This new estimate suggests that the total number of people diagnosed with Lyme disease is as much as ten times greater than the number of cases reported to the CDC annually, at 30,000. With such large numbers, you might think that diagnosing Lyme disease is fairly simple. Unfortunately, this is not the case.
Why is Lyme so Hard to Diagnose?
Lyme is often called "the great imitator" because the disease can mimic symptoms of more than 350 different types of inflammatory diseases. Typically, if a patient comes to the doctor with a suspicion of Lyme based on the discovery of a tick attached to the skin, a bull's eye rash, and joint pain and swelling, the doctor might order lab tests to confirm the presence of a spirochete bacterium called Borrelia burgdorferi (Bb). But far too often, a person who is bitten by a tick carrying Lyme disease never sees the tick.
Ticks are most likely to transmit Lyme disease when they are in their immature stage, called the nymphal stage. At this point, the tick is smaller than a poppy seed. Even when a nymphal tick is fully engorged with blood, it may be smaller than the size of a pinhead. And while ticks can attach to any part of the body, they are most often found in hard-to-see areas such as the groin, armpits and scalp. Both immature and adult ticks can transmit Lyme disease. Recent studies are showing that Lyme may also be carried by mosquitos and biting flies.
When it comes to the telltale bull's eye rash that is a hallmark of Lyme disease, the International Lyme and Associated Diseases Society reports that only 35% to 60% of patients report a rash. Little more than half of patients recall a tick bite, and only 20% to 30% report the joint swelling that is a typical symptom of early stage Lyme disease.
Common Diagnostic Tests for Lyme Disease
Lyme disease testing is notorious for being unreliable, leading to misdiagnoses and inappropriate patient care. There are a number of commonly used tests that can indicate exposure to the Lyme organism at some point in time, but the sensitivity of these tests is known to be low, and can miss as many as 30% to 70% of cases.
The Western blot identifies Lyme disease antibodies, including both IgG and IgM assays. This test maps out information on "bands" with specific bands related to Lyme disease representing evidence of exposure to Borrelia Borgdorferi.
The ELISA test is a simple, inexpensive test that can detect antibodies created as a response to an infection with Borrelia Borgdorferi. A newer form of the test, the C6-peptide ELISA, is more accurate, and has been shown to confirm exposure in more than 60% of patients with a very small percentage of false positives. A positive ELISA test should be followed up with a Western blot test to confirm results.
One relatively new test for Lyme disease is the Polymerase Chain Reaction (PCR) test, which confirms that Lyme bacteria DNA are present. A positive PCR test almost always guarantees that a patient has Lyme disease, as long as the test analysis has been done properly.
Another important test for diagnosing Lyme and tracking progress is the CD57. Lyme disease is known to suppress the immune system and decrease the quantity of the CD-57 subset of natural killer cells. Based on where the patient is in the range, this test can indicate how active the Lyme infection is and whether a relapse is likely to occur after treatment ends. However, if the CD57 comes back within normal range, this does not rule out Lyme disease and co-infections.
The most sensitive and reliable test available today for Lyme diagnosis is the Lyme Culture test, created by renowned Lyme disease specialist Dr. Joseph Burrascano. This test allows the Lyme bacteria to be grown outside the body in cultures, something previously not available. The new test can diagnose new cases of Lyme disease and also can identify active Lyme disease that has not been adequately treated.
Research and clinical experience has revealed that chronic Lyme patients nearly universally are co-infected with multiple pathogens, including Babesia, Bartonella, Erlichia, Anaplasma, and Mycoplasma. Additionally patients with Lyme disease often have weakened immune systems, and are likely to be found with viruses such as Epstein Barr, Cytomegalovirus and HHV6. Diagnosis of Lyme disease can often be determined or confirmed by the presence of any of these additional co-infections
It should be noted that it can take up to two months after becoming infected before the antibodies to Lyme disease can be detected in a blood test. Additionally, the most commonly used tests to diagnose Lyme disease are known for delivering false negative results. The Lyme Culture test is the most sensitive and accurate of all.
Lyme disease is a complex illness that can simultaneously include bacterial, viral, parasitic and fungal co-infections. Proper testing to confirm or rule out Lyme disease is critical, as treatment is most successful when done immediately after infection. An error or delay in getting a proper diagnosis can allow the Lyme bacteria and co-infections to infiltrate the body, making recovery more difficult. If left untreated, Lyme disease can spread to joints, the heart and the nervous system.