for. If this test comes back negative, it overrules the ELISA results.
But Lyme disease afficionado Dr. Elizabeth Maloney warned health care practitioners against the two-tier testing approach at a health care seminar held this year in Fairmont.
“With two-tier testing, they don’t care about false negatives, they care about false positives,” she said, believing that the CDC recommendations are from an epidemiologist’s viewpoint, not a clinical perspective.
That’s why she encourages clinicians to keep an open mind with negative results.
“Right now, our testing is so inaccurate. That’s part of the controversy over who has Lyme,” she said.
The problem, she says, is that the tests are not standardized, and the results are not reproduceable. She describes the Western Blot as a “snapshot in time.” The results can change from one day to the next, in part due to the nature of the bacteria, which she says only travels through the bloodstream for brief periods of time before burrowing deep into the tissue of its human host.
“How sensitive should the test be?” Maloney asked. “If it’s too sensitive, it’s not specific enough. It’s too specific, it’s not sensitive enough. It’s like a teeter totter.”
Even if an ELISA test does come back negative, Maloney recommends sending off for a Western Blot if a patient is exhibiting a case for Lyme disease. But that recommendation comes with a word of warning: “Most labs don’t like to do this test. It’s time-consuming and finicky.”
Dr. Steve Parnell of Fairmont is suggesting to his patients with suspected Lyme disease that they have their blood samples sent off to IGeneX, which specializes in testing for Lyme disease and other tick-borne diseases.
IGeneX is a commercial lab, and patients must pay out-of-pocket for the testing. The bill from IGeneX, which runs about $500, is often covered by insurance, when patients submit the expense, according to Parnell.