Melissa Kaplan's
Lyme Disease
Part of the Anapsid.org Chronic Neuroimmune Diseases Information Resources for CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated January 1, 2014

The hearing, which I observed, was useful in a number of ways. First, it is important for patients and the medical profession to understand that the diagnosis and treatment of tick-borne diseases, including Lyme disease, is not always easy. Tests for Lyme disease perform poorly. A 2005 study from Johns Hopkins found "no single test, including culture from plasma or skin, achieves a high rate of diagnostic sensitivity." The researchers went on to combine various tests to see how much that could improve accuracy. Even then, the combination for a "relatively rapid alternative" still missed 25 percent of acute cases.

Second, the diagnosis of all tick-borne infections must be clinical, especially in the acute phase when delay can lead to death or permanent impairment. Even though the CDC stresses this for tick-borne infections, including Lyme disease, medical providers can forget it, to the detriment of their patients. Laboratory tests are supportive but cannot be relied upon for diagnosis. Co-infections such as babesiosis and bartonella are common, and tests for them perform poorly as well.

Third, many people with acute Lyme disease either do not develop the classic rash, erythema migrans, or do not notice it. The term "bull's eye" is a misnomer since many of the rashes are solid red. Persons with tick exposure and symptoms suggestive of Lyme disease and no history of a rash cannot be assumed not to have Lyme disease.

Fourth, because treatment of Lyme disease is controversial and two standards of care exist, patients should sign a detailed informed consent form. One standard is from the Infectious Disease Society of America, the other from the International Lyme and Associated Diseases Society. All physicians who treat Lyme disease, regardless of their approach, should present the two standards of care to patients so they can be fully informed.

Fifth, late-stage Lyme disease, like its cousin syphilis, cannot always be treated successfully, because the disease is too entrenched, because necessary drugs have not yet been discovered or because not enough is known about treatment. These patients may become disgruntled. Unhappy and even harmed patients occur in many areas of medicine, even when physicians are doing their best. This is tragic and needs to be recognized by patients and be part of the informed consent process.

Sixth, we learned that tick-borne infections, including Lyme disease, are a considerable problem in this state. The public health system needs to do more.

Lyme disease in particular is controversial, in part due to the lack of reliable tests not only for diagnosis but to tell if the patient has been cured. Initial signs of infection often go away for a while, just as with syphilis, and then return in the often debilitating form of chronic Lyme disease. Both are caused by a spirochete, a corkscrew-shaped bacteria that screws its way into muscles, organs, connective tissues and the nervous system. It can cause damage over a lifetime that usually involves the brain if not promptly treated.

Controversy surrounded the manifestations and treatment of syphilis in the early days. As with that disease 80 or so years ago and HIV/AIDS 30 years ago, I believe we are in the early days of recognizing the full extent of the harm caused by the Lyme disease spirochete, Borrelia burgdorferi, or of knowing how to diagnose and treat it.

Meanwhile, doctors like Jemsek do what they can to help desperately ill patients who have been misdiagnosed or abandoned. Other doctors disagree with his diagnoses and treatments and may tell these patients, often in great pain and with migrating debilitating symptoms, that they have conditions such as auto-immune disorders, fibromyalgia or mental illness. No doubt this is true for some. Or, as one of the state's witnesses said, their doctors may tell them that they can't do anything for them. Those with likely tick-borne infections need treatment nonetheless.

Time will tell which approach is correct and does the greatest good for the affected people. Perhaps a new approach is needed. In the meantime, the public, and medical professionals especially, need to keep an open mind and recognize that we are in the early stages of understanding Lyme disease, co-infections and other emerging tick-borne infections.

Marcia E. Herman-Giddens holds a doctoral degree in pharmacy. She is an adjunct professor at the UNC School of Public Health and president of the Tick-borne Infections Council of N.C

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