As an
infectious disease doctor, I am constantly being asked about Lyme disease by my
patients, acquaintances, and other doctors.
Their interest is well founded.
One only needs to Google “Lyme disease” to see the thousands of
divergent opinions and theories, both by the medical establishment and the
public. Even my colleagues are
confused. What constitutes a true
diagnosis of Lyme disease? Can a person
be infected by Lyme disease despite having a negative test? Is chronic Lyme disease real? I field these questions on a daily basis
despite living in North Carolina where Lyme is a rarity according to the Center
for Disease Control (CDC) and the N.C. State Health Department. I am sympathetic to my colleagues in the Northeast
where Lyme disease is endemic. I, for
one, will not be volunteering to practice medicine in Lyme, Connecticut. Despite my relative insulation from the heat
of battle, I am fearful that with global
warming and the associated intrusion of new vector borne pathogens into traditionally
cooler and less bug infested areas, the Lyme referrals will increase, even here
in the N.C. Mountains. What is a
clinician to do?
First,
let me relate what is known about Lyme disease and generally accepted by most
clinicians - both western trained and alternative. Lyme disease is the most common reportable vector
born disease in the United States. Lyme
disease is transmitted by certain ixodid ticks and is caused by the spirochete Borrelia burdorferi. Lyme is also present in other countries where
other Borrelia species may be involved.
According to the CDC, over 30,000 cases of Lyme are reported in the U.S.
each year, although the true number of cases likely exceeds 300,000 due to
underreporting. Classic early Lyme
disease presents as a bull’s-eye rash that appears 1-2 weeks after a tick
bite. For some, the rash is all they
get, but others may report fatigue, headache, joint pain, and occasionally, fever. Early Lyme is treated with antibiotics,
usually doxycycline. Serologic testing
at this point is not recommended, as an immune response has often not yet
kicked in, leading to falsely negative tests.
Up to this point, there is generally agreement, but with all else Lyme,
the consensus breaks down.
The
problem is that despite a clear CDC definition for Lyme disease - a reported
tick bite and classic skin lesion for early Lyme disease, and well defined
serologic criteria for secondary Lyme disease- there is ambiguity regarding
whether people commonly progress to long term symptoms related to Lyme disease
despite treatment, an entity referred to as chronic Lyme disease. Some argue that a person can develop chronic
Lyme disease despite never having a distinct tick bite, rash, or serologic
evidence of infection. An expert panel
organized by the Infectious Disease Society of America (IDSA), the main
association for infectious disease doctors in the U.S., agrees a percentage
(upwards of 20%) of persons with confirmed Lyme infection may continue to have
persistent complaints lasting beyond 6 months from the original diagnosis despite
appropriate treatment, but asserts that the complaints and numbers affected are
not significantly greater than the general population as a whole, and are thus
not clearly attributable to Lyme disease.
Additionally, the panel has concluded that even if there is such an
entity as chronic Lyme disease, which it says there is not, there is no
evidence supporting treatment with a longer course of antibiotics or any of the
treatments proposed to date. Here is
where the IDSA is at odds with other Lyme advocacy groups and Lyme
societies. The International Lyme and
Associated Diseases Society (ILADS) has reviewed the same studies and formed
entirely different conclusions.
What is
a clinician to do? The patients are
confused, the doctors are confused, and I am confused. Something must be going on, but what? Patients complain of “brain fog,” poor memory,
numbness, pain, headaches, and irritability.
It sounds like a bad hangover.
While all this suffering is concerning, it does create enormous
opportunity. Into this knowledge gap,
many have entered. In the Northeast,
Lyme Clinics abound. It really feels
like the wild west of medicine. There
are endless remedies proposed and no lack of willing customers. Cures for chronic Lyme disease are offered by
dedicated western trained clinicians, opportunistic western trained clinicians,
homeopaths, herbalists, and alternative practitioners of all stripes.
Stay tuned. Next post
- Chronic
Lyme Disease - Alternative medicine paradise (The next post will be in 2 weeks – I am gone
to Nicaragua for a medical mission in the interim)
