From Lyme Disease.org
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Lyme disease is a bacterial infection primarily transmitted by Ixodes ticks, also known as deer ticks, and on the West Coast, black-legged ticks. These tiny arachnids are typically found in wooded and grassy areas. Although people may think of Lyme as an East Coast disease, it is found throughout the United States, as well as in more than sixty other countries.
The Centers for Disease Control and Prevention estimate that 300,000 people are diagnosed with Lyme disease in the US every year. That’s 1.5 times the number of women diagnosed with breast cancer, and six times the number of people diagnosed with HIV/AIDS each year in the US. However, because diagnosing Lyme can be difficult, many people who actually have Lyme may be misdiagnosed with other conditions. Many experts believe the true number of cases is much higher. |
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Lyme disease affects people of all ages. The CDC notes that it is most common in children, older adults, and others such as firefighters and park rangers who spend time in outdoor activities and have higher exposure to ticks.
What Is Lyme Disease?
Lyme disease is caused by a spirochete—a corkscrew-shaped bacterium called Borrelia burgdorferi. Lyme is called “The Great Imitator,” because its symptoms mimic many other diseases. It can affect any organ of the body, including the brain and nervous system, muscles and joints, and the heart.
Image of B. burgdorferi under atomic force microscope. Courtesy of Dr. Eva Sapi.
Patients with Lyme disease are frequently misdiagnosed with chronic fatigue syndrome, fibromyalgia, multiple sclerosis, and various psychiatric illnesses, including depression. Misdiagnosis with these other diseases may delay the correct diagnosis and treatment as the underlying infection progresses unchecked.
How Do People Get Lyme Disease?
Most people get Lyme from the bite of the nymphal, or immature, form of the tick. Nymphs are about the size of a poppy seed. Because they are so tiny and their bite is painless, many people do not even realize they have been bitten.
Once a tick has attached, if undisturbed it may feed for several days. The longer it stays attached, the more likely it will transmit the Lyme and other pathogens into your bloodstream. Refer to tick section.
If pregnant women are infected, they sometimes pass Lyme disease to their unborn children and, while not common, stillbirth has occurred. Some doctors believe other types of human-to-human transmission are possible but little is known for certain.
Where Is Lyme Disease Found?
Lyme disease has been found on every continent except Antarctica. It is found all across the United States, with a particularly high incidence in the East, Midwest, and West Coast. Rates have increased significantly over time. Some of this increase may be because of disease spread, but it is also likely that it reflects growing public awareness of the disease.
Not all ticks are infected. Within endemic areas, there is considerable variation in tick infection rates depending on the type of habitat, presence of wildlife and other factors. Tick infection rates can vary from 0% to more than 70% in the same area. This uncertainty about how many ticks are infected makes it hard to predict the risk of Lyme disease in a given region.
In the South, a Lyme-like disease called STARI (Southern Tick-Associated Rash Illness) transmitted by the Lone Star tick has been described. Scientists are still debating about what organism(s) in the Lone Star tick may cause the disease as well as the treatment of patients with a rash in the South. However, Lyme disease has been reported in certain areas of the South and Southeast and patients with STARI may be quite ill. Because of this, patients in the South with a rash should be treated. (Herman-Giddens 2014)
The risk of getting Lyme disease is often reflected in risk maps. Some maps show the number of human cases of Lyme disease reported for surveillance. These maps may not accurately reflect risk because only 10% of reportable Lyme cases are currently captured by CDC surveillance. Other risk maps show the number of infected ticks that researchers have collected in a certain area. These maps are often not accurate because many states and counties have done little or no testing of ticks in the area. The best maps of risk may be canine maps. This is because dogs are routinely screened for Lyme disease through a nationwide program as well as the close association of dogs with humans.
What Is Lyme Disease?
Lyme disease is caused by a spirochete—a corkscrew-shaped bacterium called Borrelia burgdorferi. Lyme is called “The Great Imitator,” because its symptoms mimic many other diseases. It can affect any organ of the body, including the brain and nervous system, muscles and joints, and the heart.
Image of B. burgdorferi under atomic force microscope. Courtesy of Dr. Eva Sapi.
Patients with Lyme disease are frequently misdiagnosed with chronic fatigue syndrome, fibromyalgia, multiple sclerosis, and various psychiatric illnesses, including depression. Misdiagnosis with these other diseases may delay the correct diagnosis and treatment as the underlying infection progresses unchecked.
How Do People Get Lyme Disease?
Most people get Lyme from the bite of the nymphal, or immature, form of the tick. Nymphs are about the size of a poppy seed. Because they are so tiny and their bite is painless, many people do not even realize they have been bitten.
Once a tick has attached, if undisturbed it may feed for several days. The longer it stays attached, the more likely it will transmit the Lyme and other pathogens into your bloodstream. Refer to tick section.
If pregnant women are infected, they sometimes pass Lyme disease to their unborn children and, while not common, stillbirth has occurred. Some doctors believe other types of human-to-human transmission are possible but little is known for certain.
Where Is Lyme Disease Found?
Lyme disease has been found on every continent except Antarctica. It is found all across the United States, with a particularly high incidence in the East, Midwest, and West Coast. Rates have increased significantly over time. Some of this increase may be because of disease spread, but it is also likely that it reflects growing public awareness of the disease.
Not all ticks are infected. Within endemic areas, there is considerable variation in tick infection rates depending on the type of habitat, presence of wildlife and other factors. Tick infection rates can vary from 0% to more than 70% in the same area. This uncertainty about how many ticks are infected makes it hard to predict the risk of Lyme disease in a given region.
In the South, a Lyme-like disease called STARI (Southern Tick-Associated Rash Illness) transmitted by the Lone Star tick has been described. Scientists are still debating about what organism(s) in the Lone Star tick may cause the disease as well as the treatment of patients with a rash in the South. However, Lyme disease has been reported in certain areas of the South and Southeast and patients with STARI may be quite ill. Because of this, patients in the South with a rash should be treated. (Herman-Giddens 2014)
The risk of getting Lyme disease is often reflected in risk maps. Some maps show the number of human cases of Lyme disease reported for surveillance. These maps may not accurately reflect risk because only 10% of reportable Lyme cases are currently captured by CDC surveillance. Other risk maps show the number of infected ticks that researchers have collected in a certain area. These maps are often not accurate because many states and counties have done little or no testing of ticks in the area. The best maps of risk may be canine maps. This is because dogs are routinely screened for Lyme disease through a nationwide program as well as the close association of dogs with humans.
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Lyme Disease Symptoms
Symptoms of early Lyme disease may present as a flu-like illness (fever, chills, sweats, muscle aches, fatigue, nausea and joint pain). Some patients have a rash or Bell’s palsy (facial drooping). However, although a rash shaped like a bull’s-eye is considered characteristic of Lyme disease, many people develop a different kind of Lyme rash or none at all. Estimates of patients who develop a Lyme rash vary widely, ranging from about 30% to 80%. For example, a CDC report on Lyme carditis, which can be fatal, found that only 42% of cases had a rash. If Lyme disease is not diagnosed and treated early, it may become late-stage or chronic. This may also occur when early treatment is inadequate. While some symptoms of chronic or late stage Lyme disease are similar to those of early Lyme, as the graphic below shows, there are important differences. |
Lyme disease may spread to any part of the body and affect any body system. Typically, it affects more than one body system. In our survey, which drew over 5,000 responses, patients with chronic Lyme disease reported an average of three severe or very severe symptoms, with 74% reporting at least one symptom as severe or very severe.
An extensive list of symptoms of chronic Lyme disease was developed by Dr. Joseph Burrascano, a pioneer in treating chronic Lyme disease.
Many Lyme symptoms, such as fatigue, cognitive impairment, joint pain, poor sleep, mood problems, muscle pain, and neurological presentations also occur in other diseases. Hence, the symptoms of Lyme disease significantly overlap those of chronic fatigue, fibromyalgia, rheumatoid arthritis, multiple sclerosis, Parkinson’s disease, ALS, depression and Alzheimer’s disease. Many Lyme patients report being misdiagnosed with a different condition before being properly diagnosed with Lyme disease.
In order for the Centers for Disease Control (CDC) to recognize a Lyme case for surveillance purposes, there must be “objective” findings, such as positive blood tests, Bell’s palsy or joint swelling (even though Lyme blood tests are unreliable and the CDC’s accepted “objective” indicators are not common).
This situation contributes to what many experts view as severe undercounting of Lyme disease by the CDC.
An extensive list of symptoms of chronic Lyme disease was developed by Dr. Joseph Burrascano, a pioneer in treating chronic Lyme disease.
Many Lyme symptoms, such as fatigue, cognitive impairment, joint pain, poor sleep, mood problems, muscle pain, and neurological presentations also occur in other diseases. Hence, the symptoms of Lyme disease significantly overlap those of chronic fatigue, fibromyalgia, rheumatoid arthritis, multiple sclerosis, Parkinson’s disease, ALS, depression and Alzheimer’s disease. Many Lyme patients report being misdiagnosed with a different condition before being properly diagnosed with Lyme disease.
In order for the Centers for Disease Control (CDC) to recognize a Lyme case for surveillance purposes, there must be “objective” findings, such as positive blood tests, Bell’s palsy or joint swelling (even though Lyme blood tests are unreliable and the CDC’s accepted “objective” indicators are not common).
This situation contributes to what many experts view as severe undercounting of Lyme disease by the CDC.
Early Lyme Disease
Early in the infection, Lyme disease may feel like the flu: fever, sore muscles, headache and fatigue. Some people may develop a highly distinctive rash, which may look like a bull’s-eye. However, many people with Lyme never knew they were bitten and never developed a rash.
The CDC reports that rashes occur in 60-80% of cases. However, the true incidence of rash is unknown because no definitive studies on humans have been done. (It wouldn’t be ethical to infect people with Lyme just to see if they develop a rash.) In LymeDisease.org’s survey of 3000 patients with chronic Lyme, 40% reported a rash. Most of the time the rash is an ordinary red area; however if it is a “bull’s-eye” shape with a darker edge, it is a definite sign of Lyme disease and needs immediate treatment.
Unfortunately this distinctive rash occurs in less than 10% of those who contract Lyme disease. (Smith, 2002) When present, the Lyme rash is more likely to be diffuse.
It starts a few days or even several weeks after the bite and then expands over a period of days or weeks to several inches across, perhaps with a central clearing. Untreated, it can last for weeks before fading, or it may fade and recur. The rash may have an irregular shape, blistering or a scabby appearance. Some rashes look like a bruise. Lyme rashes may resemble spider bites, ringworm, or cellulitis. Multiple, so-called “satellite” rashes may appear on different parts of the body.
If you develop a rash, take a photo of it and see a doctor as soon as possible. Other symptoms of early Lyme disease may include a fever, headache, fatigue, or muscle aches.
Unfortunately, diagnostic testing is unreliable in the early stages of infection, often giving false negatives. Treatment should not be delayed pending a positive test result if the suspicion of Lyme disease is high (exposure, tick bite, possible rash).
Early in the infection, Lyme disease may feel like the flu: fever, sore muscles, headache and fatigue. Some people may develop a highly distinctive rash, which may look like a bull’s-eye. However, many people with Lyme never knew they were bitten and never developed a rash.
The CDC reports that rashes occur in 60-80% of cases. However, the true incidence of rash is unknown because no definitive studies on humans have been done. (It wouldn’t be ethical to infect people with Lyme just to see if they develop a rash.) In LymeDisease.org’s survey of 3000 patients with chronic Lyme, 40% reported a rash. Most of the time the rash is an ordinary red area; however if it is a “bull’s-eye” shape with a darker edge, it is a definite sign of Lyme disease and needs immediate treatment.
Unfortunately this distinctive rash occurs in less than 10% of those who contract Lyme disease. (Smith, 2002) When present, the Lyme rash is more likely to be diffuse.
It starts a few days or even several weeks after the bite and then expands over a period of days or weeks to several inches across, perhaps with a central clearing. Untreated, it can last for weeks before fading, or it may fade and recur. The rash may have an irregular shape, blistering or a scabby appearance. Some rashes look like a bruise. Lyme rashes may resemble spider bites, ringworm, or cellulitis. Multiple, so-called “satellite” rashes may appear on different parts of the body.
If you develop a rash, take a photo of it and see a doctor as soon as possible. Other symptoms of early Lyme disease may include a fever, headache, fatigue, or muscle aches.
Unfortunately, diagnostic testing is unreliable in the early stages of infection, often giving false negatives. Treatment should not be delayed pending a positive test result if the suspicion of Lyme disease is high (exposure, tick bite, possible rash).
Chronic Lyme Disease
Lyme disease is not diagnosed and treated early, the spirochetes can spread and may go into hiding in different parts of the body. Weeks, months or even years later, patients may develop problems with the brain and nervous system, muscles and joints, heart and circulation, digestion, reproductive system, and skin. Symptoms may disappear even without treatment and different symptoms may appear at different times.
Untreated or undertreated Lyme can cause some people to develop severe symptoms that are hard to resolve. This condition may be referred to as post-treatment Lyme disease (PTLD) or chronic Lyme disease (CLD). We don’t know exactly how many people who are diagnosed and treated remain ill. CDC estimates range from 10-20%. A recent study of early Lyme disease treated at EM rash reported 36% remain ill. (Aucott 2013)
The International Lyme and Associated Diseases Society (ILADS), recently published new treatment guidelines. These guidelines contained a rigorous assessment of the evidence and found treatment failure rates ranging from 16% to 39% for early treatment. Estimates for patients with chronic Lyme disease are much higher, ranging from 26% to 50%. (Johnson 2004)
For more information about the new ILADS guidelines, see issue 26-3 of The Lyme Times.
Although experts do not often attribute deaths to Lyme disease, studies have documented at least 23. In 2014, the CDC issued a warning regarding three sudden cardiac deaths related to Lyme carditis.
Many patients with chronic Lyme disease are profoundly debilitated. Investigators of the four NIH-sponsored retreatment trials documented that the patients’ quality of life was consistently worse than that of control populations and equivalent to that of patients with congestive heart failure. Pain levels were similar to those of post-surgical patients, and fatigue was on par with that seen in multiple sclerosis.
An LDo published survey of over 3,000 patients with chronic Lyme disease found that patients suffer a worse quality of life than most other chronic illnesses, including congestive heart failure, diabetes, multiple sclerosis and arthritis. Over 70% of patients with chronic Lyme disease reported fair or poor health. Similar results have been found in other studies. (Cameron, 2008)
Many of the symptoms associated with Lyme disease are common in other diseases. The CDC surveillance criteria for confirmed cases specifically exclude most of the symptoms that patients report, including fatigue, sleep impairment, joint pain, muscle aches, other pain, depression, cognitive impairment, neuropathy, and headaches. However, these common symptoms can be severe and may seriously affect quality of life.
In LDo’s chronic Lyme survey, over 75% of patients reported at least one symptom as severe or very severe and 63% reported two or more such symptoms. (Johnson 2014) Find out more about LDo peer-reviewed published surveys.
Lyme disease is not diagnosed and treated early, the spirochetes can spread and may go into hiding in different parts of the body. Weeks, months or even years later, patients may develop problems with the brain and nervous system, muscles and joints, heart and circulation, digestion, reproductive system, and skin. Symptoms may disappear even without treatment and different symptoms may appear at different times.
Untreated or undertreated Lyme can cause some people to develop severe symptoms that are hard to resolve. This condition may be referred to as post-treatment Lyme disease (PTLD) or chronic Lyme disease (CLD). We don’t know exactly how many people who are diagnosed and treated remain ill. CDC estimates range from 10-20%. A recent study of early Lyme disease treated at EM rash reported 36% remain ill. (Aucott 2013)
The International Lyme and Associated Diseases Society (ILADS), recently published new treatment guidelines. These guidelines contained a rigorous assessment of the evidence and found treatment failure rates ranging from 16% to 39% for early treatment. Estimates for patients with chronic Lyme disease are much higher, ranging from 26% to 50%. (Johnson 2004)
For more information about the new ILADS guidelines, see issue 26-3 of The Lyme Times.
Although experts do not often attribute deaths to Lyme disease, studies have documented at least 23. In 2014, the CDC issued a warning regarding three sudden cardiac deaths related to Lyme carditis.
Many patients with chronic Lyme disease are profoundly debilitated. Investigators of the four NIH-sponsored retreatment trials documented that the patients’ quality of life was consistently worse than that of control populations and equivalent to that of patients with congestive heart failure. Pain levels were similar to those of post-surgical patients, and fatigue was on par with that seen in multiple sclerosis.
An LDo published survey of over 3,000 patients with chronic Lyme disease found that patients suffer a worse quality of life than most other chronic illnesses, including congestive heart failure, diabetes, multiple sclerosis and arthritis. Over 70% of patients with chronic Lyme disease reported fair or poor health. Similar results have been found in other studies. (Cameron, 2008)
Many of the symptoms associated with Lyme disease are common in other diseases. The CDC surveillance criteria for confirmed cases specifically exclude most of the symptoms that patients report, including fatigue, sleep impairment, joint pain, muscle aches, other pain, depression, cognitive impairment, neuropathy, and headaches. However, these common symptoms can be severe and may seriously affect quality of life.
In LDo’s chronic Lyme survey, over 75% of patients reported at least one symptom as severe or very severe and 63% reported two or more such symptoms. (Johnson 2014) Find out more about LDo peer-reviewed published surveys.
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The survey also found that patients with chronic Lyme disease have high disability and unemployment rates. Over 40% of patients with chronic Lyme disease reported that they currently are unable to work because of Lyme disease and 24% report that they have received disability at some point in their illness. Lyme Disease Diagnosis Lyme disease is a clinical diagnosis—based on your medical history, symptoms and exposure to ticks. Because the typical diagnostic tests for Lyme are so insensitive, a negative test result does not mean you don’t have Lyme. There are many reasons why someone who actually has Lyme may have a negative test result. There may not have been time for antibodies to develop; the immune system may be suppressed; or the person may be infected with a strain the test doesn’t measure. Lyme disease is known to inhibit the immune system and 20-30% of patients have falsely negative antibody tests. |
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Did You Know?
- LLMDs consider the specificity of the particular bands that test positive for a patient
- Although the CDC requires 5 of 10 bands to IgC surveillance purposes, 2 of 5 bands have specificity of 93-96% and a sensitivity of 100% (Engstrom 1995)
- The College of American Pathologists (CAP) found that ELISA tests to not have adequate sensitivity to be used for screening purposes (Bakken 1997)
- The NIAID views the Western blot as the best method for detecting Borrelia antibodies currently available
- 52% of patients with chronic Lyme disease are negative by ELISA but positive by Western blot (Donta 2002)
- Between 20-30% of patients with confirmed Lyme disease are seronegative (Aguero-Rosenfeld 1996, 1993; Donta 1997)
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 patient’s 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.
Two-Tier TestingThe most common diagnostic tests for Lyme disease are indirect ones. They measure the patient’s antibody response to the infection, not the infection itself. The two most-used antibody tests are the enzyme-linked immunosorbent assay (ELISA) and the Western blot. The CDC recommends that doctors first order an ELISA to screen for the disease and then confirm the disease with a Western blot.
During the first four-to-six weeks of Lyme infection, these tests are unreliable because most people have not yet developed the antibody response that the test measures. Even later in the illness, the two-tiered testing is highly insensitive missing roughly half of those who have Lyme disease.
Two-tiered testing uses two tests. The first is a screening test that should detect anyone who might have the disease. Tests that do this well have are regarded as having high sensitivity. This test is followed by a second test that is intended to make sure that only people with the disease are diagnosed. Tests that do this well have high specificity.
HIV/AIDS is diagnosed with tests that are both highly sensitive and highly specific. They are accurate more than 99% of the time. In Lyme disease, the second test is highly specific. So there are few false positives. Unfortunately, the screening test is highly insensitive and fails to accurately identify patients who have Lyme disease. The two-tiered test system misses roughly 54% of patients. (Stricker Minerva 2010)
Two-Tier TestingThe most common diagnostic tests for Lyme disease are indirect ones. They measure the patient’s antibody response to the infection, not the infection itself. The two most-used antibody tests are the enzyme-linked immunosorbent assay (ELISA) and the Western blot. The CDC recommends that doctors first order an ELISA to screen for the disease and then confirm the disease with a Western blot.
During the first four-to-six weeks of Lyme infection, these tests are unreliable because most people have not yet developed the antibody response that the test measures. Even later in the illness, the two-tiered testing is highly insensitive missing roughly half of those who have Lyme disease.
Two-tiered testing uses two tests. The first is a screening test that should detect anyone who might have the disease. Tests that do this well have are regarded as having high sensitivity. This test is followed by a second test that is intended to make sure that only people with the disease are diagnosed. Tests that do this well have high specificity.
HIV/AIDS is diagnosed with tests that are both highly sensitive and highly specific. They are accurate more than 99% of the time. In Lyme disease, the second test is highly specific. So there are few false positives. Unfortunately, the screening test is highly insensitive and fails to accurately identify patients who have Lyme disease. The two-tiered test system misses roughly 54% of patients. (Stricker Minerva 2010)
Because of this, LDo recommends the patients and physicians skip the ELISA and go straight to the Western blot.
Western Blot
Labs performing a Western blot use electricity to separate proteins called antigens into bands. The read-out from the Western blot looks like a bar code. The lab compares the pattern produced by running the test with your blood to a template pattern representing known cases of Lyme disease. If your blot has bands in the right places, and the right number of bands, it is positive.
The CDC requires 5 out of 10 bands for a positive test result. However, because some bands on the Western blot are more significant than others your doctor may decide you have Lyme disease even if your Western blot does not have the number of bands or specific bands recommended by the CDC. Different laboratories use different methods and criteria for interpreting the test, so you can have a positive test result from one lab and a negative test result from another.
For a comprehensive explanation of the western blot test, download this PDF. To view an interpretation of the western blot test, download this document.
Other TestsThree other tests that may be used to diagnose Lyme disease are polymerase chain reaction (PCR), antigen detection and culture testing. They are called “direct” tests because they detect the bacteria, not just your immune response to it.
PCR multiplies a key portion of DNA from the Lyme bacteria so that it can be detected. While PCR is highly accurate when the Lyme DNA is detected, it produces many false negatives. This is because the Lyme bacteria are sparse and may not be in the sample tested.
Antigen detection tests look for a unique Lyme protein in fluid (e.g. blood, urine, joint fluid). Sometimes people whose indirect tests are negative are positive on this test.
Culture is the “gold standard” test for identifying bacteria. The lab takes a sample of blood or other fluid from the patient and attempts to grow Lyme spirochetes in a special medium.
Although culture tests are generally accepted as proof of infection, the CDC has advised caution on the only commercially available culture test developed by Advanced Laboratory Services. LDo recognizes that the test is new and requires further validation in other studies. However, we believe that informed patients should be able to choose the test if they prefer. Choice is particularly important given the low quality of Lyme disease tests generally.
Recommended Labs
Although the CDC recommends that patients use “FDA-approved” tests, LDo does not support this restriction because FDA approval is not required to perform clinical testing and the FDA tests currently on the market have low sensitivity. The US Centers for Medicare & Medicaid Services (CMS) requires tests without FDA approval to undergo a rigorous certification process. CMS regulates all laboratory testing (except research) performed on humans in the U.S. through the Clinical Laboratory Improvement Amendments (CLIA). CLIA certification is designed to ensure quality laboratory testing. All clinical laboratories must be properly certified to receive Medicare or Medicaid payments. CLIA covers approximately 244,000 laboratory entities.
Two highly specific bands (OspA and OspC) are not included in the CDC bands because they were used for vaccine development. Your doctor may want to know if you have antibodies directed towards those proteins. A few labs test for them.
LDo recommends that you use a CLIA-approved lab that specializes in testing for tick-borne diseases and reports all bands on the Western blot. The healthcare professional ordering the test must ask the lab to report all bands except in the case of IGeneX, which automatically reports all bands. Blots may still vary in sensitivity.
Western Blot
Labs performing a Western blot use electricity to separate proteins called antigens into bands. The read-out from the Western blot looks like a bar code. The lab compares the pattern produced by running the test with your blood to a template pattern representing known cases of Lyme disease. If your blot has bands in the right places, and the right number of bands, it is positive.
The CDC requires 5 out of 10 bands for a positive test result. However, because some bands on the Western blot are more significant than others your doctor may decide you have Lyme disease even if your Western blot does not have the number of bands or specific bands recommended by the CDC. Different laboratories use different methods and criteria for interpreting the test, so you can have a positive test result from one lab and a negative test result from another.
For a comprehensive explanation of the western blot test, download this PDF. To view an interpretation of the western blot test, download this document.
Other TestsThree other tests that may be used to diagnose Lyme disease are polymerase chain reaction (PCR), antigen detection and culture testing. They are called “direct” tests because they detect the bacteria, not just your immune response to it.
PCR multiplies a key portion of DNA from the Lyme bacteria so that it can be detected. While PCR is highly accurate when the Lyme DNA is detected, it produces many false negatives. This is because the Lyme bacteria are sparse and may not be in the sample tested.
Antigen detection tests look for a unique Lyme protein in fluid (e.g. blood, urine, joint fluid). Sometimes people whose indirect tests are negative are positive on this test.
Culture is the “gold standard” test for identifying bacteria. The lab takes a sample of blood or other fluid from the patient and attempts to grow Lyme spirochetes in a special medium.
Although culture tests are generally accepted as proof of infection, the CDC has advised caution on the only commercially available culture test developed by Advanced Laboratory Services. LDo recognizes that the test is new and requires further validation in other studies. However, we believe that informed patients should be able to choose the test if they prefer. Choice is particularly important given the low quality of Lyme disease tests generally.
Recommended Labs
Although the CDC recommends that patients use “FDA-approved” tests, LDo does not support this restriction because FDA approval is not required to perform clinical testing and the FDA tests currently on the market have low sensitivity. The US Centers for Medicare & Medicaid Services (CMS) requires tests without FDA approval to undergo a rigorous certification process. CMS regulates all laboratory testing (except research) performed on humans in the U.S. through the Clinical Laboratory Improvement Amendments (CLIA). CLIA certification is designed to ensure quality laboratory testing. All clinical laboratories must be properly certified to receive Medicare or Medicaid payments. CLIA covers approximately 244,000 laboratory entities.
Two highly specific bands (OspA and OspC) are not included in the CDC bands because they were used for vaccine development. Your doctor may want to know if you have antibodies directed towards those proteins. A few labs test for them.
LDo recommends that you use a CLIA-approved lab that specializes in testing for tick-borne diseases and reports all bands on the Western blot. The healthcare professional ordering the test must ask the lab to report all bands except in the case of IGeneX, which automatically reports all bands. Blots may still vary in sensitivity.
- IGeneX: 800-832-3200
- StonyBrook: 631-444-3824
- MDL: 877-269-0090
Lyme Disease Treatment
Two Standards Of Care
There is significant controversy in science, medicine, and public policy regarding Lyme disease. Two medical societies hold widely divergent views on the best approach to diagnosing and treating Lyme disease. The conflict makes it difficult for patients to be properly diagnosed and receive treatment.
One medical society, the Infectious Diseases Society of America (IDSA), regards Lyme disease as “hard to catch and easy to cure” with a short course of antibiotics. IDSA claims that spirochetal infection cannot persist in the body after a short course of antibiotics. The group also denies the existence of chronic Lyme disease.
In contrast, the International Lyme and Associated Diseases Society (ILADS), regards Lyme disease as often difficult to diagnose and treat, resulting in persistent infection in many patients. ILADS recommends individualized treatment based on the severity of symptoms, the presence of tick-borne coinfections and patient response to treatment.
LDo believes that patients and their doctors should make Lyme disease treatment decisions together. This requires that patients be given sufficient information about the risks and benefits of different treatment options. Then, patient and health care provider can collaborate to reach an informed decision, based on the patient’s circumstances, beliefs and preferences.
LDo endorses the ILADS guidelines, which allow greater exercise of clinical discretion by physicians and provide patients with more treatment options. It is the doctor’s responsibility to tell patients about the different treatment options so that patients can make an informed choice.
Early Lyme
ILADS doctors are likely to recommend more aggressive and longer antibiotic treatment for patients. They may, for instance, treat “high risk” tick bites where the tick came from an endemic area, was attached a long time, and was removed improperly. They may treat a Lyme rash for a longer period of time than the IDSA recommends, to ensure that the disease does not progress. They are unlikely to withhold treatment pending laboratory test results.
Late Or Chronic Lyme
Experts agree that the earlier you are treated the better, since early treatment is often successful. Unfortunately, a substantial portion of patients treated with short-term antibiotics continue to have significant symptoms. The quality of life of patients with chronic Lyme disease is similar to that of patients with congestive heart failure. Doctors don’t agree about the cause of these ongoing symptoms. The primary cause of this debate is flawed diagnostic testing. There is currently no test that can determine whether a patient has active infection or whether the infection has been eradicated by treatment.
The IDSA thinks Lyme disease symptoms after treatment represent a possibly autoimmune, “post-Lyme syndrome” that is not responsive to antibiotics. The IDSA essentially regards Lyme disease as an acute infection like strep throat that can be treated with a short course of antibiotics. The IDSA guidelines are now eight years old and do not reflect recent science.
ILADS physicians believe that ongoing symptoms probably reflect active infection, which should be treated until the symptoms have resolved. These physicians use treatment approaches employed for persistent infections like tuberculosis, including a combination of drugs and longer treatment durations. The ILADS guidelines have just recently been updated using a rigorous review of the medical literature.
The ideal antibiotics, route of administration and duration of treatment for persistent Lyme disease are not established. No single antibiotic or combination of antibiotics appears to be capable of completely eradicating the infection, and treatment failures or relapses are reported with all current regimens, although they are less common with early aggressive treatment.
All medical treatments have risks associated with them. While the safety profile of antibiotics is generally quite good, only the patient (in consultation with his or her physician) can determine whether the risks outweigh the potential benefits of any medical treatment.
An ILADS doctor may consider the possibility of tick-borne coinfections, particularly if a patient does not respond to treatment or relapses when treatment is terminated. Other factors to consider are immune dysfunction caused by Lyme; silent, opportunistic infections enabled by the immune dysfunction; hormonal imbalance caused by Lyme; and other complications.
Considerations While On Treatment
Antibiotics can wipe out beneficial intestinal flora, leading to a wide variety of additional health problems. It is important to take probiotics while on antibiotics to maintain a healthy balance of gut bacteria. Furthermore, antibiotics may interact with other drugs, supplements or food. The National Institutes of Health’s MedLinePlus website gives information about drug interactions.
Two Standards Of Care
There is significant controversy in science, medicine, and public policy regarding Lyme disease. Two medical societies hold widely divergent views on the best approach to diagnosing and treating Lyme disease. The conflict makes it difficult for patients to be properly diagnosed and receive treatment.
One medical society, the Infectious Diseases Society of America (IDSA), regards Lyme disease as “hard to catch and easy to cure” with a short course of antibiotics. IDSA claims that spirochetal infection cannot persist in the body after a short course of antibiotics. The group also denies the existence of chronic Lyme disease.
In contrast, the International Lyme and Associated Diseases Society (ILADS), regards Lyme disease as often difficult to diagnose and treat, resulting in persistent infection in many patients. ILADS recommends individualized treatment based on the severity of symptoms, the presence of tick-borne coinfections and patient response to treatment.
LDo believes that patients and their doctors should make Lyme disease treatment decisions together. This requires that patients be given sufficient information about the risks and benefits of different treatment options. Then, patient and health care provider can collaborate to reach an informed decision, based on the patient’s circumstances, beliefs and preferences.
LDo endorses the ILADS guidelines, which allow greater exercise of clinical discretion by physicians and provide patients with more treatment options. It is the doctor’s responsibility to tell patients about the different treatment options so that patients can make an informed choice.
Early Lyme
ILADS doctors are likely to recommend more aggressive and longer antibiotic treatment for patients. They may, for instance, treat “high risk” tick bites where the tick came from an endemic area, was attached a long time, and was removed improperly. They may treat a Lyme rash for a longer period of time than the IDSA recommends, to ensure that the disease does not progress. They are unlikely to withhold treatment pending laboratory test results.
Late Or Chronic Lyme
Experts agree that the earlier you are treated the better, since early treatment is often successful. Unfortunately, a substantial portion of patients treated with short-term antibiotics continue to have significant symptoms. The quality of life of patients with chronic Lyme disease is similar to that of patients with congestive heart failure. Doctors don’t agree about the cause of these ongoing symptoms. The primary cause of this debate is flawed diagnostic testing. There is currently no test that can determine whether a patient has active infection or whether the infection has been eradicated by treatment.
The IDSA thinks Lyme disease symptoms after treatment represent a possibly autoimmune, “post-Lyme syndrome” that is not responsive to antibiotics. The IDSA essentially regards Lyme disease as an acute infection like strep throat that can be treated with a short course of antibiotics. The IDSA guidelines are now eight years old and do not reflect recent science.
ILADS physicians believe that ongoing symptoms probably reflect active infection, which should be treated until the symptoms have resolved. These physicians use treatment approaches employed for persistent infections like tuberculosis, including a combination of drugs and longer treatment durations. The ILADS guidelines have just recently been updated using a rigorous review of the medical literature.
The ideal antibiotics, route of administration and duration of treatment for persistent Lyme disease are not established. No single antibiotic or combination of antibiotics appears to be capable of completely eradicating the infection, and treatment failures or relapses are reported with all current regimens, although they are less common with early aggressive treatment.
All medical treatments have risks associated with them. While the safety profile of antibiotics is generally quite good, only the patient (in consultation with his or her physician) can determine whether the risks outweigh the potential benefits of any medical treatment.
An ILADS doctor may consider the possibility of tick-borne coinfections, particularly if a patient does not respond to treatment or relapses when treatment is terminated. Other factors to consider are immune dysfunction caused by Lyme; silent, opportunistic infections enabled by the immune dysfunction; hormonal imbalance caused by Lyme; and other complications.
Considerations While On Treatment
Antibiotics can wipe out beneficial intestinal flora, leading to a wide variety of additional health problems. It is important to take probiotics while on antibiotics to maintain a healthy balance of gut bacteria. Furthermore, antibiotics may interact with other drugs, supplements or food. The National Institutes of Health’s MedLinePlus website gives information about drug interactions.