A Guide: The Diagnostic Dilemma of Lyme Disease

Lyme disease blood testing is fraught with problems and, at best, should only be an adjunct to the clinical diagnosis of the disease. Indeed, the Centers for Disease Control and Prevention (CDC) recommend that the diagnosis remain a clinical one, based on your symptoms and history, and that blood tests should only be used to provide supporting evidence for the diagnosis.  For this reason, it is important for you to help your doctor by being armed with as much background information as possible.

  • After a suspected tick/insect bite, if you see a rash(es), even if it is not at the site of the bite, you or your physician should take a picture of it, date it, and the doctor should place a copy of it in your medical records.

  • It is important to keep a log, timing the start of symptoms and keeping track of those that come and go over time.  Fluctuating symptoms are hallmarks of Lyme disease. The log should also contain a record of when all medications (including non-prescription) are begun, ended, or have a dosage change.

  • To get the most accurate blood testing results possible, ask your physician to use both the ELISA and Western Blot tests. (If your insurance company will only pay for one test, you should consider paying for the other test yourself.)  Remember, you have the right as a patient to request any testing you feel is necessary, and to receive copies of the results.  At times doctors will test spinal fluid for antibodies especially if there are neurological symptoms.  All of these tests, however, may give false negative results even when the patient is infected with Lyme or other tick-borne disease.

  • According to the Centers for Disease Control, “the diagnosis of Lyme disease is based primarily on clinical findings, and it is often appropriate to treat patients with early disease solely on the basis of objective signs and known exposure.” Based on this recommendation, the diagnosis of Lyme disease should not be contingent on surveillance criteria which requires a positive ELISA* followed by five positive CDC bands on a Western Blot.

  • Since results and interpretation of blood tests vary from lab to lab, ask your physician if it would be possible to send the blood to more than one lab.  The following are some of the labs with experience in Lyme disease testing:
    • IgeneX
      797 San Antonio Rd., Palo Alto CA 94303

    • Medical Diagnostic Labs
      133 Gaither Dr. Suite C, Mount Laurel, NJ

    • Stony Brook, Laboratory for the Diagnosis of Lyme Disease, University Medical Center
      State University of New York
      Stony Brook, NY 11794-7305
  • Ask your doctor to consider testing for co-infections such as Babesia, Ehrlichia,  Bartonella, and Mycoplasma, since an increasing number of ticks have been found to carry and transmit these other infectious agents, and the tests and treatments for some of these infections are different than those for Lyme disease.

  • Finally, ask for a copy of all your test results.  It is important to keep accurate records, and since different doctors may interpret the test results differently, you might find it helpful to have them in the future.

* ELISA - The screening test most frequently used when Lyme disease is first suspected. This test only measures antibodies in the blood, which can be problematic.  A two-tier testing program is most often utilized by running a first screen ELISA test and waiting for results.  If positive, physicians will then run a Western Blot confirmatory test. The results of the ELISA can be either falsely positive or negative. Results that are falsely negative may be due to factors including lack of antibody response, testing too early, being on antibiotics or antibody complexing.  Many people are never tested beyond this point and are told they do not have Lyme disease based on this one test.

* Western Blot - This also tests for antibodies and reports reactivity of 10 different protein bands of which 5 must be positive for CDC surveillance (reporting) purposes.  This is generally considered the most reliable test currently available (although it is estimated to be only 80% sensitive even at the best labs).  Many doctors will not consider using this test unless the ELISA is positive, thus missing an important diagnostic tool.

Some Lyme specialists and scientists believe that there are five very specific bands on the Western Blot test that are highly indicative of Lyme disease, numbers 23, 31, 34, 39 and 93.  If any of these bands are positive and the patient is experiencing symptoms of Lyme disease, they may feel treatment is warranted.

If you have been suffering symptoms consistent with those on the attached list, but have been told that your blood tests are negative, do not be deterred from seeking further diagnosis.  Be armed with knowledge and trust your instincts.  You may be one of the thousands who have Lyme disease but have been misdiagnosed.

Called the “New Great Imitator”, Lyme disease, because of its myriad of symptoms, can mimic hundreds of other conditions including:

Alzheimer’s Disease
Attention Deficit Disorder
Chronic Fatigue Syndrome
Systemic Lupus

Guillain-Barre Syndrome
Infectious Mononucleosis
Lou Gherig’s Disease (ALS)
Multiple Sclerosis
Parkinson’s Disease

The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Lyme Research Alliance , Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.