Lyme Disease: The Misconceptions
Lyme disease is the number one vector-borne disease in the
United States. It is a silent epidemic, and there are many misconceptions
about this disease. Dr. Ross responds to the most common
Many doctors believe Lyme disease is not an issue
in their geographic region.
Lyme disease is becoming prevalent
across all of the United States (and around the world) This includes the
West Coast and Washington State. Ticks do cross geographic boundaries;
for instance, they have been found on more than 40 species of migratory
birds. Deer and the white-footed mouse are two animals (among others)
that are a regular part of the tick life cycle. While deer carry the ticks,
mice and other small mammals are carriers of the ticks as well as the
infectious micro-organisms. Uninfected ticks acquire the microorganisms
when they bite an infected animal. Next time they feed, which can be months
later, they can then potentially pass the microorganisms on to the animal/person
who is bit. Ultimately, ticks, pets and people all travel, creating a
dynamic situation with potential for infection.
In the state of California, an analysis
of Ixodes pacificus ticks has demonstrated that the ticks carry
Borrelia burgdorferi, the organism that causes Lyme disease,
in 42 counties, with a majority of these in the northern part of the state.
Additionally the problematic tick species have been found in all counties
except for two. There is no published information that the states of Washington
and Oregon have done similar analysis for the presence of infected ticks.
In the last three years the CDC has
reported between 20,000-25,000 new infections nationwide each year. Their
reporting criteria is for surveillance only and significantly stricter
than needed (as acknowledged by the CDC) to recognize and diagnose Lyme
disease, and hence these numbers are a gross under-representation of the
number of actual new annual infections. In contrast, the CDC has reported
an average of 40,000 new HIV infections for each of these years –
with much more “sensitive” (better) tests. We illustrate these
numbers because chances are you are very familiar with the issues around
HIV due to very good public awareness campaigns, familiarity with people
infected, publicity about research and fund raising, etc. In one study
the health ramifications of chronic, untreated/inadequately treated Lyme
disease demonstrated that it is comparable for numerous parameters with
late-stage diabetes and heart failure for decreasing quality of life and
ability to function (study website: www.lymeproject.com;
Principal Investigator: Daniel Cameron, MD, MPH). Yet, funding, research,
public awareness, medical awareness and help for those infected with Lyme
disease are far behind that available for HIV/AIDS, diabetes or heart
When there is a known bite, some doctors still believe that Lyme disease
cannot be diagnosed without the typical bulls-eye (erythema migrans) rash
and positive lab results.
Post exposure rashes are found in
only 40-60 percent of cases, and as few as 10 percent of these rashes
are classic erythema migrans (“bull's-eye”) which require
no further verification for diagnosis or for adequate treatment to begin.
In addition the testing is not “sensitive” enough to be used
to screen, let alone rule out, Lyme disease. The CDC reporting criteria
designates that there needs to be a positive Elisa followed by a positive
Western blot. However, these tests, when done at most labs, do not include
some of the most specific “bands” for detecting the organism.
The reporting criteria is acknowledged by the CDC as being used for epidemiological
purposes and not as a replacement for a clinical diagnosis (one based
on symptoms and history).
A negative test result consistent with the two-tiered screening system
set up by the CDC for official reporting of the disease means that a person
does not have Lyme disease.
Lyme disease is a clinical diagnosis.
The CDC surveillance criterion which is based on positive lab results
is for surveillance only. It was never set up to be used as diagnostic
criteria, nor were they meant to define the entire scope of Lyme disease
(the CDC clearly acknowledges this). A positive test can be used to very
strongly support a clinical diagnosis; however a negative result cannot
be used with accuracy to exclude the diagnosis of Lyme disease.
Laboratory tests at this point are
not sensitive enough to be used adequately for screening, let alone ruling
the disease out. ELISA tests are only 65 percent sensitive (in culture-proven
Lyme cases) and by definition screening tests should be 95 percent sensitive.
Western blot testing has a similar sensitivity. Since both of these tests
look at antibodies, they are even less sensitive early in infection before
adequate antibodies are being made, and then again late in infection when
the immune system is subdued and the micro-organism uses stealthy mechanisms
to evade detection by the immune system. PCR tests, which look for the
genetic material of the micro-organism, have decent sensitivity if done
on a biopsy of an actual skin lesion. However blood and plasma PCR has
only been shown to be about 20 percent sensitive (they miss infections
80 percent of the time).
With patients having culture-positive
Lyme disease, 20-30 percent remain seronegative on serial Western blot
testing. Labs that are the most thorough in their testing include IGenex
and Medical Diagnostic Laboratories (there may be others). IGenex also
tests ticks for infectious micro-organisms, so it is worthwhile saving
a tick once removed for this purpose.
Lyme disease is caused by a single micro-organism.
Lyme disease may be caused by Borrelia
species spirochetes alone; however more commonly there will be a combination
of this organism with co-infecting micro-organisms that ticks also frequently
carry. These include Bartonella, Babesia, Erlichia as some of the most
common. Besides the co-infections, in chronic cases of Lyme disease with
resulting immune and endocrine dysfunction there are commonly additional
opportunistic infections or resurfacing of dormant infections that are
able to prosper and can include any number of micro-organisms.
A person cannot have contracted Lyme disease
without a known tick exposure.
Less than 50 percent of people diagnosed
with Lyme disease recall having been bitten. Ticks in their nymphal and
juvenile stages are smaller than a poppy seed or pin head and exposure
is very easy to miss. University of California-Berkeley published research
in 2004 in which researchers sat on logs throughout the state for five
minutes at a time and in 30 percent of these instances there was tick
exposure on close examination. Other risk factors include the prevalence
of ticks and Lyme disease in the areas that a person visits as well as
lives in, time spent outdoors, the presence of pets (which can carry ticks
indoors), the prevalence of deer or mice and rodents in their area or
other wildlife (including migratory birds), and the frequency of yardwork
done professionally or recreationally.
After an infected tick bite, flu-like
symptoms can appear right away or within a few weeks, or the infection
can go dormant for months. They can even appear years later, depending
on a person's immune function, general health and other stressors, infections
or toxic exposures all of which contribute to “total body load.”
We also now know that the spirochete has a cyst form that is very resistant
to changes in temperature, oxygen, pH, and most antimicrobial drugs. These
cysts are even hidden from the immune system. As such the cyst form can
morph back into the spirochete form if favorable conditions occur later,
and this is postulated to be the reason that some people have relapses
of symptoms and the infection.
The main symptom of Lyme disease is red, swollen joints.
Doctors often still think the classic
sign of Lyme disease is inflamed, swollen joints, and although this classic
joint involvement does occur in a small percentage of people, the larger
majority who have joint involvement experience joint pain that comes and
goes, wanders from one area of the body to another, includes pain in the
muscles, tendons and ligaments around the joint. It very often does not
include any redness or swelling.
Common symptoms that occur with initial
infection include flu-like symptoms with fatigue, head-ache, muscle ache,
possibly joints aching (not necessarily swollen). Lyme disease should
be considered in the differential diagnosis of symptoms that present like
MS, ALS, Parkinson disease like syndrome, Guillain-Barre like syndrome,
cranial nerve disturbances, visual or sound hypersensitivity, seizure
and other neurological conditions, cardiac (heart) abnormalities, as well
as arthritis, Gulf War Syndrome, ADHD, hypochondriasis, fibromyalgia,
CFIDS, somatization disorder, various psychological disorders and patients
with various difficult-to-diagnose multi-system syndromes. This is not
even an exhaustive list of conditions – symptoms of Lyme disease
can imitate those of other health conditions too.
Only the deer tick, Ixodes scapularis, carries Lyme disease.
At this point it is well documented
that other species of tick in the same genus as well as other genii/species
also carry these infectious micro-organisms. Additionally there is sufficient
research to support that the Lyme spirochete does pass across the placenta
from an infected mom to her baby. (The likelihood of this happening can
be decreased with prophylactic antimicrobials that are compatible with
pregnancy.) Borrelia burgdorferi has also been found in breast
milk; however there is not a consensus regarding whether to recommend
or discourage breast feeding by an infected mother at this time. It can
also be isolated in male ejaculate, although there has not been follow
up research demonstrating whether it can in fact be transmitted sexually.
Clinically, doctors who treat many Lyme patients do see that there is
a high occurrence of couples and of whole families being infected. This
leads to many questions, theories and postulations as to why. Hopefully
funding and much needed additional research will follow that will lead
to more conclusive answers.
A tick needs to be attached for a minimum of 24 hours to have delivered
Although laboratory studies have
demonstrated that it does take a significant number of hours to eject
these microorganisms from the tick gut contents into a host, newer research
has demonstrated the presence of these micro-organisms in the salivary
apparti (mouth parts) of ticks. So theoretically infection may occur even
as soon as the initial bite when ticks secrete both anti-coagulant and
anti-pain substances from their salivary apparati. This is backed up by
substantial clinical evidence in which people have contracted Lyme disease
after having been exposed to a tick for very limited time periods, well
under those previously established as sufficient enough for exposure.
To remove an attached tick you should touch it with a burning match or
something very hot, or grab it firmly with a tweezers and pull it out.
By using heat or chemicals to try
to get a tick to release its grasp or by grabbing it firmly with a tweezers
on its body a person is likely to elicit regurgitation of gut contents,
increasing the likelihood of infection. The proper way to remove a tick
includes using narrow-nosed tweezers and grasping the tick around its
mouth parts as close to the person’s skin as possible and very gently
pulling away from the skin. Ticks can then be sent to IGenex for analysis
for infectious micro-organisms.
Lyme disease can be cured with four weeks of antibiotics.
According to The International Lyme
and Associated Diseases Society, there has never in been one study that
proves absolutely – even in the simplest way – that 30 days
of antibiotic treatment cures Lyme disease, especially in chronic infections.
However there is a plethora of documentation in the U.S. and European
medical literature demonstrating histologically (in tissue) and in culture
that short courses of antibiotic treatment fail to eliminate
the Lyme spirochete.
Although there are still doctors
who believe the Infectious Disease Society of America IDSA (not ILADS)
recommended short course antibiotic regimen is adequate in all cases,
this is not current with the most recent research and clinical evidence.
Treatment, which often involves herbal or prescription antibiotics, can
last from weeks to months to years, depending on whether it is a new or
chronic infection. Improvement is usually slow in chronic cases. (A chronic
infection has been present for more than one year.) An uncomplicated case
of chronic Lyme disease requires an average of 6-12 months of high dose
antibiotic therapy. The return of symptoms and evidence of the continued
presence of Borrelia burgdorferi indicates the need for further
For treatment to be effective it
must be multifaceted. If antimicrobials are used, usually a combination
must be utilized to affect the various forms of Borrelia as well
as those of the co-infecting micro-organisms. This also means that a physician
must treat any other ongoing infections and various organ systems of the
body that are involved to help support health and immune function and
decrease total load to better enable the body to cope with the infection.
This can’t be accomplished by relying on antimicrobials alone. This
comprehensive whole body approach to treatment beyond relying on pharmaceuticals
may include a whole range of botanicals, natural supplements, diet, detoxifying,
homeopathy, physical medicine, pain management, specific organ and endocrine
support, as well as other prescribed medications and other approaches
as appropriate for each patient’s individual needs.
Taking antibiotics for more than a few months causes more harm than good.
According to the International
Lyme and Associated Diseases Society and research at Columbia University,
the very real negative consequences of untreated chronic persistent infection
far outweigh the potential consequences of long-term antibiotic therapy.
Many patients with Lyme disease require treatment for one to four years
or until the patient is symptom-free for two to three months. Relapses
do occur and maintenance antibiotics may be required. There are no tests
available to assure us.
Learn about the special
qualifications of Dr. Marty Ross of The Healing Arts Partnership in dealing with Lyme disease.