summers ago, Carole Flaherty was training for a long-distance
hike across the Teton Range of the Rocky Mountains. The
retired landscape contractor from Healdsburg, Calif., was
routinely walking 25 miles a day — until strange pains
stopped her in her tracks.
abdominal aches and a burning sensation on her right side left
her bedridden on and off for months. After a battery of blood
tests and misdiagnoses, she’s now in treatment for Lyme
68, never noticed a tick bite but suspects she was bitten in
one of the open space preserves in the hills above Palo Alto,
Calif.,where she often visited her mother.
is hardly unusual. In the West, where Lyme disease is less
common than in the Northeast and the Midwest, primary care
doctors and most residents may not even be aware that the
disease exists in their area. And the lack of awareness can
delay diagnosis — a serious danger.
short course of antibiotics cures most patients at early
stages, later on the disease becomes far more difficult to
identify and treat and can lead to chronic fatigue, muscle and
joint pain, and neurological problems.
complexity of Lyme disease diagnosis, along with strict
federal reporting guidelines, makes under-reporting of the
disease inevitable. In August 2013, the federal Centers for
Disease Control and Prevention announced that the centers’
own estimates, based on surveys of the public, medical claims
and laboratory test results, suggest that only 1 in 10 cases
of Lyme disease is reported nationwide — 30,000 reported
cases compared with 300,000 actual cases.
any disease with more of a clinical diagnosis, the reporting
is not going to be as good as a disease for which there’s a
single laboratory test," such as HIV or measles, said
George Rutherford, an epidemiologist at UC San Francisco.
the most recent year for which data are available, there were
66 confirmed cases of Lyme disease in California. And in some
parts of Northern California, especially in coastal redwood
forests, the prevalence of Lyme disease is higher than the
disease is caused by spiral-shaped bacteria called Borrelia
burgdorferi and is transmitted to humans by ticks — on the
West Coast, the Western black-legged tick. Nymphal ticks, more
likely to be infected than adults, are active from March to
August in Northern California. Infected ticks have been found
in 42 of the state’s 58 counties.
nymphal ticks are about the size of a poppy seed, tick bites
often go unnoticed. Most people develop a characteristic bull’s-eye
rash within a week or two of infection, but a substantial
proportion do not. Other signs of Lyme disease may not appear
until later; the most common are flu-like symptoms such as
fever, fatigue and muscle aches.
tests for Lyme disease are designed to detect whether a
patient’s blood contains antibodies against Borrelia
burgdorferi. Yet immune responses vary among patients, and the
presence of antibodies doesn’t necessarily indicate an
Mead, chief of epidemiology and surveillance for the CDC’s
Lyme disease program, said under-reporting occurs simply
because some people never seek medical care, and many
physicians do not report cases. The CDC’s under-reporting
studies serve as confirmation of recent increases in reported
cases, Mead said. Public health officials in Marin, Santa
Cruz, Alameda and Mendocino counties agreed that not everyone
diagnosed with Lyme disease is counted as a confirmed case.
public health surveillance data can lead to a misconception
that Lyme is virtually nonexistent in California.
Raphael Stricker, a San Francisco physician who treats
difficult Lyme cases, thinks the reporting system does a
disservice to people who are infected with Lyme. "When
patients fail that system, they’re told, ‘There’s only
100 cases (per year in California). How could it be Lyme
disease?’" Stricker said. "And so they get misled
and they don’t get diagnosed, and they get sicker and
common ground on any aspect of Lyme disease can be difficult,
as the disease is notoriously controversial. Some physicians
adhere strictly to CDC guidelines in making diagnoses, while
others may rely on different types of lab tests or interpret
the tests more broadly. The very existence of chronic Lyme
disease is also debated, as is the treatment of chronic cases
with long-term antibiotics.
Chavez, deputy director of the Center for Infectious Diseases
at the California Department of Public Health, wrote in an
email: "The important thing to remember is that
surveillance data is still very good to look at trends over
time, populations at risk, and to guide prevention efforts.
More importantly, we need to remind people that Lyme disease
can be prevented."
may be the only area of consensus on this controversial
disease. Fortunately, in California the risk of Lyme is
concentrated in public parks and other wooded areas — unlike
the Northeast, where many infected ticks lurk in suburban
backyards. So simple preventive measures, such as using insect
repellents and wearing pants and long sleeves when hiking, can
go a long way.
the hiker from Healdsburg, says antibiotic treatments have
aided her steady recovery.
to walk six miles in a day, she once again dreams of walking
across the Tetons.
disease prevention tips
long pants and long-sleeved shirts. Light-colored clothing
makes ticks easier to spot.
insect repellents that contain 20 to 30 percent DEET.
hiking, stay in the middle of the trail. Avoid brush and
yourself and your pets for ticks after spending time outdoors.
and wash clothes as soon as possible.
find a tick, remove it carefully with fine-pointed tweezers; a
tick must be attached for at least a day to transmit Lyme
disease. Save the tick for identification.