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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

Rheumatology

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

STARI.

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.

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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

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Other recommended resources:

http://Columbia-Lyme.org

http://www.LymeNet.org

http://www.Lymeinfo.net

http://www.ILADS.org

http://www.IGeneX.com

http://www.LymeDiseaseAssociation.org

Lyme Disease Association, Inc.

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http:www.ideapractices.org

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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

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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

Institute

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

way.

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,

Peers.

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

school.

% 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

disorder.

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.

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A Professional Medical and Research Organization

For permission to reprint contact: LDA, PO Box 1438, Jackson, NJ 08527

.IGENEX.COM

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

www.IGENEX.COM

.IGENEX.COM

For F

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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.

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Smith, P. The Effects of Lyme Disease on Students, Schools and School Policy.

School Leader, New Jersey School Boards Association, Sept/Oct 2004.

see http://lymediseaseassocation.org/Schools.html

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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