2 LymeTimes

About CALDAThe CaliforniaLyme DiseaseAssociation(CALDA) is a non-profit corporationthat acts as thecentral voice for alltick-borne diseaseissues in Californiaand a supportingvoice for nationalissues. Through

The national Lyme DiseaseAssociation has manyaccomplishments focusingon children:

About the LDA

The Lyme Timeswishes to thank theLDA for allowing usto use some of thelanguage from theirfabulous brochureon children: TheABCs of LymeDisease. Thisbrochure can beobtained in full from

• Only fully certified national Lyme disease medical con-ference focusing on children.

• Brochure devoted to children with Lyme disease (TheABC’s of Lyme Disease).

• First book written for children with Lyme (Lyme Dis-ease Is No Fun: Let’s Get Well!).

• NJ professional development provider (credits for LDworkshop attendance by teachers).

• Article in a school journal from school board perspec-tive (NJ School Boards Association “School Leader”The Effects of Lyme Disease on Students, Schools,School Policy).

• Fund, for children without insurance, LymeAid 4 Kids,supported by author Amy Tan.

• Federal News Service Best Practices in School HealthLyme Module, LDA interview & ABCs used.

• In-serviced Rhode Island School Nurses & NJ Div. ofYouth & Family Services nurses.

• School advocacy work IEP/504.

• Student & Scout presentations.

• TV and radio interviews, Lyme & schools.

• Appeared in Time for Lyme school video; grant toLAGKC for Kansas school nurse packets.

LDA funded child-oriented research projects:

advocacy and education of the public and healthcareprofessionals, CALDA seeks to prevent tick-bornediseases, encourage early diagnosis, and improve thequality of healthcare provided to people with tick-bornediseases.

Activities:• Publishes the Lyme Times, a lay journal, which is

distributed nationally and internationally;• Shares its best practices with other states and

national organizations through the CALDAwebsites (see calda.intranets.com andwww.lymedisease.org);

• Acts as a central resource for patients, physiciansand support groups providing technical supportfor their local education and advocacy efforts;

• Instigates and coordinates statewide advocacyefforts;

• Works with statewide governmental and localhealth agencies, medical associations and tick-borne disease physicians, universities, insurancecompanies, and diagnostic laboratories;

• Serves on the California Lyme Disease AdvisoryCommittee established by SB1115;

• Maintains a statewide speakers bureau of doctorsand patients who can speak with the press orphysician groups.

• First law in the country tomandate Lyme diseaseteacher in-services (NJ).

• NJ State-adopted Lymeschool curriculum.

the LDA website atwww.LymeDiseaseAssociation.org

The Underdiagnosis of Neuropsychiatric Lyme Disease inChildren and Adults” Brian Fallon, MD, The Psychiatric Clin-ics of North America. IQ has been shown to fluctuate andcan be restored after treatment for Lyme.

“A Controlled Study of Cognitive Deficits in Children withChronic Lyme Disease,” Felice A. Tager, PhD, Brian A.Fallon, MD, Journal of Neuropsychiatry and Clinical Neuro-sciences. Lyme disease in children may be accompaniedby long-term neuropsychiatric disturbances, resulting in psy-chosocial and academic impairments.

“Borrelia burgdorferi Persists in the Gastrointestinal Tractof Children and Adolescents with Lyme Disease,” MartinFried, MD; Dorothy Pietrucha, MD, Journal of Spirochetaland Tick-borne Diseases. Borrelia burgdorferi and othertick-borne diseases can survive long-term treatment in theGI tract of children.

Summer 2005 3

www.lymedisease.orgCALDA’s originalwebsite, with informa-tion about the organi-zation and about tick-borne diseases. Alsolinks to our allies in thefight against Lyme.

calda.intranets.comCALDA shares its bestpractices on thiswebsite. Documentsyou can download,templates you can use,and links to informativewebsites.

www.lymetimes.orgYou can view anddownload back issuesof the Lyme Times aspdf files.

Journal of the California Lyme Disease Association

Check out ourwebsites

LYME TIMESContents5 Tick-Borne Diseases in Children and Adolescents

by Sandy Berenbaum, LCSW, BCD

7 Pediatric Lyme Disease: Diagnosis and Treatmentby Charles Ray Jones, MD and *Steven J. Harris, MD

14 Chronic Lyme Disease in the Pediatric Populationby Sam T. Donta, MD, Falmouth Hospital, Falmouth, MA

16 Bibliography of Lyme Disease Studies in Childrenby Lorraine Johnson, JD, MBA

19 When to Suspect Lyme Disease in Childrenby Ginger Savely, FNP-C

21 Lyme Disease in the Eye: A Pediatric andAdolescent PerspectiveBy Eric L. Singman, MD, PhD, Neuro-Ophthalmologist

22 Gastrointestinal Lymeby Martin D. Fried, MD, Director, Pediatric Gastroenterology & Nutrition

23 Neurologic Manifestations of Lyme Disease in Childrenby Dorothy Pietrucha, MD, FAAP

26 The Pharmacological Treatment of Children & Adolescentswith Tick-Borne Diseasesby Robert C. Bransfield, MD, FAPA, DABPN-P, C-ASCP

30 Reflections on Lyme Disease in the Familyby Sandy Berenbaum, LCSW, BCD

33 A Parent’s Journey Toward the Light

35 Lyme Disease and Pregnancyby Joseph J. Burrascano Jr., M.D.

36 Gestational Lyme Disease Case Studies of 102 Live Birthsby Charles Ray Jones, M.D., Harold Smith, M.D., Edina Gibb, & Lorraine Johnson, JD, MBA

39 Gestational Lyme Disease Bibliographyby Lorraine Johnson, JD, MBA

41 Lyme Aid 4 Kids

42 Join CALDA

43 Helpful Internet Links

4 LymeTimes

Guest Editorial

Entering the world of professional involvement with Lyme disease in 1991, I was astonished to find some of the most compassion-

ate and intelligent doctors, researchers, advocates, patients, and par-ents—all passionate about tackling this disabling disease. From thebeginning, my particular focus was the children. Many had beeninfected when they were very young before they were “fully formed”and had a sense of who they were and what was normal for them.Their needs are therefore far more complex than the needs of adults withLyme. So complex, in fact, that we ultimately found it necessary todedicate two issues to the world of children with Lyme disease—thisspecial children’s treatment issue, and a special children’s educationissue (to be published in the Spring, 2006). We are grateful to PatSmith, who has been tireless in her efforts on behalf of children, forsponsoring this issue.The cornerstone in accurate diagnosis and treatment is the pediatricianand no one has more experience than Dr. Charles Ray Jones, who,together with Dr. Steve Harris, has written our anchor article. Thetreatment of a child is a team effort, however, and we have compiledan incredible team in this issue: Dr. Robert Bransfield on psychiatricmedications, Dr. Dorothy Pietrucha on neurological manifestations ofLyme disease in children, Dr. Ann Corson on treating children withLyme in a more rural environment, nurse practitioner Ginger Savely onthe role of pediatric nurses, Dr. Sam Donta’s treatment study, and Drs.Martin Fried and Singman on gastrointestinal and opthamalogicmanifestations, respectively. This issue also includes the results of thestudy of 102 children with gestational Lyme disease by Dr. Jones andothers as well as extensive bibliographies pulling together for the firsttime some of the most critical studies on children. And this is just thebeginning.Working with Lorraine and Phyllis to put this issue together has beenone of the most gratifying experiences in my years of involvementwith Lyme disease. I believe we have met our goal of providing acomprehensive resource that will help combat the ignorance thatsurrounds Lyme disease in children. While dedicated physicians andresearchers seek long-term solutions that will prevent and cure tick-borne diseases, there is room for the rest of us to play our part incuring that ignorance that exists in the world of these children andfamilies. Our children need Lyme-literate pediatricians, neurologists,psychiatrists, nurses, psychotherapists, family therapists and parentadvocates. We need psychiatric hospitals that will attend to both thepsychiatric and medical needs of those children who require hospital-ization to be safe. We need Lyme-literate family members, friends, andneighbors.Can we do less for our kids? They are, after all, our future.

Sandy Berenbaum, LCSW, BCD

Lyme TimesNumber 42- Summer 2005

Published by the California Lyme DiseaseAssociationLyme Times StaffEditor: Lorraine JohnsonAssociate Editor: Mary Beth FaulknerContributors: Maggie Shaw, Tina Van Diver,

The Lyme Times (Library of Congress cardno.92-595999) is published by the CaliforniaLyme Disease Association, PO Box 1423, UkiahCA 95482

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• $35 - Basic• $50 - Supporting (and institutions)• $100 - Sustaining• $250 - Patron• $1000 and up - Gold Circle• $15 - Special Needs• $45 - InternationalUS funds only. Send check or money order toCALDA, PO Box 707, Weaverville CA 96093

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Disclaimer. The articles in the Lyme Times arenot intended as legal or medical adviceregarding the treatment of any symptoms ordisease. Medical advice of your personalphysician should be obtained before pursuingany course of treatment. The Lyme Timesmakes no express or implied warranties as to theefficacy or safety of any treatment in its articlesor letters and disclaims all liability for any use ofany such treatment. Opinions expressed inarticles are those of the authors alone and arenot necessarily those of the Editor, CALDA, orthe LDA.

Republication of any portion of the LymeTimes without written permission is prohibited.Please contact the Editor if you wish toduplicate articles. To submit articles, please sendelectronic files to <pmerv@direcway.com>.Original articles are preferred. Publisheduncopyrighted articles become the property ofthe California Lyme Disease Association.© Copyright 2005 CALDA

Summer 2005 5

Tick-Borne Diseases in Children and Adolescents:

Multidisciplinary “Cure”

Coming togetheris a beginning.Keeping togetheris progress.Working togetheris success.

~Henry Ford

We in the Lyme world all know that tick-borne diseases are caused bycomplex organisms that can affect just about any part of the body, and werealize that the key to getting well is finding a Lyme-literate doctor, obtain-ing an accurate diagnosis, and comprehensive, efficacious treatment.While treating the medical aspect of the disease is paramount, for childrenand adolescents with chronic Lyme disease, medical treatment alone is notenough. Many of these children have Lyme related psychiatric symptoms oreducational impairments. Their serious symptoms, combined with theduration of the illness, often leads to gaps in their development. Theirisolation can leave them lonely, and inhibit their ability to interact withpeers. These issues are best addressed through the coordinated efforts ofa team.Children and adolescents with chronic Lyme, often meet the Diagnosticand Statistical Manual of Mental Disorders (DSM) criteria for one ormore “mental illnesses”—anxiety disorder, depression, anorexia nervosa,AD/HD, as well as disorders in which behavioral problems manifest—oppositional defiant disorder, conduct disorder, and for some, psychosis.Even though the “mental illness” may be due completely to Lyme, theserious psychiatric symptoms cannot be ignored. For many, psychiatricmedications are essential in managing the symptoms during treatment,including the complex issues of managing symptom flares (JarischHerxheimer reactions), brought on by the antibiotics. Thus, there is aneed for involvement of Lyme-literate psychiatrists who treat children.These “mental illnesses” carry a constellation of issues. The anorecticchildren, for example, often have an aversion to certain foods, or a rigidpattern of eating, and there is an obsessional quality to their thinking,about food and exercise. Some put a pathological spin on suggestionsdoctors make for a “yeast free” diet while on antibiotics, some refuse totake any medications by mouth. Weight gain typical of some Lymepatients terrifies the anorectic, and pathological weight loss brings themcomfort. These issues need to be dealt with in individual and familytherapy to keep the anorectic child safe and healthy during the acutephases of the illness and Lyme treatment.Anxiety is another symptom common to children with Lyme. The anxietypresents for many in their fears about school failure, even as theircognitively impaired brains struggle to succeed. It takes a Lyme-literateteam to deal with the anxious child with Lyme—the medical doctor whotreats the illness, the psychiatrist who prescribes the medication for

A Medical Illness with a Multidisciplinary “Cure”

by Sandy Berenbaum, LCSW, BCD

6 LymeTimes

Multidisciplinary “Cure”

anxiety, the psychotherapist who teaches the childand family strategies for dealing with the anxiety,helps the child learn to think in a different way(cognitively-based therapy is helpful here), and theLyme-literate school team who provides supportand accommodations for the child who has impair-ments that affect learning. The school nurse orguidance counselor can provide a brief respite, andsupport, for the anxious child, in the middle of thechaos of the school day.Behavioral problems are often due simply to the infec-tion in the brain, and will resolve as the illness istreated comprehensively. However, the treatmentcould take a long time, and the behaviors need to beaddressed and managed during these difficult times.Intervention and support of a Lyme-literate psychia-trist and/or psychotherapist, as well as involvementof a parent advocate who develops a plan formanaging behaviors in the school setting can make asignificant difference in the life of the child and thefamily.Attention needs to be paid to the tasks of thevarious developmental stages the child with chronicLyme is going through. The most difficult stage tomanage is adolescence, where the Lyme patient maydeny the illness and resist treatment to be “normal,”in an attempt to individuate. At this stage, some willself-medicate the Lyme symptoms with street drugs.If the child has been ill for a long time, it may bedifficult to distinguish between symptoms of theillness and who the child really is. It is helpful ifthese symptoms are addressed in therapy, as well.

Part of the work of childhood is to develop socialskills, to learn how to interact with others. Childrenlearn this at home, in their communities, in school,on the ball field. When a child is ill with chronicLyme, often her exposure to others is very limited.Some children have been on homebound instructionfor months and years, not even having the schoolcommunity to interact with. Socialization needs canbe addressed in therapy, and for those who areseriously ill, some social experiences can be builtinto their week.While physicians who treat Lyme are focused ondiagnosing and treating the medical illness, it is alsoimportant to recognize that there is more to treatingthe child with Lyme than ridding the body ofinfection. We need an integrated approach thatincludes doctors, nurses, psychiatrists, psychothera-pists, neuropsychologists, educators, and advocates.It is important that we are aware of each other’sroles, and communicate regularly.The impact of Lyme disease on children and adoles-cents is not just a medical issue. By working to-gether to support and treat the whole child, we canhelp our children achieve more than physical health.They can become resilient, life-loving, successfulpeople, and put the nightmare of the Lyme yearsbehind them.

Sandy Berenbaum, LCSW, BCD, may be reached at FamilyConnections Center for Counseling in Brewster, New York at203-240-7787.

I feel that congenital tick borne disease is common in my practice and is becoming a serious problem. Some of my sickest patients are children with congenital LD that are bitten again. So many childrenin my area are being treated for ill defined developmental delays, autistic like syndromes, ADD/ADHD and other psychiatric disorders. Many of my female patients are in their childbearing years. They get pregnant even while still quite ill. I also feel transmission via breast milk is a real possibilityand think two of my patients were infected that way. In my area whole families, whole neighbor-hoods, whole communities are ill. So is the next generation.

Congenital Tick-Borne Disease – A Physician’s View Point

~ Ann Corson, M.D.

Summer 2005 7

Lyme disease is the most common vector-borne disease in this countryand the most common tick-borne disease in the world. The incidenceand prevalence of Lyme disease seems to be increasing, with peoplecontracting infection on every continent on earth except perhapsAntarctica. While an understanding about Lyme disease and its mani-festations is expanding, a tremendous gap remains as to how to prop-erly diagnose and care for Lyme patients. Children are particularly atrisk for an inaccurate diagnosis and inadequate treatment because theirsymptoms are insidious and subtle. Many doctors and researchersneither understand nor study the unique manifestations of pediatricLyme disease; moreover, they fail to acknowledge the high incidence ofcongenital [1, 2] and breast milk [3, 4] transmitted Borrelia burgdorferiinfection.Children are more vulnerable than adults to both exposure and infec-tion because they are physically closer to the ground, and play on theground. They sit on logs [5] and rummage in leaves. They cuddle withpets. Their jungle gyms are near the edge of wooded areas. They goto summer camp and scouting trips. They grow up in the grass andtouch everything. One aspect of Lyme in the young children is theemotional component they suffer. They are inexperienced with han-dling severe difficulties in their lives. Children often get trapped intobelieving that they will be ill or in pain all of their lives. Many with theonset of Lyme early in their lives have never experienced freedomfrom pain or disease. One child came into the office after treatmentwas complete and began saying “I didn’t know anybody could feel likethis.” “I didn’t know my body didn’t have to hurt.” Older childrenhave more reserves and life experiences to draw upon. They oftenknow that this is a temporary setback and that they can get well again.The remarkable aspect of treating Lyme disease in children is thatmost get better [6-8] and many get well, [7, 9] without carrying thestigma of Lyme disease or its co-infections.The manifestations of pediatric Lyme disease depend on the age ofexposure. The age of three has been thought of as a developmentalpoint for particular signs and symptoms to be observed. Those underthree years of age, who were congenitally exposed or early tick exposedto Lyme disease often present with severe hypotonia and developmen-tal delay. [1, 9] They elicit an impaired repository of typical childhoodskills. Speech and language difficulties are pronounced as well as fine

Pediatric Lyme Disease: Diagnosis and Treatment

by Charles Ray Jones, MD and *Steven J. Harris, MD

Children are one-thirdof our population andall of our future.

~Select Panel for thePromotion of Child Health

Pediatric Lyme

8 LymeTimes

examine him, it was only possibleto auscultate his chest if hisforehead was scratched with anindex finger at the same time.Many kids maintain constantmotion in order to stay focused,some clenching their fists, slap-

ping their legs or stomping theirfeet on the ground. Those withgestational, breast milk and earlyexposure to Lyme disease oftenexperience tactile sensitivity, hairsensitivity or light and noisesensitivity. They have troublehandling textures. One boy in ourpractice could not wear clothesfor 5 years, explaining “My skinhurts.” “It feels like someone isrubbing a rasp file on my skinuntil it bleeds; and my hair feelslike someone is taking an ice pickand stabbing me on my head.”This child also had to wraphimself in a sheet in order to staywarm. He presented with head-aches and joint pain. Interestinglyotherwise, this little boy wouldplay normally in the office excepthe wanted to be naked. His

Children are more vulner-able than adults to bothexposure and infectionbecause they are physicallycloser to the ground, andplay on the ground. They siton logs [5] and rummage inleaves. They cuddle withpets. Their jungle gyms arenear the edge of woodedareas. They go to summercamp and scouting trips.They grow up in the grassand touch everything.

and gross motor coordination.Many have visual problems,presenting as convergence insuffi-ciency and/or tracking problems.This often manifests as an inabil-ity to read. It is not that the childis incapable of understanding thematerial but rather that their eyesare not able to maintain focus onthe lines of a page. The eyesjump from one end of the pageto the other, preventing themfrom following what is in themiddle. They have auditoryprocessing difficulties [10], whichcan be observed when the childis not responding to verbal cuesor commands. The child will ask“What?” repeatedly. Theyquestion every situation in whichthey are asked to do a task, oftenrepeating the question. Thesechildren have an increasedtendency towards demonstratingbehavioral problems and moodswings, with excessive irritability[11] and difficulty participating ina large group. They have anincreased tendency towardsdeveloping sensory integrationproblems. It may appear toteachers and psychologists to bean attention deficit disorder but inreality, the trouble arises whenmultiple stimuli are being receivedall at once. They cannot segre-gate incoming stimuli making itdifficult for them to becomefocused on an essential point.The child becomes easily con-fused coupled with erratic behav-ior. For example a little boy inpractice had classic sensoryintegration problems. While in theoffice he could not stop runningaround. In order to properly

Pediatric Lyme

mother had had eight miscar-riages. Miscarriages are commonwith mothers with Lyme disease.[1, 12, 13]While eliciting a history on apatient, one should inquire about

several dimensions of the child’slife. Generally, determine if thechild is acting unusually, demon-strating moody, unfocusedbehavior. Pay particular atten-tion to decreased energy, fatigueand a new onset decline inschoolwork. Additionally, it isimportant to ask about head-aches, [11, 14] sleep disturbance,increased nightmares andupsetting dreams. Many chil-dren show a decreased appetite,are reluctant to play, and oftenexperience both cold and heatintolerance. Irritability [11] andweepiness is common in chil-

dren with Lyme disease. Impairedshort-term memory of new onsetis also a very important sign torecognize. [15] Another feature isnew onset bedwetting and/orencopresis. Joint and generalbody pains are often seen inchildren with Lyme disease andco-infections. New onset asthmais also common. In those pa-tients, asthma usually resolveswhen the Lyme disease resolves.New onset gastroesophagealreflux, nausea with or withoutvomiting, abdominal pain, diar-rhea or occasional constipation ofnew onset are all important cluesto look for when assessing Lymedisease. [16] Frequent urination iscommon, though pain is rarelyseen. A rash compatible witherythema migrans (EM) that

Summer 2005 9

expands over time is another tell-tale sign of Lyme disease. This isseen in only about 7% of ourmore than 7000 patients. Multiplesecondary rashes may be ob-served in Lyme disease as well.These appear and disappearrapidly. During a Jarisch-Herxheimer reaction manychildren develop an erythematousblush, which are discreet and canbe warm to the touch or pruritic.The rash persists as long as theLyme symptoms present. If onealready has psoriasis, tick bitescausing an EM can result in aflare of psoriatic plaques over theEM, making it difficult to distin-guish them. Psoriasis may alsoprogress upon contracting Lymedisease. If a child is expressingdiscomfort when they aretouched, or are favoring one limbfor some unknown reason, it isimportant to consider Lymedisease in the differential diagno-sis.The physician must determine ifBorrelia burgdorferi or other tick-borne infections are causingdisease. For those patients not atgestational or breast milk risk forLyme disease, one should have ahistory of exposure to ticks whileon vacation, playing with pets, orin their own backyard. Exposureto Ixodes scapularis or Ixodes pacificusis particularly dangerous. Famil-iarity with some hallmarks of co-infections can be instructive inobtaining the whole picture of asick child. Rapid diagnosis of co-infections will alter the course oftreatment and recovery. Forexample, while ascertaining if one

has Babesiosis, it is instructive toask if someone else in family hasa Babesia microti infection, includ-ing any of the pets in the house-hold. Symptoms include increas-ing night sweats, intractableheadaches, muscle pain, burningin the feet and a feeling ofwarmth in the soles of the feet.

Ehrlichia (Anaplasma) infectionscan be of sudden onset, causingabrupt fatigue or collapse, chillsand high fever. Ehrlichia patientsmay have a more indolent presen-tation with fatigue and headache.Bartonella henselae commonlycauses headache as well. Oftentimes violacious cordlike stria that

Pediatric Lyme

can be painful are missed on thehistory and exam in a patient thathas Bartonella. A wide array ofnew onset gastrointestinal prob-lems is a common and seriousmanifestation of Bartonellosis.[17] However, perhaps the mostnoted hallmark of Bartonellainfection is new onset psychiatricproblems including: rage, anxiety,paranoia, hallucinations andlearning disabilities. Mycoplasmafermentans, another co-infection,also causes new onset neuropsy-chiatric problems and cognitiveimpairment. The severity ofthese manifestations appear to beeven more pronounced thanthose seen with Bartonella.Gastrointestinal complaintsshould be considered a hint at thepresence of Bartonella henselae orMycoplasma fermentans co-infec-tions.On physical exam the first obser-vation a physician makes iswhether the child appears sick. Isthere the appearance of darkcircles under the eyes? Is thechild less animated than onewould expect for his age. A lot ofchildren will say they feel fine.But if you re-ask the question:“do you wish you felt better?”they say “yes.” Check theirbalance. Is it impaired whenstanding on one foot with theeyes closed? Perform tandem gaittests with eyes open and closed,and then have the child walk ontheir toes and heels. Look fordecreased strength in either onelimb or the whole body. Evaluategrip strength. How well does thechild perform, hopping on one

Dr. Jones is beloved in thecommunity for his treat-ment of children. He hastreated more than 7,000children with Lyme diseaseand has an experiencelevel that is unparalleled.Through his mentorshipprogram, Dr. Jones hastrained a number of physi-cians in the treatment ofchildren at no charge.Physicians work with Dr.Jones side-by-side todevelop first hand knowl-edge of the diagnosis andtreatment techniques thathave made Dr. Jones sosuccessful. Physiciansinterested in learning fromDr. Jones can contact hisoffice to make arrange-ments at 203-772-1123.

Dr. Jones Mentorship

10 LymeTimes

foot? Observe whether the childhas a limp or is favoring a particu-lar limb. Certainly a swollen jointis an important finding, and it’sseen in about 5 percent of pa-tients. This is a contradiction tothe prevailing belief, but never-theless it is important to note.Some clinicians have stated thata child cannot have small jointinvolvement that is associatedwith Lyme disease. However,almost all of them do, andtherefore examine the child forjoint sensitivity. This exam iselicited by gently touching everyjoint in the body, and the exam-iner does not need to put a lotof pressure on the joints.One can distinguish joint sensi-tivity in a child by the subtlemovement away from pressurebefore they even experienceactual pain. This is a reflex thatis difficult to feign. Whentesting cranial nerves, look for adifference in sensation on eitherside of the face. To check blinksynkinesis, have the patient closeone eye, then the other. Inpatients with facialneuroinvolvement, it is commonto see them use other facialmuscles to help them close theireyelid. Look for light sensitivityand noise sensitivity. Assessplantar reflex. Hypo and hyperre-flexia are both seen on deeptendon tests. Look for symmetry. On cardiovascular exam, theblood pressure is usually normal.Listen long enough to heartsounds while the child is sitting,standing and lying down. It isamazing how many arrhythmias

are picked up if one listens longenough. On these childrenperform an EKG andechocardiogram. However, actualheart block in children is rela-tively rare. Only five children inthis practice have had 1st degreeheart block (all of them did fine

on IV and/or oral antibiotictherapy). On pulmonary exam,listen for wheezes and rhonchi.Many will have respiratory exer-cise intolerance. They do notnecessarily have a cough. Nosignificant findings are usuallyelicited on gastrointestinal exam. On dermatological exam, lookcarefully for violacious and bluishstriae. Hypoplasia of nails iscommon, and secondary EMrashes are occasionally seen. Invery young children, it is notuncommon to see multiple

Pediatric Lyme

cavernous hemangiomas. Someare quite large and can causesevere bleeding. Surprisingly,lymphadenopathy is not verycommon in children with Lymedisease. When it is observed, itusually indicates another overrid-ing infection.Of particular interest is theabnormal presentation of avariety of odd movementdisorders with either symmetricor asymmetric presentation.These may also be accompaniedby an upper or lower bodytremor.The Centers for Disease Controland Prevention (CDC) recom-mends the ELISA as a screeningtest. If the ELISA is positive,the CDC recommends that amore definitive test, the LymeWestern blot be performed. [18]However, the ELISA is not avalid screening test because itlacks specificity and sensitivity.In my practice, 1/3 of thechildren with a CDC positiveLyme Western blot have anegative ELISA. A valid screen-

ing test should have false posi-tives not false negatives. In mypractice, I have found that theLyme C6 Peptide ELISA resultsin many false negatives as well.The Lyme Western blot dependson the adequacy of the patient’simmune mechanism at the timeof exposure to the Borreliaburgdorferi spirochete. Immuneparalysis can occur if one isinoculated with a large spirochetalload. By the time the immunemechanism recovers, the Borreliaburgdorferi spirochetes are intracel-

The CDC includes 5 cross-reacting antibodies in theWestern blot: 28, 41, 45,58, 66 kda. These cross-reacting antibodies shouldhave no place in the defini-tion of a positive LymeWestern blot test. One canhave these 5 non-specificantibodies in an IgG West-ern blot and have a CDCpositive Western blot. Thisis absurd! Therefore, theCDC criteria for WesternBlot positivity are markedlywrong....It is not the num-ber of bands, but whichbands are positive that isrelevant.

Summer 2005 11

lular. This is one mechanismunderlying seronegative Lyme.The Lyme Western blot has manyother potential flaws. If thereferent strain(s) of Borreliaburgdorferi used in the Western blotare different from the patient’sexposure strain of Borreliaburgdorferi, the Western blot canbe falsely negative. IgeneXLaboratory uses two referencestrains of Borrelia burgdorferi inperforming the Lyme Westernblot, thereby increasing theprobability of accurate positivity.Another flaw in the Lyme West-ern blot involves the CDCrequirements for positive IgMand IgG Western blots. TheCDC includes 5 cross-reactingantibodies in the Western blot: 28,41, 45, 58, 66 kda. These cross-reacting antibodies should have no placein the definition of a positive LymeWestern blot test. One can have these 5non-specific antibodies in an IgGWestern blot and have a CDC positiveWestern blot. This is absurd! There-fore, the CDC criteria for Western Blotpositivity are markedly wrong.There are 9 Borrelia burgdorferigenus specie specific antibodies:18, 23-25, 30, 31, 34, 37, 39, 83-93 kda. All one needs is one ofthese Borrelia burgdorferi genusspecific antibodies to confirmserological evidence of exposureto the Borrelia burgdorferi spiro-chete to support the clinicaldiagnosis of Lyme disease. TheCDC excludes all but two Borreliaburgdorferi genus specie specificantibodies in Lyme Western blotIgM and includes only 6 Borreliaburgdorferi specific antibodies in

Lyme Western blot IgG. This isalso wrong because no Borreliaburgdorferi genus specie specificbands should be excluded fromIgM or IgG because all of thebands in IgG were once IgM. It isnot the number of bands, but which

bands are positive that is relevant. Inlater stage infection both IgM &IgG may appear indicating lateinfection and persisting infection.DNA by PCR (polymerase chainreaction) can be used to deter-mine the presence of Borreliaburgdorferi and tick-borne co-infections: PCRs are highlyspecific but highly insensitive inurine, blood, serum, synovialfluid, and spinal fluid. If thePCRs are positive one can assumethat the organism is present,however there are many falsenegatives. The PCRs are moresensitive in solid tissue obtainedfrom endoscopy, colonoscopy,placenta biopsy, umbilical cord,foreskin remnants, synovialmembranes, and other solid tissuebiopsies. Thus the diagnosis ofLyme disease remains clinical asthe CDC stipulates.[19, 20] TheCDC surveillance criteria are rigid andexclusive and include an EM rash,arthritis involving one knee, facial

Pediatric Lyme

paralysis, Lyme meningitis, and heartblock. Therefore the CDC case defini-tion excludes many of the patients whohave Lyme disease. Neuropsycho-logical testing, spinal taps, MRIs,and brain SPECT scans are usefuladjunctive tests.Specific treatment for Lymedisease varies case by case. Anti-biotics in various combinations,depending on whether one hasLyme and co-infections, are themainstay of treatment.Amoxicillin has been foundsuccessful in children by itself orin combination withclarithromycin or azithromycin.Cephalosporins are used eitheralone (usually cefuroxime,ceftibuten, cefdinir) or in combi-nation with azithromycin orclarithromycin. Tetracycline,doxycycline and minocycline forchildren over the age of 7, eitheralone or in combination with amacrolide are also effective. Themacrolides and ketolides havebeen effective as monotherapy intreating pediatric Lyme disease.Metronidazole and tinidazole,usually in combination withmacrolides are other choices aswell. The children with pervasivedevelopmental delay (PDD) andgestational Lyme disease respondto metronidazole andazithromycin. In combination,these antibiotics have been foundto be useful in reversing PDD inchildren born with Lyme diseaseand very early onset Lyme disease.Hydroxychloroquine can be usedin treatment for one who has aLyme induced autoimmunereaction. Hydroxychloroquine

Forty-percent of thechildren in my practicehave Bartonellahenselae, Babesiamicroti, Ehrlichia (Ana-plasma), and/or Myco-plasma fermentans co-infections.

12 LymeTimes

can be bactericidal against spiro-chetes and cell wall deficientforms and suppress the autoim-mune reaction triggered by anactive Lyme infection. [21]Children with Lyme disease aremore prone to develop autoim-munity if they are HLA DR4 andor HLA DR2 genotype positive aswell as having a 31 IgG Westernblot. I have observed that chil-dren who have an autoimmunereaction respond favorably toantibiotics, indicating that theyhave a persistent infection drivingthe autoimmunity. The use ofhyperbaric oxygen therapy alongwith the use of an antibiotic canbe a powerful treatment as well.Treatment should extend over 40dives at 2.4 atmospheres. Intra-muscular injections of penicillincan be used for treating neuro-logical Lyme disease, as canintravenous antibiotics: penicillin,ampicillin, ceftriaxone,cefotaxime, imipenem-cilastatin,azithromycin, metronidazole,doxycycline and vancomycin.Ciprofloxacin, levofloxacin, andmoxifloxacin are also effective inthe treatment of Lyme diseaseand co-infections, but are gener-ally contraindicated in childrenunder the age of eighteen (agetwelve for ciprofloxacin). Some-times one can use lower dosesusing two antibiotics and achievefavorable results if the childcannot tolerate necessary dosageswith simply a single antibiotic.Forty-percent of the children inmy practice have Bartonella henselae,Babesia microti, Ehrlichia (Ana-plasma), and/or Mycoplasma

Pediatric Lyme

fermentans co-infections. As is seenin adults, the presence of a co-infection requires treatmentregimen modification. If one hasa Babesia infection, the use ofatovaquone or atovaquone withproguanil (Malarone), andazithromycin or clarithromycin iscurrently the treatment of choice.Hydroxychloroquine orartimesinin may also be used. ForEhrlichia infections, doxycyclineor minocycline should be usedregardless of the age of the child.The duration of treatment isusually shorter, such as 5-7 days ina child under seven as opposed toa longer term treatment (onemonth or longer in older chil-dren). Bartonella infections arebest treated with trimethoprim-sulfamethoxazole, ciprofloxacinwith or without azithromycin orrifampin. Mycoplasma fermentans isdifficult to eradicate. The mosteffective medications includerifampin with azithromycin,tetracycline analogues withazithromycin, or trimethoprim-sulfamethoxazole with rifampin.For these children as well as withchildren who have Lyme diseasealone, duration of treatment ismeasured by clinical response.The criteria used for the cessationof antibiotic therapy is if a childcan: 1) be Lyme symptom-freefor two months; 2) not have aLyme induced flare-up as a resultof another infection, fatigue,emotional trauma or injury; 3) canshow a Western blot that does notreflect active infection and 4) isPCR negative. Many childrenhave been treated very well

without the need for metronida-zole or tinidazole. If a particularmedicine is working and is welltolerated, continue it until theabove criteria are met. [22]Conclusion:1. It does not take long, certainlyless than 24-48 hours, for a smallIxodes scapularis tick or nymph toattach, feed and disseminateorganisms in a young child withsoft, thin, very vascular skin.2. Children with Ixodes scapularistick attachments in the head/neckarea, under the arms or under thecollar bones and in the bellybutton seem to result in Borreliaburgdorferi spirochetes disseminat-ing rapidly to the brain causingearly central nervous system(CNS) symptoms. This mayoccur because spirochetes arecarried by arteries going to thebrain via the circle of Willis.3. In order to eradicate all Borreliaburgdorferi spirochetes, antibioticsshould be continued for 2 monthsafter all symptoms of Lymedisease resolve, for 2 monthsafter they no longer have aJarisch-Herxheimer reaction, for 2months after they no longer havea Lyme flare-up induced by anon-Lyme infection such ascommon cold, chicken pox,influenza, tonsillitis or menstrua-tion. If these criteria are metthen the child’s Lyme diseaseappears cured and all Borreliaburgdorferi spirochetes can beconsidered eradicated. If antibi-otic therapy is stopped prema-turely, before all Lyme symptomshave resolved, then these children

Summer 2005 13

will have a Lyme relapse and have more brain andbody injury by a more resilient, more difficult totreat Lyme organism. There is no evidence that 3-6weeks of antibiotic therapy can eradicate all Borreliaburgdorferi spirochetes and cure Lyme disease. Therehas never been a study in the history of Lymedisease that determines the duration of antibiotictherapy needed to eradicate all Borrelia burgdorferispirochetes. There is, however, ample evidence inthe peer-reviewed medical literature that the Borreliaburgdorferi spirochete can persist after prolonged IVantibiotic therapy of 1month to 1 year or longer.4. Persisting Lyme symptoms indicate a persistingBorrelia burgdorferi infection in need of continuousantibiotic therapy until all symptoms have resolved.5. In children, persisting Lyme symptoms indicate apersisting Borrelia burgdorferi infection and not “Post-Lyme-syndrome”, not fibromyalgia, not MS, notCFS (chronic fatigue syndrome), not a psychiatricdisorder and not another diagnosis.6. Withholding necessary antibiotic therapy canresult in children with Lyme disease having unneces-sary permanently injured lives.7. I have treated and evaluated over 7000 childrenwith Lyme disease. After receiving 3 months to 7years of continuous antibiotic therapy, 75% of thechildren I treat are well and without signs of Lymedisease on follow-up over a period of 1-15 years.One-third of these 7000 children are newly diag-nosed or have a persisting deeply entrenched, moredifficult to treat Borrelia burgdorferi infection, thatresults from a delay in diagnosing their Lymedisease and/or inadequate initial antibiotic therapy.

*Steven J. Harris is a clinical consultant for IgeneX, Inc.

References

1. Gardner, T., Lyme disease, in Infectious diseases of the fetus and newborninfant, J.S. Remington and J.O. Klein, Editors. 1995, Saunders:Philadelphia. p. 447-528.2. Schlesinger, P.A., et al., Maternal-fetal transmission of the Lyme diseasespirochete, Borrelia burgdorferi. Ann Intern Med, 1985. 103(1): p. 67-8.

Pediatric Lyme

3. Schmidt, B.L., et al., Detection of Borrelia burgdorferi DNA by polymerasechain reaction in the urine and breast milk of patients with Lyme borreliosis.Diagn Microbiol Infect Dis, 1995. 21(3): p. 121-8.4. Altaie, S.S., et al. Abstract # I-17 Transmission of Borrelia burgdorferifrom experimentally infected mating pairs to offspring in a murine model., inFDA Science Forum. 1996.5 Lane, R.S., D.B. Steinlein, and J. Mun, Human behaviors elevatingexposure to Ixodes pacificus (Acari: Ixodidae) nymphs and their associatedbacterial zoonotic agents in a hardwood forest. J Med Entomol, 2004. 41(2):p. 239-48.6. Donta, S.T., Late and chronic Lyme disease. Med Clin North Am, 2002.86(2): p. 341-9, vii.7. Donta, S.T. Chronic Lyme disease in the pediatric population, in InfectiousDiseases Society of America 2004 Annual Meeting. 2004. Boston, Massa-chusetts.8. Wilke, M., et al., Primarily chronic and cerebrovascular course of Lymeneuroborreliosis: case reports and literature review. Arch Dis Child, 2000.83(1): p. 67-71.9. Jones, C.R. Gestational Lyme disease: Case studies of 102 live births. May21-22, 2005. Reston, Virginia.10. Bloom, B.J., et al., Neurocognitive abnormalities in children after classicmanifestations of Lyme disease. Pediatr Infect Dis J, 1998. 17(3): p. 189-96.11. Pietrucha, D.M. Neurologic manifestations of Lyme disease in the pediatricpopulation, in 13th International Conference on Lyme Disease and OtherSpirochetal and Tick-Borne Disorders. 2000. Farmington, CT.12. MacDonald, A.B., Human fetal borreliosis, toxemia of pregnancy, andfetal death. Zentralbl Bakteriol Mikrobiol Hyg [A], 1986. 263(1-2): p.189-200.13. MacDonald, A.B., J.L. Benach, and W. Burgdorfer, Stillbirth followingmaternal Lyme disease. N Y State J Med, 1987. 87(11): p. 615-6.14. Belman, A.L., et al., MRI findings in children infected by Borreliaburgdorferi. Pediatr Neurol, 1992. 8(6): p. 428-31.15. Tager, F.A., et al., A controlled study of cognitive deficits in children withchronic Lyme disease. J Neuropsychiatry Clin Neurosci, 2001. 13(4): p.500-7.16. Fried, M.D., M.E. Adelson, and E. Mordechai, Simultaneousgastrointestinal infections in children and adolescents. Practical Gastroenterol-ogy, Nov. 2004: p. 78.17. Fried, M.D., M.P. Abel, D., and A. Bal, The spectrum of gastrointestinalmanifestations in Lyme disease. J Pediatr Gastroenterology & Nutrition,1999. 29(4): p. 495.18. Centers for Disease Control and Prevention, Case Definitions forInfectious Conditions Under Public Health Surveillance, 1997. MMWR.46(RR-10).19. Centers for Disease Control and Prevention, Lyme Disease:Diagnosis (CDC website).20. National Institute of Allergies and Infectious Diseases (NationalInstitute of Health), NIAID’s chronic Lyme disease study: questions andanswers.21. Brorson, O. and S.H. Brorson, A rapid method for generating cysticforms of Borrelia burgdorferi, and their reversal to mobile spirochetes. Apmis,1998. 106(12): p. 1131-41.22. The International Lyme and Associated Diseases Society (ILADS),ILADS Evidence-based guidelines for the management of Lyme disease. ExpertRev. Anti-infect. Ther., 2004. 2(1): p. S1–S13.

14 LymeTimes

Introduction. Lyme disease is an infectious disease caused byBorrelia burgdorferi that frequently produces chronic symptoms, oftenof a vague nature. The basis for these symptoms remains to bedefined, but may be the result of a vasculitis involving the nervoussystem and perhaps other tissues as well. The clinical manifestationsof chronic Lyme disease have been detailed in adults with the disease,but have not been done so in pediatric patients. The purpose of thisstudy was to detail the clinical manifestations of chronic Lyme diseasein the pediatric population, along with their serologic responses,results of brain SPECT scans, and response to antibiotic treatment.Methods: 101 patients aged 2-19 (median age of 14) with multiplepersisting symptoms (88% > 6 months) without any apparent causewere evaluated for possible chronic Lyme disease. The clinical historyincluded the presence or absence of a known tick bite or rash, alongwith a detailing of the clinical symptoms and signs. The results ofEnzyme Immunoassay (EIA) and western blot studies were alsodetailed. Brain SPECT scans were performed on 29 patients. Finally,the results of antibiotic treatment regimens were evaluated, withoutcomes listed as cured, improved, or failed.Results: The most prevalent symptoms were musculoskeletal (90%),fatigue (84%), headache (78%), and cognitive dysfunction (74%).Other diagnostically helpful symptoms included paresthesias (46%),stomach pains or nausea (48%), eye symptoms (40%), and fevers orsweats (39%). 79% of patients had multiple other symptoms (e.g.,dizziness, palpitations, tremors) as well.

Chronic Pediatric Lyme

Chronic Lyme Disease in the Pediatric Population

by Sam T. Donta, MD, Falmouth Hospital, Falmouth, MA

Presented at the 2005 Annual Meeting of the Infectious Disease Society of America in Boston, MA

Symptom Frequency

0% 20% 40% 60% 80% 100%

Fevers and Sweats

Eye Symptoms

Neck Pain

Paresthesias

Stomach Pain or Nausea

Mood Changes

Cognitive Dysfunction

Headache

Fatigue

Musculoskeletal

Medicine’s ground state isuncertainty and wisdomfor both patients anddoctors is defined by howone copes with it.

~Atul Gawandeauthor of “Complications”

Summer 2005 15

Tick bites were known to occur in 24% of patients.Rashes had occurred in 40% of patients (typical rashin 15%, atypical rash in 25%). Bell’s palsy hadoccurred in 5 patients. Brain SPECT scans wereabnormal in 18 patients and normal in 11 patients.

Chronic Pediatric Lyme

Treatment Response and Treatment Duration

Months Cure Improved Failure<3 2 20 4

4-6 8 20 06-8 4 12 0

Frequency of WB Antibody Response

0%

10%

20%

30%

40%

50%

60%

70%

80%

23 30/31 34 39 41 60/62/66 83/93 Other

IgM IgG

kDa

Serologic results showed 1 or more reactions by IgMwestern blotting in 74% of patients and IgG in 82%of patients. EIA were positive in 65% of patientstested.

Treatment with tetracycline or a combination of amacrolide antibiotic with hydroxychloroquine over

4-8 months was associated with cure or sustainedclinical improvement in 75% of patients.

Summary and conclusions:1. Chronic Lyme disease in pediatric patients poses

diagnostic challenges, but the presence ofcertain clinical symptoms over a number ofweeks or months is typical of the disease.

2. Prior exposure to ticks and typical or atypicalrashes occurs in less than half the patients.

3. Typical symptoms are the combination ofmusculoskeletal pain, fatigue, cognitive dysfunc-tion, and other symptoms that are not otherwiseeasily explained.

4. Lyme western blots are more helpful than EIAtests in supporting the clinical diagnosis. The

specificity of the reactions is more importantthan are the numbers of bands present in theblots. IgM reactivity is consistent with chronicactive disease, and usually becomes negative withsuccessful treatment.

5. Brain SPECT scan abnormalities are often seenin patients and can be helpful in supporting theclinical diagnosis of chronic Lyme disease.

6. Treatment with certain “intracellular-type”antibiotics, i.e., tetracycline or a combination ofa macrolide and hydroxychloroquine, is usuallyeffective in curing or resolving most of thesymptoms if given over several months.

16 LymeTimes

Bibliography of Studies on Lyme Disease in Children

Children with the most serious neurocognitive and neuropsychiatric symptoms of Lymedisease generally have not received early diagnosis and adequate treatment. Studies indicate thatchildren who are treated timely and appropriately usually do not suffer continued cognitive defects[3,4]. The need for prompt efficacious treatment is critical to avoid significant persistent problems.Space limitations preclude inclusion of complete abstract. Readers are referred to unabridged ab-stracts at pubmed or to the studies for more comprehensive coverage.

While we try to teachour children all aboutlife,our children teach uswhat life is all about.

~anonymous

Fallon, B. A., J. M. Kochevar, et al. (1998). “Theunderdiagnosis of neuropsychiatric Lyme disease in childrenand adults.” Psychiatr Clin North Am 21(3): 693-703, viii.Lyme Disease has been called “The New Great Imitator,” areplacement for that old “great imitator” neurosyphilis. Thearticle reviews psychiatric and neurologic presentations foundin adults and children, and the features, which make ituniquely hard to diagnose, including the complexity andunreliability of serologic tests. Clinical examples illustratepresentations that mimic attention deficit hyperactivitydisorder (ADHD), depression, and multiple sclerosis.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Tager, F. A., B. A. Fallon, et al. (2001). “A controlled study ofcognitive deficits in children with chronic Lyme disease.” JNeuropsychiatry Clin Neurosci 13(4): 500-7.Although neurologic Lyme disease is known to causecognitive dysfunction in adults, little is known about its long-

by Lorraine Johnson, JD, MBA

term sequelae in children. Twenty children with a history ofnew-onset cognitive complaints after Lyme disease werecompared with 20 matched healthy control subjects. Eachchild was assessed with measures of cognition and psycho-pathology. Children with Lyme disease had significantly morecognitive and psychiatric disturbances. Cognitive deficitswere still found after controlling for anxiety, depression, andfatigue. Lyme disease in children may be accompanied bylong-term neuropsychiatric disturbances, resulting in psycho-social and academic impairments. Areas for further study arediscussed.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Pietrucha, D. M. (2000). “Neurologic manifestations of Lymedisease in the pediatric population.” 13th InternationalConference on Lyme Disease and Other Spirochetal andTick-Borne Disorders, Farmington, CT.Children with neurologic Lyme disease may present acutely

Children’s Lyme Bibliography

Summer 2005 17

with headache, blurry vision, double vision, confusion,irritability, fever, and/or stiff neck. Chronically, they may beencephalopathic and have lingering headache, personalitychange, and depression. The most common lingeringproblem that patients have as a result of involvement of theCNS in Lyme is encephalopathy, which the children call “brainfog.” These children complain of persistent headache andfatigue. There may be personality change, irritability, andfrequently depression. The impact academically is mostsignificant. These children have fall-off in academicperformance, difficulty learning new material, problems withshort-term memory, problems with word finding, and anumber of them have lost reading skills. Frequently, thesechildren may present with a picture of ADD or may have anunderlying ADD or ADHD that is made worse by the Lyme.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Fried, M.D., M.E. Adelson, and E. Mordechai, “Simultaneousgastrointestinal infections in children and adolescents.”Practical Gastroenterology, Nov. 2004: p. 78.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Fried, M.D., M.P. Abel, D., and A. Bal, “The spectrum ofgastrointestinal manifestations in Lyme disease.” J PediatrGastroenterology & Nutrition, 1999. 29(4): p. 495.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Fried, M.D., “Gastrointestinal pathology in children with Lymedisease.” JSTBP, 1996. 3(2): p. 101-104~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Belman, A.L., et al., “MRI findings in children infected byBorrelia burgdorferi.” Pediatr Neurol, 1992. 8(6): p. 428-31.Cranial magnetic resonance imaging abnormalities wereobserved in 8 children (ages 4-14 years) with neurologicproblems following infection by Borrelia burgdorferi. Neuro-logic features included headache (6), behavioral changes (5),facial palsy (2), papilledema (2), papilledema with diplopia(1), disturbance of sleep pattern (2), and carpal tunnelsyndrome (1). Two MRI studies demonstrated multiple focalareas of increased signal intensity in white matter on long TR(both proton-density and T2-weighted) images.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Belman, A.L., et al., “Cerebrospinal fluid findings in childrenwith Lyme disease-associated facial nerve palsy.” ArchPediatr Adolesc Med, 1997. 151(12): p. 1224-8.Between 1988 and 1996, a prospective evaluation at a singlemedical center in a Lyme disease endemic area was under-taken of forty children (aged 3-19 years) with new onset facialnerve palsy who met the CDC case definition of Lymedisease. Cerebrospinal fluid white blood cell count, proteinlevel, or both were abnormal in 27 (68%) of the children.Thirty-six (90%) of the 40 children had a CSF abnormalityconsistent with central nervous system infection or immuneinvolvement by B burgdorferi. Of the 22 children with CSF

pleocytosis, only 7 (32%) had headache and none hadmeningeal signs.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Belman, A.L., et al., “Neurologic manifestations in childrenwith North American Lyme disease.” Neurology, 1993. 43(12):p. 2609-14.We describe 96 children referred for neurologic problems inthe setting of Borrelia burgdorferi infection in North America.The most frequent neurologic symptom was headache, andthe most common sign was facial palsy. Less commonmanifestations were sleep disturbance, and papilledemaassociated with increased intracranial pressure. Signs andsymptoms of peripheral nervous system involvement wereinfrequent. The most common clinical syndromes were mildencephalopathy, lymphocytic meningitis, and cranial neuropa-thy (facial nerve palsy). Meningoradiculitis (Bannwarth’ssyndrome) and peripheral neuropathy syndromes were rare.However, a “pseudotumor cerebri-like” syndrome seems tobe unique to North American pediatric Lyme disease.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Gerber, M.A., L.S. Zemel, and E.D. Shapiro, “Lyme arthritis inchildren: clinical epidemiology and long-term outcomes.”Pediatrics, 1998. 102(4 Pt 1): p. 905-8.All children seen between 1982 and 1991 at the PediatricRheumatology Clinic at Newington Children’s Hospital(Newington, CT) with an initial diagnosis of Lyme diseasewere identified. Medical records were reviewed and struc-tured telephone interviews were conducted to obtain demo-graphic, clinical, and follow-up data. RESULTS: A total of 90children (aged 1.8-16 years) at the time of diagnosis of Lymearthritis were evaluated. Lyme arthritis was preceded by earlyLyme disease in 23 (26%) of the children; however, only 8(35%) of these children had been treated with appropriateantimicrobial therapy at that early stage. Ninety percent of thechildren had arthritis of at least one knee, while small jointswere rarely involved. For the 31 children who underwentarthrocentesis, the mean white blood cell count in thesynovial fluid was 38 000 cells/mm3 (range, 7000-99 000cells/mm3) with predominantly neutrophils. For the 79children for whom an erythrocyte sedimentation rate wasdetermined, the highest level for 61 (77%) was >20 mm/h andfor 36 (46%) was >50 mm/h. Antimicrobial therapy wasinitiated 2 days to 5.5 years (median, 2 months) after theonset of symptoms. Five of the children were never treatedwith antimicrobials.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Wilke, M., et al., “Primarily chronic and cerebrovascularcourse of Lyme neuroborreliosis: case reports and literaturereview.” Arch Dis Child, 2000. 83(1): p. 67-71.Case study of four children with unusual clinical manifesta-tions. Two patients suffered from a primarily chronic form ofneuroborreliosis and displayed only non-specific symptoms.An 11 year old boy presented with long standing symptoms of

Children’s Lyme Bibliography

18 LymeTimes

severe weight loss and chronic headache,while another patient had pre-existing mental and motorretardation and developed seizures and failure to thrive. Twochildren (a 15 year old girl; the other, a 5 year old boy) whopresented with acute hemiparesis as a result of cerebralischaemic infarction had a cerebrovascular course ofneuroborreliosis. Following adequate antibiotic treatment, allpatients showed substantial improvement of their respectivesymptoms.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Bloom, B. J., P. M. Wyckoff, et al. (1998). “Neurocognitiveabnormalities in children after classic manifestations of Lymedisease.” Pediatr Infect Dis J 17(3): 189-96.Case series of five children seen in a Lyme disease clinic in auniversity referral center for evaluation of neurocognitivesymptoms that developed near the onset of infection ormonths after classic manifestations of Lyme disease. Thediagnosis was based on clinical symptoms, serologicreactivity to Borrelia burgdorferi and intrathecal antibodyproduction to the spirochete. Evaluation included detailedneuropsychologic testing. After evaluation the children weretreated with intravenous ceftriaxone for 2 or 4 weeks. Follow-up was done in the clinic and a final assessment was madeby telephone 2 to 7 years after treatment. RESULTS: Alongwith or months after erythema migrans, cranial neuropathy orLyme arthritis, the five children developed behavioralchanges, forgetfulness, declining school performance,headache or fatigue and in two cases a partial complexseizure disorder. All five patients had IgG antibody responsesto B. burgdorferi in serum as well as intrathecal IgG antibodyproduction to the spirochete. Two patients had CSF pleocy-toses and three did not. Despite normal intellectual function-ing the five children had mild to moderate deficits in auditoryor visual sequential processing. After ceftriaxone therapy, thefour children in whom follow-up information was availableexperienced gradual improvement in symptoms.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Healy, T. L. (2000). “The impact of Lyme disease on schoolchildren.” J Sch Nurs 16(2): 12-8.School nurses are faced with caring for children with Lymedisease in the school setting. To provide that care, schoolnurses should know the pathophysiology of the disease andunderstand the body’s immune response to the infection.They need to be cognizant of the environments known tohave a high geographic distribution of Lyme disease todetermine exposure risk. Opportunities await school nursingexpertise in community education, medical treatmentregimens, health insurance coverage, implementation of theAmericans with Disabilities Act (504), and political action tobring public awareness to this potentially debilitating disease.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Bingham, P.M., et al., “Neurologic manifestations in childrenwith Lyme disease.” Pediatrics, 1995. 96(6): p. 1053-6.We reviewed clinical manifestations in 97 seropositivechildren with particular attention to neurologic manifestations.Diagnostic criteria used in other case surveys were applied todetermine how often a definitive diagnosis of neuroborreliosiscould be made in children. RESULTS: Of 69 children who metcriteria for LD, 32% (22) had new neurologic signs, 73% (16)of which were accounted for by facial palsy and asepticmeningitis. Five of those with neurologic findings also haderythema migrans (EM), and one had both EM and arthritis.Neurologic abnormalities resolved spontaneously in fivechildren before their serologic results were known. CONCLU-SION Only 27% of children with neurologic abnormalities dueto LD had a history of EM or arthritis. Seropositivity com-monly constituted the primary basis for diagnosis. Seroposi-tivity for LD in children with neurologic symptoms usuallysignifies active neuroborreliosis.

HIPAA Releases:Who Needs What Information?

It is not necessary that all informa-tion be available to all people,regarding a child’s illness, in this“information age.” To protect therecords of children, and to protectphysicians from disclosing thatwhich is not relevant or necessary,parents can consider restricting, inwriting, the information they allowtheir child’s physician to disclose.For example, schools need to knowthe child’s diagnosis, functionallimitations and restrictions, symp-toms to be aware of, medicationsthe child is on, and the supports thechild needs in school, nothing more.

Restricting the release of unneces-sary information protects a child’sand a family’s privacy, and keepseveryone aware of their particularrole in helping a child live with Lyme.

Children’s Lyme Bibliography

Summer 2005 19

In a pediatric setting, the nurse often spends as much or more timewith the child than does the physician. Time is invaluable for a correctdiagnosis – particularly for children who are not apt historians andfrequently omit important information. Children who have been sicka long time may not recognize pain and other symptoms as abnormal.With more time, a provider can pick up on subtle cues that could becrucial for the correct diagnosis.While taking vital signs and gatheringpreliminary information from theparent, the nurse is in a unique posi-tion to pick up on “red flags” for tick-borne diseases. Many doctors fail toinclude these diseases in their differen-tial assessment, and the vigilant nursecan be the critical link to a correct diagnosis.The nurse should put up her Lyme radar when a child is a frequentvisitor to the office, has many and varied complaints, or has symptomsthat have eluded diagnosis by other health care providers. A child that“comes down with everything that goes around” may have immunesuppression suggesting chronic infection. Children with tick-bornediseases also have a history of symptoms that do not neatly fit into anydiagnostic category. A few of these are: low energy in the absence ofanemia; frequent urination in the absence of a urinary infection; visualproblems with a normal ophthalmologic exam; clumsiness; frequent“growing pains” and insomnia unresponsive to the usual treatments.The symptoms of Lyme disease in children are subtle and can beeasily missed or confused with other illnesses. These children oftenpresent with a history of such diagnoses as juvenile rheumatoidarthritis (JRA), hypercholesterolemia, migraines, Crohn’s disease,gastritis, maturation delay, attention deficit/hyperactivity disorder(ADHD) and learning disabilities. The nurse should always be suspectof a previous diagnosis of JRA, especially if the child has also beendiagnosed with ADHD or migraines.The parent may report that the child is moody and unpredictable andthat he has frequent headaches and stomach aches. Sudden change ofbehavior should be noted—the quiet child has become loud andaggressive, the active child has become passive, the happy child has

When to Suspect Lyme Disease in ChildrenPediatric Nurses are in a Unique Position to See the “Red Flags”

by Ginger Savely, FNP-C

Pediatric Nurses

Kindness is thelanguage which thedeaf can hear and theblind can see.

~Mark Twain

20 LymeTimes

become weepy and sad, the calm child has startedthrowing fits and tantrums. In school, the child maybe frequently absent, report sick to the school nurse,or bring home notes for poor behavior.The parent should be asked if the child has ever hada tick attachment, even if the popular belief is thatthe area does not have ticks that carry disease! Lymeand tick-borne co-infections are found in almostevery state. Because ticks may be as small as theperiod at the end of this sentence and their bite ispainless, most people are unaware of the tick bite soit is important to ask about exposure potential. Arethere wooded areas near the home? Are there deeraround? Does the child play out in the grass? Doesthe family go camping? Do they have pets? Are tickchecks routinely done? Has the family traveled tohighly tick-endemic areas? If the child has ever hadrashes of any kind, the parent should be asked todescribe these in detail.If environmental factors don’t sound suspect fortick exposure, inquiries should be made regardingthe mother’s health status. If the mother says thatshe has been diagnosed with fibromyalgia or chronic

Pediatric Nurses

fatigue syndrome, or that she’s had vague complaintsof joint pain and fatigue since before the child wasborn, a congenital Lyme case may be a possibility.In the assessment of the child the nurse may noticea tendency towards distractibility and hyperactivity.It is often difficult to get the child to stop talking orsit still long enough for vital signs to be taken. Thechild may be hyper-sensitive to touch and may wincewhen the blood pressure is taken. He may avert hiseyes to the light of an opthalmoscope or complainthat the lights in the room are too bright. Reflexesmay be so hyper that even brushing against the legwill cause the child’s lower leg to kick forward.Nurses are the parent’s and child’s first contact in thedoctor’s office. They can form a strong relationshipwith the parent and bond with the child. They arethe child’s advocate. Since most nurses have acuteobservation skills, they would do well to becomevigilant to the “red flags” of Lyme disease. Theycan then encourage the physician to take note ofrelevant history and symptoms and to pursue thepossibility of tick-borne disease.

Kids and Ticks

In a study to determine the duration of tick attachment on people bitten byticks in Westchester County, New York from 1985 to 1989, it was found thatchildren 9 years of age and under had the highest proportion (37%) of fe-male ticks attached for more than 48 hours, although nymphs remainedattached to adult bite victims longer.

However, children have a high risk of acquiring Lyme disease because theyreceive more nymphal bites and also because they are less likely to havefemale ticks removed in time to prevent transmission.

Falco, R. C., D. Fish, et al. (1996). “Duration of tick bites in a Lyme disease-endemic area.” Am J Epidemiol 143(2): 187-92.

Summer 2005 21

Lyme of the Eye

Lyme Disease in the Eye: A Pediatric and Adolescent Perspective

Common Ocular Manifestations of Lyme Disease

Stage 1 Lyme disease:

• Conjunctivitis

• Photophobia

Stage 2 Lyme disease:

• Cranial nerve VII palsy

(Bell’s palsy)

• Blurred vision

secondary to

papilledema

• Optic atrophy

• Optic or retrobulbar

neuritis

• Pseudotumor cerebri

Late Stage 2 or Stage 3

Lyme disease:

• Episcleritis

• Symblepharon

• Keratitis

• Iritis

• Pars planitis

• Vitreitis

• Chorioretinitis

• Exudative retinal

detachment

• Retinal pigment

epithelial detachment

• Cystoid macular edema

• Branch artery occlusion

Optic nerve disease can be either bilateral or unilateral and may be associated with other symptoms.See Zaidman, G., Lyme disease (updated 2004) http://www.emedicine.com/oph/topic262.htm

By Eric L. Singman, MD, PhD, Neuro-Ophthalmologist Director of Low Vision andVision Rehabilitation, Family Eye Group, Lancaster, PA

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 patientsseem to have central nervous defects, including hyperintense white matter lesions of the brain and evenan 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 doublevision. Lyme disease can mimic so many diseases, including multiple sclerosis, chronic fatigue syndromeand fibromyalgia. Therefore, a young patient’s health care team must ensure that the patient has beencorrectly diagnosed. Intracranial hypertension is a difficult diagnosis, particularly when it presents in anuncommon way. If Lyme disease attacks the optic nerve, it can lead to blindness. For this reason, exam-ining 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.

22 LymeTimes

Gastrointestinal Lyme

Lyme disease has been reported in the gastrointestinal (GI) tract of children and adolescents. Pediatricgastrointestinal Lyme disease may present as abdominal pain, vomiting, diarrhea, heartburn, blood in thestool, and it may mimic Crohn’s disease or colitis. Blood tests for diagnosing Lyme disease may benegative while gastrointestinal and other Lyme disease symptoms persist. The diagnosis is made clinicallyon the basis of symptoms and by excluding other possible etiologies. Once treatment has begun withantibiotics, most patients reported a decrease in the frequency and severity of their abdominal pain. Inaddition to antibiotics, a low fat diet further alleviated some of the abdominal symptoms associated withLyme disease. In patients who reported having a crampy, colicky, below the belly button pain, treatmentalso included antispasmodic and anticholinergic medications. After treatment is completed, some re-sidual abdominal pain may persist for a couple of months at a markedly reduced level of severity. Thisdiminished pain usually represents the activation and persistence of the immune system to fighting theinfection even long after the infection is gone. In addition to Lyme disease, other co-infections such asBartonella, mycoplasma, H. pylori and babesia have been confirmed to occur in the GI tract.

Common GI Symptoms Due to Lyme Disease

For further information, see Fried, M.D., M.E. Adelson, and E. Mordechai, Simultaneous gastrointestinal infections inchildren and adolescents. Practical Gastroenterology, Nov. 2004: p. 78.Fried, M.D., M.P. Abel, D., and A. Bal, The spectrum of gastrointestinal manifestations in Lyme disease. J Pediatr Gastroen-terology & Nutrition, 1999. 29(4): p. 495.

! Gastroparesis

! Small intestinal bacteriaovergrowth (SIBO)

! May mimic Crohn’sdisease or colitis

! Abdominal pain

! Vomiting

! Diarrhea

! Heartburn

! Blood in the stool

Gastrointestinal Lymeby Martin D. Fried, MD*

*Director, Pediatric Gastroenterology and Nutrition, Assistant Program Director, Department of Pediatrics,Jersey Shore Medical Center, Neptune, NJ

Summer 2005 23

Neurologic Lyme

Infection with Borrelia burgdorferi, which causes Lyme disease, willfrequently involve the central or peripheral nervous system or both.Presentation can be acute, subacute, or chronic and can affect childrenat any age. The onset of neurologic symptoms and signs may be earlyon or be seen even years after the initial infection.The acute presenting picture is usually one of a meningitis or menin-goencephalitis. Patients may present with no fever, a very low gradefever or headache. They may have flu-like symptoms, photophobia, orpain on flexion of the neck, but not actually have a stiff neck. If aspinal tap is done at that time the opening pressure may be elevated ornormal. The white cell count will be elevated, modestly 15 to 20, orcan be significantly elevated, 7 to 800 or greater. The protein may benormal or elevated. The glucose will usually be normal and a culturewill be negative. They may or may not have positive cerebrospinalfluid (CSF) antibody titer for Lyme and polymerase chain reaction(PCR) may or may not be positive. Usually if the patient is treated inthis acute phase, these initial symptoms will clear and frequently thesesymptoms may clear even without treatment.This meningitic picture is considered to be aseptic because there is nopositive culture for bacteria even though the cause of this is infectious,so the term aseptic meningitis may be used. At the same time that thispatient has this aseptic meningitis they may also have involvement of acranial nerve, the most common being the seventh nerve, the facialnerve. This results in palsy on one side and sometimes both sides ofthe face, at times call Bell’s palsy. This too in children usually sponta-neously resolves, although some children may require some physicaltherapy. Rarely, children may present with a radiculitis, that is inflam-mation of a nerve root or multiple nerve roots resulting in pain,dysesthesias, numbness, tingling, etc., on the trunk or on the limbs.Frequently, people call the meningitis involvement of the cranial nervesand radiculitis a triad of neurologic Lyme.Other cranial nerves besides the seventh nerve can be involved inLyme and theoretically any of these nerves can be involved. The sixthcranial nerve can result in double vision. The fifth cranial nerve canresult in significant facial pain and discomfort and other peripheralnerves can also be involved. I have seen two patients with foot dropfrom Lyme and I have seen at least two or three patients with brachialneuritis, resulting in weakness and pain in the upper extremity.

Neurologic Manifestations of Lyme Disease in Children

by Dorothy Pietrucha, MD, FAAP

To see things in theseed, that is genius.

~Lao-tzu

24 LymeTimes

The involvement of the cranialnerves and the radiculitis repre-sents involvement of the periph-eral nervous system from Lymedisease. Usually this is clinicallyquite obvious because the patientpresents with weakness or suchsevere pain in the distribution ofa nerve root or nerve that thediagnosis is rather straightfor-ward. A sensory neuropathy, thatis involvement of the sensoryportion of the nervous system,more so than the motor, alsooccurs sometimes resulting in alot of pain and discomfort,especially distally, that is at theend of the extremities.I have seen a number of childrenwith severe dysesthesias anddiscomfort on the soles of theirfeet without any other significantfinding involving the peripheralnervous system. The sensoryinvolvement has been describedfar more frequently in the adultpopulation than the pediatricpopulation.The onset of the peripheralneuropathy may be close to thetime of the actual infection, thetick bite, or may occur at a laterdate when the association withthe tick bite is not that easilyappreciated. Certainly whenchildren present with symptoma-tology referable to the cranialnerves or other peripheral nerves,Lyme should be in the differen-tial. Involvement with the centralnervous system, brain and spinalcord is far more complex andpuzzling. The presentation canbe, again, acute, subacute orchronic.

Lyme may present with an acutestroke-like picture, an acutehemiparesis which would involvelarge vessel occlusive disease butthis occurs rarely. Patients maypresent with a more diffusevasculitis or perivascular inflam-matory changes.

Some children present with aGuillian Barre-like clinical picture,that is ascending weakness with apleocytosis in the spinal fluid.Patients may present with whitematter lesions seen on the MRI,which may be accompanied bysigns of upper motor neuroninvolvement as well as a diffuseencephalopathy. These lesions aresimilar to the ones seen in pa-tients with MS and that hascreated some confusion regardingthe relationship between Lymeand MS, which I will not discussat this time.There have been rare case reportsof patients with Lyme presenting

Neurologic Lyme

with movement disorder, myoclo-nus and can present with seizures.I now want to focus on twoimportant neurologic complica-tions from Lyme disease that wesee far more frequently in childrenthan adults. One is headachesaccompanied by increased intrac-ranial pressure, but not necessar-ily with papilledema.Pseudotumor is a term used todescribe increased intracranialpressure that has always beenthought to be accompanied bypapilledema, but this is not thecase. More and more cliniciansare seeing and reporting patientswith increased intracranial pres-sure without the papilledema.A number of children with Lymepresent with this increased intrac-ranial pressure, which is either thesole cause of or a contributingcause of their headache. Ordi-narily the opening spinal fluidpressure is less than 180 mm ofwater. In these children thepressure is elevated usually signifi-cantly over 200 and in my experi-ence when it has been closer to350 to 400 or higher it is usuallyaccompanied by papilledema.Frequently, the fluid will other-wise be unremarkable, althoughsometimes there may be anelevated protein.When there is papilledema there isa potential for vision loss. Thishas to be treated promptly andaggressively to bring the pressuredown so as to prevent any visionloss. If the pressure is elevated,but there is no pressure on theoptic nerve, it still should betreated.

The most common neuro-logic manifestation ofLyme in children is whatwe call or have coinedLyme encephalopathy.This is characterized byheadache, photophobia,frequently phonophobiaand sometimes malaise,fatigue, irritability, difficultyconcentrating, problemswith memory, difficultylearning new material inschool, and what many ofthe children with Lyme calltheir “Lyme fog.”

Summer 2005 25

The most common neurologicmanifestation of Lyme in childrenis what we call or have coinedLyme encephalopathy. This ischaracterized by headache, photo-phobia, frequently phonophobiaand sometimes malaise, fatigue,irritability, difficulty concentrat-ing, problems with memory,difficulty learning new material inschool, and what many of thechildren with Lyme call their“Lyme fog.”I have seen this encephalopathyfrequently in patients with Lymeand the younger the patient, thegreater the chance of irritability,personality change, and apreschooler becoming extremelydifficult to manage and theparents becoming quite con-cerned about this total change inthe child’s affect. In the olderchild, there is a more depressivefatigue-like picture and theirschool performance suffersbecause of the difficulties theyhave in remembering what theyhave learned and in learning newmaterial.Many of these children, becauseof this difficulty, are unable toattend school and require hometutoring on a limited basis. Theymay have some nonspecificfindings on the MRI, such aswhite matter lesions. Their EEGsmay show some cerebral dysfunc-tion and as noted above, if aspinal tap is done, the pressuremay or may not be elevated.Because Lyme is a clinical diagno-sis, these patients warrant appro-priate diagnostic evaluation andthen if it is clinically determined

Neurologic Lyme

that Lyme is the cause for theirsymptoms and signs, an appropri-ate therapeutic plan should be putin place utilizing either intravenousor oral antibiotics depending onthe patient’s clinical presentation,clinical picture and course.Other medications that may beneeded are anti-convulsants, if thepatient has seizures, diuretics ifthere is increased intracranialpressure, anti-inflammatory medi-cations, pain medications, etc.Physical therapy may be needed ifthere is weakness and certainly andmost importantly if the child is ofschool age, an individual educa-tional plan has to be put in place ifthe child is unable to continue in aregular school program.The clinical course for Lymepatients is extremely varied. Somerecover within a matter of weeks.Others may take months or evenyears. The reason for this ispoorly understood. Are thesepatients chronically infected? Arethey suffering from some immu-nopathologic process? Do theyhave infection? Until we have adefinitive answer to this verycomplex question, we ask thepatients to be patient, and we asphysicians will continue to use ourbest clinical judgment in evaluat-ing, diagnosing and treating thisdisease.

Dorothy Pietrucha, MD, FAAP, is themedical director of the Division of PediatricNeurology, Child Evaluation Center, JerseyShore Medical Center, Neptune, NJ. Dr.Pietrucha is on the Scientific & ProfessionalAdvisory Board, Lyme Disease Association,Inc.

LYME T-SHIRTS ARENOW HERE!Make a fashion statement!Wear your Lyme T-shirt withyour Lyme wristband! T-shirtsare lime-green and say on thefront: “Ticks suck . . . and giveyou Lyme disease.”

T-shirts are available in sizessmall through extra-large. Theyare $15 each. Place an order atour websitewww.LymeDisease.org,or send a check with your orderto: CALDA AdministrativeOffice, P. O. Box 707,Weaverville, CA96093-0707. For moreinformation, contact Marisa atmbattilana@hotmail.com

GET YOUR LYMEWRISTBANDS!

Do you have yours yet? Get a setand distribute them to your supportgroup, your friends and family, thepeople you work with! They arelime-green, the color of hope, andsay, “Lyme Disease—A HiddenEpidemic” www.LymeDisease.org.Tiny ticks are imprinted in theband.Wristbands are $2 each.Minimum order is 10 bands. Placean order at our websitewww.LymeDisease.org, or send acheck with your order to: CALDA,Administrative Office, P. O. Box707, Weaverville, CA 96093-0707.For more information, contactMarisa at mbattilana@hotmail.com.

26 LymeTimes

The treatment of tick-borne diseases (TBDs) that have chronic symp-toms in children and adolescents requires a comprehensive approachthat includes attention to daily routines, school, family dynamics, peerrelationships, exercise, psychotherapy, psychotropics and other medicaltreatments. While recognizing the importance of these other treatmentmodalities, this paper shall only focus upon pharmacological treat-ments (the use of psychiatric medications) to treat a variety of psychi-atric symptoms of TBDs, including some that are extremely serious.Many of these symptoms may improve and some may fully resolvewith comprehensive and adequate TBD treatment.It is also important to note there are some issues in the treatment ofchildren and adolescents that are different from the treatment ofadults:! Children and adolescents generally have less insight than adults,and children with chronic TBDs may not have a clear reference pointfor a state of health.! Illness often results in developmental delays.! There are even fewer physicians who treat TBDs in children andadolescents than there are who treat adults.! Very few psychotropics are actually approved for the treatment ofchildren and adolescents.! Children generally metabolize drugs more rapidly and need higherdoses for the same weight compared to adults.After performing an assessment, I begin treatment planning by askingthe patient and his/her family to prioritize in order of significance thekey symptoms that are most problematic and appear to contributemost to perpetuating the illness. The symptoms at the top of the listcommonly include fatigue, cognitive impairments, sleep disorders,apathy, pain (including headache), depression, anxiety disorders, irrita-bility and anger. Other issues that may call for psychopharmacologicalintervention include suicide risk, self-destructive behavior, eatingdisorders, substance abuse, seizures and risks that Jarisch-Herxheimerreactions may cause an abrupt exacerbation of symptoms, includingsuicidal and aggressive behavior.It is my basic assumption that impairments caused by chronic diseaseresult in a vicious cycle of chronic stress resulting in compromised

The Pharmacological Treatment of Children and Adolescentswith Tick-Borne Diseases

by Robert C. Bransfield, MD, FAPA, DABPN-P, C-ASCP

Pharmacological Treatment

“My own brain is to methe most unaccountableof machinery - alwaysbuzzing, humming,soaring, roaring, diving,and then buried in mud.And why? What’s thispassion for?”

~ Virginia Wolf

Summer 2005 27

immune functioning, therebycontributing to a perpetuation ofchronic infectious disease andchronic symptoms. When thisvicious cycle of chronic disease isbroken, the body’s normal capac-ity to maintain a state of healthbecomes stronger and at thispoint less psychotropics andantibiotics are needed to maintainhealth. Therefore, many of thetreatments described in thisarticle may be temporary whentreating TBDs.Controversies exist surroundingthe use of both psychotropics andantibiotics and patient and parentsneed to carefully consider therisks of the disease vs. the risksof different treatment options.The goal in using psychotropics inchildren is to achieve a state inwhich mental functioning isappropriate for the current lifesituation and results in the capac-ity to experience well-being,pleasure, fulfilling relationships,productive activities, the mentalflexibility to adapt to change, theability to recognize and deal withadversity and the expression ofinnate personality. Contrary toinaccurate information dissemi-nated by different special interestgroups, the goal in using psycho-tropics in children and adoles-cents is not to sedate or bluntpersonality.It is then important to create anindividualized treatment planbased upon the findings of theassessment, clinical judgment, thebest evidence available and patientand parent preferences.I have generally found treatment

of the symptoms that cause thegreatest amount of impairmentand chronic stress result in thegreatest therapeutic benefit. Afterreviewing the priorities of thepatient’s symptoms with them andtheir parents, a sequential treat-ment plan is developed, which isalways subject to revision. Nor-malizing circadian rhythm (thesleep wakefulness cycle) andtreatment of depression andanxiety are the most commontreatments. Whenever possible, Iattempt to use treatments withmultiple benefits. Below is anoutline of symptoms and psy-chopharmacological approachesthat address these symptoms. Thislist is constantly being revised asnew information becomes avail-able.Fatigue may consist of physicaland/or mental fatigue. It is oftenassociated with excessive daytimesleepiness, cognitive impairmentsand apathy. Normalizing circadianrhythm and restoring delta (stage4 deep sleep) is the primarytreatment for fatigue. Therefore,any cortical activating agent in themorning and/or any deep sleeppromoting agent at night helpsachieve this. The primary corticalactivating agent is modafinil(Provigil) and second line agentsinclude psychostimulants,bupropion (Wellbutrin XL, SR orIR) and other activating antide-pressants. Deep sleep promotingagents at night include trazodone(Desyrel) and tigabine (Gabitril).Eszopiclone (Lunesta) wasrecently introduced. It increasesall stages of sleep, including deepsleep, and has been demonstrated

Pharmacological Treatment

not to cause tolerance, depen-dence or rebound in 6 and 12month studies. Although it mayhave significant potential, experi-ence with adolescents at this timeis very limited.Insomnia treatments, in additionto those mentioned above, includeother sedating antidepressants,antihistamines and melatonin.Other sedating antidepressantsinclude mirtazapine (Remeron),doxepin (Sinequan), amitriptyline(Elavil), trimipramine (Surmontil)and paroxetine (Paxil & Pexiva).The most commonly used antihis-tamine for sleep is diphenhy-dramine (Benadryl, Unisom &other over the counter sleep aids).Other options include hydrox-yzine (Vistaril & Atarax) andciproheptadine (Periactin). Ifmore than 3 mg of melatonin isused, it may disrupt the circadianrhythm and cause insomnia thefollowing night. There are manynew treatments for insomniaunder development by the phar-maceutical industry.Apathy may respond to treatmentwith modafinil, which may pro-mote initiative or bupropion thatmay reduce anhedonia (an inabil-ity to relate to the pleasure oflife).Cognitive impairments aretreated with a number of strate-gies. Modafinil may be effectivefor brain fog, concentrationimpairments and executivedysfunction. A new and lessexpensive formulation ofmodafinil (Attenace) will beavailable soon to treat ADHD inchildren. Stimulants (meth-

28 LymeTimes

ylphenidate and amphetamines)have been used for over fiftyyears and are often effective forthe treatment of attention defi-cits. The long acting forms ofmethylphenidate (Ritalin LA,Medadate CD & Concerta) andamphetamines (Adderall XR) areused most commonly. A new longacting form of the active isomerof methylphenidate (Focalin LA)shall be released soon and a skinpatch form of methylphenidateshall be available at a later date.Memantine (Namenda) helpsverbal processing in adults withTBDs and may eventually beuseful to some children andadolescents with these symptoms.Depression treatments includeall of the antidepressants andmood stabilizers used in adults.Depression with predominanceof apathy is best treated withbupropion, while depression withpredominance of anxiety is besttreated with paroxetine. Theserotonin re-uptake inhibitors(SSRIs) are useful in treatingpremenstrual dysphoria associ-ated with menarche.Lamotrigine(Lamictal) is particulary effectivefor treatment resistance depres-sion.

particularly effective for treatingOCD. Paroxetine (Paxil) andsertraline (Zoloft) are particularlyeffective for treating panic disor-der, social anxiety disorder andPTSD. Topiramate (Topamax) isalso quite useful for treatingintrusive symptoms associatedwith PTSD. Otheranticonvulsants and benzodiaz-epines are also used at times totreat anxiety.Anger that is brief and episodic,particularly when accompanied byobsessiveness, is best treated withSSRIs, while persistent anger andrage, especially when moodintensity is present, is best treatedwith valproate (Depakote ER,Depakote), other anticonvulsantsand other mood stabilizers.Carbamazepine (Tegretol) hasalso been used a long time foranger and rage control. Morerecently, a second generation ofcarbamazepine and oxcarbazepine(Trileptal) has had increasing usefor anger and bipolar illness inchildren. Unlike carbamazapine,blood monitoring is not neededfor oxcarbazepine. A third genera-tion of carbamazapine may bereleased in about one year.Psychosis in children and adoles-cents is most commonly treatedwith risperidone (Risperdal).However, aripiperazole (Abilify) isbeing used with increasing fre-quency with autistic and develop-mentally disabled children.Depersonalization sometimesimproves when there is improve-ment of anxiety disorders (espe-cially PTSD and panic disorder),depression, seizures and cognitiveimpairments. Lamotrigine

Pharmacological Treatment

(Lamictal) can be effective whenother treatments fail.Pain and neuropathy arecommonly treated with a combi-nation of a dual-acting antide-pressant and an anticonvulsant.The dual-acting antidepressantsblock the re-uptake of bothserotonin and norepinephrineand include duloxetine(Cymbalta), venlafaxine (EffexorXR), Amitriptyline (Elavil) andnortriptyline (Pamelor).Duloxetine, although new, hasbeen proven to be particularlyeffective in treating chronic pain.Headaches are treated with thesame approach as pain, butmuscle relaxants and migrainemedications may also be needed.Seizures may be treated with thecommonly prescribedanticonvulsants. These includevalproate (Depakote),oxcarbazepine (Trileptal),carbamazepine (Tegretol),topiramate (Topamax), tigabine(Gabitril), and zonisamide(Zonegran).There are a number of FDAsafety warnings associated withthe treatments discussed in thispaper. Most notably, there isdebate surrounding increasedrisk of suicidal behavior in earlytreatment of children andadolescents with antidepressants,risk of Stevens Johnson Syn-drome with lamotrigine(Lamictal) and oxcarbazepine(Trileptal) and risk of the emer-gence of seizures with tigabine(Gabitril). All treatment deci-sions require a clear and com-plete discussion with the childand parents and a risk vs. benefitassessment.

Anxiety disorders includegeneralized anxiety disorder(GAD), obsessive compulsivedisorder (OCD), panic disorder,social anxiety disorder and post-traumatic stress disorder (PTSD).Commonly mixed anxiety disor-ders are seen with symptoms ofmore than one type of anxiety.Most of the SSRIs are useful fortreating GAD and OCD.Fluvoxamine (Luvox) andclomipramine (Anafranil) are

Summer 2005 29

In summary, children and adolescents with TBDsmay have very severe psychiatric symptoms and canrespond to a well planned psychopharmacologicaltreatment approach. Although more research isneeded in this area, the patients in our office todayneed to be provided with an individualized treat-ment plan based upon the findings of their assess-

Pharmacological Treatment

ment, clinical judgment, and the best evidenceavailable as well as patient and parent preferences.The form used to perform the clinical assessment isavailable at: www.mentalhealthandillness.com/lymeframes.html. Additional Internet links andreferences are available at: www.lymeinfo.net/neuropsych.html.

What’s in a name?Brand and generic names of commonly used psychiatric medications

Amitriptyline Elavil Methylphenidate Ritalin, Medadate,Concerta, or Focalin(enantomer)

Amphetamines Adderall XR & others Mirtazapine Remeron

Aripiprazole Abilify Modafinil Provigil

Bupropion Wellbutrin XL Nortriptyline Pamelor

Carbamazepine Tegretol Oxcarbazepine Trileptal

Ciproheptadine Periactin Paroxitine Paxil

Clomipramine Anafranil Risperidone Risperdal

Diphenhydramine Benedryl Sertraline Zoloft

Doxepin Sinequan Tigabine Gabitril

Duloxetine Cymbalta Trimipramine Surmontil

Eszopiclone Lunesta Topiramate Topamax

Fluvoxamine Luvox Trazodone Desyrel

Hydorxyzine Vistaril or Atarax Valproate Depakote

Lamotrigine Lamictal Venlafaxine Effexor XR

Memantine Namenda Zonisamide Zonegran

Generic Name Brand Name Generic Name Brand Name

30 LymeTimes

Reflections on Lyme Disease in the Family

by Sandy Berenbaum, LCSW, BCD

Ideally, the family is a safe, protective, nurturing unit in which a childdevelops and grows. The early years are demanding for parents, who,in addition to bonding with their child, must make daily decisions thatare vital to their child’s life and growth. In contrast, the adolescentyears are emotionally challenging, as parents struggle to remain con-nected, supporting their children’s bid for independence, while protect-ing them from making sometimes disastrous choices, as the childstruggles to develop her own ideas and direction.Let’s add Lyme disease to this picture. Parents of children with Lymedisease carry an enormous burden, far greater than those outside theLyme community are likely to understand. They worry about accuracyof diagnosis, selecting the right doctor and treatment approach, payingfor treatment that is very costly, and the complexities of identifyingand advocating for educational supports that may be necessary for achild to make it through school.Other members of the family may be ill as well, often the case withLyme disease. Aside from the increased financial burden, there is thestress of trying to meet the needs of several Lyme disease patients inone family. It is particularly difficult when one of those Lyme patientsis a parent, and when the ill parent suffers from neuropsychiatricproblems!Given the complexity and unpredictability of symptoms, and theinadequate understanding of this illness in the greater community,parents often find that they do not have the support of family andfriends, as they struggle to cope. Unwittingly, some well-meaningfamily members may make comments that undermine parents, evenchallenging the medical decisions that they make. At times, familymembers mistakenly attribute the child’s symptoms and behaviors towillfulness on the part of the child, or inadequate structure and limitson the part of the parents. Failing to appreciate the complex, debilitat-ing nature of this illness, they do not acknowledge the struggle thefamily is going through, and are therefore not a reliable source ofsupport. This reality in the life of the family of a child with Lyme canbe particularly disappointing and painful!Behavioral problems are not uncommon in children with chronicLyme. If the child is subject to rages or other severe psychiatricsymptoms, this increases the stress level in the family, and makes the

Lyme Disease in the Family

It is not flesh and blood,but the heart whichmakes us fathers andsons.

~ Johann Schiller

Summer 2005 31

family’s day to day life far morecomplex. Lacking the supportand help they would have hopedto get from their family andfriends, parents truly feel isolated.They are often out on a limb withtheir child, but they are also outthere alone.Where a young child is con-cerned, although his parents dotheir best to help him feel safeand protected, hiding theirworries and fears, the child surelysenses that something is verywrong. Parents can’t help butworry about whether their childwill ever fully recover. Whatmight the residual damage be…tohis body, to his brain, to hisexperience of life? On somelevel, the young child is keenlyaware that he is not growing up inthe carefree environment thatpeers may be experiencing.Worries certainly permeate thehousehold. Even decidingwhether to allow a child to go ona school field trip, or give permis-sion for a teenager to go hikingwith friends, may be a struggle forparents, who worry that theirchild, already very ill, might be re-infected. A sense of normalcy islost.Where the adolescent is con-cerned, a primary issue is how tosupport the teenager in her effortsto individuate and move towardindependence, while takingappropriate precautions fortreating the illness. The physicaland emotional dependency of asick teenager may delay or inter-fere with the task of individuat-ing. Or, the teenager, supported

by inaccurate information that isall around them, may separate bychallenging the Lyme diagnosis ortreatment, and refusing to go tothe doctors or take prescribedmedications. In denying theirillness, teenagers may even cometo believe that their symptomsrepresent who they are, as they losetouch with the fact that thesesymptoms are caused by a treatablemedical illness. They may thereforesee themselves as lazy, not verybright, quick to anger, moody.And, in the process of individuat-ing, they might not believe theevidence their parents and doctorspresent that these are merelysymptoms of the illness, and not amanifestation of who they reallyare. How terrifying this is can befor parents!A child’s illness may call onparents to grow in unaccustomedways. Parents may find them-selves thrust into situationsbeyond their own comfort level,needing to be more assertive withpreviously trusted school andmedical authority figures or moreconciliatory with insurers andothers, in order to achieve impor-tant goals. The needs of theirchildren often push parents farbeyond their comfort zone inthese areas. It is important thatparents recognize where thatcomfort zone is, and work tomove beyond it, for the sake oftheir child, and his recovery.In this complex, demandingworld, we need to have compas-sion, empathy, and understandingfor those who are struggling toraise children who have chronic

Lyme disease. If we can appreci-ate the challenges that face them,and respect their decisions,perhaps we can make their worlda little bit brighter.Parenting Strategies from theTrenchesAfter years of helping parents,children, adolescents and familiesdeal with some of these issues, Ihave developed the followingstrategies to help parents easetheir journey:! Maintain a problem-focused

approach as you make deci-sions about diagnosis, doc-tors, and treatment.

! Work at developing a consen-sus between you and yourchild’s other parent, whetheror not you are still together!

! Stay focused on currentproblems to be solved, andkeep worries on the backburner.

! Explain what’s going on toyour child in concrete, age-appropriate terms.

! Maintain your credibility withyour child by being truthful.

! Be careful with the words youuse. Avoid words like “psy-chotic episode”, “manic”, or“incurable”. Lyme disease isa scary illness. Keep yourwords from making it scarier.

! Be firm when you need to be,but give choices when youcan, lots of choices.

! Establish and maintainprotective boundaries, pro-tecting yourself and your childfrom family members andfriends who doubt yourjudgment and parenting

Lyme Disease in the Family

32 LymeTimes

decisions. Let others knowwhat they can and cannot say.

! Build a supportive network -educate your family andfriends about Lyme, but don’toverload them. Remember,this is your issue, not theirs.

! Be open to support, but makeit clear that you’re not open tobeing second-guessed. Allowpeople to help in concreteways when you’re over-

Ann Corson, MD, points out Lyme disease canhave a far reaching social impact on children,who may suffer from:

• Isolation• Loss of peers and normal socialization• Loss of self-esteem• Inability to participate in sports or extracurricular activities• Loss of academic work• Interruption of normal family life

She calls for those involved with children to bealert to their other needs as well as the medicalissues:

• Teachers, school administrators, school healthprofessionals, pediatricians, family practitionersand parents all need to be aware of the variedmanifestations of tick-borne diseases.

• Mental health professionals and educators inLyme endemic areas need to recognize thepossible infectious basis of neuropsychiatricdisease in children.

Lyme Disease in the Family

Lyme is More Than a Medical Problem

whelmed. Let them makemeals, pick up the kids, orshop for groceries.

! Psychotherapy or familytherapy, with a Lyme-knowl-edgeable therapist, can be animportant adjunctive treat-ment to help you and yourchildren get through the hardtimes without residual dam-age. The model I use ishelping Lyme patients and

their families go from beingvictims, to survivors, tothrivers. There’s nowhere thatthis model is needed morethan with families coping withLyme disease.

Help the national Lyme DiseaseAssociation and Time for Lymereach their goal! $3 million isneeded to open the Center.We’re 75% there. Care enoughto make the difference.

Please send your tax-deductible donation to:

Sandy Berenbaum, LCSW, BCD,may be reached at Family ConnectionsCenter for Counseling in Brewster,New York.

www.lymediseaseassociation.org/donations.html

Percent of Money RaisedToward Opening of Columbia

Lyme Research Center.

Lyme Disease Association, Inc.P.O. Box 1438Jackson, NJ 08527

Summer 2005 33

A Parent’s Journey Toward the Light

My son has neuroborelliosis, Bartonella henselae and Mycoplasmafermentans. I write with hope that parents, advocates, and medicalprofessionals alike will gain insight into what it’s like for a family tocope with severe psychological manifestations of tick-borne diseases.My son was previously healthy and high functioning, with a jovialspirit. Three months following a mosquito bite which swelled to thesize of a softball, he began exhibiting extreme psychological symptomsincluding Obsessive Compulsive Disorder (OCD), anorexia, and rages.Serendipity led us to a doctor experienced in treating Lyme diseasewho diagnosed my son with Lyme through DNA and serological assaytesting. His Western blot showed positive for both past and recentinfection.Though my son’s symptoms began responding to oral antibiotics, avery traumatic event in his life reversed progress. He was attacked by apeer, and beaten, the victim of a bullying incident. His conditionworsened and a brain SPECT scan showed little blood circulating tohis brain.Symptoms spiraled into periods of psychosis, suicide attempts, anduncontrollable raging. Normally an extraordinarily bright, articulate,and compassionate child, he was reduced to a vegetative state in whichhe could only watch pre-school cartoons. This activity was oftenbroken by rageful psychosis and periods of extremely dangerousbehavior.A few examples of the daily happenings for many months would be:screaming obscenities, stalking family members and throwing objectsor swinging sticks, trying to start the car (he was middle school age atthe time), climbing onto the roof, attempting to jump out of movingcars, running miles away on foot, and attempting to hang himself withmasking tape.These symptoms were surely life-threatening, yet we had no access toemergency healthcare without the threat of harm to my son. I waseducated enough to know what the enemy was. It was an infectionwhich had invaded my son’s mind and body. After contacting physi-cians and mental health professionals and doing my own research, Icame to realize there was no inpatient facility that would have beenwilling, experienced, or knowledgeable enough to keep my son safewhile continuing his Lyme treatment. The unbelievable truth of the

If our American way of lifefails the child, it fails us all.

~ Pearl S. Buck

A Parent’s Journey

34 LymeTimes

matter was that any hospital wewould have approached for helpwould have committed my son toa psych ward and would not haveapproved, nor overseen thetreatment necessary to address hisraging infection. Any giveninstitution would likely havewithdrawn antibiotics and re-placed them with multiple psy-chotropic agents. I know in myheart that he would have beenirreparably damaged had I deliv-ered him to the mental healthsystem for help.Instead, with the long distancesupport of our doctors and thenecessary antibiotic therapiesprescribed, my husband and Iprovided home care. This was aminute by minute endeavor, theonly way it could work. Thetreatment required consisted ofIV and oral antibiotics, whichoften produced psychiatric Jarish-Herxheimer reactions that werecompletely refractory to all psychmeds tried on my son.For protection, it was necessary toremove all objects such as medica-tions, car keys, garage dooropeners and anything imaginablethat could be dangerous duringpsychosis. It was necessary tocreate a total lock down psychward at home for these months.I believe extensive reading ofmedical documentation put outby specialists enabled me to cope.My husband had not read aboutor experienced the disease as Ihad, so his faith required morestretching. We had to know thiswas not our son. We had to havefaith that the unimaginable neuro-

psychiatric Herxheimer wouldend. We had to have faith thatwhen he ran away, we could findhim. We had to know that physi-cally holding him for two hourswhile he screamed like LindaBlair in the movie The Exorcistwas necessary and would one daystop. We had to know the ex-tremely bizarre OCD behaviorswould end. We had to trust that

the antibiotics were reaching thecause, and that our bright, gentle,happy son would emerge fromthis Hell. I often envisioned theboy I knew was there trappedinside. I held that image nomatter what he looked like, orwhat he did.In four months time, on solely anintensive antibiotic regimen, thepsychotic rages finally did stop.My son remained detached, andRifampin was added for Bar-tonella. He began coming back tolife and continued slow but steadyimprovement thereafter, alsoimproving with treatment forMycoplasma fermentans. He contin-

ues treatment and has returned toa part-time schedule at school.There are no rages, no OCDbehaviors, no anorectic tenden-cies, though there are still someremaining cognitive deficitsreactive to the infection. My sonhas returned and is near well. Weowe this to the rare doctorswilling to treat our son’s tick-borne diseases to efficacy.While our family was able to pulltogether and weather this storm,we want the Lyme community tobe aware of the profound lack ofresources for those with psychiat-ric manifestation requiringhospitalization. It is currentlyimpossible to find a hospitaleducated in the symptoms ofneuroborelliosis and the treat-ment of Lyme disease that willprovide the safe psychiatricenvironment necessary, whilesupporting the treatment protocolrecommended by the physiciantreating the Lyme disease. As acommunity, this is something thatwe must change. No parentshould have to choose betweenproviding adequate treatment forLyme and a safe psychiatricenvironment for their child.

A Parent’s Journey

For protection, it wasnecessary to remove allobjects such as medica-tions, car keys, garagedoor openers andanything imaginablethat could be dangerousduring psychosis. It wasnecessary to create atotal lock down psychward at home for thesemonths.

Summer 2005 35

Making the decision tohave a child - it’smomentous. It is todecide forever to haveyour heart go walkingoutside your body.

~Elizabeth Stone

It is well known that B. burgdorferi, the agent of Lyme, can cross theplacenta and infect the fetus. In addition, breast milk from infectedmothers has been shown to harbor spirochetes that can be detected byPCR and grown in culture.The Lyme Disease Foundation in Hartford, CT had kept a pregnancyregistry since the late 1980s. It was found that if patients were main-tained on adequate doses of antibiotic therapy during gestation, thenno babies were born with Lyme. My own experience over the last tenyears agrees with this.Dr. Charles Ray Jones, a pediatrician who practices in Connecticut, hastreated and kept records on literally hundreds of babies born withLyme disease, having contracted it as an intrauterine infection. Hetreats these children with antibiotics and finds that they generally dowell, provided that treatment is aggressive and of adequate duration.Occasionally, he has to retreat these patients as Lyme infections arechronic and can tend to recur.The options for treating the mother include oral, intramuscular, andintravenous therapy.Oral regimens include amoxicillin, 1000 mg every 6 hours, andcefuroxime axetil (Ceftin), 1000 mg every 12 hours with food. Wealways document peak and trough serum levels at the start of gestationand at least once more during treatment. We like to see a peak levelabove 10, with a trough at least 3. These levels apply for either medica-tion.For patients who are very ill, or in those who cannot tolerate oralmedications or achieve adequate levels, then parenteral therapy is given.Choices include benzathine penicillin (Bicillin LA), 1.2 million units IMthree times per week. Intravenous can include ceftriaxone, 2g IV daily,or cefotaxime, 6g daily either as a continuous infusion or as 2g IV q8h.During pregnancy, symptoms generally are mild as the hormonalchanges seem to mask many symptoms. However, post-partum,mothers have a rough time, with a sudden return of all their Lymesymptoms including profound fatigue. We advise against breast feedingfor obvious reasons as mentioned above, and we always advise help inthe home for at least the first month, so adequate rest and time forneeded treatments is assured.

Lyme Disease and Pregnancy

Lyme and Pregnancy

by Joseph J. Burrascano Jr., M.D.

36 LymeTimes

Background:Maternal-fetal transmission ofBorrelia burgdorferi (Bb), the caus-ative agent of Lyme disease,although found to be associatedwith adverse outcomes andincreased cases of congenitalinfection, has been met withdivergent professional opinionsrequiring further research toresolve. The exact incidenceand capability of transplacentaltransmission of the spirochete,Borrelia burgdorferi, has raisedconcern as a result of transmis-sion of several other spirochetalagents, including Treponemapallidum. Syphilis and Lymedisease (LD) are both caused byspiral-shaped bacteria, calledspirochetes, so the inferencemay be drawn that the diseaseprocesses are likely to be similar.Years of research on congenitalsyphilis (CS), caused by thespirochete T. pallidum, demon-strated that CS surveillance iscomplicated by difficulty inestablishing the diagnosis, thatmost infants born with CS haveno signs of disease at birth, andthat it is almost entirely prevent-able with early prenatal screeningand treatment. (1)Gestational Lyme disease contin-ues to be an often misunderstoodand misdiagnosed condition. A

Gestational Lyme Disease Case Studies of 102 Live Births

by Charles Ray Jones, M.D., Harold Smith, M.D., Edina Gibb,and Lorraine Johnson, JD, MBA

Gestational Lyme Studies

Gestational Lyme: Frequency, Prevention & Treatment

According to Charles RayJones, M.D., out of over 7,000children seen, 300 (approxi-mately 4%) have gestationalLyme. Data from his practiceindicated that of 66 motherswith Lyme disease who weretreated with antibiotics prior toconception and during theentire pregnancy, all gave birthto normal healthy infants.However, 8 pregnanciesresulted in Borrelia burgdorferiand/or Bartonella henselaepositive placentas, umbilicalcords, and/or foreskin rem-nants. Those with positivePCRs were treated with 6months of oral antibiotics andare without symptoms 3months to 4 years later.

significant number of past studiesconducted on LD during preg-nancy have repeatedly foundpregnancies resulting in adverse

fetal outcomes and cases thatpresented with clinical findingspossibly caused by transmissionof Lyme disease but the lack ofpositive diagnostic testing usingELISA, indirect fluorescentantibody ( IFA), and Western blothas left researchers still question-ing the cause of these findings as

being Lyme disease. Therefore, inlight of a recent report by Dr.Steven Phillips, et al (2) showingthe inadequacies of currently

accepted standards for serologicdiagnosis using the ELISA andWestern blot, dismissal of Bb inmaternal-fetal transmissionbased on this type of testing isnot possible. Another reasonfor concern is that prior clinicalstudies determined that shortercourses of antibiotic treatmenthave resulted in 50% of victimssuffering from a persistentinfection both in early localizedBorreliosis and later dissemi-nated intracellular Borreliosis.(3) The insidious nature ofgestational LD can present acomplicated diagnosis due tothe delay of presentation, themultisystemic often transientnature of symptoms that canvary in degree of severity andchange with progression of thedisease, and finally, theunreliability of standard diag-nostic tests.

Objective:To better define the diversity inmanifestations of gestationalLyme disease and present a morehomogenous list of clinicalsymptoms. Provide more effec-tive treatment protocols thataddress the three major Ixodes

Summer 2005 37

scapularis tick-borne illnesses (Lyme disease, Babesio-sis, and Erhlichiosis).Methodology:Comprehensive case history studies on one hundredand two pediatric or adolescent patients diagnosedwith gestational Lyme disease. The diagnosis of thechildren was clinical. Although identical testing wasnot performed for each child, positive diagnostictests were as follows: ELISA—25%, Western blot—58%, LUAT—25%, Culture—37%, PCR (urine)—4%, PCR (blood)—7%, SPECT scan—11%, MRI—8%. The rate of various co-infections were: strep—7%, leptospirosis—5%, fungal or yeast—4%,ehrlichiosis—6%, babesiosis—14%.Results:The mothers of children in this study all had eitheruntreated or partially treated LD, some as a result ofIxodes scapularis tick attachments actually during theirpregnancy. Most often, the mothers were diagnosedprior to their children when the children werebetween one and five years of age. A retrospectiveanalysis of the progression of symptoms revealedthat oftentimes many initial symptoms were presentin the infants, however, were overlooked until theygradually progressed in frequency and severity.All the mothers had untreated or inadequatelytreated Lyme prior to or during pregnancy and 16%had received some treatment prior to their preg-nancy. Sixty-six percent had a difficult pregnancy,most notable for, but not always inclusive of thefollowing: complications during pregnancy, falselabor, history of spontaneous abortions, severefatigue unresolved by rest, nausea, vomiting, fevers,impaired cognitive function, inability to functionduring the pregnancy, and illness that continuedbeyond the delivery. Forty-one percent of themothers breast fed their children. Although gesta-tional Lyme disease symptoms may present subtly atbirth, the implication may be drawn that seriousneurological disease will result without promptdiagnosis and treatment. In fact, the children of thisstudy were diagnosed typically between one and fiveyears of age and by this point were completelystricken with a deeply entrenched and chronic

Borrelial neurological infection. Several of the casesexperienced further deterioration following expo-sure to Bb through subsequent tick bites and asignificant number were also infected with multipletick-borne pathogens.Systemic abnormalities were common, with 59% ofthe children exhibiting low grade fevers, 72% withfatigue and lack of stamina, and 23% with nightsweats. Forty-two percent of the children were paleand sickly with dark circles under the eyes. GIsymptoms were also common: GERD (27%),abdominal pain (29%), diarrhea or constipation(32%), and nausea (23%). Twenty-three percent ofthe children had cardiac abnormalities, includingpalpitations/PVC, heart murmur, and mitral valveprolapse. Orthopedic disorders presented as jointedsensitivity (55%), pain (69%), generalized musclepain or spasms (23%), and stiffness or retardedmotion (23%). Upper respiratory infections werecommon.Only 6% of the children presented with a greaterdegree of arthritic symptoms, while the majority ofchildren presented with extensive neurologicalsymptoms. Neurological presentations most com-mon in this study were headaches (50%), irritability(54%), and poor memory (39%). Developmentaldelays occurred in 18% of the children, 11% hadseizure disorder, 30% had vertigo, 14% had ticdisorders, and 9% had involuntary athetoid move-ments. Many disabling symptoms affecting learningand rendering children unable to perform well inand out of school, including cognitive (27%), speechdelay (21%), reading/writing (19%), articulation(17%), auditory/visiual processing problems (13%),word selectivity (12%), and dyslexia (8%). Theneuropsychiatric symptoms were widespread (anxi-ety—21%, anger or rage—23%, aggression orviolence—13%, OCD—11%, irritability or moodswings—54%, emotional—13%, depression—13%)and sadly didid not exclude even suicidal thoughts(7%). Hyperactivity, lack of concentration, and thediagnosis of ADD all together afflicted 56% of thechildren in the study. Sensory sensitivity manifestedas hyperacuity (36%), photophobia (43%), motionsickness (9%), and other (tactile, taste or smell)

Gestational Lyme Studies

38 LymeTimes

(23%). Nine- percent of the children had autism.Awareness among physicians also must be raised asto the less obvious adverse outcomes of maternaltransmission of Lyme disease to the unborn fetus.A common symptom in infants is hypotonia (7%) asa result of neuroborreliosis. One child with symp-toms of drooling, poor muscle tone and speechimpediment improved with antibiotic treatmentsuch that the child was able to pursue activities of anormal 2-year-old. In another case, the amnioticfluid and cord blood both tested positive for Bb,and the infant was born weighing only 5lbs. Al-though the child initially did have signs of earlyLyme disease her continued treatment has preventedprogression of symptoms. She is still undergoingantibiotic therapy but is doing well.The most striking aspect of these cases is the

multisystemic threat that this illness possesses.There were cases which manifested few symptoms.This does not make their disease innocuous but ismore representative of a low infectious load and ahealthy immune response. However, this was morethe exception than the rule. Some abnormalitiesalone might appear trivial and even unrelated,however, it is the combination of symptoms and theassault that the Bb bacteria makes on many systemsthat develops a pattern. As the chart below suggests,most children had more than one body systeminvolved. Instead of seeking numerous causes fromseparate origins to explain vague, mounting,multisystemic symptoms, it is much more logical torealize one probable cause, which in these cases isLyme disease. All children in the study improvedwith prolonged antibiotic therapy.

Frequency of Gestational Lyme Symptoms in ChildrenAccording to Charles Ray Jones, M.D., most of the children born with gestational Lyme disease havemanifestations of the disease at, or shortly after birth.

% Symptoms40 Gastroesophageal reflux with vomiting and coughing80 Irritability60 Low grade fevers, pallor, and dark circles under their eyes72 Fatigue and lack of stamina23 Secondary rashes45 Other rashes30 Eye problems: posterior cataracts, myopia, astigmatism, conjunctival erythema (Lyme eyes),

optic nerve atrophy and optic neuritis and/or uveitis40 Frequent upper respiratory tract infections and otitis20 Abdominal pain40 Noise, light and skin sensitivity50 Arthritis and painful joints18 Developmental delay, including language, speech problems and hypotonia80 Cognitive problems, learning disabilities and mood swings30 Cavernous hemagiomas

Diagnostic Tests50 Positive Western blots20 Positive PCRs21 Positive LUATS37 Positive Bb blood cultures11 Positive Brain SPECT80 Neuropsychological evaluation confirmed cognitive problems

Gestational Lyme Studies

Summer 2005 39

Transmission of Lyme disease by tick is well known. How-ever, some studies have provided evidence of gestational trans-mission and others have suggested transmission through lacta-tion. In addition, transmission by intimate human contact hasbeen hypothesized. Given the implications, for the fetus andinfants, it is essential that more research be done in this area,so that the mother can be treated efficaciously.

Gestational Lyme Disease Bibliographyby Lorraine Johnson, JD, MBA

Bale, J. F., Jr. and J. R. Murph (1992). “Congenitalinfections and the nervous system.” Pediatr Clin North Am39(4): 669-90.Borrelia burgdorferi can potentially infect the fetus andcause adverse fetal outcomes.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Gardner, T. (1995). Lyme disease. Infectious diseases ofthe fetus and newborn infant. J. S. Remington and J. O.Klein. Philadelphia, Saunders. Chap. 11: 447-528.”A total of 46 cases of adverse outcomes of these 161cases of gestational Lyme borreliosis were found,including miscarriage, stillbirth, perinatal death, congenitalanomalies, systemic illness, early-onset fulminant or mildsepsis and later-onset chronic progressiveinfection....Thirty-seven percent of the total number ofadverse outcomes were miscarriages or fetal deaths, 11percent were neonatal deaths and 48 percent were eitherfetal or neonatal deaths.” The effect of antibiotic therapywas dramatic in these patients: with antibiotics, 85% ofneonates were normal, while 15% had an adverseoutcome. In striking contrast, without antibiotics, only 33%were normal, while 67% had an adverse outcome.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

MacDonald, A. B. (1986). “Human fetal borreliosis,toxemia of pregnancy, and fetal death.” Zentralbl BakteriolMikrobiol Hyg [A] 263(1-2): 189-200.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~MacDonald, A. B. (1989). “Gestational Lyme borreliosis.Implications for the fetus.” Rheum Dis Clin North Am 15(4):657-77.Great diversity of clinical expression of signs and symptoms ofgestational Lyme borreliosis parallels the diversity of prenatalsyphilis. It is documented that transplacental transmission ofthe spirochete from mother to fetus is possible. Furtherresearch is necessary to investigate possible teratogeniceffects that might occur if the spirochete reaches the fetusduring the period of organogenesis. Autopsy and clinicalstudies have associated gestational Lyme borreliosis withvarious medical problems including fetal death, hydroceph-alus, cardiovascular anomalies, neonatal respiratory distress,hyperbilirubinemia, intrauterine growth retardation, cortical

blindness, sudden infant death syndrome, and maternaltoxemia of pregnancy. It is my expectation that the spectrumof gestational Lyme borreliosis will expand into many of theclinical domains of prenatal syphilis.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

MacDonald, A. B., J. L. Benach, et al. (1987). “Stillbirthfollowing maternal Lyme disease.” N Y State J Med87(11): 615-6.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Markowitz, L. E., A. C. Steere, et al. (1986). “Lymedisease during pregnancy.” Jama 255(24): 3394-6. Because the etiologic agent of Lyme disease is aspirochete, there has been concern about the effect ofmaternal Lyme disease on pregnancy outcome. Wereviewed cases of Lyme disease in pregnant women whowere identified before knowledge of the pregnancyoutcomes. Nineteen cases were identified with onsetbetween 1976 and 1984. Eight of the women wereaffected during the first trimester, seven during thesecond trimester, and two during the third trimester; intwo, the trimester of onset was unknown. Thirteenreceived appropriate antibiotic therapy for Lyme disease.Of the 19 pregnancies, five had adverse outcomes,including syndactyly, cortical blindness, intra-uterine fetaldeath, prematurity, and rash in the newborn. Adverseoutcomes occurred in cases with infection during each ofthe trimesters. Although B burgdorferi could not beimplicated directly in any of the adverse outcomes, thefrequency of such outcomes warrants further surveillanceand studies of pregnant women with Lyme disease.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Schlesinger, P. A., P. H. Duray, et al. (1985). “Maternal-fetal transmission of the Lyme disease spirochete,Borrelia burgdorferi.” Ann Intern Med 103(1): 67-8.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Weber, K., H. J. Bratzke, et al. (1988). “Borreliaburgdorferi in a newborn despite oral penicillin for Lymeborreliosis during pregnancy.” Pediatr Infect Dis J 7(4):286-9.

Gestational Lyme Bibliography

40 LymeTimes

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Brzostek, T. (2004). “[Human granulocytic ehrlichiosis co-incident with Lyme borreliosis in pregnant woman—acase study].” Przegl Epidemiol 58(2): 289-94.Thrombocytopenia, fever and fatigue were observed in a25 year-old woman in her 29th week of pregnancy in aLyme endemic area. In the last 7 weeks erythemamigrans was present. The woman was not treated by thattime. The infant presented thrombocytopenia in the firstfew weeks of life. 3 months after delivery erythemamigrans disseminata was observed, by that time Lymeborreliosis and HGE were serologically confirmed. It wasnot confirmed that the infection was transferred to theinfant, but it is possible that thrombocytopenia wascaused by the infection with A. phagocytophila.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Goldenberg, R. L. and C. Thompson (2003). “The infectiousorigins of stillbirth.” Am J Obstet Gynecol 189(3): 861-73.In areas where syphilis is very prevalent, up to half of allstillbirths may be caused by this infection alone. Malaria maybe an important cause of stillbirth in women infected for thefirst time in pregnancy. Toxoplasma gondii, ... and Lymedisease have all been implicated as etiologic for stillbirth.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Gustafson, J. M., E. C. Burgess, et al. (1993). “Intrauterinetransmission of Borrelia burgdorferi in dogs.” Am J Vet Res54(6): 882-90.10 female Beagles were inoculated intradermally with …Bburgdorferi. Of 10 spirochete-inoculated (SI) females, 8became infected with B burgdorferi as evidenced by spiro-chete culture results and/or PCR-detected B burgdorferi DNAin the tissues of females or their pups. Of the 10 SI females, 8delivered litters (3 to 7 pups) that had at least 1 neonatal or 6-week-old pup with B burgdorferi DNA-positive tissues (byPCR), and spirochetes were cultured from tissues from pupsof 2 litters.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Maraspin, V., J. Cimperman, et al. (1999). “Erythema migransin pregnancy.” Wien Klin Wochenschr 111(22-23): 933-40.From 1990 through to 1997, 105 pregnant women with typicalEM were investigated at the Lyme Borreliosis Outpatients’Clinic of the Department of Infectious Diseases at theUniversity Medical Centre in Ljubljana, Slovenia. All patientswere treated for 14 days except three (2.9%) in whom thetreatment with ceftriaxone was discontinued because of mildside effects. Ninety-three (88.6%) out of 105 patients hadnormal pregnancies; the infants were delivered at term, wereclinically healthy, and subsequently had a normal psychomo-tor development. In the remaining 12 (11.4%) patients anadverse outcome was observed. Two (1.9%) pregnanciesended with an abortion (one missed abortion at 9 weeks, onespontaneous abortion at 10 weeks), and six (5.7%) withpreterm birth. One of the preterm babies had cardiac abnor-malities and two died shortly after birth. Four (3.8%) babiesborn at term were found to have congenital anomalies; onehad syndactyly at birth and three had urologic abnormalitieswhich were registered at the age of 5, 7, and 10 months,respectively. A causal association with borrelial infection wasnot proven in any infant. For at least some unfavourableoutcomes a plausible explanation not associated with Lymeborreliosis was found.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Harvey, W. T. and P. Salvato (2003), “Lyme disease: ancientengine of an unrecognized borreliosis pandemic?”, MedicalHypotheses 60(5), 742–759.No serious or credible epidemiological studies have attemptedto identify the true rate of human congenital [Bb] transfer. Theonly method we have of estimating congenital human [Bb]transfer is by other intra-human illnesses. Transfer rates ofCytomegalovirus, Toxoplasmosis and Treponema pallidumrange from 14% to 68%.

Gestational Lyme Bibliography

Transplacental Babesiainfection in dogs”This is the first confirmed report of transplacentalBabesia infection in any animal species.”

A Babesia gibsoni infected bitch was mated withan uninfected dog in order to determine whetherthis parasite could be vertically transmitted. Thebitch delivered a litter of four live and one stillbornpup. The four pups died from congenital babesio-sis between 14 and 39 days post-birth. Babesiagibsoni DNA was detected in tissue from all fivepups. These results show that vertical transmis-sion occurred by the uterine route and not via thetransmammary route. This is the first confirmedreport of transplacental Babesia infection in anyanimal species.

Fukumoto S., Fatal experimental transplacentalBabesia gibsoni infections in dogs, Int J Parasitol.2005 Jun 23

LactationSchmidt, B. L., E. Aberer, et al. (1995). “Detection ofBorrelia burgdorferi DNA by polymerase chain reactionin the urine and breast milk of patients with Lymeborreliosis.” Diagn Microbiol Infect Dis 21(3): 121-8. Inaddition to urine, breast milk from two lactating womenwith erythema migrans was tested and also foundreactive.

Altaie, S. S., S. Mookherjee, et al. (1996). Abstract # I-17 Transmission of Borrelia burgdorferi from experi-mentally infected mating pairs to offspring in a murinemodel. FDA Science Forum. Transmission via breastmilk demonstrated in murine model.

Summer 2005 41

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I’d like ______ Lyme-green wristbands with the CALDA URL and Lyme Disease - AHidden Epidemic! $2 each, minimum order 10. I enclose $________(min. $20)I’d like ___ Lyme-green T-shirts with the CALDA logo and the caption: Ticks suck...andgive you Lyme disease! Adult Sizes S___ M___ L ___ XL___. I enclose $15 for each.I enclose my check or money order for the total amount of $________________.

Please consider donating to honor family and friends at important occasions such as anniversaries,birthdays, holidays, graduations, memorials and thank yous, etc. Make your check payable toCALDA and mail with this form to CALDA, PO Box 707, Weaverville, CA 96093.

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________________________________________________________________________________________Street

_________________________________________________________________________________________City State Zip Code

Summer 2005 43

Pediatric Links

Helpful Pediatric Internet LinksCalifornia Lyme Disease Association

www.calda.intranets.com

This INTRANET contains advocacy informationfor patients, children and families. Issues ofthe special children’s treatment issue of theLyme Times as well as the upcoming children’seducational issue are available here. Backissues with articles about children and Lymeare also available.

Int’l Lyme & Associated Disease Society

www.ilads.org

Position papers and practice guidelines on thelatest diagnostic methods and treatments inthe management of tick-borne diseases.

Columbia University-Lyme DiseaseResearch Studies

www.columbia-lyme.org/index.html

Neuropsychological testing, medical workup,cognitive/neuropsychiatric problems in childrenwith Lyme is covered.

Time for Lyme

www.timeforlyme.org

The video “The Student, the Educator and LymeDisease” is in the resource section.

Lyme Disease Association, Inc.

www.lymediseaseassociation.org

The LDA operates on a national level andprovides considerable resources for parents,schools and families. Their book “Lyme is NoFun”, the ABC’s pamphlet, published articlesand video are included as well as informationon their fund, Lyme Aid 4 Kids, which assistsfamilies without insurance obtain a diagnosis.

Lyme Info

www.lymeinfo.net/directory.html

Links dedicated to children with Lyme, includingteachers’ resources, scout badges, etc. Scrolldown to “Children and Families” under directory.

The Families and Advocates Partnershipfor Education (FAPE)

www.fape.org

National Association of State Boards ofEducation

www.nasbe.org

Special Education, Law & Advocacy-Wrightslaw

www.wrightslaw.com

Pacer Center-Parent Advocacy Coalitionfor Educational Rights

www.pacer.org

Nat’l Assn of Parents with Children inSpecial Education

www.napcse.org

Nat’l Dissemination Center for Childrenwith Disabilities (NICHCY)

www.nichcy.org

Educational Assistance Resources

Parents of Children with Lyme

www.poc.org/index.html

Educational links, Lyme links, personal stories,and information on tick-borne diseases.

LDA of Southeastern Pennsylvania

www.lympepa.org

Maintains Lymeteens, a private email group forteens with Lyme disease.