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Testing

Testing for TBDs can be inaccurate based on a number of factors.  Results can also be easily misinterpreted by a medical professional not trained in diagnosing and treating TBDs. Many patients ultimately diagnosed with Lyme Disease were told by a medical professional (often more than once) that they could not have Lyme Disease because "we do not have Lyme Disease in Alabama".

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There is currently NO reliable test to determine if someone has contracted Lyme disease OR if they have been cured of it

  • There are TWO standards of care.  The medical community has not yet agreed upon the best treatment for Lyme disease.  The International Lyme & Associated Diseases Society (ILADS.org) recommends individualized treatment based on patient response to treatment.  Ask your doctor about the different treatment options so you can make an informed decision.

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  • Because of the insensitivity of typical Lyme disease tests, many patients receive a negative test result, even though they are infected.  There are a number of other reasons a patient may receive a false negative test result including:

  1. Lack of time for antibodies to develop.  Blood for testing may have been drawn before the body has had time to produce antibodies (approx. 6-8 weeks), 

  2. Immune system suppression, and reduced antibodies (can be due to anti-inflammatory steroidal drugs).  A compromised immune system will prevent or reduce antibody production and thus report negative,

  3. Infection with a strain that is not covered by available tests (very likely in the South). There are 100's of strains for which there is no test available,

  4. The lab cannot detect antibodies against Borrelia burgdorferi (Bb), even though they are present (possibly due to poor technical capability of the lab),

  5. The body's production of antibodies due to current or recent antibiotic use.  Antibiotics can reduce the body's natural antibody production,

  6. Antibodies may be bound to the Bb bacteria, leaving no antibodies free for testing, 

  7. The patient may not produce the level of antibodies in the bands deemed appropriate by the CDC to be defined as a positive case of Lyme disease.

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  • Lyme disease is a clinical diagnosis based on symptoms, history, labs and examination. Opinions on how to diagnose and treat Lyme disease vary widely among physicians. Do not be afraid to get a second opinion, especially if you are symptomatic and your doctor refuses to treat.

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  • According to CDC, Lyme should be diagnosed using an antibody test. An antibody test is not testing for Lyme itself; it’s testing for the body’s immune system response to Lyme. When you first get infected, your IGM (immunoglobulin M) is the early responder. It goes up in four to six weeks. Therefore, doing a test for Lyme when you first see a bull’s-eye rash, find a tick, or think you’ve been infected is really inaccurate because it’s going to take several weeks for those antibodies to go up. The IGM stays up for four to six months. As it’s coming down, the IGG goes up. The IGG can stay up for a year, sometime two years. Then, it starts to go down as well. Using a test that only looks at immunoglobulin IGG and IGM is going to miss a lot of people who were either tested too early or too late.

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  • Due to difficulty in culturing the actual bacteria, Lyme Disease tests rely upon an antibody response. Because of the proven unreliability of testing, most Lyme Literate Medical Doctors recommend that (contrary to CDC guidelines) patients skip the initial ELISA screen, and invest in the Western Blot.

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  • Many Lyme specialists believe that a single Lyme-specific band, along with clinical presentation (rash and symptoms), is sufficient to diagnose Lyme Disease (with a 3% +/- false positive rate).  In China, a single positive IgG band coupled with a single IgM band is considered to be a positive Western Blot. 

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  • The following bands: 18 (most sources), 22-25, 28, 30, 31, 34, 35, 37, 39, 58 (some sources), 66 (some sources), 83 and 93 are generally considered to be “significant” or Lyme-specific.

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  • Johns Hopkins’ researchers found that 39% of patients with physician diagnosed erythema migrans rashes (aka bullseye rash), which alone is diagnostic for Lyme Disease,  got a false negative on a Western Blot.  More telling the majority of seropositive individuals had a negative IgG western blot, demonstrating that IgG seroconversion on western blot was very infrequent.

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  • Unfortunately, many people are led to believe that they are “negative” for Lyme Disease based upon faulty tests.  In Virginia, recently passed legislation requires health care providers to notify those tested for Lyme Disease that current laboratory testing can often produce false negative results. 

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  • A MORE ACCURATE TESTING NEEDS TO BE DEVELOPED AND RECOMMENDED BY THE Centers for Disease Control (CDC). The two-tier testing recommended by the CDC for Lyme disease testing generates 500 TIMES more false negative reporting than does two-stage HIV testing.  Read the study abstract here>

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