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How Do You Test For Chronic Lyme Disease

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What Happens At Your Appointment

Understanding the Persistent Symptoms in Lyme Disease | Johns Hopkins Medicine

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.

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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. If you had 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. If you had a lumbar puncture, you may have pain or tenderness in your back where the needle was inserted. You may also get a headache after the procedure.

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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Testing For Lyme Disease In Dogs

Lyme disease spread by ticks can be diagnosed with a simple blood tests in your veterinarians clinic. The C6 test is very sensitive and specific at diagnosing cases of Lyme disease and depending on clinical signs and concurrent results, treatment may be started immediately. If treatment has been successful, reductions in the QC6 at six months should be lower than the starting point.

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How Long Do Lyme Disease Flare Ups Last

Choosing A Lyme Disease Test

These symptoms can include fatigue, joint or muscle aches, and cognitive dysfunction. They may last up to six months or longer. These symptoms can interfere with a persons normal activities and may cause emotional distress as a result. However, most peoples symptoms improve after six months to a year.

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Hallmark Signs And Symptoms Of Infection

Chronic infection with any stealth microbe is associated with nonspecific symptoms . Even the symptoms that are considered classic for a particular microbe do not always occur. There are numerous species and strains of all of the different microbes, each of which have slightly different characteristics. If a classic symptom is present, however, it may help with diagnosis and treatment.

Current Research On New Approaches

NIAID actively supports research on Lyme disease diagnostics. Small businesses and public/private partnerships often submit applications for new research projects. NIAID grantees also work directly with CDC scientists to evaluate and compare the effectiveness of currently used diagnostic methods.

Working with CDC, NIAID plays a major role in encouraging the development of new approaches to improve Lyme disease diagnosis in people with tick-borne co-infections such as anaplasmosis or babesiosis. New diagnostic tests are also needed to distinguish between people with B. burgdorferi infection and those whose immune responses stemming solely from past Lyme disease vaccination. Although Lyme disease vaccines for humans are no longer available in the United States, the discontinued LYMErix vaccine used between 1998 and 2002 was based on a specific part of B. burgdorferi called outer surface protein A . In response to the vaccines, immunized individuals developed antibodies for OspA. Because the conventional ELISA measures OspA antibodies to determine if someone has Lyme disease, the test does not provide accurate results for immunized individuals. People who received the vaccination will test positive whether or not they are actually infected with B. burgdorferi.

NIAID is supporting research on a variety of approaches to improve the diagnosis of Lyme disease:

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Theres No Lyme Disease Vaccine

There was a simple, safe, effective vaccine for Lyme disease about 20 years ago. Dr. Sam Telford, Director of the New England Regional Biosafety Laboratory at Tufts University, helped develop it in the early 1990s. Sadly, he says, it now sits on a shelf.

Telford and his team came up with a unique method where the vaccinated animals blood came into the tick and killed the bacteria before they had a chance to get into the body. SmithKline Beecham company, now GlaxoSmithKline, optioned the vaccine and tested it in three-phase clinical trials with 8,000 subjects, finding it safe and 60%70% effective in preventing illness. The FDA approved it for sale in 1998, but the company withdrew it in 2002 because of lawsuits.

Lyme disease activists said, Oh, well this vaccine gave us Lyme disease, or it gave us arthritis, Telford said. They instituted a class action lawsuit against SmithKline to the tune of $1 billion.

The CDC said there was no medical basis for the lawsuit, and it was thrown out of court. Still, the company got cold feet. They withdrew the vaccine from the market, and its been sitting in their freezer ever since.

In the meantime, a veterinary vaccine maker known as Meriel packaged the vaccine for use in dogs. Its essentially the same one that went through human clinical trials, says Telford. So we can vaccinate dogs against Lyme with a vaccine that is safe and effective, but we cant do it for humans.

Access To Lyme Disease Testing Services

Do you know the signs of Lyme disease?

This guidance on the laboratory diagnosis of Lyme disease is intended for healthcare professionals in the UK. Patients concerned about possible Lyme infection should consult an appropriate healthcare professional, for example their GP, in the first instance.

Health professionals wishing to discuss a possible case or ascertain local arrangements for testing should contact a local Infection specialist .

NHS testing for Lyme disease is available through local service providers and the Rare and Imported Pathogens Laboratory at UK Health Security Agency Porton where ISO15189 accredited confirmatory testing is also provided. RIPL also provides a testing service for neurological Lyme disease.

RIPL provides medical and laboratory specialist services to the NHS and other healthcare providers, covering advice and diagnosis of a wide range of unusual bacterial and viral infections, including Lyme disease.

RIPL continuously updates its methods and will make further information on Lyme disease diagnostic testing available as it arises.

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Pcr For B Burgdorferi

Short for Polymerase Chain Reaction, a PCR tests directly for borrelia DNA in the hosts blood, tissues, or urine. Historically, PCR has had limited accuracy, but improvements in technique are allowing PCR for microbial DNA to be the future of testing. At some point, it may be possible to define a persons entire microbiome.

For now, testing is available for the most common species of borrelia and many common species of coinfections with other stealth microbes. Testing is most accurate during acute infection, and much less accurate during chronic infection.

Again, the bottom line is that if you have many or most symptoms of chronic Lyme disease, then you are likely harboring at least one species of borrelia and several other species of stealth microbes no matter what the testing shows.

Many companies are offering microbial DNA testing, but a few are taking the lead. DNA Connexions tests DNA in either blood or urine specimens for three species of borrelia and several of the most common coinfections. Testing kits are available online.

Other Diagnostic Tests For Lyme Disease

Some laboratories offer Lyme disease testing using urine or other body fluids. These tests are not approved by FDA because they have not been proven to be accurate. For example, one study of urine-based polymerase chain reaction assays for Lyme disease diagnosis showed that with currently available tools, urine cannot be used to accurately diagnose Lyme disease. Another study by NIAID-supported scientists showed that the Lyme Urinary Antigen Test was unreliable and resulted in excessive numbers of false positives. In the same study, researchers confirmed that an ELISA followed by a Western blot test was nearly 100 percent reliable in diagnosing Lyme disease. With the availability of so many Lyme disease tests, including non-commercial tests developed by individual facilities, it is impossible to address the accuracy of each one. The development of new, rapid, clearly validated diagnostic tests continues to be a need.

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Lyme Disease Laboratory Tests Available At Ripl

The primary service provided by RIPL is serological testing using well-characterised and validated screening and confirmatory tests in accordance with the NICE Lyme disease guideline.

RIPL participates in regular external quality assurance exercises as an independent measure of its performance.

Details of prices and turnaround times for Lyme testing are provided in Appendix 1 of the RIPL user manual.

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Limitations Of Lyme Disease Testing

Chronic Lyme Disease: Symptoms, Causes and CoInfections

Unfortunately, the two-tier testing for Lyme disease recommended by the CDC misses approximately one-half of actual cases pursuant to numerous peer reviewed studies. States like Maryland and Virginia have enacted laws requiring laboratories or doctors to explicitly inform you that you may still have the infection, even if you test negative for Lyme disease.

Simply put, you cant rule out Lyme with existing laboratory tests. Based on the limits of two-tiered serological testing, a clinical diagnosis is often necessary.

If initial Lyme disease tests dont show evidence of exposure to Borrelia burgdorferi, consider the following options:

  • Use more sensitive interpretive criteria as detailed below
  • Use more sensitive Lyme disease tests that cover divergent Borrelia strains, which may or may not be covered by insurance
  • Start an antibiotic trial to gauge your response
  • Consider the possibility of coinfections with many overlapping symptoms to Lyme disease.
  • Alternative Western Blot Alternative Criteria

    Western Blot test results will include both IgG and IgM assays. Carefully consider Lyme-specific bands . Many Lyme specialists believe a single Lyme-specific band, along with a patients clinical presentation, is sufficient to diagnose Lyme disease. Likewise, in China, a single positive IgG band coupled with a single IgM band is considered to be a positive Western Blot when the patient also has symptoms of Lyme.

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    Dos And Donts Of Getting Help

    If you think you may have this syndrome, experts suggest these tips:

    Donât assume. Tell your doctor your symptoms, and let her check you.

    Donât rush to a specialist. For an accurate diagnosis, start with a primary care doctor, says Eugene Shapiro, MD. He’s a professor of pediatrics, epidemiology, and investigative medicine at Yale School of Public Health.

    Do take your antibiotic as prescribed. Even if you feel better, continue the course. Itâs 4 weeks of medications at most. Some experts believe stopping the drugs before your prescription ends may cause symptoms to linger.

    Do find experts who can help your symptoms. Ask your doctor if it would be worth your while to visit naturopaths, traditional Chinese medicine doctors, psychologists, or other experts. Many medical centers have complementary and alternative medicine experts on site.

    Diagnosis Testing And Treatment

    You may have heard that the blood test for Lyme disease is correctly positive only 65% of the time or less. This is misleading information. As with serologic tests for other infectious diseases, the accuracy of the test depends upon how long youve been infected. During the first few weeks of infection, such as when a patient has an erythema migrans rash, the test is expected to be negative.

    Several weeks after infection, FDA cleared tests have very good sensitivity.

    It is possible for someone who was infected with Lyme disease to test negative because:

  • Some people who receive antibiotics early in disease may not have a fully developed antibody response or may only develop an antibody response at levels too low to be detected by the test.
  • Antibodies against Lyme disease bacteria usually take a few weeks to develop, so tests performed before this time may be negative even if the person is infected. In this case, if the person is retested a few weeks later, they should have a positive test if they have Lyme disease. It is not until 4 to 6 weeks have passed that the test is likely to be positive. This does not mean that the test is bad, only that it needs to be used correctly.
  • If you are pregnant and suspect you have contracted Lyme disease, contact your physician immediately.

    * Silver HM. Lyme disease during pregnancy. Infect Dis Clin North Am. 1997 Mar 11:93-7.

    The most common co-infections that occur with Lyme disease are anaplasmosis and babesiosis. In general:

    References:

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    The Western Blot Test

    Currently, the standard and arguably the best test for chronic Lyme disease is called a Western Blot, which is not available in Canada.

    The Western Blot tests for specific antibodies to Borrelia. In this test, you are looking at different bands which highlight how various antibodies react to different parts of the bacteria. For Western Blot testing, you must have a certain number of specific bands present to be a positive test.

    The problem with the standard Western Blot is that it misses out some of the critical bands that would help to identify the bacteria.

    Some companies including Igenex and Medical Diagnostics in the USA have added these missing bands back into the Western Blot, and so the test is much more sensitive. On the downside, however, this has increased the rate of false positive testing a positive test for someone who does not have the microbe.

    This situation creates a considerable problem because testing is very lucrative. When have symptoms of chronic Lyme, and you go to your doctor, and the test is negative then this can be very frustrating. So, there is a massive incentive for labs to produce a positive test.

    How Much Does A Lyme Disease Test Cost

    Is There A Link Between Lyme Disease and Chronic Fatigue Syndrome?

    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.

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    Where To Get Lyme Disease Tests

    Locating a healthcare provider whos knowledgeable about Lyme disease to order the appropriate labs and test kits can be very overwhelming. You may find that you need more than one practitioner to help you. For starters, if you have a relationship with a primary care physician , even one who might not understand Lyme, they can order the routine lab tests so that youre more likely to get them reimbursed by your health insurance.

    The specialized test kits, such as coinfection panels, mycotoxin tests, or food sensitivities, will often be ordered by a Lyme-literate medical doctor or a functional medicine doctor who has some familiarity with Lyme. Ultimately, youll want to find a doctor you can trust, so they can identify the cause of your symptoms and how to help you on the road to recovery.

    Dr. Rawls understanding of the treatment of Lyme disease, coinfections, and the value of diagnostic testing comes from his medical expertise as a doctor, as well as his personal experience as a Lyme sufferer. To learn more about Dr. Rawls, read his post about his chronic Lyme disease journey and his book Unlocking Lyme.

    Dr. Rawls is a physician who overcame Lyme disease through natural herbal therapy. You can learn more about Lyme disease in Dr. Rawls new best selling book, Unlocking Lyme. You can also learn about Dr. Rawls personal journey in overcoming Lyme disease and fibromyalgia in his popular blog post, My Chronic Lyme Journey.

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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.

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    Targeting Fats To Fight Lyme

    We started this current work to learn how Borrelia burgdorferi acquires key nutrients, like fats, for growth, says Gwynne. The Lyme bacteria, despite being a very successful pathogen, is much more dependent than other bacteria on acquiring nutrients from its environment.

    In the process of our research, we found that the organism takes fats called phospholipids directly from its surroundings in the host, and puts them on its surface, says Hu, the Vice Dean of Research at the school and Paul and Elaine Chervinsky Professor of Immunology. That finding led us to look to see if the direct use of a host fat by the bacteria might lead the immune system to recognize it as a foreign substance and create antibodies to it.

    What the scientists discovered is that both animals and patients infected with the Lyme bacterium developed autoantibodies to multiple phospholipids. Because autoantibodies can be damaging to the host, these autoantibodies are tightly regulated and tend to disappear quickly once the stimulating factor is removed.

    The antibodies also seem to develop much more quickly than traditional antibodies to the Lyme bacterialikely because your body has previously created these autoantibodies and downregulated them, says Hu.