I am proud to be here today, speaking on behalf of the rights and needs of children with chronic

Lyme disease, and their parents.

The medical complexities of this illness have been well-documented. We know we are dealing

with a multi-system presentation, and a clinical diagnosis, not one based on blood tests!! We

know it is extremely difficult to treat, considering differences in patients’ immune system

responses, and the presence or absence of co-infections. When we talk about Lyme disease in

children, of vital importance is the neuropsychiatric implications of this illness, and its effect on

a child’s ability to function, and the stress on the family.

I first recognized Lyme disease in a 15-year old boy that I saw for counseling in 1991. He was

referred to me because he had what appeared to be paranoia and difficulty sleeping. He was

refusing to go to school. He had been an honors student, and was now failing everything.

The extent of his volunteer work at a local environmental center caused me to suspect Lyme, and

at my suggestion, his mother immediately took him to his pediatrician, who took a titer, and

dismissed it as not Lyme when it came back negative. His mother then sought a second opinion,

from a doctor I knew to be Lyme-knowledgeable, a clinical diagnosis of Lyme disease was

made, and he was started on antibiotics that crossed the blood brain barrier. Severe psychotic

symptoms began to disappear in three days. The illness, however, persisted for years, he was

cognitively and physically impaired for much of that time, and missed a year and a half of high

school. He persisted through college, doing very well at times, not doing so well when

symptoms returned, but he graduated from a highly competitive college, and eventually went on

to graduate school.

I have this young man to thank for beginning to teach me how bad Lyme disease can get in

children, how hard it can be on a family (his mother and 2 sisters were ill, as well), and how

important it is to have educated medical and school professionals treating, teaching, and

supporting these kids. That excellent doctor, by the way, the one that diagnosed and began

Now, what if I had not known about Lyme disease? What if his mother had dismissed my

suggestion that a medical illness might have caused her son’s psychiatric and behavioral

problems? What if no Lyme-knowledgeable doctor had been available to see him? What if the

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school had not believed what we were discovering, that this child’s refusal to go to school, his

paranoia, his inability to function academically, was caused by Lyme disease?

undiagnosed or undertreated Lyme disease. Some are seen as hypochondriacs by their doctors,

malingerers and/or delinquents by their schools. Some are given psychiatric diagnoses that are

wrong, and psychotherapy treatment that is ineffective. Some even end up in psychiatric

hospitals, as my first client with Lyme surely would have, with no one looking at the infectious

My professional introduction into the world of Lyme occurred 15 years ago. I am outraged by

There are medical conferences in which new material is presented on Lyme and other tick-borne

diseases by significant researchers, including those who are researching Lyme on behalf of the

military. There are physicians who have successfully treated thousands of chronic Lyme

patients, patients who are now well and functioning, after having been misdiagnosed or

undertreated when Lyme was first suspected. Yet so many doctors who serve populations in

highly endemic areas refuse to attend the conferences. How can they even diagnose patients in

Lyme endemic areas without understanding Lyme disease?

There are some courageous ones who have not abandoned their patients, not yielded to the

pressure of their colleagues and the HMOs. They understand this complex illness and have the

courage to treat efficaciously. They recognize the devastation of this disease, and are willing to

collaborate with Lyme-literate adjunctive professionals – psychotherapists, neuropsychologists,

psychiatrists – to build a safety net and treatment net around very ill patients. Those with little

knowledge of Lyme then dare to testify against these doctors, instead of learning from them.

Unbelievably, some are even sworn in as “expert witnesses” on behalf of health departments that

bring actions against our doctors. And those Lyme-ignorant doctors continue to practice, in

Now, since 1991, I look back on the many, many children I have seen with chronic Lyme,

presenting with psychosis, mood disorders, sleep problems, debilitating headaches and fatigue,

just about any symptom you can imagine. Some were born with Lyme, or contracted it at a very

young age. Many had no life experience of wellness before Lyme took over their young lives.

Families struggle to find doctors to accurately diagnose and treat these children. Many families

endure the illness of multiple family members. The costs of treatment can be astronomical.

Surrounding these families and these courageous doctors is a culture of ignorance, criticism and

blame, that attacks the Lyme doctors and extends further, to the schools and out into the

community. Parents are accused of child neglect for keeping their child home, when a physician

has said that the child is too ill to attend school! Schools have refused to accept the diagnosis

and modify the child’s school program to support the child in the school setting, when he is well

enough to return! Families are split, when one parent does extensive research, to understand this

illness that is so devastating to their child’s life and functioning, while the other, lacking

knowledge and refusing to learn, denies the child’s illness, or the serious symptoms it causes.

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The situation these families are in is outrageous, and it is brought about by a large medical

community that, for the most part, refuses to learn about this complex, debilitating illness. They

further refuse to acknowledge that these chronically ill patients cannot be treated, or their severe

We have a complicated medical illness that requires a great deal of time from physicians,

learning about the illness, diagnosing accurately and comprehensively, and treating

efficaciously. And, where children are concerned, their serious impairments, physically and

neuropsychiatrically, can not only limit their current ability to function, but destroy their future!

In order to educate these children, the schools also need to abandon cookie-cutter, assemblyline

approaches to education. Schools that develop strategies for teaching their students with Lyme

disease, with Lyme-educated faculty, faculty that understands the complex needs of the

individual child, will take pride in what they accomplish with these kids. Those that complain

about the cost, fighting the diagnosis, making false reports of child neglect against parents,

refusing to comply with special education and civil rights laws that protect the rights of these

kids, will have ongoing conflicts with parents and advocates, and at times, attorneys, spending

valuable resources, financial and other, in unnecessary legal battles. And where there is

contentiousness and conflict, the atmosphere will not be supportive of these kids, whose very

lives and futures are at stake here.

On the other hand, the supportive school can do a great deal to give the children hope, for the

future, and for their place in this world.

Again and again, parents have told me how grateful they are to the Lyme literate doctors who are

willing to treat their children, how much they respect and admire them for their wisdom and

thoroughness, their compassion and perseverance in getting their children well. Again and again

parents tell me how frustrating it is that they cannot find a doctor to treat their children closer to

their homes, because so many doctors are fearful that if they begin to treat Lyme disease patients,

their practices may be at risk, their licenses might be in jeopardy. One mother that I know, ill

with Lyme herself, and the mother of two Lyme patients, has a 5 hour round trip to take her

children to the doctor who is making them well. This mother’s son, now age 15, returned to

school a few months ago after being on homebound instruction for 3 years, due to the severity of

his illness. Another mother, her three children all on IV antibiotics, has needed to withdraw her

children from school, and enroll them in a home schooling program, due to the school district’s

continuous refusal to comply with the law, and educate her children. She, too, has had to travel

out of state to get treatment for her kids.

Doctors need to be willing to open their eyes, examine the available literature, all of it, and

realize what they are dealing with in the Lyme endemic communities. They need to fight the

insurance companies’ guidelines for treatment, guidelines, by the way, that are often not peerreviewed.

Doctors need to practice medicine the old fashioned way – committing to treating

efficaciously, and to healing their patients. Doctors need to stand up against health departments

that arbitrarily prosecute Lyme doctors, in CT, in North Carolina, as well as in other states.

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Doctors need to support their colleagues, who take on the daunting task of treating these very ill,

very complex patients, support them when health departments bring charges against them.

Schools need to realize that although they are not the cause of the child’s chronic illness – that

responsibility goes to the doctors that failed to diagnose and treat the child when the infection

was new, they ARE part of the solution. They are responsible for educating ALL children in their

charge. Many of these kids are physically, cognitively, or emotionally challenged, due to an

illness not of their own making. They have as much of a right to be educated as those with no

disabilities.

I believe that all children have a right to grow up feeling safe and protected. That is the core of

what I have always believed. Doctors, educators, and others should all play a role in providing

for the safety, health and mental health of the children in our communities. I call on all of you to

do what you can to eliminate this culture of ignorance, criticism and blame that permeates the

world that children with Lyme disease are inhabiting. Support the kids. Support the parents.