Why Lyme Tests Often Miss Their Diagnosis

Lyme disease testing is tricky to deal with. Studies by Takaaki Kobayashi at the University of Iowa Hospitals and Clinics on Lyme disease misdiagnosis show that only 26.5% of people are diagnosed accurately. The rest either turn out as false positives or are diagnosed incorrectly based on the symptoms. 

This tick-borne disease is well-known, especially in the Northeast. There’s a 50% chance you will contract Lyme disease if you get bitten by a tick in the bushy areas of New York. Even so, many patients report testing negative, despite having all of the telltale symptoms. 

In this article, you will find out more about why this is happening and what you should do to get your diagnosis. This way, you can get the correct treatment and prevent potential complications.

How Standard Lyme Tests Work — and Why They Fail

Standard Lyme testing works by revealing post-disease antibodies. These antibodies are produced by your immune system to fight Borrelia burgdorferi. They remain in your body for months, perhaps even years, even if the bacteria are no longer present.

Understanding the CDC Two-Tiered Approach

The CDC uses a two-tier approach, considering the high chance of false positives and negatives alike: ELISA and Western Blot. Despite how common it is in some areas, Lyme disease is still misunderstood. Here’s what to expect:

• Enzyme-Linked Immunosorbent Assay (ELISA): The main screening test that looks for Borrelia burgdorferi antibodies. Testing stops here if it’s negative.
• Western Blot: A test that looks for IgM (initial) and IgG (long-term) antibodies. It determines the stage of your infection and how long it has been in your body. This allows for a correct diagnosis and encourages proper treatment.

Both testing methods sometimes fail because the immune system needs enough time to create antibodies. Some people get them in two weeks, others in six or more.

The Antibody Window Problem

Antibodies take some time to appear. According to studies by John A. Branda on Laboratory diagnosis of Lyme Borreliosis, antibodies are not detectable for at least 7 days post-bite. This creates a serious gap, especially in the early or acute stages, where the antibodies have not had the time to appear. 

Many patients already experience symptoms during the first few days. However, with a negative test, most of them think they’re in the clear. The opposite is frequently the case, as they probably tested before the infection spread. 

A delay also happens due to factors such as co-infections, age, or a suppressed response of the immune system. This delays the appearance of antibodies even further or prevents them from showing up altogether. The result is a false positive that hides the infection.

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Why False Negatives Are So Common

False negatives are common because doctors and patients don’t always test for them at the right time. Patients should calculate the right moment based on the type of test they need. 

Antigen tests are suitable for active infections, whereas antibody tests are recommended after healing.

Early Testing Leads to Missed Diagnosis

About half of the Lyme tests end in a missed diagnosis because the body did not have enough time to create antibodies. 

Many people don’t know that they have to wait until the antibodies form and take the test too early. This leads to a false negative, even if they have an active infection brewing inside.

Below are the main reasons why your ELISA or Western blot tests may miss their diagnosis: 

• The immune system didn’t have the time to produce IgM or IgG antibodies
• You did the test only days after the tick bite
• You only have non-specific symptoms such as fatigue, fever, and muscle aches that are easily dismissed
• Your immune system is compromised and can’t produce measurable antibodies
• You have a co-infection that messes with your immune response
• The testing kit is limited and only detects certain strains of Borrelia

Most standard tests, such as ELISA and Western blot, are indirect. Unlike PCR tests, they don’t look for the bacteria themselves. Instead, they look at how your body responds to them (i.e., your antibodies). 

These take anything from 2 to 6 weeks to fully form and become measurable. This means the ideal testing window is after one month.

To make sure you get the correct treatment after a tick bite, here’s a checklist to avoid mistakes:

• Don’t test in the first 1-2 weeks post-bite
• Don’t automatically assume one negative test means no infection
• Don’t rely solely on the test results
• Don’t overlook the clear early signs that don’t need a test for confirmation
• Don’t wait for lab results to seek treatment and use diagnostic criteria

It’s important to get a clinical diagnosis during the early Lyme disease stages. This is particularly essential if the bite happens in a “hot zone” and you experience symptoms. Prompt treatment prevents long-term complications. 

Seronegative Lyme — When the Test Is Always Negative

Chronic Lyme disease sometimes results in negative tests, regardless of how long you wait. These are referred to as seronegative tests. 

Studies at the Lyme Disease Foundation in Hartford, Connecticut, showed that 25% of patients with false negatives are also seronegative. 

Seronegative tests happen when the immune system no longer creates detectable antibodies. This occurs even when you have ongoing symptoms. Should this happen, the immune system feels suppressed, overwhelmed, or dysregulated.

Below are some common causes of why the body may break down: 

• Immune Exhaustion: A long-term infection drains the body until it is no longer able to respond.
• Cytokine Dysregulation: There’s an imbalance of molecules that deliver signals to the immune system.
• Antigen Masking: The bacteria hide in the tissue, evading detection from the immune system. 

These factors don’t always change with time. This could cause the test to miss its mark again and again and again.

Medical providers use CD57 as a possible clue in chronic or persistent infection cases. This is a type of cell that may appear very low in the case of chronic Lyme. This could suggest that the body is going through chronic immune distress. We have found this test very helpful at Naturally Sue Wellness. 

Patients must learn how to recognize chronic Lyme symptoms so they get the appropriate treatment. Clinical diagnosis helps determine the bacteria that you are dealing with. 

Lyme disease is rarely fatal, but the CDC still reported 114 deaths between 1999 and 2003. Proactive care prevents potential complications. 

Test Type Matters — But Most Doctors Don’t Know This

Lyme disease testing is either antigen or antibody based. Both look for different things in the blood and tissue. This means they also have different testing windows. 

When PCR or Antigen Tests Are Better Than ELISA

PCR, FISH, and antigen testing are often more efficient compared to ELISA and Western Blot tests. These tests look for bacterial presence instead of the body’s response, making them a better choice for immunocompromised or persistent cases. 

These tests are very useful to narrow down the presence of a pathogen before the immune system has a chance to flush it out. For instance, tests such as IGeneX are better suited for patients with chronic Lyme, where reinfection is suspected. 

Keep in mind that these tests identify the pathogen in the blood only when you know what to look for. Still, it gives you an idea of the strains that are currently affecting the body, making it an effective choice for co-infections. 

Antibody-based tests, such as ELISA and Western Blot, are a good choice in the later stages of infection, when there is enough time to create antibodies. That said, antigen and PCR tests offer direct detection in the first 5-10 days, when antibodies have not had time to form.

Naturopathic Tools for Clinical Diagnosis

A test that comes back negative uses tools such as tick exposure history, symptom tracking, and co-infection screening. Functional medicine offers a clinical diagnosis when lab results fail. 

Patients will report their symptoms, explaining how they manifest and how they affect them. After listening, a naturopath will evaluate and diagnose your condition. Here’s what doctors look at:

• Detailed history of potential tick exposure
• Your symptoms over the past few days
• Immune triggers that could affect symptoms
• Co-infection screening

Lab results are a useful tool for obtaining a diagnosis. However, patients get better results when they compare these results with observation.

The Role of Co-Infections in Testing Confusion

Surveys done on Lyme patients by LymeDisease.org on tick-borne co-infections show that 50% of patients have at least one co-infection. Most patients have Babesia, but other pathogens may also be transmitted from the same tick. 

Ticks Rarely Transmit Just One Pathogen

Ticks in areas such as New York have up to 50% chance of transmitting Lyme, but that’s not the only pathogen. 

Depending on the area, ticks like the Ixodes scapularis transmit the following pathogens in tandem: 

• Babesia: A protozoan type similar to malaria that leads to night sweats, anemia, and air hunger.
• Anaplasma: A type of bacteria that leads to chills, high fever, headaches, low white blood cells, and muscle aches. 
• Bartonella: Caused by the Bartonella henselae bacteria, it leads to neurological symptoms, swollen lymph nodes, and potential skin lesions.
• Ehrlichia: Similar to Anaplasma, this causes symptoms similar to Lyme, such as fatigue, fever, and confusion. Rashes are not as common but can still appear. 

These tick-borne pathogens may behave differently and potentially affect treatment results. For example, Babesia doesn’t respond effectively to doxycycline, which requires combination treatments. 

The presence of these symptoms also disrupts the greater clinical picture. This causes doctors to potentially misdiagnose the patient and delay the treatment. 

With some tick-borne co-infections, such as Ehrlichia, leaving it untreated can be fatal. Studies led by Dennis M. Dixon on Ehrlichiosis in 2021 show that untreated cases have a 30% fatality rate. 

Doctors overlook co-infections if they are not specifically requested or if they fit an atypical scenario. For this reason, patients should get a comprehensive tick panel, especially if it has an unusual presentation. 

Real-World Cases That Defy the Test Results

Lyme disease takes on different forms depending on the patient. Antibody response could lead to false negative tests, despite all the textbook symptoms. Patients should not dismiss them just because the test says otherwise.

When the Labs Are Normal but the Patient Isn’t

Many patient stories feature symptom clusters that fit Lyme but are accompanied by a negative test. They have headaches, fatigue, and cognitive problems associated with Lyme disease. Perhaps they even have a rash. 

The problem is that CDC data says that only 70-80% of people get a rash. It might not even be a bullseye shape, which leads to misdiagnosis. The negative test leads to delayed treatment. Doctors doubt or miss the symptoms and only give the correct diagnosis after repeated testing.

In our experience…

We do not rely on a positive ELISA to start treating patients who we suspect have Lyme. A clinical picture is the most important and this requires time between the doctor to obtain the proper information to figure out diagnosis and a plan forward. We always do the ELISA and the Western Blot at the same time, and not just the reflex to Western Blot. We often run other tests as well including CD57 and even C4a because we often see Lyme patients with a low CD57 and a higher C4a. 

FAQs: What to Do When Testing Doesn’t Add Up

1.How Long After a Tick Bite Should I Get Tested?

The testing window depends on the type of test that you go for. If you use antibody-based tests such as ELISA or Western blot, you should wait around 3-6 weeks. This gives your antibodies enough time to appear. However, if you get symptoms sooner, PCR or antigen testing offers results within the first week. 

2.What If My Test Is Negative but I Still Feel Sick?

If you feel sick and know for certain that you were bitten by a tick, there’s a good chance you haven’t reached your testing window yet. Speak to a naturopath if you have the symptoms, and they will help you reach a clinical diagnosis. Consider testing for other tick-borne diseases, also known as co-infections, as Lyme doesn’t always come alone. 

3.Should I Retest or Try a Different Lab?

Yes, retesting is generally the recommended route, especially if you tested early before. A second test, taken some 2 weeks after, will more likely tell you whether or not you’ve been infected. If you are still in the early infection phase, consider using a PCR test instead. Specialized labs also look over expanded panels and cover more strains faster. 

4.Can Co-Infections Interfere with Lyme Testing?

Yes, co-infections frequently interfere with Lyme testing due to overlapping symptoms and their ability to suppress the immune system. Pathogens such as Anaplasma and Babesia confuse test results and perhaps even slow the immune response, making it more difficult to find the infection.