DIAGNOSIS/TREATMENT
Lyme is a difficult disease to diagnose. Patients who are eventually diagnosed with Lyme Disease describe having been misdiagnosed with the following: fibromyalgia, chronic fatigue syndrome, lupus, rheumatoid arthritis, Sjogrens syndrome, depression, personality disorder, ALS, Parkinson’s Disease, MS, IBS, GERD, TMJ, ADHD, anxiety disorder, etc.
There are no definitive tests for Lyme disease. Existing tests, based on detecting antibodies to the disease, are known to show false positives and false negatives. For reporting purposes only, the CDC requires a positive ELISA test, to be confirmed by a positive Western Blot, but this procedure can miss as many as 44% of cases. Not every person makes sufficient antibodies to Lyme to show up in these tests, especially if they have been infected by more than one disease by the same tick.
Other circumstances can contribute to false negatives. Typically, it takes 6 weeks to develop antibodies to Lyme, so a test taken before 6 weeks is likely to be negative. If a patient waits 6 weeks before consulting a doctor, however, the disease will have the chance to spread throughout the body, making a cure more difficult. If a patient has taken antibiotics, this will also delay the production of antibodies to Lyme.
There are differing figures on how many patients get a rash, ranging from 40 to 75%. A bull’s eye rash is proof positive of Lyme, but rashes do not always form a clear bull’s eye.
IGeneX, Inc. offers a Western Blot test that is more sensitive than the Western Blot tests from either LabCorp or Quest. Greater sensitivity means it is more likely to detect other strains of Bb. A positive result to this test may not be acceptable to the CDC as a reportable case; however, it should confirm a clinical diagnosis of Lyme. You can obtain a test kit directly from their website www.igenex.com, but a doctor will have to submit it with your sample to the lab. If you cannot find a physician to do this for you, try searching at AnyLabTestNow.com.
The following tests are relatively new and should be considered to confirm a case of Lyme disease:
PCR (Polymerase Chain Reaction): A new test for Lyme disease, developed at Milford Hospital (CT) became available in 2010. It looks for Borrelia burgdorferi DNA in the blood before it can hide in the joints, brain, heart, etc. This test was designed for use only at the onset of symptoms, since the bacteria must still be circulating in the blood. A positive test establishes the infection beyond question, but a negative result does not prove the absence of Bb in the patient. PCR may also be used to detect active infection in patients with symptoms, but is more likely to be successful before patients have been treated with antibiotics. IGeneX Labs has PCR tests that can be performed on whole blood, serum, urine, CSF, or miscellaneous fluids/tissues. These are expensive tests, not always covered by insurance, but they may provide the confirmation certain patients need.
CULTURE TEST: Advanced Laboratory Services, Inc. (ALSI) announced a new culture test for Lyme in 2011, developed by Dr. Eva Sapi and colleagues and partially funded by lymedisease.org. Direct detection of bacteria through culture is considered the gold standard for diagnosis, but Bb is notoriously difficult to culture. This test has provided a rapid and reliable way to culture Bb from human blood and tissue samples. It detects all strains of Bb sensu lato, and culture positivity fulfills strict CDC reporting standards. Although this test is commercially available in Texas, it is still expensive and not always covered by insurance.
CD57 TEST: In 2001, Drs. R.B. Stricker and E.E. Winger published research showing that Lyme patients with active symptoms had significantly decreased lymphocyte counts in the CD57 subset. This was the first lab test that indicated an active Lyme disease infection. This is an inexpensive test, a simple blood test for lymphocytes. Unfortunately, many labs do not list it among their available tests, so patients are often told the test is not available, even if their doctor orders it. If this happens, inform your doctor immediately, so he/she can help you find a lab that will take it.
Ticks transmitting Lyme can be as small as a poppy seed and their bite is painless. Many patients are not aware that they have bitten.
For these reasons, a diagnosis of Lyme must be made on a clinical basis. This means that a doctor must look at a combination of factors, including possible exposure to a tick, symptoms that affect multiple systems in the body, and family members with Lyme. Unfortunately for Texans, there are very few doctors in our state with the experience necessary to make a Lyme diagnosis. Physicians have been known to diagnose incorrectly, even when an EM(erythema migrans) or characteristic bull’s eye rash rash was present or a tick was still attached to the patient. If you do have an EM rash or have detached a tick, however, see your local physician immediately. If you see a rash, take a picture of it in case it disappears before your doctor can see it. Place a ruler next to the rash so the doctor can see its size. If you find a tick on you, it would be prudent to send it for testing. See our page on Test a Tick for instructions.
Whatever you do, the longer you wait before receiving a diagnosis of Lyme and starting treatment, the worse your symptoms will be and the longer you will have to be treated before a cure.
Treatment
Treatment options depend upon the stage of the disease and severity of symptoms, and must be tailored to the individual needs of each patient. Chronic, or late stage, Lyme may be treated with combinations of oral, injected, and/or intravenous antibiotics, and treatment often requires rotations of combinations of various classes of antibiotics over an extended period of time to suppress the infection. While there are treatment successes, failures do occur, and much more research is needed to understand and eradicate the extremely complex bacteria that cause Lyme and related diseases. The International Lyme and Associated Diseases Society has put together a comprehensive guideline for the treatment and management of Lyme disease. Download the ILADS Guidelines.
