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No Warranties or Representations
The data and information presented in this web site are presented in good faith and believed to be accurate regarding Lyme disease (commonly misspelled lymes disease lyme's disease lime disease limes disease) and other related diseases. Any and all liability for the content or any omissions including any inaccuracies, errors, or misstatements in such data or information is expressly disclaimed. The web site is compiled for the sole purpose of informing community members of resources and information pertaining to Lyme Borreliosis Disease and its coinfections. Lyme disease symptoms may vary from person to person.
The Canadian Lyme Disease Foundation, Directors and members are not liable for any direct or indirect damages or any damages whatsoever resulting from loss of use, data or profits, whether in an action of contract, negligence or other tortious action arising out of or in connection with the use or performance of information available from this website.
Consult a qualified Lyme ( Borreliosis ) Disease literate doctor for medical advice if Lyme Disease is suspect.
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The Chronic Lyme Disease Controversy
by Angenette Rice-Figueroa,
One of the clinicians interested in chronic Lyme is Dr.
Joseph Jemsek, founder of the Jemsek Clinic in
Huntersville, North Carolina. Dr. Jemsek's practice treats
thousands of HIV, CFIDS and chronic Lyme patients from
across the country. In this interview, Dr. Jemsek offers
some thoughts on the chronic Lyme puzzle.
Q.Do you think chronic Lyme exists? A. Yes, I certainly
do. As early as 1985 I diagnosed and treated an occasional
patient with Lyme disease. Based on that experience, I am
convinced that the Borrelia burgdorferi bacteria that cause
Lyme disease can persist and cause chronic or recurrent
symptoms. I also believe that chronic Lyme is the
ringleader in many other illnesses, especially when
symptoms of immune dysregulation exist.
Q. What are the problems with testing methods? A. The
biggest problem is a lack of standardised testing, and the
tests we do use can be problematic, especially if they are
performed either too early or too late into the illness.
Too early into he illness antibodies aren't being created
yet, while too late into the illness the immune system is
no longer making antibodies. ELISA is not a true screening
test because it's not proficient or sensitive enough to
detect Borrelia burgdorferi. We use the Western blot
testing method at the Jemsek Clinic because it looks for
more unique and specific antigens.
Q. Can you explain a little more about what the ELISA and
Western blot are screening for? A. Both tests indirectly
detect infection by detecting antibodies in the blood
serum. The presence of an antibody doesn't always mean an
active infection is present, but it does indicate exposure
to the infectious agent. The absence of antibodies doesn't
necessarily mean that there is no active infection. Our
bodies make antibodies in response to foreign attackers
like infection. The first antibody created is usually
immunoglobulin type M or IgM. It takes about four weeks to
make IgM in quantities large enough to be measured. The
antibodies typically stay in circulation for about six
months and then the detectable levels decline. If the
infection persists and the IgM levels remain detectable,
the Lyme patient is chronically ill. The second, more
potent antibody is the IgG, which is made after IgM. IgG
takes four to eight weeks to form, and peaks at about six
weeks. Because the two antibodies are different, there are
two separate tests to detect their presence. When testing
patients, physicians should specifically order either the
IgM or IgG ELISA or Western blot.
Q. What other illnesses do you see in chronic Lyme
patients? A. A disruptive, chaos-causing chronic infection
like Lyme may be harboring other diseases. In addition to
the obvious overlap with CFIDS and FM, we see many disease
associated with chronic Lyme. We find celiac disease up to
10 percent of the time, but it's only supposed to be
present in 1 percent of the population. We've seen thyroid
nodules, thyroid disease, dysmenorrhea, atypical ALS,
atypical MS, Crohn's disease, the list just goes on and on.
There are also co-infections caused by microorganisms in
the deer ticks that carry Lyme bacteria. Studies have shown
that co-infections like ehrlichiosis, babesiosis,
bartonella and Rocky Mountain spotted fever can be present
with more severe symptoms and can be more difficult to
treat than Borrelia.
Q. When should people diagnosed with CFIDS be tested for
chronic Lyme? A. When the NIH finally took Lyme disease
seriously, they developed criteria and we had a symptom
complex we could follow. At that time patients either had
Lyme disease or they didn't. However, the three major
symptom categories of chronic Lyme that overlap with CFIDS
- cognitive dysfunction, central nervous system
irritability and fatigue - make it hard to tell he
difference between the two illnesses especially if there's
no tick-associated rash. But if PWCs have any neurological
symptoms that are otherwise unexplained, they should be
tested for Lyme bacteria without question.
Q. Aside from lab tests, how can you screen a CFIDS patient
for chronic Lyme? A. Since there aren't any particular
signs of chronic Lyme, we sit down and talk to the patient.
During that conversation we might find that a PWC had a tic
or tremor or shooting pain that he or she didn't tell
anybody about before, indicating an unexplainable
neurological symptom. At that point we'd test for Lyme
bacteria. If the test is positive, the patient's response
to antibiotics becomes critical. If we prescribe
antibiotics and the patient has some sort of unexpected
bizarre effect or intensification of symptoms, or if new
symptoms develop, then we try different treatment regimens
until we find one that works.
Q. Is long-term treatment of chronic Lyme really effective?
A. We know that treatment is controversial, but in
targeting Borrelia burgdorferi we tend to have pretty good
clinical success in the vast majority of patients. There's
an art to treating a patient and to letting that patient's
body detoxify, so we attempt to craft a rational antibody
program that often requires different combinations and
sequences of medications over a period of time. Because
chronic Lyme is a complex multisystemic disease, issues of
pain and sleep also have to be addressed in addition to the
bacterial infection. Typically, after a few weeks of
treatment, a patient's cognition is improved and a lot of
the neurological symptoms will improve. Fatigue is probably
the last symptom to turn around. Two studies have indicated
that longer-term antibiotics make no difference in treating
CFIDS patients. It's my feeling that you can't base
treatment of serious morbid illnesses like CFIDS or chronic
Lyme on one or two studies.
Q. What happens when you get the patient that no one has
been able to diagnose? A. Other doctors will say, "We don't
know what it is, but we know it's not chronic Lyme." And
sometimes they're right. We don't always have an immediate
answer, but because we see so many other illnesses related
to Borrelia bacteria, we assume it is imbedded in the
nervous system and playing a role in their illness at some
level.
Q. There was a vaccine for Lyme disease at one time, but it
was taken off the market. What happened? A. The vaccine was
called Lymerix, and it was a colossal disaster. Basically,
the vaccine itself was making people sick by triggering
treatment-resistant Lyme arthritis and other chronic
arthritic disorders. Further study into the case found that
about 30 percent of the population carries a gene that
might develop this autoimmune arthritic disease if given
the vaccine. The drug's makers created the vaccine without
understanding the basic physiology of the organism in the
tick versus the human in terms of changing its surface
antigens. They didn't recognize that Borrelia could be an
asymptomatic imbedded infection. I think it'll be a long
time before we have another vaccine.
Q. Why don't clinicians know more about chronic Lyme? A.
Many clinicians believe that chronic Lyme is easily cured
and therefore don't take the disease seriously. It's mostly
a matter of having the scientific evidence to prove to
clinicians that chronic Lyme exists, and unfortunately we
don't have that right now. We're at a primitive state as
far as the clinical science is concerned. In the past year
there's been an upturn in basic science reporting about
chronic Lyme in both the United States and Europe, so
interest in this illness is growing.
Q. Some people believe chronic Lyme and CFIDS are sexually
transmitted. What do you tell your patients? A. I know that
Borrelia is a clever organism that's a member of the
syphilis family. When people ask me, I have to tell them I
don't know if these illnesses are sexually transmitted or
not. There's no research to support either school of
thought. I just advise people to take precautionary
measures.
Q. Why is there such controversy over chronic Lyme? A.
That's not an easy question to answer. Doctors have to rely
on the literature available to them, and unfortunately that
literature is full of antiquated ideas. Therefore, some
physicians tend to trivialise or deny its existence. The
biggest disparity in opinion is between those in academic
medicine and the doctors who actually treat chronic Lyme
patients. The academicians believe that the most
debilitating chronic Lyme, often referred to as
neuroborreliosis, is hard to catch, over-diagnosed and
easily cured in a few weeks. Treating physicians know that
treatment protocol for chronic Lyme can last for months,
and they very seldom refer to a patient as cured because
relapse is always a possibility. HIV has a $2 billion
research budget and millions of published articles, yet
everything we know about it changes every few months. So
how can we as clinicians be dogmatic about the existence
and treatment of another serious chronic illness?
Q. Where does the burden fall for research into chronic
Lyme diagnosis and treatment? A. We have to get the
scientists involved and excited about chronic Lyme. The
responsibility for research doesn't fall into one
particular category. Our situation with chronic Lyme and
CFIDS is similar to the situation with HIV in the 1980s in
terms of funding and research. There are thousands of
diseases to learn about, and right now chronic Lyme and
CFIDS just aren't at the top of the list. I think it'll be
another 5 to 10 years before that happens. I do believe
that if we learn more about chronic Lyme and the cause of
CFIDS we're going to unlock the key to a lot of chronic
illnesses.
Footnote:
Dr. Joseph Jemsek is the founder of the Jemsek Clinic.
Prior to opening the Jemsek Clinic, he practiced infectious
disease and internal medicine for 21 years at the Nalle
Clinic in Charlotte. He is board certified in both internal
medicine and infectious disease. His special interests
include HIV/AIDS, persistent Lyme disease or chronic
neuroborreliosis, chronic fatigue syndrome, fibromyalgia,
chronic sinusitis and general internal medicine. Visit his
website at < a href="http://www. jemsekclinic. com">jemsekclinic .com
Sidebar: Did You Know?
* Lyme disease is named for Lyme, Connecticut, where a
cluster of cases occurred in the early 1970s. Today it is
acknowledged as the most common vector-borne disease in the
United States.
* Lyme disease is transmitted by tiny deer ticks that are
infected by a bacterium, or spirochete. A tick on the skin
does not automatically mean you have an infection. Common
sites for ticks are warm and moist areas, such as the
genital area, behind the knees and on the neck.
* Research shows that an infected tick usually has to be
attached to your skin for at least two days to transmit
Lyme bacteria, but some clinicians believe it can be
transmitted in as little as five hours.
* If you have a bull's eye rash around the area of a tick
bite, you most likely have Lyme disease, which may or may
not become chronic. However, the rash is absent in at least
25 - 35 percent of people who become infected.
* Lyme disease can result in crushing fatigue and can
affect the nervous system, causing severe headaches, pain
or weakness in the limbs and poor muscle movement. These
symptoms overlap with CFIDS, further complicating diagnosis
of both illnesses.
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