This is the first of a three-part series on controversies over diagnosing and treating Lyme disease. This week will focus on diagnosis:
By Megan S. Smith
Special to the Rappahannock News
The confusion and controversies swarming around tick-borne Lyme disease – now on the rise in the U.S. – can be summed up in a U.S. Naval adage: “Those fore go aft, those aft go fore, and those in the middle mill around.”
The patient in pain, the doctor in white, the government’s Centers on Disease Control and Prevention, the omnipotent insurance and pharmaceutical companies – everyone has a dog in this fight, it seems, and the dogs, meanwhile, carry the dreaded, Lyme-infected deer tick indoors.
Many of the controversies over the clever, spiral-shaped bacterium Borrelia burgdorferi are all encompassing, and most are covered in the documentary “Under Our Skin,” being screened for free at 8 p.m. Saturday at the Theatre at Washington.
The questions and confusion span the gamut of diagnosis, testing and treatment – and can force a Lyme patient, who simply wants correct diagnosis and quick treatment, to oftentimes endure severe suffering while the medical community remains largely divided over empirical answers.
There is “big controversy [over] Lyme,” stated Dr. Tom Connally, retired Sibley Hospital internist speaking at the April 15 Lyme Forum in Washington, Va. One problem, he said, is a doctor’s desire for hard evidence versus relying solely on patient complaints.
Diagnosis is difficult unless the patient arrives at a doctor’s office with one or both “objective” diagnostic tools: the tell-tale bull’s eye Lyme rash or a body having produced enough antibodies that a forthcoming Lyme test proves positive. This “early-phase Lyme” patient should feel lucky in that, treated with antibiotics for the appropriate amount of time (at least 21 days per Connally), this patient stands an excellent chance of full recovery.
Unfortunately, there is an abundancy of misdiagnosed, untreated patients who fall through the cracks into the labyrinth of the Lyme controversy, partially due to only 35-60% of patients having the rash, according to the International Lyme and Associated Diseases Society’s website. Further, the U.S. Centers for Disease Control and Prevention allows doctors to consider patients’ symptoms as a diagnostic tool, but only if accompanied by the rash. Undiagnosed patients, after approximately three months of no treatment, enter the “late or chronic Lyme phase” which becomes very difficult to treat – if treatable at all.
According to ILADS, Lyme is referred to as “the ‘great imitator’ because it mimics other conditions, often causing patients to suffer a complicated maze of doctors in search of appropriate treatment.” Some symptoms include: Recurring fever, arthritis, fatigue, flu-like muscle pain, dizziness, dementia, depression, walking and sight difficulties, bladder, heart and neurological problems (such as Bell’s palsy).
Many of these symptoms are non-confirmable through tests or clinical observation and are therefore considered “subjective,” leaving it up to the individual doctor to consider them – or not – for a positive Lyme diagnosis.
The controversy over Lyme testing will be examined in the next part of this series.