Suffering from Long-Term
Lyme Disease
August 25, 2005
Imagine being ravaged by
headaches, flu-like symptoms, arthritic-like pain
and intense fatigue -seemingly overnight.
Longtime Easton resident, artist
Dolly Curtis, 63, said she had been "blessed"
with tip-top health before being virtually incapacitated
by an insect bite on her foot during the summer of
1991.
"At first my doctor thought
I had been bitten by a honey bee," she said.
Curtis began a rudimentary treatment using over-the-counter
pain medication. She also soaked her foot nightly
in Epsom salt baths and applied anti-inflammation
ointments regularly.
Despite the treatments, the condition
did not improve.
In fact, it worsened.
"I was at a loss at that
point," Curtis said. "I had no idea what
was wrong with me."
Then one afternoon she overheard
a man talking about similar symptoms.
"He found out that the real
reason for his problems was Lyme disease," said
Curtis. "I thought, Ah-hah!"
Curtis went back to her doctor
and told him that she believed the symptoms could
be Lyme disease-related.
"At that point, it had been
over five weeks since my initial bite," said
Curtis.
A blood test came back positive
for Lyme.
"And I've had the disease
ever since," said Curtis.
Chronic Lyme disease
Over the past few years, basic information about tick-borne
diseases, specifically Lyme, has become increasingly
available to the public. While the existence of Lyme
disease is irrefutable, controversy has risen over
the validity of "Chronic" Lyme disease.
Up-to-the-minute research by
leading medical researchers, however, most notably
the International Lyme & Associated Diseases Society
(ILADS), contends that Chronic Lyme is a widespread
and often-misdiagnosed condition that is only beginning
to be legitimized by the medical community.
Part of the contentiousness surrounding
Chronic Lyme is that there are still no reliable tests,
nor any definitive cure or vaccine.
The Enzyme-linked immunosorbent
assay (ELISA) test will not indicate infection if
it's performed too early (two to six weeks) after
the tick bite).
Patients with long-term Lyme
rarely have a positive ELISA test because they have
ceased to produce the antibodies the test looks for,
according to the LDA, a national nonprofit dedicated
to providing accurate information on the illness.
"Often, doctors will not
make a Lyme diagnosis unless there is physical evidence
of symptoms, like a rash," said Curtis. "Then
they will wait for the lab tests to come back, and
it can take a while until the person actually goes
on antibiotics. However, a person should be treated
immediately if they know they have been bitten by
a tick."
However, according to ILADS,
fewer than 50 percent of Lyme sufferers recalled a
tick bite.
According to the Tolland-based
nonprofit organization, the Lyme Disease Foundation,
only 60 to 70 percent of patients notice a rash.
"One of the many difficulties
in accurately treating this disease is that there
are so many variables in symptoms, particularly when
the person begins feeling symptoms, as well as what
those particular symptoms are," explained Curtis.
Curtis called Lyme "the
great imitator" because its symptoms are so similar
to that of many other illnesses.
An unmistakable sign is the development
of a bull's-eye rash around the site of the bite.
The rash can vary in size and coloring. It may appear
a few days or even a few weeks after the bite. It
can spread to other parts of the body, or there may
be additional rashes far from the primary one.
Other symptoms appear simultaneously
with the rash (or, in many cases, without it). These
symptoms are primarily flu-like, including fever,
muscle ache, fatigue, tingling or numbness and joint
pain.
The LDA warns that while the
flu typically occurs during the winter, a summertime
bout could be highly suspect.
"You should insist on no
less than four weeks of antibiotic treatment,"
advised Curtis. "If your doctor refuses, see
another." The LDA makes clear that a person suffering
from symptoms, such as the rash and flu-like signs,
should pursue treatment even if a blood test comes
back negative.
"While there are many Lyme
symptoms that imitate other diseases, the bulls-eye
rash is a really strong indicator," said Curtis.
"Don't let a false-negative test fool you."
Curtis is skeptical about the
national Centers for Disease Control's (CDC) assertion
that the likelihood of getting Lyme is "extremely
small" if the tick is attached to the skin for
less than 24 hours.
"Just this past June, I
noticed I had a tick on my hand after gardening for
no more than two hours," said Curtis.
Within hours of the bite, Curtis
said, her hand swelled, and it was so painful that
she couldn't move it.
"It was like what happened
to me 15 years ago with my foot," said
Curtis. "Only this time it was my hand."
A steady dosage of amoxicillan,
fortunately, treated the symptoms.
ILADS is highly critical of the
CDC and other government-directed organizations. "The
CDC surveillance criteria were devised to track a
narrow band of cases for epidemiological change and
were never set up to be used as diagnostic criteria,
nor were they meant to define the entire scope of
Lyme," ILADS states, citing a National Institutes
of Health (NIH) study dated March 25, 1991.
Curtis concurs that Lyme disease
is a comprehensive, potentially
devastating illness. "It is so widespread, so
complicated," she said.
According to the LDA, there are
well over 100 different symptoms. The disease is often
mistaken for other illnesses including Fibromylagia
or Chronic Fatigue Immune Dysfunction Syndrome, Multiple
Sclerosis, Lupus, Parkinson's, Alzheimer's, Rheumatoid
Arthritis, motor neuron diseases (including ALS and
Lou Gehrig's disease) as well as psychiatric disorders,
such as depression and anxiety.
Further, ILADS states that Borrelia
burgdoferi is not the only bacterium that causes Lyme.
There are many pathogenic borrelia strains, spread
by hundreds of different kinds of species of deer
and dog ticks.
Tick-Borne illnesses
In addition, ticks can spread many diseases besides
Lyme, most commonly
Ehrlichiosis, Babesiosis, Bartonella and Rocky Mountain
spotted fever.
These illnesses carry symptoms
similar to Lyme, and is potentially life threatening
with people who have compromised immune systems.
Pregnant women also suffer dire
risks. The CDC warns that improperly treated Lyme
in pregnant women can result in them carrying the
illness to the child. Lyme in pregnant women, according
to the CDC, can also lead to stillbirth if the illness
is not vigilantly monitored and treated through antibiotics.
Prevention
According to the LDA, ticks are most plentiful in
areas where woodlands transition into fields, meadows
or yards. Ticks are most often found in tall grass.
There are various insect repellants,
such as permethrin spay, that may help. Wearing long-sleeved
shirts, long pants and a hat are helpful.
While most active in May, June
and July, ticks are still very much out and about
well into September.
If bitten by a tick, it should
be removed promptly by pulling it slowly straight
out with tweezers. Grab the tick near its head. Do
not apply rubbing alcohol, petroleum jelly or any
other substance (aggravating the tick can cause it
to regurgitate in your blood, increasing chances for
infection). Cover the site with antiseptic ointment
after the tick is removed.
Ticks can be sent to area labs
for testing.
$100 million support
On July 25, U.S. Sen. Christopher Dodd (D-CT) announced
his support of the Lyme and Tick-Borne Disease Prevention,
education and Research Act, a $100 million piece of
bipartisan legislation which would significantly strengthen
and coordinate efforts to research, prevent and treat
Lyme and other tick-borne illnesses.
The $100 million would be issued over a five-year
period.
Connecticut had the highest incidence
of Lyme of any state between 1992 and 2002. Lyme was
named after Old Lyme, where the disease was first
recognized (records of the condition itself, however,
extend back to the 1800s.)
There are numerous area support
groups in Connecticut for Lyme sufferers.
The Wilton Lyme Disease support
group meets the second Wednesday of every month at
7:30 p.m. at the Comstock Community Center off Schoolhouse
Road in Wilton.
The Greater Danbury Lyme Disease
Support Group meets the third Saturday of every month
in Redding.
The Greater Hartford Lyme
Disease Support and Action Group meets the third Wednesday
of every month in the Farmington/Unionville Community
Center.
Suffering
From Long-Term Lyme Disease
