- The prognosis after treatment of Lyme disease
is generally very good.
The vast majority of people who
receive their antibiotics finish them
and return to their normal health.
The prognosis is best when Lyme disease
is diagnosed and treated early.
The prognosis may be less good
when the diagnosis and treatment is delayed.
The prognosis after the second stage of Lyme disease,
that early disseminated stage of infection
is also very good.
The vast majority of patients recover with antibiotics
and return to their normal state of health.
There is, however, a subgroup of patients
that has ongoing symptoms even after antibiotic therapy.
This condition is called post-treatment
Lyme disease syndrome.
This post-treatment Lyme disease syndrome
is a condition that is really characterized
by a constellation of symptoms.
Fatigue, musculoskeletal pain, and cognitive complaints
like difficulty with short term memory,
or speed of thinking or multitasking.
This constellation of symptoms is the
characteristic by which we identify
post-treatment Lyme disease syndrome.
Post-treatment Lyme disease syndrome
is exactly what the name says it is.
It's after treatment of Lyme disease,
and it tends to occur in patients
after treatment of either the first
or second stage of Lyme disease.
After the second stage of disseminated Lyme disease,
post-treatment Lyme disease syndrome
may be especially common with people
who have had neurologic involvement,
and the rates of post-treatment Lyme disease syndrome
after neurologic involvement may be as high as
20% or even higher.
Without neurologic symptoms,
the rates of post-treatment Lyme disease syndrome
tend to be less than the 10% to 20% range.
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Post-treatment Lyme disease syndrome is characterized by
patient-reported symptoms.
Fatigue, cognitive complaints, and pain.
We tend not to see a lot of
what are called physical signs.
We don't see a lot of joint swelling like we do in the
late Lyme arthritis antibiotic refractory situation.
In post-treatment Lyme disease syndrome,
the joints aren't swollen, they're just very
painful or stiff.
Post-treatment Lyme disease syndrome
can occur after early diagnosis of Lyme disease
as the first stage, when the person has the rash.
The symptoms of post-treatment Lyme disease syndrome
after the treatment of the Lyme rash include
ongoing fatigue, musculoskeletal aches and pains,
and trouble with cognitive tasks.
The term post-treatment Lyme disease syndrome
does not imply a specific causation, however.
The cause of post-treatment Lyme disease syndrome,
in other words, why do those 10% of patients
have persistent symptoms after antibiotics,
the cause of that actually is unknown.
That is one of the major focuses
of the research at Johns Hopkins,
was trying to understand what actually causes
those underlying symptoms to persist
after antibiotic therapy.
There's many different hypotheses and
an extensive debate about the possible causes.
The debate ranges from whether the
persistent symptoms are related to
leftover bacteria that have not been
completely eradicated to treatment.
There was some evidence for that in
animal models of Lyme disease.
The Lyme disease literature suggests that
post-treatment Lyme disease syndrome
may be related to autoimmunity,
and that the symptoms are not from persistent infection,
they're from an autoimmune syndrome
that's taken over the patient's condition
after antibiotic treatment.
The term post-treatment Lyme disease syndrome
is agnostic to the cause.
It doesn't imply one cause versus another,
it just acknowledges that there's
a very real entity of ongoing illness
after treatment of Lyme disease that is very real,
and can be defined using specific criteria
that we employ in the Lyme Center.
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The treatment of post-treatment Lyme disease syndrome
is actually unknown.
There currently is no FDA-approved treatment
for post-treatment Lyme disease syndrome.
Part of the research at the Hopkins Lyme Center
is to understand the specific mechanisms of this illness
so that better treatments can be designed
that specifically focus and target
the mechanism of this illness.
Currently, there's no FDA-approved treatment
for post-treatment Lyme-disease syndrome,
and treatment must be individualized
through your primary care physician,
focusing on the specific
types of symptoms that you're having,
and focusing on your primary care physician's
knowledge and comfort level with treating this condition.
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The best information about prognosis
actually comes from studies of people
with late Lyme arthritis.
This is the subgroup of patients
in stage three Lyme disease
that have joint swelling and late Lyme arthritis.
10% of patients after that extensive treatment
may remain symptomatic.
They may continue to have swelling of the joints and pain,
and the condition has been termed
antibiotic refractory late Lyme arthritis.
This is a set of patients that
don't actually recover completely
after their antibiotics are completed.
This 10% group is thought to have an autoimmune arthritis.
Extensive research has shown that the bacteria
can no longer be found in the tissue or fluid of patients
that have this antibiotic refractory condition.
The condition is thought to be perpetuated by
our own immune system.
This is called autoimmunity, where our own immune system
continues to inflame the tissues,
continues to cause swelling and pain,
even in the absence of detectable bacteria.
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Patients are often referred to the
Lyme Disease Research Center
for evaluation of chronic Lyme disease.
Chronic Lyme disease is a condition that patients
often seek consultation regarding.
In the Lyme Center, we look at chronic Lyme disease
as a starting point for their evaluation.
Chronic Lyme disease is kind of an umbrella term
that probably encompasses many different
subsets of illnesses.
For example, it's very similar to a
patient concerned about chest pain.
When somebody comes into the emergency room with chest pain,
the doctor doesn't know whether the patient's suffering
from anything as mild as food-related
esophageal symptoms or acid reflux,
or something incredibly serious
like a myocardial infarction.
They both present with chest pain.
A similar situation occurs in chronic Lyme disease.
We view this as a starting point to determine
what's actually causing the symptoms.
The symptoms of chronic Lyme disease are very similar
and overlap with other conditions
because they're symptoms such as fatigue,
and pain, and cognitive symptoms
that have many different etiologies.
When we evaluate patients with
a concern over chronic Lyme disease,
we dig down deep and do an extensive evaluation,
and we find that patients end up having
many different final diagnoses.
Sometimes the final diagnosis
is not at all related to Lyme disease.
They may have an endocrine condition
such as thyroid disease, they may have
an autoimmune condition such as rheumatoid arthritis,
they may have a condition related to
a different infection, not Lyme disease.
Our extensive evaluation shows that patients
usually fall into several major categories.
One of those categories is
post-treatment Lyme disease syndrome,
and so we do everything we can
to try to define the patient's
exposure to Lyme disease and their history that would
substantiate the diagnosis of
post-treatment Lyme disease syndrome.
Not everyone after extensive evaluation
will have a final diagnosis, unfortunately,
because the symptoms of chronic Lyme disease,
fatigue and pain, are non-specific.
In the case of post-treatment Lyme disease syndrome,
we do have a final etiologic diagnosis,
we know that the patient had Lyme disease,
they retreated, and that their symptoms persisted
after antibiotic treatment.
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