An increasing number of Americans with medically ambiguous symptoms are being misdiagnosed with “chronic Lyme disease” and prescribed dangerous and often expensive treatments that do not work, according to a new report.
In some instances, patients have died after receiving intensive, long-term and inappropriate courses of intravenous antibiotics that led to septic shock. In other cases, misdiagnosis caused dangerous delays in treatment of a patient’s actual underlying condition.
These incorrect diagnoses have existed for years. But public health officials and clinicians say they are alarmed because of the increasing severity and scope of some treatments in recent years, said Christina Nelson, a medical epidemiologist and author of a report released Thursday by the Centers for Disease Control and Prevention.
Many of the various treatments, including courses of intravenous antibiotics lasting months and years, have no evidence of effectiveness.
Studies have shown that prolonged courses of intravenous antibiotics can often result in serious harm, including death.
Unorthodox alternative therapies include intravenous infusions of hydrogen peroxide, electromagnetic frequency treatments, garlic supplements, even stem cell transplants.
Chronic Lyme disease is a diagnosis that some health-care providers use to describe patients with a variety of symptoms such as fatigue, generalized pain, and neurological symptoms.
Many of these patients have experienced significant debilitation from their symptoms and failed to find relief after seeing conventional medical practitioners.
As a result, some turn to alternative medicine clinics or practitioners who sometimes identify themselves as Lyme disease specialists, or “Lyme literate” doctors, who may subject patients to a host of unproven treatments, the report said.
Typical symptoms of true Lyme disease include fever, headache, fatigue and a skin rash that may have a characteristic bull’s eye shape.
If left untreated, infection can spread to joints, the heart and nervous system. The recommended treatment is generally a two-to-four-week course of antibiotics.
The CDC estimates about 300,000 people are diagnosed with Lyme each year, and the numbers have been on the rise.
One woman in her 50s with progressive weakness, swelling and tingling in her extremities was eventually diagnosed with amyotrophic lateral sclerosis, or ALS. She sought a second evaluation and was told she had chronic Lyme disease.
She received seven months of intensive antimicrobial treatment — including drugs that were antifungal agents not recommended for treating Lyme disease — but her weakness worsened. She developed an intractable C. difficile infection, with severe abdominal cramps and diarrhea that persisted for more than two years.
The woman eventually died from complications related to ALS, said Nelson, who had spoken with the patient
The CDC is trying to raise awareness about the dangers of misdiagnosis and unproven treatments.
The report focuses on the serious bacterial infections associated with prolonged antibiotic treatment. While antibiotics are effective for many conditions, unnecessary antibiotics provide no benefit and actually put patients at risk for serious harm, especially if used for extended periods. The drugs kill beneficial bacteria and allow drug-resistant ones to dominate, and intravenous treatments can introduce new infections.
Neither the CDC or the National Institutes of Health recommends using the diagnosis “chronic Lyme disease,” for several reasons, Nelson said. The diagnosis is often based on clinical judgment, with no objective evidence of Lyme disease, such as standard laboratory testing for Lyme bacteria or even a history of possible tick exposure in an area with endemic Lyme disease.
Clinicians who call themselves “Lyme literate” are often self-annointed; there is no special training program and no requirement to be board certified in infectious disease, Nelson said.