Your Lyme Disease Test Results Are Negative But Your Symptoms Say Otherwise
What happens when everything adds up to a likely diagnosis of Lyme disease except the lab test results? Its a question doctors face more often than many people realize.
Even if a patient has potentially been exposed to ticks and demonstrates symptoms that could be caused by Lyme disease, many doctors will still rely on laboratory tests to definitively determine whether a patient does or does not have the disease. And that can have serious, even deadly consequences for patients who have Lyme disease yet dont start treatment because of negative lab test results.
So why would an infected patient test negative for Lyme disease? It turns out there are a number of reasons that could trigger false negative test results. The following article highlights some of the issues that may be at fault.
Be sure to share these potential concerns and considerations with your doctor when discussing diagnostic testing options for Lyme disease.
Why Your Lyme Disease Test Results May Be Negative Despite Persistent Symptoms
1. The test isnt designed to detect the exact disease-causing bacteria you have.
A number of Lyme disease lab tests are designed to identify only a few species of the Borrelia bacteria that can cause Lyme disease. In the United States, for example, many tests are only designed to detect Borrelia burgdorferi, leaving out many other species that are less common yet still known to cause the disease in humans, including the recently discovered B. mayonii.
Experts Agree Around The World
A strong scientific consensus is evident about Lyme disease diagnosis and testing.
A 2018 French review of 16 Lyme diagnostic guidelines from 7 countries revealed a global consensus regarding diagnosis at each stage of the infection. The only outlier was the pseudoscience group German Borreliosis Society , a German counterpart to the pseudoscience group ILADS.
The Clinical Diagnosis Of Lyme Disease
Misconception: Lyme disease is a clinical diagnosis that should be made based on a list of symptoms.
Science: No clinical features, except erythema migrans or possibly bilateral facial nerve palsyin the appropriate contextprovide sufficient specificity or positive predictive value. Laboratory confirmation is essential except with erythema migrans.
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High Endemicity Constitutional Symptoms No Erythema Migrans Rash
A patient from an area of high endemicity of Lyme disease presents with fever, headache, and arthralgias that had lasted several weeks, but no erythema migrans rash. After a thorough clinical evaluation, the cause of the symptoms remains unresolved.
The physician should consider serologic testing with the complete two-step approach. For this patient, the pretest probability is moderately low, taking into account the endemicity of the disease and the presence of prolonged , unexplained nonspecific symptoms. In this scenario, if the two-step approach is positive, the probability of Lyme disease is about 90 percent. Although testing probably is beneficial in this type of patient, this has not been proven. There is no clear evidence that treatment is beneficial in patients with Lyme disease who exhibit only nonspecific symptoms.
Why Lyme Is Tough To Diagnose
- Lyme symptoms are similar to other illnesses, so misdiagnosis is common.
- Many Canadian doctors are unfamiliar with Lyme, so they dont test for it or administer the wrong tests.
- Only a handful of blood tests effectively detect Lyme bacteria, so the infection is often missed.
Dont get discouraged if you get a negative diagnosis. Seek out second, and even third, opinions if you must!
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How Do They Test For Lyme Disease
Lyme disease is best tested using two different blood testing methods. These are:
- The Enzyme-linked Immunosorbent Assay test: In a nutshell, this test will look for signs that your body is trying to fight off Lyme disease by producing antibodies. However, the ELISA test may come back negative even when a person is infected by the Borrelia burgdorferi bacteria. False-negatives can occur during the early stages of the disease, where the infected persons body has not produced enough antibodies to fight off the B. burgdorferi bacteria. For this reason, reliable diagnosis is not usually based only on the ELISA test results.
- Western Blot test: Heres a simple way to explain the western blot test without getting into all the nitty-gritty details of what it does and how it does it. Put simply, it separates the blood proteins and detects antibodies to the bacteria causing the Lyme disease. Usually, when an ELISA test comes back positive, a western blot test is performed to confirm the diagnosis.
If The Lyme Disease Test Is Negative What Then
Testing Too Soon Can Lead to Negative Test Results
A Negative Lyme Test, or an Inadequate Response to Treatment, Doesnt Mean No Tick-borne Disease
Rocky Mountain Spotted Fever
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Lyme Disease Testing: Useful When Performed Appropriately
One known problem is that we can produce antibodies for years or decades after a Lyme infection has been eradicated. Therefore, a seropositive test on its own is not necessarily indicative of active infection.
In addition, it can take a few weeks for detectable antibodies to build up in the body. Pseudoscience advocates frequently mislead about Lyme antibody testing by failing to differentiate testing performance in early infection from testing performance in late infection.
Below is a CDC-produced illustrative example of antibody production in Lyme disease, which triggers a positive test once a detection threshold is reached.
Two types of antibodies are shown: IgG and IgM. Typically, a detectable IgM antibody response is produced first, followed by a detectable IgG response.
Is There A Lyme Disease Test Kit
Blood collection kits are available for at-home Lyme disease testing. Lyme disease test kits can cost as less as $20 and as much as $100 or more. Using a Lyme disease test kit is as simple as pricking your finger and smearing or collecting the blood onto the kit for testing.
However, testing for Lyme disease in a more controlled environment such as a lab or clinic is preferable as qualified healthcare professionals are likely to perform a more reliable test.
Waddell L. A., et al. . The accuracy of diagnostic tests for Lyme disease in humans, a systematic review and meta-analysis of North American research. PLoS One. 2016 11: e0168613. Retrieved from
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Severity Of Lyme Disease
Misconception: B. burgdorferi infection is potentially lethal.
Science: Although Lyme disease can cause heart or brain abnormalities, there have been remarkably fewif anydeaths attributable to this infection.
LymeScience note: After this paper was published, CDC three case studies of deaths associated with Lyme carditis, though two patients had preexisting heart conditions. While its not entirely clear if the infection caused the deaths, CDC still reiterates, Prompt recognition and early, appropriate therapy for Lyme disease is essential.
Reason : The Type Of Test Used
PCR Test: Antibody Test :
|Borrelia Culture Test: This test looks for the actual presence of the Lyme bacteria in a persons blood. It completely skips the middle man, antibodies, of antibody testing, and is considered the closest test to 100% accuracy in detecting an active Lyme infection in a person. The problem with this test is that it relies on a living Lyme bacterium to be cultured , and the nature of the Lyme bacteria is that it does not survive long outside of its host, even in cyst-form. This is why Advanced Laboratory Services, the lab that performs the Borrelia Culture Test, needs your blood sample within 24 hours of being withdrawn.|
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High Endemicity Screening Of A Child
A healthy child from an area of high endemicity receives an annual physical. The mother notes that the child enjoys playing in the backyard, which is adjacent to a heavily wooded area.
Serologic testing should not be ordered because the child is asymptomatic. A false-positive test result would expose the child unnecessarily to the risks of treatment. In this scenario, the probability that a positive test represents true infection is less than 25 percent.
So When Do You Need Blood Tests For Lyme Disease
In some cases, you can have Lyme disease without the rash. Or you may not see the rash before it goes away on its own.
In these cases, your doctor should ask you about your medical history and do a thorough physical exam. Your doctor should look for these signs that you might have Lyme disease:
- You were in an area with ticks and Lyme disease.
- You also have fever or redness, warmth, and swelling in one or a few joints at a time usually the knees, shoulders, or wrists.
Other symptoms can occur later on. Talk to your doctor about testing and treatment choices.
This report is for you to use when talking with your healthcare provider. It is not a substitute for medical advice and treatment. Use of this report is at your own risk.
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Lyme Disease Tests: Science Vs Misconceptions
Lyme diagnosis and testing can be very confusing. This confusion has contributed to false positive diagnoses and unnecessary treatment.
As in other infections like HIV, testing for Lyme disease involves looking for antibodies produced by the bodys immune system in response to infection. This is called serologic testing because the antibodies are found in blood serum.
Testing positive for antibodies is called seropositive and testing negative for antibodies is called seronegative.
You Do Not Usually Need Tests To Show That You Have Lyme Disease
In most cases, theres a clear sign of Lyme diseasea painless, spreading rash that often grows to look like a bulls eye. If you have this rash, and you recently had a tick bite or were in an area known for Lyme disease, you dont need a test. Instead, your doctor can just start treating you with antibiotics, as appropriate.
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An Early And Accurate Diagnosis Is Key
For patients and doctors, being aware of the many factors that can influence Lyme disease lab tests can better inform your perspective and reliance on the results. If Lyme disease test accuracy is a concern, doctors should consider multiple types of tests, a panel approach, to increase the chances of detecting the disease.
Additionally, they should always consider the patients Lyme disease test results in conjunction with their current or previously reported symptoms. Remember, Lyme disease causes symptoms such as fever, chills, headache, fatigue, muscle and joint aches, and swollen lymph nodes.
Finally, doctors should also consider risk factors that heighten someones probability of exposure to ticks or regions where Lyme disease and other tick-borne diseases are prevalent.
For more information on getting the proper diagnosis and treatment for your tick-borne disease, read the IGeneX blogs The Importance of Getting the Right Diagnosis and How to Find Doctors Who Can Help with Your Tick-Borne Disease.
Types Of Lyme Disease Tests
Antibody titer tests for Lyme disease measure antibodies that are specific to the bacteria that can trigger the condition. Antibodies are part of the bodys immune response. Tests look for two types of antibodies, known as immunoglobulin M and immunoglobulin G .
IgM antibodies usually peak within a few weeks after an infection with Borrelia bacteria and start to collapse 4-6 months after infection. IgG antibodies are slower to develop, beginning to show 4-6 weeks after exposure and may peak 4-6 months after exposure. While IgM tends to be associated with an active infection, both IgM and IgG can persist in the blood for many years.
The Centers for Disease Control and Prevention recommends a two-stage or two-tiered test for these antibodies. If the initial blood test is positive for IgM or IgG antibodies associated with the Borrelia bacteria, a second test is done, often using different laboratory methods.
Testing for IgM and IgG can support the finding that you have been exposed to Borrelia, but this on its own does not prove whether or not you have Lyme disease.
Follow-up testing may be necessary if testing is inconclusive. This could involve repeat blood tests or the use of different types of medical tests to rule out other health conditions. In people suspected of bacterial reinfection, imaging tests may be used to detect joint inflammation.
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Cdc Supports The Development Of New Tests
New tests may be developed as alternatives to one or both steps of the two-step process. Before CDC will recommend new tests, they must be cleared by the Food and Drug Administration . For more details, see: Recommendations for Test Performance and Interpretation from the Second National Conference on Serologic Diagnosis of Lyme Disease.
Your Test Was Not Sensitive Enough
Many doctors and labs adhere diligently to the two-step tests for Lyme disease approved by the FDA and recommended by the CDC, which involves an initial enzyme-linked immunosorbent assay followed by a Western blot test. Both tests are designed to detect antibodies in the patients blood to the B. burgdorferi bacteria. According to the CDC, both must be positive for a patient to be diagnosed with Lyme disease.
However, recent studies have raised concerns about the Lyme disease test accuracy, particularly the ELISA, which has been found to have a poor sensitivity rate, or ability to detect antibodies in the blood. Recent studies, in fact, report that the ELISA and Western blot can miss up to 60 percent of well-defined Lyme disease cases.
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How Much Does A Lyme Disease Test Cost
The cost of a Lyme disease test depends on what type of test is performed an ELISA test or a combination of ELISA and western blot tests.
Averagely, the cost for an ELISA test for Lyme disease is in the vicinity of $120 or more. If you include a confirmation western blot test, it can attract an additional $130 or more. More details on pricing can be referenced on our website.
Although an ELISA test might come back negative, it is best to combine it with a western blot test because not everyone shows the rash or bulls eye symptoms of Lyme disease.
After a successful diagnosis and treatment, it is equally important to do a follow-up test for Lyme disease years later to be sure that any similar flu-like symptoms are something else and not the same disease reoccurring.
First Comes Igm Then Igg
The pathogenesis and the different stages of infection should inform laboratory testing in Lyme disease.
It is estimated that only 5% of infected ticks that bite people actually transmit their spirochetes to the human host. However, once infected, the patients innate immune system mounts a response that results in the classic erythema migrans rash at the bite site. A rash develops in only about 85% of patients who are infected and can appear at any time between 3 and 30 days, but most commonly after 7 days. Hence, a rash occurring within the first few hours of tick contact is not erythema migrans and does not indicate infection, but rather an early reaction to tick salivary antigens.
Antibody levels remain below the detection limits of currently available serologic tests in the first 7 days after exposure. Immunoglobulin M antibody titers peak between 8 and 14 days after tick contact, but IgM antibodies may never develop if the patient is started on early appropriate antimicrobial therapy.
If the infection is not treated, the spirochete may disseminate through the blood from the bite site to different tissues. Both cell-mediated and antibody-mediated immunity swing into action to kill the spirochetes at this stage. The IgM antibody response occurs in 1 to 2 weeks, followed by a robust IgG response in 2 to 4 weeks.
Because IgM can also cross-react with antigens other than those associated with B burgdorferi, the IgM test is less specific than the IgG test for Lyme disease.
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Her ordeal is a common one every year, some 300,000 people in the United States are diagnosed with Lyme disease, according to the Centers for Disease Control and Prevention, and that number is on the rise. Some people wait months or years to get a correct Lyme diagnosis. And their cases highlight a problem: Tests for Lyme in the first month of infection are frequently wrong. When diagnosed and treated early the infection is a simple one to get rid of, but left untreated it can cause a myriad of lingering symptoms, from severe arthritis to short-term memory problems.
Now, a number of research groups are working to improve Lyme tests to catch infections in the early stages. One avenue being studied by the CDC aims to create a Lyme signature of small molecules in the blood an approach that, in early testing, catches a dramatically higher share of early infections.
Some Further Blood Tests That May Help Accurate Diagnosis Include:
- Complete blood count : white blood cells count , differential , hemoglobin
- Blood chemistries: electrolytes, liver function, kidney function
- Glucose metabolism: fasting blood glucose, fasting insulin hemoglobin A1c
- Minerals: magnesium and calcium
- Autoimmune testing rheumatoid factor, ANA titer
- C-reactive protein
- Vitamins: vitamin D and B12
- Iron: ferritin
- Urinalysis: pH, WBCs, nitrites, protein, bilirubin
- Mold and mycotoxins
- Reproductive hormone testing: estrogen, progesterone, testosterone
- Testing for toxins
- Comprehensive stool analysis: yeast, parasites, viruses, and bacteria
- Microbes testing
- Genetic testing, like methylation
- Testing for neurological, cardiac, and GI symptoms
- Testing for Lyme co-infections
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