Mission Statement
The Lyme Disease
Research Foundation a public non-profit
organization dedicated to research into the
understanding and care of patients with persistent
symptoms of Lyme disease.
Goal
The Foundation focuses
on the long recognized and newly defined group of
individuals with post-treatment Lyme syndrome.
The goal is to clearly define and understand the
cause of disabling symptoms these patients may suffer
and improve their diagnosis, treatment, and health
outcomes.
Magnitude of Problem
Lyme
disease, caused by infection with the spirochete
bacteria called Borrelia
burgdorferi, is the most common tick-borne disease
in the United States. The number of reported cases has
more than doubled between 1992 and 2006, and almost
29,000 new confirmed cases were reported in 2008.
Additional studies have shown that the actual number of
cases of Lyme disease may exceed reported cases by a
factor of 6 to 12 in endemic areas. The threat to residents of endemic areas continues to rise as they
increasingly move from cities to new suburbs and rural
areas, where Lyme disease transmission is most frequent.
It is known that the principle means of transmission of
the disease is a tiny ticks that are carried by
whitetail deer, which increasingly roam in suburban
areas.
Lyme disease, though now widely familiar, continues to be poorly
understood and a source of intense controversy among
patients and physicians.
When correctly diagnosed, the majority of
patients with acute Lyme disease
can be successfully treated with a standard course of
antibiotics. However,
10% to 20% of patients with acute Lyme disease, after
completing the standard course of antibiotic therapy, go
on to develop chronic symptoms now identified as
post-Lyme disease syndrome.
Moreover, patients who are diagnosed with
late-Lyme arthritis are also known to be at risk for
developing treatment-resistant symptoms.
Treatment-resistant arthritis occurs in
approximately 10% of patients after the standard course
of antibiotic therapy.
Not all who contact Lyme disease are identified,
diagnosed, and treated early, and 10% to 20% of people
infected do not show the disease’s diagnostic
marker--a circular or oval red skin lesion or rash. Many
patients do not recall or recognize a tick bite, and the
rash of Lyme disease may also be mistaken for a spider
bite or some other irritation. These factors lead to a
misdiagnosis that is further compounded when neither the
patient nor a health care professional recognizes the
nonspecific viral-like symptoms of acute Lyme disease.
As a result, patients may be treated for other
infectious syndromes with common antibiotics such as
cephalexin, azithromycin and ciprofloxacin which have
suboptimal or no effect against the bacterial agent of
Lyme disease.
These factors result in an undefined population of
patients who have been partially and ineffectively
treatment and could be at higher risk of developing
post-treatment Lyme syndrome.
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