What is Lyme Disease & Why is it So Hard to Catch?

We all know someone with Lyme Disease. They are usually really sick. But, what exactly is Lyme Disease?

Lyme Disease is far more complicated than a series of blog posts could cover. There are experts who have compiled research and written books that will educate you about Lyme Disease in a far superior way than I ever could. But, I have a deeply personal interest in Lyme, as I was diagnosed with it late in life. My sister was also diagnosed with it and it is a hidden problem in many patients with chronic and resistant illness. The wealth of opinions on Lyme Disease can be overwhelming for the average person. But, with the lens of personal experience, I hope to pass on a clear and concise framework for navigating suspected Lyme disease. 

What is Lyme Disease?

Lyme Disease has traditionally been understood to be an illness contracted by the Spirochete bacteria Borrelia burgdorferi. Textbook Lyme Disease starts with a bullseye rash called erythema migrans and occurs with flu-like symptoms of fever, joint pain, fatigue, and headaches. If left untreated, the CDC recognizes Lyme Disease can progress to a chronic illness creating arthritis, heart rhythm abnormalities, and problems with nerves. With this simple explanation, we have already entered into confusing territory. In the past few decades, dedicated doctors, researchers, pathologists, infectious disease specialists and other bright minds have poured through the research on Lyme Disease in a way that has broadened the conventional understanding of Lyme Disease. Everything about Lyme Disease, from what causes it, to how it is diagnosed, to the long term symptoms it creates are far more complex and vast than the neat and tidy CDC definition. 

Conventionally, Lyme Disease and Borrelia burgdorferi are equivocal. However, research has identified dozens of Borrelia species able to create Lyme-like illness. These include Borrelia mayonii (recognized by the CDC), Borrelia afzelii, Borrelia garinii, Borrelia bavariensis, Borrelia spielmanii, Borrelia hermsii, Borrelia turicatae, Borrelia miyamotoi, Borrelia parkeri, and Borrelia burgdorferi sensu lato. In many patients with Lyme Disease, there are multiple of these species working together to create disease. 

Lyme Disease is defined as a tick borne illness. Originally, there was one type of tick identified as responsible for transmitting Lyme Disease: the deer tick (Ixodes scapularis). However, epidemiological observations of Lyme Disease have demonstrated that other types of ticks are also able to spread Lyme Disease. Some researchers have begun to suspect other vectors of transmission including fleas and ticks. Lyme Disease is also believed to be transmitted sexually and is known to cross the placenta and be transmitted from mother to offspring. 

How Do I Know If I Have Lyme Disease? 

If you ask your primary care doctor to be tested for Lyme Disease, they will run antibodies for Borrelia burgdorferi. If the antibodies are positive, this initial evaluation (called an ELISA) will be followed up with a test called a Western Blot, which looks for even more antibodies to Lyme Disease. The results of a Western Blot are interpreted using CDC criteria, which require a certain amount of each type of antibody to be positive. 

An MD, pathologist educator once told me that if you use the CDC criteria to diagnose Lyme Disease, you will miss 80% of Lyme Disease cases. There are many reasons why this is true. Let’s start with the first antibody test that is run. It is estimated that this test is negative in 50% of people who actually have Lyme Disease. This means that half of Lyme Disease cases will be missed with the first step of a simple conventional test. If you do get the follow up Western Blot run, there are problems with that test too. 

The Western Blot test requires a patient to produce a certain amount of antibodies to Lyme Disease to be detected on a test. This is problematic because Lyme Disease inhibits the immune system, so many patients do not produce any antibodies to it or do not produce enough antibodies to be detected on a Western Blot. Besides this error in the test itself, CDC guidelines for interpreting a Western Blot are additionally problematic. CDC guidelines for interpreting this test were developed to monitor, not diagnose, Lyme Disease. Using criteria designed to monitor disease in order to diagnose a disease is like trying to cook with a shoe instead of a spoon. You need the right tool for the right job. Furthermore, CDC criteria does not distinguish between the bands that are positive. In evaluating a Western Blot, your doctor will look at bands that represent the antibodies in question. Some of the bands are very specific to Borrelia burgdorferi and others can be created by the presence of another infection. One or two positive bands highly specific to Borrelia burgdorferi can be more suggestive of Lyme Disease than 3-5 general infectious bands. 

CDC criteria for a positive test also requires a certain number of bands representing IgG antibodies and a certain number of bands representing IgM antibodies. This can be a problem because patients with chronic Lyme Disease often only produce IgM antibodies. Furthermore, both the ELISA and Western Blot tests only test for antibodies to Borrelia burgdorferi and no other type of Borrelia illness, running the risk of missing tick borne illness created by another type of Borrelia species (this has happened to me in clinical practice before)! Conventional testing can be useful in deciding whether to pursue more detailed Lyme Disease testing, but should be evaluated by a skilled clinical practitioner. If your primary has tested you for Lyme Disease and tests came back negative, chances are they ran the testing described above and the results mean very little. 

Beyond the flaws in conventional testing, the nature of Lyme Disease itself makes diagnosing it with laboratory testing tricky.

Borrelia spirochetes are masters at evading the immune system. One way in which these spirochetes accomplish this is by hiding inside of cells. This is a strategy used by many chronic infections. Once inside the cell, infections are invisible to the immune system and no antibodies will be produced, allowing infections to be overlooked on antibody testing. 

Borrelia burgdorferi is one of the few chronic infections that can go dormant. One of the phases of its life cycle is

called a cyst phase. It enters this phase of its life cycle in response to stress and exists in a dormant, non-reproductive state for years. Cyst forms of Borrelia burgdorferi are both difficult to detect on testing since it is inactive, and much more resistant to treatment than active borrelia.

With these traits, Lyme is the foremost stealth, persistent infection. The havoc it wreaks while hiding from conventional testing and the immune system, can cause exteme damage to people's lives. While good Lyme tests are available, according to the CDC, Lyme is actually a clinical diagnosis! This means that you need to work with a good Lyme Literate Practitioner (like myself) who knows how to interpret test results and symptoms to find out if you actually have Lyme.