Beyond Borrelia

Lyme Disease - Looking Beyond Borrelia

Lyme disease and other tick-borne illnesses have reached epidemic
proportions in Connecticut and in much of the United States. One of
the greatest difficulties facing patients and physicians is that
Lyme disease rarely presents with the classic symptomsreported in
medical textbooks. Rather, Lyme has been called the new “Great
Imitator” because it can look like almost any other disease and
commonly looks like several different diseases at the same time.
Historically, Syphillis was the first “great imitator.”

In this article, we will review some Lyme Basics, including what
Lyme is, how people get it, how physicians make the diagnosis of
Lyme disease and how it is commonly treated. We will also review
the less well-known but more common presentations of acute and
chronic Lyme disease, symptoms in children (as children act much
differently than adults when they are infected with Lyme disease),
and individualized approaches to treatment.

Lyme Basics
Lyme disease is the most common vector-borne disease in the
United States. It is transmitted to humans by the bite of an infected
Ixodes scapularis tick. This tick is better known by its common name
the blacklegged or deer tick. Lyme disease is caused by the bacterial
spirochete Borrelia burgdorferi. Cases of Lyme have been reported
in all 50 states. Summer is the peak time for people to get deer tick
bites , but since symptoms may not show themselves for 1-3 months
or more after transmission, it’s important to keep Lyme in mind year
round.

Deer ticks can be active during all months of the year; however,
peak incidence of Lyme transmission occurs during the summer
months. Adult deer-tick activity peaks in early spring and again in
mid-fall. Adult ticks account for transmission of about 5% of reported
cases of Lyme disease. The much smaller nymphal tick, that
is about the size of a poppy seed, is responsible for about 95% of
cases of Lyme and is most active from mid-May through late August
in Connecticut. However, I’ve personally seen nymphs active in
Connecticut as late as October.

Nymphal ticks feed for 4 days while adult ticks feed for 5-7
days. The rate of transmission of Lyme from the bite of an infected
tick increases over time. Transmission over the first 48 hours is about
12%, however it increases dramatically to 75% at 72 hours and 94%
at 96 hours.

The Centers for Disease Control and Prevention (CDC) has indicated
that reported cases of Lyme disease are about 10% of actual
cases that meet their surveillance criteria. This means that up to 90%
of cases that meet these criteria are not being reported. Currently,
more than 20,000 cases of Lyme disease are being reported each
year in the United States. If unreported cases are as prevalent as
suspected, then there are likely more than 200,000 new cases per year.
This would mean that each year 5 times more people would contract
Lyme than HIV/AIDS.

Lyme disease has reached epidemic proportions in the Northeastern
states, including Connecticut. In 2009, the Connecticut statewide
incidence of Lyme disease was 122 cases per 100,000 people,
with some counties reaching a rate of 252 cases per 100,000. This is
a startling increase when compared to the 2004 statewide incidence
of 40 per 100,000. If CDC estimates are correct that would mean
that approximately 1 in 100 people in Connecticut become infected
with Lyme disease each year. Approximately 25% of the people who
become infected with Lyme are children.

Symptoms of Lyme Disease
A red rash with central clearing (bull’s eye), called erythema
migrans (EM), is diagnostic of Lyme disease. Studies show that 40-
69% of people have the classic EM rash; however, physicians report
that this rate may be as low as 10%. This rash may not occur at the
bite site. Patients may present with multiple EM rashes or other types
of rashes. Fifty to seventy-five percent of those infected with Lyme
disease do not remember having had a tick bite.

Lyme is a complex, multi-system disease that has the potential to
affect every organ system in the body. The most common symptoms
of acute Lyme disease include flu-like symptoms, migratory joint and
muscle pains, fatigue, headache, cognitive dysfunction (often called
brain fog) and migratory paresthesias (a numb or tingly feeling).
Some patients experience sound and light sensitivity as well as eye
pain.

Because Lyme can present with many different, seemingly
unrelated symptoms, patients may be misdiagnosed with conditions
including depression, anxiety, migraine headaches, fibromyalgia,
chronic fatigue syndrome, irritable bowel syndrome and leaky gut,
Parkinson’s disease, and multiple sclerosis. Severe cases of Lyme
can cause heart block (a blockage in the heart’s electrical system),
meningitis (inflammation of the covering of the brain and spinal
cord) or encephalitis (inflammation of the brain itself), amongst
other problems. More than 350 medical conditions have been noted
to be caused or associated with Lyme disease in peer-reviewed
medical journals. Early detection and treatment can help prevent
the late manifestations of Lyme that are often severe and
difficult to treat.

Children and Lyme Disease
Children under the age of 15 account for 25% of reported cases
of Lyme disease. While some children present with the more common
features of Lyme disease that we have already discussed, many
of them present in ways that are much different than adults. Many
children develop sleep problems, including nightmares. New onset
bedwetting may also develop. Daytime urinary frequency is often
seen. Some children present with odd skin sensations, others with
discomfort when being touched. They often complain of headaches
that can range from mild to debilitating. Commonly, children present
with isolated neuropsychiatric and gastrointestinal changes. This
makes the diagnosis of Lyme disease in children more challenging as
well as more crucial.

Neuropsychiatric changes can range from mild to downright
scary to parents and teachers. Children may experience acute
changes in personality, abrupt behavioral changes, uncharacteristic
outbursts, and trouble tolerating their normal environment. Some
children have outbursts of rage; this is often directed at one family
member or schoolmate. Children may also have problems with
speech and motor skills leading to rapidly declining grades.
Difficulty in processing auditory input often appears as a lack of focus
leading a child to be misdiagnosed with attention deficit hyperactivity
disorder (ADHD). Some children with Lyme disease develop
problems with sensory integration and have a difficult time focusing
when they are exposed to multiple stimuli at once. This leads to
confusion and, in turn, poor behavior.

Happy children may become irritable and sad. Children may
have an abrupt change in their mood to the point they are depressed,
anxious, psychotic, and even suicidal. If this is the case, it is important
to consider Lyme disease as well as co-infection with Bartonella
henselae. Some previously outgoing and gregarious children become
withdrawn or reluctant to play. Children may develop odd, repetitive
behaviors and/or tics. When several of these symptoms are seen in
the same child, they may be misdiagnosed with autism.

Children and adolescents often exhibit Lyme disease symptoms
in the GI tract. These include abominal pain, heartburn, nausea,
vomiting, diarrhea and blood in the stool. Gastrointestinal Lyme
disease may mimic colitis or Crohn’s disease. Small intestinal bacteria
overgrowth may be present. H. pylori is frequently resistant to
treatment if Lyme disease is also present in the GI tract. Co-infections
including babesia, bartonella, and mycoplasma, have been found in
the GI tract.

Co-infections are other infections that can be transmitted by
the bite of an infected tick. One common co-infection is Babesia
microti. Babesia symptoms include sweats (day or night and often
drenching), unrelenting headaches or head pressure, heart palpitations,
a burning sensation in the feet, and muscle and bone pain.
Ehrlichia and anaplasma are infections that can come on quickly and
cause very high fevers, chills and intense fatigue, although they can
also present as moderate headache and fatigue. In addition to
neuropsychiatric changes, Bartonella hensalae can cause purple stretch
marks and make stretch marks and surgical scars change from skin
tone to a more purple color. When symptoms are all on one side of
the body, Bartonella is often the culprit. These co-infections cause
similar symptoms in adults.

Making the Diagnosis of Lyme Disease
The diagnosis of Lyme is often made using the criteria set forth
in the CDC surveillance case definition of Lyme disease, including
a two step laboratory testing strategy: an antibody screen followed
by a confirmatory Western blot. These tests are known to miss 20-
50% of patients who have Lyme disease. On its website, the CDC
states, “This surveillance case definition was developed for national
reporting of Lyme disease; it is not intended to be used in clinical
diagnosis.” One of the biggest problems with Lyme-disease testing
is that the best tests available are blood tests and Lyme disease does
not live in the blood. Currently there are no blood tests that can tell
your doctor that you do or do not have Lyme, they can only tell if
you have been exposed to Borrelia. Your clinical condition, supported
by blood tests, is the only accurate measure of active Lyme
disease. A negative blood test does not mean you do not have active
Lyme disease; it may mean your immune system is not producing
antibodies to Borrelia, it is up to your physician to determine if you
have active infection. Lyme disease is a clinical diagnosis supported
by blood tests.

In Connecticut, if your doctor is considering the diagnosis of
Lyme disease, it very well may be the correct diagnosis. Studies have
shown that in the Northeast, as many as 70% of ticks may be infected
with Lyme and 50% of ticks may carry other tick-borne illnesses.
In 2009, tick drags conducted by researchers at the University of
New Haven found that a startling 90% of ticks carried Lyme disease
and 30% carried Babesia microti.

Treatment of Lyme Disease
The best treatment for acute Lyme disease is antibiotics. The
standard of care in the United States is 3 weeks of one antibiotic
and this is reported to cure Lyme disease. Unfortunately, this common
assertion is inaccurate and contradictory to almost all scientific
research done on Lyme disease. Research shows that the Lyme spirochete
has many mechanisms by which it can hide from your immune
system and live despite high doses of multiple antibiotics. There
are several distinct forms of the spirochete, each of which requires
a different type of treatment; unfortunately most doctors are only
taught about one form. This means that many people who are treated
for acute Lyme disease will be undertreated and go on to develop
chronic symptoms.

Borrelia lives outside of cells and inside of cells. Some forms of
Borrelia have cell walls and others do not. When exposed to a threat,
such as antibiotics or herbs, the Borrelia spirochete can roll up into
a protective ball called a cyst and remain dormant. Cysts generally
open up to reproduce about once a month, however they have been
reported to lie dormant in test tubes for 10 months or more before
opening back up to become a fully active spirochete. Borrelia can
kill white blood cells (immune cells that are attempting to protect
you from the spirochete) and cover itself with their proteins; the
body now views the spirochete as if it were a white blood cell, effectively
cloaking it from your immune system. One of the other ways
Borrelia evades your immune system is called a biofilm. A biofilm
is formed when many spirochetes group together and create a thick,
gelatinous coating over themselves. We mau need to use antibiotic
doses 1000 times higher than usual doses in order to penetrate
biofilms. Since this is not practical or safe, we have had to come
up with other methods of treatment to break up biofilms.

Patients who present with long-standing untreated or undertreated
Lyme disease have several different treatment options. They
may be treated with multiple different antibiotics, multiple different
herbals or a combination of antibiotics and herbs. Lyme disease
significantly changes how all the body’s systems function, so patients
with chronic Lyme disease often have many other problems
that must be addressed. Some of the most common conditions that
are induced by or worsened by Lyme disease include heavy metal
toxicity, vitamin and mineral imbalances, and hormonee imbalances,
including thyroid and adrenal dysfunction.

It has been my experience that Lyme disease is not only the new
“Great Imitator,” but also that it is the “Great Instigator.” Lyme has a
tendency to create all sorts of other problems and then hide in one
of its dormant forms. Patients are left with many different symptoms
that seem unrelated. They often are diagnosed with fibromyalgia,
chronic fatigue syndrome and even a somatization disorder (a fancy
way of saying all your symptoms are in your head). I have found that
Lyme disease severely impacts one’s vitality. Many affected patients
have little or no reserves remaining. Minor insults result in tremendous
flares of symptoms and suffering. It is crucial for physicians
seeing patients with Lyme disease to look at them as individuals who
have multiple different stressors affecting them rather than focusing
solely on Lyme disease.

Looking Beyond Borrelia
There are many toxins outside our bodies that are exerting negative
forces upon us. If we are to remain healthy we must exert a force
that is equal to or greater than those forces in response. When our
bodies are in balance with all the things that are pushing in on us,
we are able to maintain a state of health. When the force applied on
us is too great, a state of imbalance results. Over that last thirty or
so years, the amount of toxins bombarding our bodies has increased
exponentially. On a day to day basis we are exposed to so many toxins
that we are barely able to maintain a state of balance and health.
Infection with Borrelia commonly initiates a domino effect and our
once good health seems to fall apart nearly overnight.

When I evaluate patients I always apply the Chronic Toxin
Overload model. This concept allows us to look at each person as
a unique individual and fully evaluate the role of all the different
toxins that are impacting him or her on a daily basis. It also helps
us remember that the symptoms a patient is experiencing are the
result of all the toxins they are exposed to in addition to their unique
genetic makeup. Each patient needs to be treated as an individual
who responds to insults on their health in a manner that is unique to
them. This approach to diagnosis and treatment is rarely seen in conventional
medicine because it requires spending time with patients, getting to know
each one as an individual, and creating an individualized treatment plan.

I believe that Lyme disease is difficult to diagnose and treat for
three main reasons:

1. Borrelia is a complex organism that has developed many ways to
evade detection by our immune systems.
2. Borrelia is the Great Instigator. It decreases our vitality and modifies
our internal environment in ways that cause subclinical failure of
many of our body’s systems.
3. Lyme disease is rarely the only toxin exerting a strong negative
force on a patient.

The Chronic Toxin Overload model provides us with a framework
that allows us to understand that one toxin is rarely the problem.
It helps us understand why Lyme is not the only toxin impacting
our patients and how it can function as an instigator of so many
other problems. Additionally, we can see why so many patients with
Lyme disease get so ill and continue suffering despite aggressive
antibiotic or herbal treatments.

In today’s world of nuclear radiation, global warming, 4G
phones, high speed internet, high stress jobs, mercury fillings,
and unclear futures due to faltering economies, we are all under
a tremendous burden of chronic toxins. Our world has changed
significantly over the past several hundred years. In addition to ever
increasing toxic stresses, our environment is ever changing. Each
time a forest is cut down to make room for a residential or commercial
development, we create more prime tick habitat. Our families
are now forced live and play in areas where ticks are likely to live.
Lyme disease is no longer only a tick borne illness; it is a complex
physical, mental, emotional and social condition that is very common,
but unfortunately often goes undiagnosed.

Fortunately, patients are speaking up. By raising their voices
their doctors are slowly beginning to listen. Many physicians are
seeking additional training in the diagnosis and treatment of Lyme
disease. Still others are integrating the use of conventional medications
with herbal and nutritional treatments. It has been my experience
that there is hope to end the suffering of patients with persistent
Lyme disease. By looking at and addressing all the potential toxins
affecting a person, chronic illness dissolves. When patients who are
suffering are evaluated and treated as unique individuals, patients
regain their health and their lives.

About the author:
Dr. Tom Moorcroft, DO specializes in the integrative treatment of
infants, children and adults with chronic illnesses that result from
chronic toxin overload, including Lyme disease and other tick borne
illnesses, at Origins Of Health in Berlin, CT.