Laurie's Story
As a victim of a "nonexistent" malady, chronic Lyme Disease, I've had to
learn how to cope alone with a disabling illness. Without entering the
political controversies, I want to present my facts, tell my story and
raise a warning flag for others. Because of the ongoing debate around
chronic Lyme disease, I should state that my opinions are completely my
own.
I caught Lyme Disease from a tick bite or bites that I got while birding
in New Jersey. I've been a very active birder in the state since the early
'80s. In the early '90s I knew as much as most people about Lyme disease.
I had heard it was a mild flu-like or arthritic illness; I took the
recommended precautions, but didn't see the threat as very serious. I was
actually treated twice for it. I recently found an old receipt for a
doxycycline prescription in Oct. 1991, which I had forgotten completely but
which had "Lyme Disease?" scribbled on it.
I must have had some reason to
go to the doctor, probably a rash.
Again in Sept. 1992 a tick bite
developed into a one-inch rash. Again I had three weeks of doxycycline. I
would have forgotten the date of this incident too, if it weren't for a
pelagic (offshore) birding trip out of Cape May. My records say I saw an
Audubon's Shearwater, the first I'd seen in NJ. I don't remember it, I just
remember being very seasick - unusual for me.
I don't recall any symptoms after the treatments and didn't return to the
doctor (I've always hated going to doctors). But things began to change
subtly in the early 90's. I didn't have any energy. I had frequent
headaches. My back hurt and my ankle always seemed to be "out."
My
metabolism seemed to slow, and I steadily gained weight despite all efforts
to control it. Formerly having a sharp memory, now I lost things and forgot
names. I wasn't very happy or productive at work. A long-time relationship
fell apart; I blamed that for frequent depressions. I also blamed stress,
lifestyle, encroaching middle age, eyestrain, lack of self-discipline, bad
luck, "sick building syndrome," reorganizations at work (I'm a Macintosh
computer specialist at Princeton University).
I certainly didn't consider
an infection. I told myself I could keep on with "normal" life and
rationalized away all the changes.
In April 1995, I was supposed to go to a weekend meeting in Cape May, but
instead found myself in bed for two days with chills, fever, and all-over
aches. It didn't feel quite like normal "flu" so I actually called the
doctor; his advice was "take aspirin and call me back on Monday." The worst
was over on Monday and I didn't call. But after that, I never felt really
well again; I was always exhausted, always aching, subject to mood swings
and weepiness. I spent every free moment trying to rest, but often couldn't
sleep.
Annoying symptoms came and went, and everytime I saw the doctor I
had a new and apparently unrelated problem. I had blue spots in front of my
eyes, and bright lights hurt them; I had to start wearing one contact lens
because my left eye developed astigmatism. My left eyelid twitched and the
left side of my mouth dropped down just a bit. My ankles and knees swelled.
I was unable to concentrate, do simple tasks or read simple texts; I recall
a training session at work, during which I couldn't comprehend what the
instructor was saying, although the material was fairly familiar to me.
I
avoided group birding trips because I couldn't keep up with the pace.
Formerly a tireless driver, I had to ask friends to drive me because I got
lost or drowsy behind the wheel. One beautiful, warbler-filled May day,
alone in the Princeton Woods, I lay down on the ground and cried; I hurt so
much I didn't think I could walk out.
It took an absurd length of time to sink in, but by July 1995 I could no
longer blame external factors, and went to see the doctor. Exams and blood
tests, including a Lyme disease test, were all negative. He tried to
suggest that it was all "in my head," but I'd already realized it wasn't.
He prescribed anti-inflammatories, painkillers, and diuretics, none of
which helped. He referred me to neurologists, orthopedists and a "pain
management" specialist, who all did tests and found nothing wrong.
This dragged on for months. Finally I found Dr. Joseph Burrascano's
guidelines on the web. My general practitioner agreed to try a course of
antibiotics. On doxycyline, I broke out in rashes and felt immediately
worse (a "Jarisch-Herxheimer-type reaction", if we'd only known it).
Over
the following months, my recovery was slow and inconsistent, and was
complicated by a lumbar disk injury. My doctor was willing to keep
prescribing doxycycline, although he had nothing more than Dr. Burrascano's
paper to work from. After a year, I had most of my mental function back,
and could read and write again. During good spells, my persistent symptoms
included frequent migraines, joint weakness, balance and orientation
problems, and limited stamina.
Finally in early 1997 I sought the care of a real Lyme specialist, who
prescribed Zithromax and then Biaxin, and by late 1997 I was having only a
few "bad days" every few weeks. A major relapse in late April 1998, along
with my first positive blood test ever, resulted in a move from
conservative oral treatment to intravenous antibiotics. I took a two-month
leave from my job, and rested almost full time. I was on IV from May 28 to
Dec. 8 1998, and used Rocephin (which produced rashes and respiratory
symptoms), Doxycyline, and finally Zithromax for 4 months, the most
effective treatment yet. By the end of 1998 I was feeling better than I had
for years.
In January 1999, I went on a reduced dosage of oral Zithromax for a month,
as "maintenance." In February, 46 months, at least six doctors and nine
kinds of antibiotics after the first "flu" attack (and over seven years
after the tick bite), I went off antibiotics for a month. But by the end of
March I was back on Zithromax after two weeks of insomnia, joint swelling,
aches, fatigue, the whole familiar list. I seem to be able to stay symptom
free as long as I remain on antibiotics, and relapse when I quit. This, of
course, is not supposed to happen; many doctors believe that there is no
bacterium that is not cured by one month of treatment.
I'm not a doctor, and I only know how I feel. I believe chronic Lyme
disease is the only reasonable explanation of my health problems since
1992. Why was I not diagnosed earlier? Many doctors and insurance companies
still say that the standard blood tests are reliable, but like many others
with long-term disease, I had inconsistent and largely negative blood
tests, although I exhibited three-quarters of the 40 symptoms listed in Dr.
Burrascano's diagnosis checklist, and had a history of frequent and
recurrent tick exposure in an endemic area. And my doctor, like many
others, was reluctant to order tests or report my case to public health
agencies for fear of being accused of "overdiagnosing" Lyme disease.
I had
to learn to read medical articles and journals, seek my own diagnosis
information, push for tests, and pay out of pocket when insurance refused
to cover tests and treatments.
I'm immensely grateful that I've been able to have adequate treatment; I'm
lucky, compared to some victims who have lost far more than I have. I kept
my job and my insurance, didn't have a family to care for (or feel guilty
about), never had an emergency room visit or cardiac involvement. But I
feel resentful, also, that I had to go so long undiagnosed with an ailment
which, if treated early, probably could have been cured quickly and easily.
Why is there so much denial, controversy and misinformation about this
infection? Lyme disease is fairly young, as far as medical science is
concerned. The syndrome was described by researchers in the late 1970's,
based on a number of cases in Lyme, Connecticut. Not until several years
later was the responsible infectious organism, a spirochete called Borrelia
burgdorferi, identified. The 1983 characterization of this infection was
rash, arthritis, and joint swelling; recommended treatment was for a minor
inflammatory illness, with a maximum of three to four weeks of antibiotics
followed by aspirin.
An influential paper, still cited, claimed then that
longer courses of antibiotics were ineffective. Despite much subsequent
research and clinical experience to the contrary, this has remained the
definition and treatment recognized by many insurance plans and some
doctors.
Over time, clinicians and patients have accumulated evidence that suggests
a much wider range of possible consequences of untreated or
inadequately-treated Lyme disease infection. The symptoms I experienced are
fairly typical of "chronic," "late," or "disseminated" Lyme disease (the
terms are used more-or-less interchangeably).
Depending on which organs are
attacked by the Borrelia burgdorferi spirochete, other symptoms may include
heart, lung, and eye problems, brain and nerve damage, major depression and
other neuropsychiatric effects. Some workers now feel Lyme disease is
fundamentally a neurologic (brain and nervous system) disease; this
understanding has been slow in coming and is still not universally
accepted. Diseases and syndromes which chronic Lyme disease may resemble
include multiple sclerosis, chronic fatigue syndrome, clinical depression,
fibromyalgia, lupus, and Alzheimer's disease. The old model of Lyme disease
as a kind of arthritis has apparently prevented the realization of the
seriousness of this illness.
There are other real problems with the old model as well. First, not every
infected tick bite results in a bull's-eye rash; one New England doctor
says that only 40% of his Lyme Disease patients ever had or remember having
a rash. Second, the most frequently-used test for Lyme disease infection,
called ELISA, is only about 60% accurate; none of the tests are completely
reliable, with both false-positives and false-negatives occurring
frequently.
False negatives occur because the Lyme disease spirochete is
apparently able to fool the human immune system by masquerading inside the
outer surface of the white blood cell, as well as by encapsulating itself
and becoming dormant for long periods, or by changing its exterior
chemistry. In these cases the immune system never produces antibodies, so
people with serious infections may not test positive with tests that detect
antibodies. It appears that the sickest people are those who never test
positive, yet these people are routinely excluded from studies and
treatment.
In addition to all this, recent research suggests that the spirochete is
very resistant to drugs because it lodges in areas such as joints and brain
which have relatively little blood circulation, so that blood-borne
antibiotics reach it only slowly; and an infection may "go underground" for
years before producing symptoms. And there are numerous strains of Borrelia
as well. This is why doctors who treat chronic Lyme disease give various
antibiotics for months or years, until the symptoms go away, rather than
for a one-month period based on the older model of the disease. (It is a
myth that humans "become immune" to antibiotics. It is the germs which can
evolve into resistant strains, but that does not seem to be the situation
in chronic Lyme disease).
So far only long-term antibiotics are at all useful in arresting or
reversing the disease. The human vaccines now in trial have been promoted
as "100% effective," but this is far from clear; testing for a few years is
hardly adequate with a disease that may lie dormant for decades. The
vaccines, further, have been developed based on an incomplete understanding
of the spirochete's biology; some of the test cases have gone to
litigation, and there are hints that a safe, effective vaccine may be years
away.
We don't know, really, what the very long term effects will be of
untreated infection, but the clues we have are disturbing. Because of the
obvious problems inherent in experimenting on humans, it has not been
practical to compare long-term outcomes of different treatments or lack of
treatment. There is still an inclination to downplay Lyme disease's
seriousness in some corners. It is possible that the motive for this may be
economic.
More public education, reliable tests and effective treatments for Lyme
disease are all needed. It is spreading faster than any other disease
carried by a vector (insect or other agent) and is a recognized public
health problem in New Jersey. The state is among the top five in the US
(with Connecticut, New York, Pennsylvania, and Rhode Island) in the number
of reported cases overall and the incidence rate; some authorities think
only 10% of cases are reported to the Center for Disease Control and
Prevention.
Lyme disease has caused deaths and suicides and many
disabilities. The CDC estimates $60 million last year in economic losses
caused by early Lyme disease, and doesn't attempt to offer estimates for
the chronic form. (Centers for Disease Control and Prevention, Division of
Vector-Borne Infectious Diseases, Fact Sheet, June 1997)
What does this have to do with you?
First, my experience suggests that many people may already be infected, and
have non-symptomatic Lyme disease. You may be bitten without knowing it,
and never see a rash at all. Or like me, you may recall a tick bite five or
more years ago, followed by a rash and short-term antibiotics; then, little
or no evidence of disease until years later.
Even when you're sick, there
may be no clue to the disease's identity until a lucky encounter with an
article, a friend, or a knowledgeable MD. This is pretty scary stuff. Don't
be a victim of the "I never get sick" attitude. Watch yourself and seek
advice as early as possible. And if your doctor's advice is "it's all in
your head," find a different doctor.
Second, we need to understand the environmental tie-in. White-tailed deer,
white-footed mice, and exurban habitats are all essential in the life cycle
of the tick that carries the spirochete. Until recent years, with the
abandonment of many farms, we had less perfect deer habitat and fewer deer.
At the same time, more roads and more automobiles have enabled us to live
in more rural areas. Sprawling residential development has a direct
connection to the spread of this infection; we may have environmental
choices to make if we want to avoid Lyme disease. Can we control deer
populations, and develop methods more effective than hunting?
Can we accept
pesticides to control ticks, and under what circumstances and at what
price? Can we subdue our passion for commuting and limit our sprawl?
Can we
learn to cluster our dwellings and revitalize existing centers instead of
spreading out? Perhaps Lyme disease will combine with ozone depletion,
global warming, habitat destruction, and overpopulation to wake us up to
the impact of our "lifestyle" on our environment and ourselves.
Finally, we must have an educated, Lyme-literate health care system, which
understands and supports long-term Lyme disease sufferers rather than
denying them treatment. Those who work in health care, government, or
research, should expect to see the type of political battle that AIDS and
Gulf War Syndrome patients have waged, until there are accurate tests,
effective treatment, adequately funded and responsible research, and fair
insurance coverage.
A special note for birders
Why should you care about Lyme disease? Everyone knows that they should use
DEET and tuck socks into pants and check for ticks after birding. Everybody
knows someone who had the rash, took antibiotics for a while and was cured.
Everyone has heard about the vaccine; it will solve everything. What's the
big deal? But as I discovered, there is a lot more to know. If you've made
it this far in my story, you have seen that I knew "the basics" and it
didn't prevent my contracting a nasty case.
Birders are among the most at-risk groups for Lyme Disease, along with
others who work or play outdoors. Birders are by definition likely to go to
a variety of habitats including tick-infested areas. Despite the best
precautions, most birders probably have been bitten more than once. Birds
do carry ticks; banders and rehabbers are at extra risk (A bander I know
has been infected and treated five times). To understand the risks and
choices birders need all the information we can get, and must actively work
at self-protection.
If you haven't had Lyme disease YET, what can you do? First, don't stop
birding, but be aware of the potential hazards. If you are bitten, seek
immediate treatment. Be an educated health-care consumer; don't necessarily
believe everything your doctor says, since many are still uninformed about
recent developments, or afraid of change. Try to educate him or her, but if
your doctor seems nonchalant about Lyme Disease (or denies its existence)
find a new doctor fast.
There are Lyme Disease support groups all over the
country now who can provide referrals. Be alert to the possibility of
chronic Lyme disease and the severity of its impact, and don't poke fun at
the "hypochondriacs" who have it and the "quacks" who treat them. Support
funding for research, education, accurate tests, and a real cure. And
please support access to birding spots for birders who are less physically
able; imagine what you would want to do if Lyme Disease made you into a
wheelchair-bound or automobile-bound birder.
Laurie Larson
The Lyme Disease Quilt Page
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