Seek
out a ‘lyme-literate’ physician
Camden Herald Weekly
Camden NJ
by Rebecca Thompson
18 March 2004
A family member
tested positive for Lyme disease recently after months of puzzling “aches
and pains.” Now that Lyme is an uninvited visitor in our home, I
continue to hear of many more cases. These stories I hear are full of
the trials, tribulations and confusion that often accompany Lyme disease.
Because of the alarming
frequency of these tales and the misinformation passed around as truth,
I thought it important to share some Lyme facts that I’ve learned
in my research. I’m not an expert, but I am a concerned parent educating
myself through materials available to us all. My intention is to offer
help to those who may not know where to begin.
Lyme disease comes
from a bacteria carried by tricks. Humans (and sometime our canine companions),
contract Lyme disease from a bite inflicted by a disease-carrying tick.
We may or may not be aware that we have been bitten; less than 50 percent
of Lyme patients remember being bitten, and up to 50 percent do not have
the tell tale “bull’s-eye” rash associated with Lyme disease.
Deer ticks are not
the only carrier of Lyme disease and there is more than one kind of bacterium
that is infectious. I will continue to discuss deer ticks and the bacteria
Borrelia burgdorferi.
The first reported
case of Lyme in the U.S. was in Wisconsin in 1970. Lyme was later named
for Lyme, Connecticut after an outbreak began in 1975. At that time it
was referred to as Lyme arthritis, as it was thought to be juvenile rheumatoid
arthritis. Then in 1980 it was discovered that the bacteria Borrelia
burgdorferi, was the cause of Lyme, and the name was eventually changed.
Lyme was thought
to be endemic to New England and the eastern US. This may be the area
we are most familiar with, but actually, Lyme disease is widespread. It
is the most prevalent tick-borne infection in the US.
There are several
blood tests used for confirmation of Lyme disease. The two most commonly
used are the immunologically-based ELISA and Western Blot Assays, but
there are also others. According to the Lyme Disease Association, the
ELISA is very unreliable, missing 35 percent of culture-proven Lyme. Many
people who test negative by ELISA, test positive by Western Blot. It is
important to note that all testing relies on the accuracy of the lab performing
the work. Some labs specialize in tick-generated diseases. Diagnosis of
Lyme should not rely on test results alone. Some patients repeatedly test
negative and have a plethora of Lyme disease symptoms. That is why it
is important to find a physician who is familiar with the complex nature
of the disease. The diagnosis is primarily based on clinical evidence.
If you suspect you
may have Lyme, I can not over emphasize the importance of finding a Lyme-literate
physician. They are referred to as LLMD (Lyme-literate MDs). Treatment
of Lyme takes perseverance and an extended and specific course of treatment.
Lyme is insidious and pernicious. If not caught and treated correctly
early, it invades the body, hiding effectively, evading testing and treatment
while wreaking havoc! Finding a knowledgeable doctor is key to regaining
health.
Probably the biggest
challenge in diagnosing are the varied forms the symptoms can present.
Lyme disease causes well over 100 symptoms! There is no “standard
of care” for Lyme disease. Misinformation and conflicting views have
caused inconsistencies in diagnosis and treatment, patients are often
subjected to extensive testing. They may be told they have Fibromyalgia
or Chronic Fatigue Immune Dysfunction Syndrome. Multiple Sclerosis, Lupus,
Parkinson’s, Alzheimer’s, Rheumatoid Arthritis, ALD, Chemical
Sensitivity Syndrome and even psychiatric disorders such as depression
of anxiety. They might be told there is nothing wrong with them because
no medical evidence can be found to support their physical complaints.
Another misfortune
of misdiagnosis is the use of steroid-based medication as treatment for
the many painful inflammatory symptoms often present in Lyme patients.
These medications (such as prednisone), suppress the immune system causing
it to tolerate the presence of Borrelia instead of attacking and
killing it. This treatment with anti-inflammatories can significantly
diminish the prognosis of a Lyme patient, prolong the course of the disease,
and can make for a more sever case.
New guidelines are
needed and have been recently published by ILADS, The International Lyme
and Associated Diseases Society. Hopefully these will be adopted by the
general medical community soon.
Don’t be surprised
if your questions or own knowledge are met with cynicism or ignorance. This
is a puzzling, unpleasant but not uncommon experience. Lyme seems to be
an emotional issue wherever it crops up. It’s become such a heated
topic in Connecticut, that the Attorney General sponsored “Lyme Hearings”
one day last month. This was done to allow the airing of grievances from
all sides. www.ILADS.org
has more information.
I hope this information
has been useful. There is a lot more out there for those motivated to
go looking for it.
Rebecca Thompson
lives in Lincolnville.
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