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05-0797 Lyme Disease.p65
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Al Tagliabue, MEd
Director of Student Personnel
and Community Services, Jackson, NJ (Ret.)
Learning Consultant, Calais School
Richard I. Horowitz, MD
Internist, Private Practice, Hyde Park, NY
Vice President, Board of Directors, International Lyme &
Associated Diseases Society (ILADS)
Andrea Gaito, MD, FACR
Past President, International Lyme & Associated Diseases Society
Rheumatolgist, Private Practice, Basking Ridge, NJ
Diplomate, American Board of Internal Medicine and
Dorothy Pietrucha, MD, FAAP
Director, Division of Pediatric Neurology
Medical Director, Child Evaluation Center
Jersey Shore Medical Center, Neptune, NJ
The ABC’s of
Pat Smith, BA
President, Lyme Disease Association, Inc.
Vice President of Political Affairs, International Lyme &
Associated Diseases Society (ILADS)
Former President, Wall Township Board of Education, NJ
Former Chair, Governor’s Lyme Disease Advisory Council, NJ
Lyme Disease
The nervous system is frequently affected by Lyme disease.
Both the central and peripheral nervous systems are at risk.
Frequently, patients with Lyme disease develop an
encephalopathy resulting in learning disabilities, difficulties
with attention span, memory and word finding, and the
patients complain of headache. Acutely, a person may also
have a Lyme meningitis with inflammation of the covering over
the brain and spinal cord. They may have an inflammation of
the brain itself called encephalitis. Nerves can be involved, such
as the 7th nerve causing a facial palsy, or peripheral nerves
causing neuropathy with sensory changes and weakness. There
have been rare cases of stroke, and patients may have seizures
with Lyme disease. In children, we can also see increased
pressure in the nervous system called pseudo tumor. This also
results in headaches and may also affect vision. The muscles
may be involved and this can cause weakness and pain.
Some diagnostic tests that may be helpful in evaluating the
nervous system include an MRI of the brain, EEG, spinal tap,
SPECT scan, EMG’s and nerve conduction studies.
In addition to treating the Lyme disease with appropriate
antibiotic therapy, medications may have to be given to help
relieve some of the symptoms and the discomfort that patients
have as a result of involvement of the nervous system. They may
require anti-convulsants for seizures, diuretics to decrease the
intracranial pressure, analgesics for pain, appropriate education
intervention if there are learning problems, and physical therapy
for weakness.
It is important for physicians and patients to recognize how
frequently the central and peripheral nervous systems may be
involved in Lyme disease.
There are several other organisms found in ticks which
when transmitted alone, or in combination with Lyme disease,
may account for increased severity of symptoms and or
persistence of illness. These organisms cause diseases which
include, but are not limited to, Ehrlichiosis, babesiosis,
bartonellosis, Rocky Mountain spotted fever, Powassan
encephalitis, Q fever, tick paralysis, anaplasmosis, and
Ehrlichiosis may cause high fevers, headaches, myalgias,
and flu-like symptoms. Clinical laboratory findings may include
positive antibody titers for Human Monocytic Ehrlichiosis (HME)
and Human Granulocytic Ehrlichiosis (HGE now called
anaplasmosis), with morulae in leukocytes (intracytoplasma
colonies), and low white cell counts, low platelet counts with
elevated liver functions in certain patients.
Babesia microti is an intracellular parasite found in red
blood cells which causes a malarial like illness. Children may
complain of intermittent fevers, chills, day and night sweats,
as well as having an increased severity and duration of Lyme
disease symptoms. Diagnosis is made by antibody titers (IFA),
blood smear, DNA (PCR) and RNA analysis (FISH assay).
Antibiotic treatments include atovaquone and azithromycin,
and clindamycin and quinine.
Bartonella henselae are intracellular bacteria that can
be transmitted either by a cat bite or scratch or a tick bite.
When present in combination with Lyme disease, atypical
presentations may result including visual problems,
headaches, significant lymph node enlargement, resistant
neurological deficits, and the new onset of a seizure disorder.
Diagnosis is made by acute and convalescent antibody
titers (IFA) and by PCR (DNA) analysis.
STARI, Southern-tick associated rash illness, also called
Master’s Disease, is a Lyme-like illness caused by Borrelia lonestari,
bacteria carried by the lone star tick.
Continued severity and/or persistence of illness in a child
or adolescent with Lyme disease necessitates searching for
these other tick-borne diseases, both by titers and serial PCR’s.
Treatment regimens are still evolving, but significant clinical
improvement may result once all overlapping co-infections
are found and treated.
Lyme disease can cause a variety of arthritic manifestations
in children that can mimic many other rheumatological
disorders. It can present with monoarticular arthritis, but
more commonly will develop into a migratory polyarthritis.
Joint swelling frequently does not occur, but may
occasionally be seen in late stages of the infection. Patients
often complain of “traveling” arthritis. The most commonly
involved joints are the knees, hips, neck, wrists, hands and
temporomandibular joints.
It is not uncommon for a patient to have concomitant
muscular pain. The muscle pain is most often found to be in a
diffuse pattern, and not localized to the classic “trigger point”
locations seen in fibromyalgia. Children with Lyme disease may
also experience morning stiffness, rest pain and muscle
weakness. Difficulties in the child’s ability to participate in sports
activities will be noticed. Inflammatory myopathies, such
as dermatomyositis and polymyositis have also been
documented in chronic Lyme disease.
The proper evaluation of these patients should include
the appropriate serology for tick-borne disorders, accompanied
by levels for antinuclear antibodies, rheumatoid factor,
and creatinine kinase and sedimentation rate. Cross-reactive
antibodies against the Lyme bacteria may yield low levels
of false positive autoantibodies. Appropriate antibiotic
treatment should be given until the joint and muscle
symptoms dissipate. Partial treatment may result in the
development of chronic arthritis.
Children may display a multitude of medical symptoms that
can make it impossible to keep up in class. Common educational
problems for these students include memory loss, fatigue,
depression and the inability to organize, focus and sustain
attention. All of these factors have a negative impact on their
ability to perform academically. Children whose illness affects
school performance may qualify for special education
accommodations or services.
Students with disabilities may receive services under either
the Individuals with Disabilities Education Act, IDEA, where
classification type depends on how severely the illness impacts
learning ability or Section 504 of the 1973 Rehabilitation Act,
civil rights legislation that prevents discrimination. Students
qualify for 504 services if their medical condition “substantially
limits” their ability to learn. Students with Lyme disease often
fit into 504, due to their ever-shifting medical and educational
condition. Schools preschool through college that receive federal
funding must meet 504 requirements.*
School district special education policies adopted by the
board of education should be examined. Policies that mandate a
waiting period for home instruction do not apply to long term
home instruction under an Individualized Education Program,
IEP. IEP’s should be written so that students with Lyme can attend
school when medically able and be concurrently eligible for
supplemental home tutors, or they can receive home instruction
without a waiting period. An extended school year can be written
into an IEP, and all subjects and subject levels that are offered in
a school setting must be offered, with modifications as necessary,
to a student on home instruction. The parent is an integral part
of the child study team, and as such, must be informed and be
an active participant in the process of making educational
decisions for the student.
specii ii iall ll lll ll ly for
Parents & Edu
d ducators
resented by:: :: :
iiat ii iiion ,, ,,, Inc .. ...
Funding research projects from coast to coast.
% Is a national all-volunteer 501(c)(3) corporation.
% Has raised over $2 million for Lyme to date.
% Devotes over 95 cents of every dollar to programs.
% Partnering with Time for Lyme affiliate and Columbia
to open endowed Lyme Research Center.
% Helps children with Lyme get a proper education.
% Sponsored first national medical conference focusing on
Lyme Disease in Children & Adolescents.
% Has seven national affiliates, five state chapters and a major support
program in Lyme endemic areas and a coalition partner.
% Published book for 8-12 year olds with Lyme
% Established LymeAid 4 Kids fund for kids with no insurance
yyme Diseas
Disease A sso
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Other recommended resources:
Lyme Disease Association, Inc.
A n A
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Re search,
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& Patient Support
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8 888) 366-6
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E-mail:: :: : Lyme
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05-0797 Lyme Disease.p65
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iatriiiiic Overviiiiiew:::::
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Martin D. Fried, MD
Director, Pediatric Gastroenterology and Nutrition
Assistant Program Director, Department of Pediatrics
Jersey Shore Medical Center, Neptune, NJ
hherapy Suppo
Charles Ray Jones, MD
Pediatrician, Private Practice, New Haven, CT
Eric L. Singman, MD, PhD, Neuro-Opthalmologist
Director, Family Eye Group, Lancaster, PA
Sandy Berenbaum, LCSW, BCD
Brewster, New Y ork
Brian Fallon, MD
Director, Lyme Disease Program, New York State Psychiatric
Associate Professor, Clinical Psychiatry, Columbia University, NY
Lyme disease is a significant infectious disease that has
become much more common lately with the encroachment of
human development on natural areas. Adolescents and children
are probably at a higher risk for this illness because they spend
more time in areas where they might suffer a bite from a tick
carrying the infectious spirochete (Borrelia burgdorferi). As a
neuro-ophthalmologist, I see Lyme disease patients presenting
with a number of ocular findings, including optic neuritis,
anterior uveitis, keratitis, dry eye, and episcleritis. Furthermore,
these patients seem to have central nervous defects, including
hyperintense white matter lesions of the brain and even an
arachnoiditis leading to intracranial hypertension. Because of
the neurasthenic effects of this illness, patients often present
with reading difficulties such as fatigue, tearing, letters running
together, or double vision.
Lyme disease can mimic so many diseases, including multiple
sclerosis, chronic fatigue syndrome and fibromyalgia. Therefore,
a young patient’s health care team must ensure that the patient
has been correctly diagnosed. Intracranial hypertension is a
difficult diagnosis, particularly when it presents in an uncommon
If Lyme disease attacks the optic nerve, it can lead to
blindness. For this reason, examining just the eyes might not
elucidate the etiology of a child’s or adolescent’s vision problems.
Neuro- ophthalmologists are particularly trained in examining
the entire visual pathway.
Current research indicates that the Lyme disease bacteria,
Borrelia burgdorferi, can be transmitted within hours after an
infected tick attachment. Failure of parents and teachers to
recognize Lyme disease early in its course can result in a child
developing a chronic difficult to treat infection in the brain, eyes,
joints, heart and elsewhere in the body. In my experience treating
5,000+ children birth to 18 with Lyme disease, 50% have no tick
attachment history, 10% or less have an erythema migrans
(bullseye rash) history, but all have a history of living in or having
visited a Lyme endemic area and have a decline in the way they
play and perform in school. They are tired, wilt easily, have dark
circles under their eyes and are sick.
Lyme disease has a profound negative impact on a child’s
life, cognitive function and ability to perform maximally in
school. Severe fatigue unrelieved by rest results in decreased
stamina and a decreased ability to play and to do school work.
Insomnia, headaches, nausea, abdominal pain, impaired
concentration, poor short-term memory, an inability to sustain
attention, confusion, uncharacteristic behavior outbursts and
mood swings, fevers/chills, joint pain, dizziness, noise and light
sensitivity, and difficulty thinking, expressing thoughts, reading,
writing, and making decisions as well as a feeling of being
overwhelmed by schoolwork plague a child with Lyme disease.
Pain and impaired cognitive function make it difficult to sustain
attention and to learn and recall new material.
Although Lyme is usually transmitted by Ixodes scapularis
(deer) and Lyme-like STARI (Southern tick-associated rash
illness) by Amblyomma americanum (lone star) ticks, it can
also be transmitted in utero and through breast milk. These
children, frequently floppy with poor muscle tone, are
irritable and ill early in their lives with frequent fevers,
increased incidence of ear and throat infections, pneumonia,
joint and body pain. They have gastroesophageal reflux, small
windpipes (tracheomalacia), cataracts and other eye
problems, developmental delay, learning disabilities, and
psychiatric problems. All respond to months or years of
continuous antibiotic therapy.
When Lyme disease is a possible diagnosis, the children
should be evaluated by a Lyme knowledgeable physician who
will continue antibiotic therapy until all Lyme symptoms resolve.
In most circumstances, Ixodes scapularis tick attachment
should be treated with one month of antibiotic therapy.
Lyme disease, particularly if it is chronic, affects the lives of
children and adolescents in three major areas: Family, School,
The family might find the Lyme patient to be irritable and
jumpy, depressed or anxious, and constantly complaining.
Disturbances in eating and sleeping patterns are common. In
adolescents, the role of hormones further complicates the
picture. Mood swings often accompany physical complaints.
School issues can be considerable, and vary from day to day.
Fatigue, cognitive and mood problems, and symptoms that might
be seen as ADD or AD/HD may get in the way of school attendance
and academic performance.
Children with Lyme often complain about feeling isolated.
Profound fatigue can limit, or prevent, socialization. Peers often
fail to understand the variations in the levels of functioning from
day to day, resulting in their not believing their friends when
they complain of their Lyme symptoms. The Lyme patients’ lives
are further complicated by trips to the doctor, pills they have to
take, blood work and other diagnostics. Their experience of life
sets them apart from their peers, and the gap that is created can
be very difficult to bridge.
Psychotherapy and family therapy with a Lyme-literate
psychotherapist can help in the process of recovery from Lyme
disease through developing in patients and parents:
% An understanding of the nature of the illness, and strategies
to deal with it.
% The ability to cope with the flare of symptoms and side
effects of medications, yet function at the highest possible level.
% The ability of parents to advocate on the child’s behalf in
% Enhanced communications and problem-solving, within
and outside of the family.
Lyme disease is a medical illness that calls for non-medical
strategies, to assure the growth and success of your children.
Lyme disease has been reported in the gastrointestinal tract
of children and adolescents. Pediatric gastrointestinal Lyme
disease may present as abdominal pain, vomiting, diarrhea,
heartburn, blood in the stool, and it may mimic Crohn’s disease
or colitis. Blood tests for diagnosing Lyme disease may be
negative while gastrointestinal and other Lyme disease symptoms
persist. The diagnosis is made clinically on the basis of symptoms
and by excluding other possible etiologies.
Once treatment has begun with antibiotics, most patients
reported a decrease in the frequency and severity of their
abdominal pain. In addition to antibiotics, a low fat diet further
alleviated some of the abdominal symptoms associated with Lyme
disease. In patients who reported having a crampy, colicky, below
the belly button pain, treatment also included antispasmodic
and anticholinergic medications.
After treatment was completed, some residual abdominal
pain may persist for a couple of months at a markedly reduced
level of severity. This diminished pain usually represents the
activation and persistence of the immune system to fighting the
infection even long after the infection is gone.
In addition to Lyme disease, other co-infections such as
Bartonella, mycoplasma, H. pylori and babesia have been
confirmed to occur in the GI tract.
Children with Lyme disease may develop neuropsychiatric
symptoms affecting mood, thinking, and behavior. The infection
itself may have direct effects on the brain or indirect effects
through the activation of the immune system which produces
substances which affect the brain. For example, marked fatigue
would result in trouble paying attention or staying awake in class
as well as struggles with parents about getting to school on time.
Common psychiatric presentations in younger children
include irritability and increased separation anxiety or other
fears. In older children, mood swings and anxiety attacks are
more common. Less frequently, children may develop new onset
motor or vocal tics, obsessive compulsive disorder, or rarely a
regression that looks very much like an autistic spectrum
Common cognitive problems include trouble with visual and
auditory attention and slower mental processing speed. Children
with unrecognized Lyme disease may be misdiagnosed as
having primary attention deficit disorder – a mistake that not
only results in unnecessary school problems for the child but
also may allow a treatable acute infection to become a more
entrenched chronic one. For example, these children may have
trouble directing or maintaining focus on what the teacher says
in class or storing into memory what he/she reads. The decline
in school performance alarms parents and may result in a
lowering of the child’s self-esteem such that he/she feels stupid -
until the cause is identified. Neuropsychological testing may
reveal that the child’s IQ has declined considerably, with the
performance subtests more heavily affected than the verbal
subtests. School systems must make special accommodations
for these medically-disabled children.
As an adjunct to the medical work-up of these children, brain
SPECT scans can be helpful in differentiating primary psychiatric
disorders from the secondary neuropsychiatric effects of a diffuse
brain illness such as Lyme disease.
r rsed by:: :: :
ecialllll t
t thanks to the foll
s for su
l licatio
i ion of thi
h his brochu
h hure:: :: :
IGeneX, Inc.
Inter na
oonal Lyme & A sso
ssociat ed
eed D is
iisease s So
s So cie
A Professional Medical and Research Organization
©2000-2005 ABC’s of Lyme Disease is copyrighted by Lyme Disease
Association, Inc. All rights reserved. Third Printing 7/05 - 100K
For permission to reprint contact: LDA, PO Box 1438, Jackson, NJ 08527
A specialty immunology laboratory and research facility, providing
personalized service to over 1,000 private practice physicians, hospitals, and
other clinical reference laboratories throughout the U.S. and Canada.
Telephone (800) 832-3200.
North Jersey Lyme Support Group
For F
or Fur
uurther R
ther Reading on S
eading on School I
chool Issues
dding :: :::
Tager FA, Fallon BA, Keilp J, Rissenberg M, Jones CR, Liebowitz MR. A controlled study
of cognitive deficits in children with chronic Lyme disease.
J Neuropsychiatry Clin Neurosci 2001 Fall;13(4):500-507.
tther R
R R ea
eea di
d di
Smith, P. The Effects of Lyme Disease on Students, Schools and School Policy.
School Leader, New Jersey School Boards Association, Sept/Oct 2004.
This brochure is designed to provide practical and useful information
on the subject matter covered. However, it is being distributed with the
understanding that the LDA is not engaged in rendering medical or
other professional services. If medical or other expert assistance is
required, the services of a competent professional should be sought.
Fallon BA, Kochevar JM, Gaito A, Nields J. The Underdiagnosis of Neuropsychiatric Lyme
Disease in Children and Adults. In Diagnostic Dilemmas. Edited by David Tomb.
Psychiatric Clinics of North America, 1998; 21: 693-703.
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