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Why Is Lyme Disease So Hard To Diagnose

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Is There A Blood Test For Lyme Disease

Why Is It So Hard to Diagnose Lyme Disease?

If your doctor suspects that you have Lyme disease, they may order two blood tests. These will look for signs that your body is trying to fight it off. The results are most precise a few weeks after youâve been infected.

These tests are:

ELISA test. This test canât check for the bacteria that causes Lyme disease. It can only look for your immune systemâs response to it.

Once Borrelia burgdorferi gets into your blood, your body begins to make special proteins called antibodies to fight it off. The ELISA test checks for those antibodies.

Although itâs the most common way to check for Lyme disease, the ELISA test isnât perfect. It can sometimes give false âpositiveâ results. On the other hand, if you have it done too soon after youâve been infected, your body may not have developed enough antibodies for the test to detect them. This will give you a ânegativeâ result even though you do have Lyme disease.

Western blot test. Whether your ELISA test comes back positive or negative, your doctor will need to do this blood test, too.

A Western blot uses electricity to split certain proteins in your blood into patterns. This is then compared to the pattern of people known to have Lyme disease.

At least five band matches means that you have Lyme disease. Still, not all labs have the same standards. Thereâs a chance that you could get a âpositiveâ result from one and a ânegativeâ result from another.

Learn More About Lyme Disease Diagnosis Testing

Tests can not only help to diagnose a disease, but also to manage an illness. A good test can help a doctor assess the severity of disease, estimate the patients prognosis, monitor the course of disease progression, stability or resolution, detect relapse, and select drugs or adjust therapy. Unfortunately, a test with this capability does not exist for Lyme disease. To learn more about specific tests, visit: Lyme Disease Tests.

LymeDisease.org has developed a Lyme disease symptom checklist to help you document your exposure to Lyme disease and common symptoms for your healthcare provider. You will receive a report that you can print out and take with you to your next doctors appointment that may be helpful in your Lyme disease diagnosis.

The Main Controversies Surrounding Lyme Disease

The blood test the CDC recommends to diagnose Lyme checks for an immune response to the bacteria, not for the Borrelia itself. Thats why the test can be negative if the disease is present for less than a month. It takes at least a couple of weeks to mount an immune response that would turn the test positive. It is easier to diagnose Lyme if you have the classic bulls-eye rash that shows up a few days after the tick bite. In these cases, testing is not even necessary. But the rash only shows up in 80% of cases.

If making a diagnosis can be complex, the controversy about the treatment is so intense that some have even coined the dispute Lyme wars. The clash emerged from doctors offices, and spread to public hearings in statehouses around the country. One of the main points of contention is the duration of antibiotic treatment not only for acute Lyme but also for PTLD. The evidence to recommend a specific length of antibiotics treatment is scarce. Most physicians follow the two- to-four-week treatment the CDC recommends. Some studies funded by the National Institutes of Health did not show any benefit when patients used several months of antibiotics. However, there is anecdotal evidence from a few patients who improved after months of antibiotic treatment. The naysayers believe this is probably due to a placebo effect.

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Poor Lyme Disease Testing And Diagnosis Leads To Complications

Further, Lyme disease diagnosis complications are caused by a lack of adequate testing. And unfortunately for those infected, there is no standard test within the medical field that indicates a positive condition. While testing is available, it only focuses on markers for the disease’s early stages.

Moreover, current tests at most laboratories are based on only one strain of Borrelia burgdorferi , despite the fact that there are more than 300 strains known worldwide , such as Borrelia andersonii, Borrelia lonestari, and Borrelia miyamotoi. These other species of Borrelia are ignored mainly because the laboratories have difficulty isolating and identifying them. This difficulty contributes to researchers’ inability to study and understand the bacteria’s pathogenesis.

Is There A Lyme Disease Test Kit

Lyme Disease Is Baffling, Even to Experts

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.

  • Center for Disease Control and Prevention . Data and surveillance. Retrieved from
  • Eugene D. S. . Lyme disease. N Engl J Med 2014 370:1724-1731. Retrieved from
  • Zeller J. L. . Lyme disease. JAMA. 2007 297:2664. Retrieved from
  • Center for Disease Control and Prevention . Diagnosis and testing. Retrieved from
  • 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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    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.

    For Many Lyme Disease Patients The Bacteria Seem To Outsmart Antibiotic Treatment Why

    Its a hotly debated topic, and one that is still not completely understood what causes the persistent symptoms in many Lyme disease patients? Why is it that 10-20% of patients, after early diagnosis and treatment with antibiotics, continue to face long-term, chronic, even debilitating, symptoms including joint or muscular pain, fatigue, and/or neurocognitive problems? And why do patients diagnosed later in their disease often have a more difficult time finding an effective treatment? Key possible culprits, persister bacteria, are under investigation, and researchers are uncovering their fascinating and diverse array of adaptive abilities, with the goal of one day eradicating them and more effectively helping patients.

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    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.

    Lyme Disease Can Be Difficult To Diagnose

    Why Lyme Disease Is Hard to Diagnose

    Lyme disease is primarily caused by the bite of a black-legged tick, also called a deer tick, which transmits the spirochete Borrelia burgdorferi into the bloodstream.

    Upon infection, some patients may develop a bulls eye rash, a circular red rash centered around the bite that is also referred to as erythema migrans . Anyone who experiences this symptom should seek medical attention immediately in order to receive a full course of antibiotics. Antibiotics are critical immediately after infection as they can prevent chronic Lyme from developing . However, at least 30% of people exposed to Lyme disease do not develop this rash, which means many may become infected and not even know it.

    Once the Borrelia bacteria has entered the body, this spirochete is able to hide itself from the bodys immune system while wreaking havoc on bodily systems as it attacks tissues and later triggers an inflammatory response. In this way, although a chronic infection, Lyme disease mirrors many autoimmune conditions because not only is the spirochete bacteria attacking the body, the body is also triggered to attack itself.

    This results in a wide range of symptoms including:

    • Bloating & digestive issues
    • Mood swings & instability

    Although there are so many cases of chronic Lyme in the United States alone, because Lyme disease mirrors other inflammatory conditions, many Lyme patients remain un or misdiagnosed.

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    Two Factors That Make Lyme Disease Hard To Diagnose

    Lyme disease commonly presents like many other illnesses including the flu. This factor alone makes it hard to differentiate the symptoms of Lyme disease.

    Another factor that makes Lyme disease hard to diagnose is the lack of training among doctors. Doctors who reside in states with a high incidence of Lyme disease cases are more experienced. On the other hand, in states where Lyme disease is not as prevalent diagnoses of the illness may take much longer.

    However, when a patient suffering from Lyme disease develops a bulls-eye rash, the illness is easier to spot. The problem is many patients dont develop this rash or its not noticeable.

    Beware Of The Bite: Why Is Lyme Disease So Hard To Diagnose

    May 9, 2018General

    The thought of a tick burrowing into your skin and sucking your blood is enough to give anyone a case of the creepy crawlies. These pests are more than just a minor nuisance. The blacklegged tick, sometimes called a deer tick, carries bacteria that can infect humans with Lyme disease. Each year, approximately 30,000 Americans are diagnosed with Lyme disease.

    Ninety-five percent of Lyme disease cases come from:

    Diagnosing Lyme disease can be difficult because symptoms often mimic other diseases or may disappear and reappear over a long period of time. Here’s what you need to know about Lyme disease, and why it’s so hard to diagnose.

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    Related: Persistent Lyme Disease Symptoms Arent Helped By Long

    Microbiologist Elli Theel, who directs the Infectious Diseases Serology Laboratory at Mayo Clinic, calls the 2015 study incredibly promising. The sensitivity they showed just in early Lyme disease patients was very high, the highest Ive actually seen, she said.

    In an upcoming publication, the researchers also showed that metabolomics can differentiate Lyme from a similar tick-borne disease called southern tick-associated rash illness . The disease causes similar symptoms as Lyme, including a bullseye rash, and occurs in overlapping geographic regions. Currently there is no laboratory test to diagnose STARI, and little is known about how the disease progresses and how to treat it, something Molins hopes will change with better testing.

    Lyme Disease Diagnosis And Testing Highlights

    Chronic Lyme disease: Symptoms, diagnosis, and treatment
    • LLMDS consider the specificity of the particular bands that test positive for a patient.
    • Although the CDC requires 5 of 10 bands for IgG surveillance purposes, 2 of 5 bands have specificity of 93-96% and a sensitivity of 100%. .
    • 56% of patients with Lyme disease test negative using the two-tiered testing system recommended by the CDC.
    • The CDC case surveillance definition allows single-tier IgG immunoblot seropositivity using established criteria.
    • The CDC states: This surveillance case definition was developed for national reporting of Lyme disease it is not intended to be used in clinical diagnosis.
    • The College of American Pathologists found that ELISA tests do not have adequate sensitivity to be used for screening purposes.
    • 52% of patients with chronic disease are negative by ELISA but positive by Western blot.

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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.

    Ideally, the CDC recommends standard two-tier testing to confirm the veracity of the Lyme disease test accuracy. Together, the ELISA and western blot tests are 99.9% accurate.

    What Is The Difference Between This Indirect Blood Diagnostic Test And A Direct Test

    Direct diagnostic tests measure the presence of the bacteria directly and are much more reliable than tests looking for indirect measurement of antibodies that measure a persons immune response to an infection. Lyme disease diagnoses and disease management would benefit from validated diagnostic tests that directly measure the infection such as a culture, PCR test, or antigen detection tests. Direct tests are vital to the management of other infectious diseases such as HIV, hepatitis C, strep, and COVID-19, but have not yet become widely available for Lyme disease.

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    Why Is Lyme Disease So Hard For Doctors To Diagnose

    One of the most common things all Lyme disease patients share is how difficult it was to get a correct diagnosis. Whether you have health insurance or not, coming down with Lyme disease, a tick-borne illness, can be a painful as well as a frustrating experience.

    Unless your physician is knowledgeable or you consult a specialist debilitating pain and fatigue is often misdiagnosed as chronic fatigue syndrome or depression. Meanwhile, others may blame it on dehydration or exhaustion.

    Most physicians, especially those who practice in tick hot-spots like the northeastern United States, have a good idea what to look out for during spring and summer months, if they suspect symptoms to be Lyme disease. But, because the disease is less prevalent in Southern California, if a patient hasnt had a rash and doesnt remember being bitten, doctors here may be slower to identify ticks as a potential factor and, thereby, delay administering the proper and needed treatment.

    Fortunately, according to Anne R. Bass, MD, a rheumatologist at the Hospital for Special Surgery in New York City, most cases of Lyme disease are caught and treated much earlier and misdiagnosis isnt very common in the region. However, for medical professionals in Southern California who dont see many cases, pinpointing this type of infection can be somewhat complicated as symptoms are not always crystal clear.

    How Lyme Disease Is Diagnosed

    Lyme disease: Why it is so difficult to detect and diagnose

    Your doctor or other healthcare provider may have difficulty diagnosing Lyme disease because many of its symptoms are similar to those of other disorders and illnesses. The only distinctive sign unique to Lyme disease is absent in at least a quarter of the people who become infected. Although a tick bite is an important clue for diagnosis, many people can’t recall having been recently bitten by a tick. This isn’t surprising because the deer tick is tiny, and a tick bite is usually painless.

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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.

    Diagnosis Of Lyme Disease

    Many cases of Lyme disease are initially misdiagnosed. Lyme disease can be difficult to diagnose because early symptoms of fever, severe fatigue, and achiness are also common in many other illnesses. In addition, diagnostic blood tests are not always dependable, particularly in early disease. However, the round expanding red lesion rash is a unique sign that is more specific for Lyme disease, and many times a diagnosis can be made based on the tell-tale erythema migrans rash itself. Yet, it is important to understand that the erythema migrans rash is not always present or recognizable, and symptoms can fluctuate.

    Think the Lyme disease rash is always a bulls-eye? Think again.Think its a spider bite? Think again. Please refer to our poster of varied rash manifestations as a helpful Lyme disease rash identification tool.

    Recognizing the Lyme disease erythema migrans rash can be crucial to early diagnosis and treatment.

    Despite common belief, the stereotypical ring within a ring bullseye rash is only present in a minority of Lyme disease patients. Instead, the majority of Lyme disease rashes are uniformly red or blue-red and do not have a central clearing or bullseye. Sometimes the site of the tick bite is clearly visible in the center of this lesion. The erythema migrans rash is almost always round or oval and expands over days to a diameter greater than 2. The Lyme rash is often confused with a spider bite, despite spider bites not expanding in this way.

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