Lyme disease is a tick-borne illness caused by the bacteria Borrelia Burgdorferi. Untreated, it can cause headaches, brain fog, arthritis, rashes, heart palpitations, severe fatigue, and even facial paralysis. It was officially discovered in 1975. So why is it that we still don't have an accurate test to diagnose it? Why do those who suffer from it often go years without a proper diagnosis, simply because their test results come back negative?

As someone who suffers from Lyme disease, I know firsthand how frustrating it is to struggle with getting a proper diagnosis, even though I was one of the lucky ones who came back with a positive test result. It took me 2 years to finally get diagnosed which is much shorter than most unfortunately. Far too many doctors will mistakenly rule out Lyme disease as a possibility because of test results that may only be 50% accurate. And when an undiagnosed Lyme patient has to endure it alone, the consequences can be devastating.

But why is Lyme testing so inaccurate to begin with? There are several reasons why someone who's Lyme positive might receive a negative test result. That's why Igenex and I have teamed up to explain exactly why Lyme disease tests are so inaccurate and why they shouldn't be exclusively relied on to diagnose Lyme disease. If you want to get right into it, click on the video to see us break it down. Or, keep reading to get the highlights of our discussion.

What tests are currently available for Lyme Disease?

Elisa

Elisa stands for enzyme-linked immunosorbent assay. Elisa is an indirect test. This means that rather than testing for the infection itself, it only detects the presence of antibodies that your body produces in response to the bacteria that causes Lyme disease. The Elisa test is typically the first screening test a doctor will use if they suspect Lyme disease. According to the CDC, if the initial Elisa test comes back negative then there's no need for further testing. But what the CDC fails to take into account is that Elisa produces a false negative nearly 50% of the time. It's truly terrible how many people never get further testing beyond this point. But the fact is, they didn't fail the test -- the test failed them.

Western Blot

If your Elisa test comes back positive, the Western blot is usually the next step on the road to a Lyme disease diagnosis. Western Blot also analyzes for Lyme antibodies, but it takes it a step further than Elisa by reporting reactivity against proteins found in Lyme bacteria. For a positive Western Blot result, at least 5 of the bands must come back positive. Although Western Blot is considered to be the most accurate Lyme test available, it's still only 80% accurate even under the best circumstances. Many people never even make it to this stage of testing because of a negative Elisa result or because their doctors don't want to order this test.

IGeneX Immunoblot

IGeneX is considered the best laboratory out there for analyzing Western Blot tests. IGeneX uses more advanced techniques and methods to identify Lyme antibodies than other labs, which can lead to a more accurate result. However, even they acknowledge that their test results may not be 100% accurate and that it is imperative to see a Lyme Literate Doctor to assess the whole picture and conduct a clinical diagnosis. IGeneX also screens for other co-infections such as Bartonella, Babesia and Tick-Borne Relapsing Fever which call all mimic Lyme symptoms.

DNA Connextions - PCR

DNA Connextions is a private company that offers its own Lyme screening test for people concerned that they may have Lyme. The DNA Connections PCR test is unique because it doesn't just test for the genes that are found in Borrelia Burgdorferi, but also for co-infections that frequently occur alongside it. Even if you don't test positive for the Lyme bacteria, the presence of a co-infection can tip you off to Lyme disease. Although, it's still not a completely surefire way to diagnose the disease.

Why are the tests so inaccurate?

If you have Lyme disease, it's imperative that you get diagnosed as soon as possible, so that you can be treated before the disease causes serious harm. But if timing is so crucial, why is it that after nearly 45 years since Lyme disease was officially discovered, we still don't have a 100% reliable test to diagnose it? There are a few different reasons why Lyme Disease is difficult to test for. The first is because we don't currently have a reliable way to test for the disease itself. We only have indirect methods that can indicate if a person has the disease such as antibodies. The other reasons are a bit more nuanced:

Timing

Timing is everything when it comes to antibody testing. When suffering from Lyme disease, it can take weeks for your body to produce enough antibodies for a Lyme disease test to detect it. Some people may not even produce antibodies at all. But unless you develop antibodies, and enough of them, your Lyme test results will come back negative -- even if you have the disease. That's why running an antibody test too quickly after being infected can lead to a negative result which may not be accurate.

Weakened or suppressed immune system

If your immune system is already weak or compromised from fighting another chronic illness, you may not produce enough antibodies for a positive Lyme disease test. Infected ticks also harbor immune-suppressing components in their saliva, which can cause your immune system to have a delayed response to the disease. If your immune system has effectively been "turned off" by the tick, then there's no way for your body to make the proper antibodies to defend itself, and your test results can come back negative.

Antibiotics

Taking antibiotics can also interfere with test results. Because antibiotics are built to fight infections, your body may not be producing enough antibodies for the Lyme disease test to pick up on it. That's why it's important to let your doctor know if you're on any antibiotics before taking a Lyme disease test.

Maybe It's Not Lyme

Even if you struggle with Lyme-like symptoms, there's always the chance that you're suffering from another illness. There are many conditions with symptoms that mimic Lyme disease, including other tick-borne illnesses. You could also be suffering from Tick-Borne Relapsing Fever, or have a co-infection that's similar to Lyme disease.

There's also the possibility that you may have a rare strain of Lyme disease. There are over 300 individual strains of Lyme disease currently recognized, and not every one of them will trigger a positive Lyme test.

Are there any tests to distinguish between late-stage and early-stage Lyme?

Thankfully, science is making progress when it comes to developing more reliable methods of testing. A new study from Frontiers in Microbiology has revealed a newer, more sensitive Lyme test that can distinguish between early and late-stage Lyme disease. The test works by detecting a genetic sequence left behind by the Lyme bacteria. It's incredibly accurate and can detect a single bacterial cell in a small blood sample, which makes it easier to get a positive result as soon as possible. IGeneX is also working on some testing that can help distinguish as well.

I'm super excited about the positive implications of this test and have hope that it will help Lyme patients all over the globe soon get the diagnosis they need faster.

If at all possible, test the tick

Ultimately, one of the most surefire ways to test for Lyme disease is to forego testing yourself and instead test the tick that infected you. If you're unlucky enough to be bitten but lucky enough to see the tick, make sure to save it. You can send it to Igenex labs for disease analysis, so that you know which tick-borne illnesses to treat.