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.
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, ALS or Lou Gehrig's disease, Parkinson's disease, and others.
Some patients do not receive any definitive diagnosis long after the
presentation of symptoms and may even be repeatedly told that they are fine.
Early signs of Lyme
disease include flu-like symptoms and in possibly less than 50% of cases, a
Lyme rash. The symptoms include muscle aches, joint pain, fatigue, fever and
headache. Symptoms may show up days or weeks and occasionally months
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
too light in color to be noticed. The rash can be or may not 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.
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.
Tick bite (deer tick or
Rash at bite site
and/or at other sites
- however, many patients don't remember seeing a rash
under hair or elsewhere
like a bruise
change (loss or gain)
Unexplained hair loss
Irritable bladder or
Sexual dysfunction or
loss of libido
Change in bowel
function (constipation, diarrhea)
Chest pain or rib
Shortness of breath,
cough, heart palpitations, pulse skips, heart block
Joint pain or swelling
Stiffness of the
joints, neck, or back
Muscle pain or cramps
Memory impairment or
loss ("brain fog ")
processing impairment (trouble finding things, getting lost)
Slowed processing of
Rapid mood swings that
may mimic bipolarity
Twitching of the face
or other muscles
Neck creaks and cracks,
burning or stabbing sensations
Facial paralysis (Bell's palsey)
loss, blurry, pain, increased floaters
ringing, ear pain
balance, increased motion sickness
wooziness, difficulty walking
concentration or reading
short term memory
lost, going to wrong places
Difficulty with speech
Disturbed sleep: Too
much, too little, early awakening
Exaggerated symptoms or
worse hangover from alcohol
Heart murmur or valve
Excessively itchy skin
Hands and/or bottom of
muscle pain which jumps around the body.
involved with Lyme disease agrees that early detection and treatment of Lyme
disease significantly improves the chance of a decent 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.
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.
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, some reasons
1. Different strains of the
bacteria react differently to each antibiotic.
2. The length of time that
the infection remained untreated can affect the response.
3. So too can the amount of
time between the onset of symptoms and treatment.
4. Also, the location of the
Bb organism in the body.
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 can lead to more guesswork
than what would ideally be good for patients. Actual treatment for Lyme
disease is less than exact which may lead to arbitrary coverage being
determined by health insurance companies.
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 physicians but not in
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.
disease is complicated and confusing. Possibly due to the degree of
complication, medical science can't
agree on the diagnosis and treatment of Lyme disease and its coinfections.
This leaves Lyme
patients and their families with more difficulties trying to understand
tick-borne illnesses. Although it is not
easy to learn about Lyme disease, patients are
left with little choice other than to educate themselves.
Areas of concern as they
relate to Lyme disease:
can include more than one strain of the Bb organism and may include the
tick-borne disorders of Babesiosis, Ehrlichiosis, Bartonella, Mycoplasma,
Anaplasmosis and so on. Babesiosis, caused by a protozoa and Bartonella and
Ehrlichiosis are bacterial infections and all can present Lyme-like
symptoms. Treatment for co-infections may require different
antimicrobials than medicines used for Lyme disease. Information on
co-infections is relatively new and new discoveries could be made at any time.
For this reason all Lyme patients, both new patients and those with
established, long-term symptoms may want to request additional tests or tick
panels that include co-infections if they have not already been performed.
Unfortunately, no current test is said to be able to accurately determine
which organisms are present. This means that a diagnosis of the presence or
absence of infection from tick borne disease depends on a clinical evaluation,
where the blood tests may or may not indicate the reality and the doctor must
evaluate the risk factors, symptoms, etc, in addition to laboratory tests.
Additional re-testing may be required and also may be beneficial to help
determine a patient's infective status.
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 including Syphilis and Lyme disease which are both caused by
spirochetes, or spiral-shaped bacteria.
A Herxheimer reaction
occurs when symptoms increase while a patient is taking antibiotics.
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 and eliminate them. This increases the number of
toxins in the blood stream. The higher the die-off, the higher the toxin
count, the more severe the symptoms are that the patient experiences.
Some health care
professionals believe that a Herxheimer reaction can help to confirm that the
Bb organism is present in the body by the probability 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.
about Herxheimer Reactions, go to:
This information just
touches the surface of Lyme disease. The next section will focus on the use of
antibiotics in fighting Lyme disease, how antibiotics work and why more than
one antibiotic may be needed for treatment. It's important to look at the
complicated survival tactics that the Bb organism uses to evade both the
antibiotics and our immune system and therefore how it can cause devastation
to our bodies.
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, or with intramuscular (IM) injections, or intravenously
(IV) through the veins.
Physicians may prescribe
more than one oral antibiotic at a time and they may also combine oral
antibiotics with IM or IV antibiotics. This shotgun or multiple approach to
antibiotic therapy is used in hopes of attacking the Bb organism in as many
ways as possible.
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 length of time the infection
went undiagnosed and untreated, the amount of time between the onset of
symptoms and treatment, and the location of the Bb organism in the body.
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,
Ehrlichiosis etc. See co-infections.
Bad News: TOP
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 particularly if it is in a dormant
or sleeping state. Remember, it is believed that Lyme bacteria can morph, or
shift to a dormant state by entering and residing in a human cell or it can
encapsulate itself in the body's protein. Recent work by Dr. Alan MacDonald
suggests that another reason some patients become chronically sick with Lyme
disease is because the spirochetes form a bio-film. The spirochetes
appear to have complex ways of neutralizing the body's defensive mechanism and
neutralizing the offensive mechanism employed by 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 may not be
capable 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.
classes of antibiotics, such as Macrolides like Zithromax (Azithromycin) seem
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
Note that some
antibiotics such as Doxycycline, work effectively as bactericides at
high levels (higher doses) and as bacteriostats at lower blood
levels. (-cide: killing the bacteria; -stat: keeping the
status quo, or keeping the growth of new bacteria down) If there is any
question of the efficacy of the Doxycycline levels in a patient's blood, then
a Peak and Trough titer could be done.
There appears to be two major ways that Lyme bacteria evade the body's
defenses and also evade antibiotic therapy. First, research shows that Lyme bacteria can
use the body's own protein to encapsulate itself. 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
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.
below: pleomorphism where Borrelia spirochete changes form
Science in general prefers
the absolute. Medical science in particular, tends to trust in - or -
depend upon - an ideology of an absolutely unmistakable testing process, with
results that give indisputable, nearly 100% accurate data but which are
terribly lacking for Lyme disease. Regardless, many conclusions for
treatment or denial of treatment are based on these tests. Although the CDC
states that testing is for surveillance criteria only and that, to diagnose
and treat, a clinical evaluation of Lyme is suggested, patients continually
report that the results of their blood testing was used as a sole diagnostic
tool and was then followed by a strict adherence to IDSA treatment
guidelines. Ironically, the IDSA does qualify most of their guidelines with
words like "Most patients usually" or In most cases" but
practicing physicians and medical journalists who interpret the guidelines do
not allow for - or give a second thought to - the cases that fall outside the
normal range of the Bell Curve. If there were 2 million people estimated
to have had Lyme disease, following the estimate that 15 to 20 percent of Lyme patients
may develop chronic symptoms, then there
may already be as many as 300,000 to 400,000 who fall outside the Bell Curve who do not get
well and who are being dismissed as not important. Whatever the number
is, every year, as new cases happen, more people are also added to list of the
Lyme disease was not
recognized in the United States until the late 1970s. With over 18,000
published scientific articles on tick borne
diseases there is still much we don't know. Good news:
Doctors who are treating
the more difficult cases say that based on current scientific
knowledge, enough can be done to diagnose and treat Lyme disease.
Therefore the good news is that tick-borne diseases can be treated and
patients can be helped. Additionally, patients will fare better when the medical and
scientific community ends their feud. We believe that issues
of tick-borne disease must remain open to question and that, for any
discussion of Lyme disease, medicine shouldn't make absolute claims. Treatment must be
individualized when cases are complex.
science will continue to be perplexed and divided about Lyme disease and we
can only guess what needs to happen for the issues to be resolved. The
consequence for Lyme patients is that they are often left to fend for
themselves in a confusing and contradictory medical environment. In an ideal
world, patients suffering from Lyme symptoms would not be put in this situation by a medical system whose
purpose is to help, not frustrate their recovery. The best way for
patients to help for their own sakes and for all, is to become educated and to
speak out to educate others.
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.
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
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 particular strain(s) of bacteria the
patient contracted. In fact, Dr. Benjamin Luft's recent work, reported
in 2008, proved that a virulent strain of Bb exists.
characteristics of the bacteria themselves play a crucial role in Lyme
bacteria's persistent longevity. As previously mentioned, 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.
it is true that Lyme bacteria can evade antibiotics by shifting to a dormant
mode this has serious consequences for the diagnosis and treatment of chronic,
persistent symptoms. Specifically, this means that conservative
treatment protocols, calling for short-term courses of antibiotics, could
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 a Lyme