Dell Harrington, 59, of Larchmont, N.Y., considers herself
lucky. In 2009, she caught Lyme disease from a tick bite but
recovered after taking antibiotics.
never saw the bite or the (hallmark) Lyme bullís-eye
rash," said Harrington. But her doctor recognized her
fatigue, nausea and fever as common symptoms.
everyone is as fortunate. Some Lyme victims are diagnosed
late. Others are misdiagnosed.
the U.S. Centers for Disease Control and Prevention said
30,000 Americans get Lyme each year. In 2013, it moved the
comma to 300,000. Oops. Many doctors want the comma moved
see new Lyme patients ever day. Multiply that by the number of
doctors," said Dr. Richard Horowitz, Hyde Park, N.Y.,
internist and author of "Why Canít I Get Better?
Solving the Mystery of Lyme and Chronic Disease."
for a Connecticut burg where cases were identified in the
1970s, Lyme is caused by a bacterium that sounds like
something your Italian grandmother makes for Sunday dinner:
Borrelia burgdorferi. The name lauds the scientist who
identified it, Willy Burgdorfer.
vector (carrier), the deer tick, bites a Lyme host, usually a
rodent. Then the tick bites a human and passes on Lyme.
spreads from concentrated areas on the East Coast, it has
become a political debate between the ISDAs and the ILADSs.
IDSAs use the Infectious Diseases Society of America
guidelines, which say Lyme is not chronic.
(Lyme patients) respond to antibiotics and get better,"
said Dr. Marc Tack, IDSA member and infectious-diseases
director at HealthAlliance of the Hudson Valley in Kingston,
N.Y. "Chronic symptoms like joint pain or fatigue can
mean a lot of things other than Lyme ó arthritis, MS,
mononucleosis; the list goes on."
agrees. Some Lyme patients "may have suffered long-term
damage to the nervous system or joints," says its
website. They have "post-Lyme disease syndrome," not
"chronic Lyme disease."
ILADSs (International Lyme and Associated Diseases Society),
on the other hand, say chronic Lyme is real and its victims
need "Lyme-lit(erate)" doctors who employ long-term
these docs are an army of patient-advocacy groups,
patients-turned-spokespeople like Katina Makris of
Peterborough, N.H., the "Under Our Skin" documentary
and celebrities who recount their Lyme battles. "Lyme is
real," singer Avril Lavigne told "Good Morning
America," but her treatment followed months of doctors
telling her she was "crazy."
the polarization, though, the two camps agree on these points:
We canít view Lyme in isolation because Lyme-carrying ticks
are cesspools of other bacteria that cause
"co-infections." We need better diagnostic tools and
treatment for the whole cesspool. Research is underway but
is where AIDS was in the í80s when people were too busy
blaming the victims," said Holly Ahern, microbiology
professor at SUNY Adirondack in Queensbury, N.Y., and vice
president of LymeActionNetwork.org . "AIDS moved on, and
Lyme needs to move on from the political arguments."
Lyme is not easy. You may get a rash, headache or fever. But
if you arenít treated soon after your tick bite, all hell
breaks lose. Chronic Lyme symptoms vary from "Lyme
(brain) fog" to facial paralysis and may be intermittent.
mimics diseases including rheumatoid arthritis, chronic
fatigue syndrome, fibromyalgia, Alzheimerís," Horowitz
said. In his book, he offers a diagnostic map to rule them
tests are the enzyme-linked immunosorbent assay (ELISA) and
the Western blot. They detect antibodies (the bodyís disease
fighters), not Borrelia, and not until a few weeks after your
tick bite. If your test is negative, your insurance may deny
treatment, so your wallet hurts, too.
tests often contradict each other, explained Lyme victim Dr.
Neil Spector of Chapel Hill, N.C., in his memoir, "Gone
in a Heartbeat." "My ELISA was positive, but my
Western blot was negative," he said. The lab that issued
his "negative" Lyme diagnosis didnít consider his
symptoms, he said, which included years of heart arrhythmias.
have Lyme, you can test positive for years because your body
has antibodies, just as you have measles antibodies decades
after you gave measles to your sister.
antibodies tests are wrong so often, "you might as well
flip a coin," said Dr. John Aucott, who is developing a
Borrelia test at the new Lyme Disease Clinical Research Center
at Johns Hopkins University School of Medicineís
obstacle is the amount of blood needed to find Borrelia, said
Dave Ecker, vice president of research and development for
Abbottís Ibis Biosciences, based in Carlsbad, Calif.
"It likes to hang out in tissue, not blood." So Ibis
is using a spectrometer to find it in as little as a
tablespoon of blood. The next step is to do clinical trials.
Research Institute in Phoenix is using "next generation
sequencing" to identify Borrelia through DNA. "Itís
the same technology used by 23andme.com to find your family
history, but weíre looking at Borrelia," said Paul Keim,
director of pathogen genomics. Next, TGen will determine the
best test specimen to use: blood, tissue or urine.
current Lyme treatment is a round of common antibiotics. For
chronic Lyme disease, doctors prescribe long-term doses.
by Kim Lewis, at Northeastern University in Boston, show that
some Borrelia form persister (dormant) cells evade
antibiotics, so the best way to attack them is pulsing (on and
off) instead of continuous use of antibiotics. "The trick
is to give the dormant cells time to wake up," said
Lewis. Now that the idea has been proved in animal labs, the
next step is to do human trials.
at Stanford School of Medicine in Palo Alto, Calif., are
taking another approach. After testing 2,000 existing,
FDA-approved drugs in silico (by computer), they found
loratadine (brand name: Claritin) and desloratadine (Clarinex)
starve Borrelia of manganese, which it needs to thrive. The
next step is to do clinical trials.
want to kill Borrelia before it reaches humans," said
Mason Kauffman, CEO of Memphis-based US Biologic. In field
trials, its rodent bait reduced Lyme-carrying ticks by 76
percent. After rodents eat the bait, their bodies create Lyme
antibodies. When ticks bite these host rodents, the antibodies
kill Borrelia in the tick. The company has applied for a U.S.
Department of Agriculture license.
Lyme defense is prevention. Use insect repellent. Take a
shower after being outside. Tick-check your family and pets
daily. Remove ticks carefully, so you donít behead them, and
then swab the bite with rubbing alcohol.
management company can treat your property for tick larvae and
nymphs, said Jim Fredericks, chief entomologist at the
National Pest Management Association. "Ticks hate
well-groomed lawns but love woods and weeds," he said.
"So create a buffer on the perimeter with mulch or
your own advocate," urged Marissa Dursin, 27, of New
York, whose Lyme disease reduced her from "a very active
person to someone who couldnít string a sentence
together." Beware the doctor who says, "We donít
see Lyme in this state" because he or she hasnít read
recent CDC maps.
the suffering caused by Lyme, increased public awareness and
legislation like the Tick-borne Disease Research Transparency
& Accountability Act of 2014 will help scientists get
tests and treatments to the market, said the experts.
almost there," said an enthusiastic Kauffman. "Every
day, I canít wait to get to work."