When A Lyme Diagnosis Is Tricky
There are several reasons it can be hard to diagnose Lyme disease.
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Tests are less accurate for a short period of time after you first become infected. Thats because Lyme tests look for proteins created by your immune system to help you fight off infection , rather than for the infection itself, and it can take a few weeks for your body to make enough antibodies to cause a positive test.
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The only sure sign of Lyme disease is an erythema migrans rash, which often has a bullseye shape. But up to 30% of people who get Lyme disease never get a rash. It is also possible that a person may not notice a rash before it goes away.
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Symptoms of Lyme disease like fever and body aches can also be caused by other illnesses. This may result in Lyme diagnoses being missed because symptoms are attributed to another illness.
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Using todays tests, it is difficult to distinguish between an old Lyme disease infection and a new one.
Thats why Lyme disease cases may be missed, and as many as 40% of Lyme disease cases are not diagnosed until a later stage of the disease. By that time, Lyme disease is harder to treat, and long-term complications are more likely, so an early, accurate diagnosis is very important.
What Happens At Your Appointment
The GP will ask about your symptoms and consider any rash or recent tick bites you know about.
Lyme disease can be difficult to diagnose. It has similar symptoms to other conditions and theres not always an obvious rash.
2 types of blood test are available to help confirm or rule out Lyme disease. But these tests are not always accurate in the early stages of the disease.
You may need to be retested if you still have Lyme disease symptoms after a negative result.
What Abnormal Results Mean
A positive ELISA result is abnormal. This means antibodies were seen in your blood sample. But, this does not confirm a diagnosis of Lyme disease. A positive ELISA result must be followed up with a Western blot test. Only a positive Western blot test can confirm the diagnosis of Lyme disease.
For many people, the ELISA test remains positive, even after they have been treated for Lyme disease and no longer have symptoms.
A positive ELISA test may also occur with certain diseases not related to Lyme disease, such as rheumatoid arthritis.
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What Is The Outlook For Someone With Lyme Disease
Most of the people who get Lyme disease and receive treatment early will be fine. Treatment can cure Lyme disease but you might still have some long-term effects. Untreated Lyme disease may contribute to other serious problems but its rarely fatal.
Post-treatment Lyme disease syndrome
Even after proper treatment, some people may experience lingering fatigue, achiness or headaches. This is known as post-treatment Lyme disease syndrome or PTLDS. The symptoms dont mean that you still have an infection. PTLDS probably wont respond to additional antibiotics. The majority of people in this group will have symptoms that resolve at some point over the next six months.
Chronic Lyme disease
Chronic Lyme disease is a term used by some for a condition in a person who had Lyme disease and the symptoms of PTLDS. Some people consider chronic Lyme disease to be the same as PTLDS. However, some people receive a chronic Lyme disease diagnosis without a Lyme disease diagnosis. Sometimes, extended treatment with antibiotics helps.
This term may be why some people think a Lyme disease infection can occur without being bitten by a tick. There isn’t enough proof that mosquitoes can transmit Lyme disease. Many researchers dislike using the term chronic Lyme disease.
How To Test For Lyme Disease
Wondering how to get tested for Lyme disease? The Centers for Disease Control and Prevention suggests a two-step testing process to check for a Lyme disease infection, both of which involve antibody testing , typically done on the same blood sample.
If the first step in the process returns a negative test result, then the second step is not necessary. However, if the first step yields a positive result, the second test is recommended as confirmation of a Lyme disease diagnosis. The Everlywell Lyme Disease Test follows this recommended protocol from the CDC, so it includes the two-step testing process.
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Surveillance Versus Clinical Diagnostic Testing
One misconception is that 2-tiered serologic analysis is intended only for surveillance, rather than patient diagnosis. This misconception is an apparent conflation of clinical serologic testing recommendations for Lyme disease and the surveillance case definition of the Council of State and Territorial Epidemiologists . Recommendations for 2-tiered testing are meant to aid the diagnosis of individual patients in the clinical setting. Serologic test results might be used by public health officials to determine whether a given illness meets the surveillance case definition, but the methods themselves were not developed for this purpose. Furthermore, for practical reasons, serologic results might be used slightly differently in surveillance than is recommended in the clinical setting. For example, although it is not recommended to perform Western immunoblot without a first-tier EIA for laboratory diagnosis, a positive IgG result by Western immunoblot alone is accepted as laboratory evidence of infection for surveillance purposes . This operational definition enables simplification of reporting practices because it can be difficult to track down records of the first-tier test. However, it does not represent best clinical practice.
What Is The Most Accurate Test For Lyme Disease
Lyme disease is more common than many people think. Figures from the Center for Disease Control suggest that roughly 300,000 Lyme disease cases occur every year in the US.
The numbers are alarming, but it gets worse as finding accurate diagnostic tests can be challenging. Although the disease is treatable, it is nearly impossible to tackle it effectively if it is not diagnosed accurately and early enough.
Late detection can lead to severe health problems such as arthritis, heart blockage, and inability to concentrate, among other problems.
Given the prevalence and seeming elusiveness of the disease, some of the logical questions concerned persons would ask are: what is the most accurate test for Lyme disease? And when should I get checked for Lyme disease? This article will proffer answers to these and many other related questions. But first, a little background would be in order.
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Can Lyme Disease Completely Be Cured
Taking oral antibiotics typically cures Lyme disease after two to four weeks. You may need to get antibiotics through the vein for four more weeks. However, theres no reason to think that Lyme disease stays in you forever after treatment.
A note from Cleveland Clinic
If youre going to spend time in an area that might have ticks, take measures to avoid being bitten. This includes wearing long-sleeved shirts and pants to make it harder for ticks to bite. If you feel sick after being in an area that probably has ticks, make an appointment with your healthcare provider. If your provider prescribes antibiotics, make sure you take all of them as instructed.
Last reviewed by a Cleveland Clinic medical professional on 08/16/2022.
References
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What Is The Testing Process
Many family doctors will send you to a laboratory whereblood will be drawn and sent for testing.
Enzyme-linked Immunosorbent Assay is a blood test used to detect the antibodies associated with the bacteria of Lyme disease. While this test is used the most, it can also give false results. The right doctors will use more than one type of test to ensure a correct diagnosis.
Another blood test used to confirm Lyme disease is the Western Blot Test, usually used when the ELISA comes back positive.
Testing can also be done on cerebrospinal fluids, but mostfamily practitioners do not order this test for patients.
A specialist, however, will make sure your cerebrospinal fluids are tested, especially if you are having stiffness in the neck or numbness in your hands and feet. This procedure is typically called a spinal type.
Neither test is harmful or dangerous.
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Later Symptoms Of Lyme Disease
More serious symptoms may develop if Lyme disease is left untreated or is not treated early. These can include:
- pain and swelling in the joints
- nerve problems such as numbness or pain in your limbs
- memory problems
- difficulty concentrating
Some of these problems will get better slowly with treatment. But they can persist if treatment is started late.
A few people with Lyme disease go on to develop long-term symptoms similar to those of fibromyalgia or chronic fatigue syndrome. This is known as post-infectious Lyme disease. It’s not clear exactly why this happens. It’s likely to be related to overactivity of your immune system rather than continued infection.
How Will My Doctor Test Me For Lyme Disease
The CDC recommends two-step testing, sometimes referred to as a two-tiered test, for Lyme disease. You will need to go to a lab to have blood drawn. It takes a few days to get results.
If the first test comes back positive or unclear, the lab will do the second blood test. If the first test comes back negative, the CDC does not recommend the second test. However, according to the CDC the second test must be positive for you to be diagnosed with Lyme disease.
The first test: ELISA
This blood test is for antibodies against the Lyme disease bacteria. Because it can take some time for your body to produce antibodies, this test isnt always accurate soon after a person is infected.
The second test: Western Blot or a second ELISA
There are two options for the second test. One is called a Western blot, which looks at how your antibodies react to specific parts of the Lyme disease bacteria. The Western blot test has been part of the two-step testing system since 1994 and is more commonly used.
The other option is to do a second ELISA test, which measures antibodies to a specific protein found on Lyme disease bacteria. Because these tests are newer, not all doctors have experience with them and not all labs have access to them.
These tests can be run on the blood sample used for the first test. You should not need to go back to the lab.
A possible drawback of the two-step testing system
Which second test is best: ELISA or Western blot?
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Treatment Following A Tick Bite
- In some circumstances, a single dose of antibiotic given within 72 hours of a tick bite might prevent the development of Lyme disease. Several criteria must be met:
- The tick must be identified as the blacklegged tick .
- The tick must have been attached for at least 36 hours .
- The tick bite occurred in a highly endemic area
Exposure And Pretest Probability
When determining whether to test for Lyme disease, clinicians must consider a patients pretest probability . Even highly specific tests can show false-positive results when performed for patients with low pretest probability.
The most crucial factor governing pretest probability for Lyme disease is exposure history. A recent retrospective cohort study by Lantos et al. reported a positive predictive value for Lyme disease serologic analysis in the Duke University hospital system in North Carolina of only 10% for patients with no history of recent travel to a disease-endemic region . In addition, only 0.7% of patients without recent travel history who had potential signs of disseminated infection were ultimately given a diagnosis of Lyme disease, which indicated that even clinical signs consistent with Lyme disease have poor predictive value in low-incidence regions. Furthermore, even EM-like lesionsonce considered pathognomonic for Lyme diseasecan be caused by other conditions, such as Southern tick-associated rash illness, a tickborne illness found primarily in the southeastern United States for which an infectious etiology has not been identified .
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Notice To Readersrecommendations For Test Performance And Interpretation From Thesecond National Conference On Serologic Diagnosis Of Lyme Disease
The Association of State and Territorial Public HealthLaboratory Directors, CDC, the Food and Drug Administration, theNational Institutes of Health, the Council of State and TerritorialEpidemiologists, and the National Committee for Clinical LaboratoryStandards cosponsored the Second National Conference on SerologicDiagnosis of Lyme Disease held October 27-29, 1994. Conferencerecommendations were grouped into four categories: 1) serologictest performance and interpretation, 2) quality-assurancepractices, 3) new test evaluation and clearance, and 4)communication of developments in Lyme disease testing. Thisreport presents recommendations for serologic test performance andinterpretation, which included substantial changes in therecommended tests and their interpretation for the serodiagnosis ofLD.
It was recommended that an IgM immunoblot be consideredpositive if two of the following three bands are present: 24 kDa * , 39 kDa , and 41 kDa . It was furtherrecommended that an that IgG immunoblot be considered positive iffive of the following 10 bands are present: 18 kDa, 21 kDa *,28 kDa, 30 kDa, 39 kDa , 41 kDa , 45 kDa, 58 kDa , 66 kDa, and 93 kDa .
The details of both plenary sessions and the work groupdeliberations are included in the publication of the proceedings,which is available from the Association of State and TerritorialPublic Health Laboratory Directors telephone 822-5227.
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Are There Any Risks To Lyme Disease Tests
There is very little risk to having a blood test or a lumbar puncture.
With a blood test, you may have slight pain or bruising at the spot where the needle was put in, but most symptoms go away quickly.
With a CSF test, you may feel a little pinch or pressure when the needle is inserted. After the test, you may feel some pain or tenderness in your back where the needle was inserted.
You may also have some bleeding at the site or get a headache. The headache may last for several hours or up to a week or more, but your provider may suggest treatment to help relieve the pain.
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Negative C6 Elisa On Serum
Early clinical Lyme disease in the form of erythema migrans with associated history of a tick bite should be treated empirically. There is no need for testing unless there are further symptoms.
A negative ELISA result in the early stages of Lyme disease does not exclude infection. If acute Lyme disease is suspected but serology results are negative, we recommend that the test is repeated in 4-6 weeks with a fresh sample to look for seroconversion.
In patients with long term symptoms a negative ELISA test usually excludes Lyme disease as a cause of these symptoms. Information on differential diagnosis for patients with persistent symptoms and negative Lyme disease serology results is available.
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Unvalidated Tests And Interpretation Criteria
Several alternative testing centers use laboratory-developed tests that are not currently subject to FDA regulations and might not be clinically validated . Alternative laboratories might also use standard Western immunoblot techniques but apply nonstandard interpretation criteria or fail to perform the recommended first-tier EIA. These laboratories often claim to specialize in testing for tickborne diseases and assert that their tests have better sensitivity than standardized 2-tiered serologic analysis.
False-positive results for alternative tests or unvalidated interpretation criteria can lead to patient confusion and misdiagnosis . A recent evaluation of laboratories by Fallon et al. reported an alarming false-positive rate of 58% for samples from healthy control patients submitted to an alternative testing center that used unvalidated criteria to interpret IgM and IgG immunoblots . Moreover, evaluation of published results from a laboratory claiming to have a new Borrelia culture method demonstrated that results were highly suspicious for laboratory contamination . Additional alternative tests, such as urine antigen tests and CD57 tests, have also been shown to be inaccurate .
It is recommended that clinicians only use Lyme disease tests that have been clinically validated and cleared by the FDA . If there is ever any question regarding testing protocols or interpretation, clinicians should consult an infectious disease specialist.
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Lyme disease is a serious problem here in the United States and we really need to find solutions to some of the limitations that we have, particularly in diagnosing this infection, said Claudia Molins, a microbiologist at the CDC. We want a test that can be used within the first two weeks of infection and that does not rely on antibody production.
So Molins and her colleagues are focusing on metabolomics an approach that, rather than testing directly for the immune response to the infection, instead looks for a wide spectrum of collateral damage.
Specifically theyre looking for so-called metabolite biosignatures: the litany of sugars, peptides, lipids, amino acids, fatty acids, and nucleotides normally present in the blood.
Infections like Lyme, the thinking goes, change the levels of these things and they do so in a predictable, measurable way.
Molins and her team tested that hypothesis by tapping a unique CDC resource freezers filled with well-characterized blood serum samples. They used serum from 89 early Lyme patients, within the first month of infection, and 50 healthy controls to develop an algorithm to detect Lyme blood signatures.
The researchers then tested that algorithm on a larger sample of serums and found that they could diagnose 88 percent of early Lyme cases, and could differentiate Lyme from other diseases 93 percent of the time. The results were published in a 2015 study in Clinical Infectious Diseases.