If you’ve already been tested – the fatigue that doesn’t go away, the joint pain that moves, the brain fog that forgets words in the middle of a sentence – then you probably have.If you’ve been tested – have you been tested for Lyme disease? – then there’s a good chance that you have. Plus, there’s a pretty good possibility that the test was negative, though something is definitely amiss.

This is something not many people make clear about the test for lymes: a negative test does not mean a person does not have Lyme disease. It simply means that the test you took was not the one which detected it. That distinction is important because thousands of people are told they are ‘fine’ and are sent home and their symptoms continue to get worse.

While this post will explain exactly why so many cases go undiagnosed by the standard Lyme disease test, and what is really going on in the laboratory when that occurs, it also offers some questions to ask at your next appointment.

How Standard Lyme Disease Testing Actually Works

The majority of physicians begin with a so-called two-tier testing process. It sounds like it’s comprehensive, but the action is where the issues begin.

Step one involves searching for antibodies that your immune system supposedly made against the bacteria that causes Lyme disease. If the first test is positive or borderline, then step two is a more detailed test to confirm the first result.

You see, this whole process relies on your immune system’s response in a specific way, in a specific time, to one certain type of exposure. In most cases, the test will be negative even though the problem is very much there since the body’s reaction is different – more often than not.

This is why Lyme disease testing is not very successful in the early and mid-stage of the disease. The tools were not created to be able to identify all versions of the story. They were supposed to be geared toward the most textbook version.

Why So Many Real Cases Get a False Negative

A false negative is when the test returns a negative result when the actual answer is positive. This occurs more frequently in patients who get tested for Lyme disease than they are told. A few reasons why:

1. It Takes Time for Your Body to Show Up on the Test

Immune system does not produce a response that is detectable immediately following a tick bite. If tests are performed too early – within the first few weeks – there isn’t enough of a signal for the test to detect, even if the infection is ongoing.

2. The Tests Were Built Around One Common Strain

The bacteria that cause Lyme disease come in more than one strain. You might have a species of tick that’s not well matched to the standard test or you might have been bitten by it somewhere other than the United States. This is one of the biggest reasons for so many chronic illness stories beginning with ‘But my test was negative.’

3. Your Immune System May Not Respond the “Normal” Way

There are some people whose immune systems simply don’t generate a textbook response to antibodies, particularly if the immune system is already weakened by other factors such as stressors, prior infections or chronic inflammation. A weak or compromised immune system may also be able to mount a subtle immune response that is not what the lab is looking for.

4. Co-Infections Muddy the Picture

Ticks are not likely to transmit only one organism. Sometimes more than one organism is transmitted and those other infections may alter the symptoms that don’t correspond with the “classic” Lyme picture that doctors are trained to recognize; therefore, Lyme disease testing may not even be ordered in the first place.

5. Symptoms Get Mislabeled as Something Else

Fatigue, brain fog, joint pain and mood changes all seem like symptoms of dozens of other conditions. These symptoms often are attributed to stress, anxiety or another diagnosis before anyone even thinks about considering testing for tick-borne illness.

Who Is Most Likely to Get a Missed Diagnosis

Everyone doesn’t have an equal chance of falling through cracks. A pattern emerges, and these patterns are repeated in those who have had negative Lyme test results but who do have Lyme disease:

• Individuals who have never noticed a tick nor a rash. In some cases, the classic bullseye rash may not appear. Many people don’t even feel a bite and therefore find no reason to test.
• People who got tested too soon. Individuals who have never noticed a tick nor a rash. In some cases, the classic bullseye rash may not appear. Many people don’t even feel a bite and therefore find no reason to test.
• People are already dealing with another chronic condition. When a person is already under stress from another infection, they may react differently to a new infection – perhaps differently than they did in a standard test.
• People who live in or travel through wooded, grassy, or rural areas regularly. It is not always the case that repeated exposures at low levels will elicit the same antibody response as a single obvious bite.

If you have heard any of this, please make your tick exposure history a point of discussion with your order of test – GP’s may only think to test if asked about possible tick exposure.

What “Chronic Lyme Disease” Really Means

I’m sure you’ve heard the word chronic Lyme disease thrown around on the internet and it needs to be defined. Typically, this is a persistent condition that persists long after the initial exposure (months to years later) despite normal test results, which may be negative or inconclusive.

It is one of the most frustrating jobs to have because you have real symptoms which are disruptive and you have a piece of paper which says everything is fine. It’s also why so many people end up going to a Lyme disease specialist instead of sticking with their GP: specialists tend to be more likely to consider the whole clinical picture instead of one negative result.

What a Better Approach to Lyme Disease Diagnosis Looks Like

But all this does not imply that standard testing is worthless – it does catch a lot of cases, especially if it is conducted at the right time, with a clear, recent tick bite and classic bullseye rash. The problem comes when you use it as your only word on the topic when your symptoms and history don’t support it.

Lyme disease diagnosis typically requires a more comprehensive evaluation, which may include:

• History of symptoms/exposures – detailed – where you live, spend time outside, previous tick exposures (even ones you don’t remember clearly), how symptoms have changed over time
• Correct timing of the test – retest if the first test was performed too early
• Screen for co-infections – not just the primary organism
• Taking clinical judgment into account, not using a negative laboratory result as the definitive answer
• Eliminating co-existing conditions in a methodical way rather than assuming the symptoms are part of the first condition that was diagnosed

That’s the logic behind most root-cause and functional wellness practices – the lab is just a part of the answer.

Questions Worth Asking at Your Next Appointment

If you think you may be suffering from a tick-borne disease and are still testing negative for Lyme disease, here are some questions that can help advance the dialogue:

• Did the test happen to be administered too early to detect it?
• Should we test for co-infections as well, not just the primary infection?
• Is my symptom pattern and history a fit with Lyme despite my negative blood test?
• Would a specialist examination be beneficial over a general exam? 

Taking a written symptom history – a description of how long you’ve been having symptoms, what makes them better or worse, and any known exposure to ticks makes it much easier for your provider to take you seriously when it comes to your test rather than just taking the test at face value.

The Bottom Line

Testing is a good initial step, not a completion step. It is based on a common pattern of infection and immune response, and it leaves out a lot of real infections that don’t follow the same pattern. Even with a positive test result, if your gut feeling is that something is still amiss, this feeling should be followed up further: by retesting, co-infection testing or talking to a Lyme disease specialist who treats the whole patient, not one lab slip.