Late-stage
Infection:
When Lyme disease goes
undetected, undiagnosed and untreated for months or years following infection;
the bacteria can spread to the nervous system, the heart and other organs,
tendons and joints. This late-stage infection can result in a wide variety of
physical, emotional, and mental or cognitive symptoms. The late-stage list of
symptoms is long and can include
arthritis, heart abnormalities, Bell's palsy (paralysis of one or both sides
of the face) and severe cognitive or mental dysfunction including memory loss,
confusion, psychiatric problems, etc.
Misdiagnosed:
Lyme
disease is often referred to as the Great Pretender because the symptoms of
Lyme disease can so closely mimic the symptoms of other diseases. Although no
one knows the exact figures, Lyme patients have been misdiagnosed with many
other conditions including chronic fatigue syndrome, fibromyalgia, multiple
sclerosis, menopause, depression, Alzheimer's disease, and Lou Gehrig's
disease. Other patients have failed to receive any kind of definitive
diagnosis long after the presentation of symptoms.
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Symptoms:
Early signs of Lyme disease
include flu-like symptoms and a Lyme rash. The symptoms include muscle aches,
joint pain, fatigue, fever and headache. Most symptoms show up days or weeks
and occasionally months following infection.
The
Lyme rash is referred to as Erythema
migrans or EM. It used to be believed that only a bulls-eye rash at the
site of the tick bite indicated Lyme disease. We now know this is not
accurate. We know that the rash may
not show up at all, or it may appear to light in color to be noticed.
The rash can be shaped like a bulls-eye, it can be smooth or bumpy, it may or
may not feel warm, and there can be multiple rashes that appear at the site of
the tick bite or elsewhere on the body.
Once
the infection becomes established, symptoms of Lyme disease vary but may include pain in muscles and joints,
fatigue, swollen glands, fever, upset stomach, headache, forgetfulness, sleep
disorders, depression, and sensitivity to light and sound, to name a
few.
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Early
Detection:
Virtually everyone involved
with Lyme disease agrees that early detection and treatment of Lyme disease
significantly improves the chance of a full recovery. Some experts
describe a window of opportunity following infection when treating the disease
with antibiotic therapy can result in a high cure rate and lessen the chance
of chronic, long-term problems. Although not proven, some suggest that this
window of opportunity lasts up to six to eight weeks.
Unfortunately,
receiving a Lyme diagnosis followed by adequate treatment can be difficult. It
has been reported that it takes an average of 22 months and seven doctors for
the average Lyme patient to be diagnosed with a Bb infection.
This follows the fact that many people infected with Lyme disease do not
remember being bitten by a tick, which can further delay treatment. The
inability to diagnose and treat Lyme disease in a timely fashion may be adding to the number of patients who suffer from chronic symptoms.
It is estimated that as many as
15 to 20 percent of Lyme patients suffer from persistent and chronic symptoms.
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Treatment:
Lyme disease is a bacterial infection and like other bacterial
infections it is treated with antibiotics. Antibiotics
are administered orally, with intramuscular (IM) injections, or intravenously
(IV) through the veins. Combinations of these delivery methods are
common. This multiple or "shotgun" approach to antibiotic therapy is
used in hopes of affecting the Bb organism in as many ways as possible.
Lyme
patients often ask, "Why am I affected by symptoms different from other
Lyme patients?" Another question is, "Why won't an antibiotic that
works for someone else work for me?" Just as no
two Lyme patients appear to be affected by Lyme bacteria in the same way, a
patient's response to antibiotic therapy is highly individual, too. We
don't know exactly why this is so, however, there is speculation:
- Different
strains of the bacteria react differently to each antibiotic.
- The
duration of the infection can affect the response.
- So
too can the amount of time between the onset of symptoms and treatment.
- Also,
the location of the Bb organism in the body.
- Co-infections
(see below).
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Testing:
The diagnosis of Lyme disease
remains clinically based or based primarily on symptoms alone. This is
because there is no common test available that can accurately rule out or
confirm Lyme infection. Amazingly, the lack of a common test also means that medical science
cannot precisely determine whether someone is cured of Lyme disease.
This situation leads to contradictory treatment guidelines that are often more
guesswork than many patients prefer, and less exact than many physicians and
health insurance companies are comfortable with.
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Current
testing for Lyme disease mainly includes testing for antibodies to the Bb
organism. This results in partial
guesswork where false positive results and false
negative results are common. The ELISA and Western Blot tests are the
most common antibody tests for Lyme disease. The Lyme Urine Antigen Test
(LUAT) is a newer antibody test that is also being used by Lyme literate
physicians.
A
more accurate and somewhat more expensive test is the Polymerase Chain
Reaction (PCR) test. It is designed to confirm that Lyme bacteria are present.
A positive PCR test almost always guarantees that Lyme disease is present,
depending on the accuracy of the lab performing the work. However, because it
can be difficult to isolate the Bb organism's DNA, a negative PCR test does
not eliminate a Lyme disease diagnosis.
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Lyme
Disease Basics PT II:
Lyme disease is complicated and confusing. After all, if medical
science can't agree on the diagnosis and treatment of Lyme disease then
how can Lyme patients and their families understand this devastating illness?
It is my hope that this article will help you understand the basics of one of
the fastest growing
In
the last issue of Spotlight on Lyme we looked at the following areas of
concern as they relate to Lyme disease:
Co-infections:
Co-infections can include more than one strain of the Bb organism and
may include the tick-borne disorders of Babesiosis and/or
Ehrlichiosis. Babesiosis and Ehrlichiosis are also bacterial infections that
present Lyme-like symptoms. However, treatment is often handled in a different
manner from Lyme disease. Information on co-infections is relatively
new. For this reason all Lyme patients-new patients and those with
established, long-term symptoms-need to request additional tests for
Ehrlichiosis and Babesiosis if they have not already been performed.
Unfortunately, there is no common test to determine which strain or strains of
the Bb organism are present.
Jarisch-Herxheimer
Reaction:
Without an accurate and
common test for Lyme disease, the Jarisch-Herxheimer
reaction is often used as a clinical diagnostic tool to help determine the
presence of Lyme bacteria. A
Herxheimer reaction occurs in Lyme patients after they begin antibiotic
therapy. It is important to note that a Herxheimer reaction is not a
common reaction that is associated with most other diseases or with other
viral, bacterial or fungal infections. It
is limited to a few specific bacterial infections such as syphilis and Lyme
disease. Both are spirochetes and spiral-shaped bacteria.
A Herxheimer reaction occurs when symptoms recur or
flare up. Some call it a healing crisis because the patient gets worse before
they get better. A Herxheimer reaction
usually occurs within days to weeks of starting antibiotic therapy. In simple
terms, a Herxheimer reaction occurs when Lyme bacteria are killed off more
quickly than the body's organs (kidneys and liver) are able to process them.
This increases the number of toxins in the blood stream. The higher the toxin
count, the more severe the symptoms the patient experiences.
Some
health care professionals believe that a Herxheimer reaction can confirm that
the Bb organism is present in the body by the fact that a bacteria die-off is
causing the herx. If the die-off coincides with antibiotic use, it can confirm
the effectiveness of the antibiotic. Thus, for the frontline physician, the Herxheimer
reaction can assist in the clinical diagnosis by unofficially confirming the
presence of the Bb organism.
In
Conclusion
1:
This article just touches the surface of what we think we know about
Lyme disease. In the next edition of Spotlight on Lyme, Part II of this two
part series will focus on the use of antibiotics in fighting Lyme disease. We
will look at how antibiotics work and why more than one antibiotic is usually
needed for treatment. We will also look at the devastating survival tactics
that the Bb organism uses to evade both antibiotics and our immune system.
Antibiotics:
Lyme disease is a bacterial infection caused by a spirochete
(spiral-shaped bacteria) called Borrelia burgdorferi (Bb). Like other
bacterial infections it is treated with antibiotics. Antibiotics are
administered orally, with intramuscular (IM) injections, or intravenously (IV)
through the veins.
Physicians not only prescribe
more than one oral antibiotic at a time, but they combine oral antibiotics
with IM or IV antibiotics. This shotgun or multiple approach to antibiotic
therapy is used in hopes of affecting the Bb organism in as many ways as
possible.
Just as no two Lyme patients
appear to be affected by Lyme bacteria in the same way, a patient's response
to antibiotic therapy is highly individual, too. The individual nature of an
antibiotic's effect on a patient is believed to be due in part to the theory
that different strains of the bacteria
react differently to each antibiotic. Other factors may include the duration of infection, the amount of time
between the onset of symptoms and treatment, and the location of the Bb
organism in the body. Also, co-infections or the transmittal of more than one
infectious disease can occur from a single tick bite. Co-infections may
include more than one strain of the Lyme bacteria and may include the
tick-borne disorders of Babesiosis and/or Ehrlichiosis. See Part I for more
information on co-infections.
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The
Politics of Lyme Disease:
One of the more perplexing questions about Lyme disease is why a three
to six week course of antibiotics won't eliminate the disease for everyone.
Before we speculate on how the bacteria evades the body's defenses we first
have to look at the politics of Lyme disease to see why Lyme
patients often have difficulty receiving adequate antibiotic treatment.
Some
health care professionals are more tradition-bound and conservative in their
approach to Lyme disease. They have
adopted protocols for treating Lyme disease that don't go much beyond
relatively short-term antibiotic therapy. This
group believes that in almost all cases just one or two courses of oral
antibiotics are all that are required to eradicate the bacteria. They believe
that persistent, chronic Lyme symptoms are not the result of an ongoing
infection in the body. They believe that what appears to be a Lyme
infection is probably the result of a dysfunctional auto-immune system
response or some other process occurring in the body.
Others-especially
those physicians who remain on the frontline of the long-term treatment of
Lyme patients-believe that Lyme bacteria are not always eliminated by
short-term courses of antibiotics. They believe that this is especially true
if the disease went undiagnosed and untreated for months or years following
infection.
Further,
this latter group believes that the Bb
organism can persist through months and even years of antibiotic therapy,
depending upon a wide range of individual factors relating to the patient and
to the strain(s) of bacteria. The
survival characteristics of the bacteria themselves play a crucial role in
Lyme bacteria's persistent longevity.
Remember,
it is believed that Lyme bacteria can shift to a dormant state by entering and
residing in a human cell or by encapsulating itself in the body's protein.
Some believe that this has the effect of neutralizing the body's defensive
mechanism and the offensive mechanism employed by antibiotics.
If
it is true that Lyme bacteria can evade antibiotics by shifting to a dormant
mode it has serious consequences for the diagnosis and treatment of chronic,
persistent symptoms. Specifically, this means that conservative treatment
protocols, which call for short-term courses of antibiotics, may actually
prolong some cases of Lyme infection. If
chronic Lyme symptoms are the result of an active, late-stage Lyme infection,
any delay in full and comprehensive antibiotic treatment may have devastating
results for the Lyme patient.
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The
Bad News:
Even though physicians can out-maneuver some of the Lyme bacterium's
survival tactics-such as using combinations of antibiotics-there are those who
believe that antibiotics alone cannot eliminate the Bb organism if it is in a dormant
or sleeping state. Remember, it is believed that Lyme bacteria can
shift to a dormant state by entering and residing in a human cell or by
encapsulating itself in the body's protein. Some believe that this has the
effect of neutralizing the body's defensive mechanism and the offensive
mechanism employed by antibiotics.
Mechanism
of Action: Antibiotics and other
anti-infective agents (anything that counteracts infections) can kill
different kinds of bacteria. However, an antibiotic's mechanism of action-or
how they kill bacteria-varies depending upon the type of antibiotic used.
Because the mechanism of action varies among antibiotics, a specific
antibiotic or combination of antibiotics may be a better choice than other
combinations when treating Lyme disease.
For
example, penicillins and
cephalosporins circulate mainly in the body's fluids and are incapable of
entering cells where the Bb organism can reside. This indicates that
these classes of antibiotics may not be able to eradicate Lyme bacteria from
the body, especially Lyme bacteria that reside in human cells or those that
move away from blood blow and towards other parts of the body.
However,
other classes of antibiotics, such as macrolides like Zithromax (azithromycin)
are known to have higher tissue concentration levels when compared to the
blood concentration levels it usually attains. Zithromax is also known to have
an ability to penetrate some cells in our body more effectively than other
antibiotics. This may counteract Lyme bacteria that have the ability to enter
certain types of our cells. Thus, Zithromax is prescribed specifically to
attack Lyme bacteria that may become established within the body's cells,
along with killing Lyme bacteria residing outside the cells in deep tissue
areas.
Survival
Tactics: There appears to be two
major ways that Lyme bacteria evade the body's defenses and antibiotic therapy.
First, research shows that Lyme bacteria can use the body's own protein to
encapsulate it self. This is also described as the Lyme bacterium shifting to
a dormant or sleeping state. The reason that the organism undergoes
this change is not fully understood. Some believe that this is a survival
tactic because it may not be possible
for our immune system to destroy the bacterium when it is in this state. Also,
antibiotics may have little or no effect on the Bb organism when it is
encapsulated and dormant.
Second,
research also shows that the Lyme
bacterium appears to be able to enter certain types of human cells.
This ability may also be considered a
survival tactic because it results in the bacterium evading some or all
antibiotics as well as the body's immune system.
However,
the final piece of this puzzle has to be considered a genetic marvel no matter
how devastating it is to Lyme patients. When
Lyme bacteria have successfully survived attacks from our body's defenses and
from antibiotics by shifting to a dormant or sleeping state, they shift back
to an active state and resume reproduction and effectively re-seed the body
with Lyme bacteria. This reestablishes the Lyme infection. If it is
true that dormant bacteria can wake up and re-seed the body, this particularly
devastating maneuver indicates that short-term courses of antibiotics may be
ineffective in eradicating Lyme bacteria from the body.
In
Conclusion 2:
Science in general and medical
science in particular, prefers absolute and unmistakable testing, data and
conclusions on which to base treatment guidelines. Lyme disease was not
recognized in the United States until 1977. Scientific research is lagging and
there is much we don't know. Based on current scientific knowledge, the
diagnosis and treatment of Lyme disease cannot be absolute and certain.
Instead-and no matter how unsettling this may be-until research catches up,
the treatment of Lyme disease cannot be anything but subjective, open to
question, individualized, and often complex.
Medical
science will continue to be perplexed and divided about Lyme disease until
proper testing options become available. This has serious consequences for
Lyme patients who are often left to fend for themselves in a confusing and
contradictory medical environment. In an ideal world, people who are in
various stages of illness - many of
whom have been incapacitated by their Lyme symptoms -should not be put in this
situation by a medical system whose purpose is to help, not frustrate their
recovery. Being open-minded is a start. TOP