Oversight Hearing
Lyme Disease: A Diagnostic and Treatment Dilemma
Senate Committee on Labor and Human Resources
August 5, 1993
430 Dirksen, 10:00 AM to 12:00 PM

Ruchana White (and son Evan)

Everybody helps when everybody knows everybody can get together and help. I want help now.

Until September 1990, Evan was the most popular boy in his class, an outstanding athlete, and an excellent student.

All of this changed, however, when Evan came down with flu-like symptoms. Because his area is endemic to Lyme disease, his doctor ordered that he be tested; the results came back positive. He was then referred to a pediatrician who specialized in infectious diseases and was started on a treatment of oral antibiotics.

Evan did not respond well to the medication. He had severe headaches and was unable to raise his head off the pillow. He was given the drug Rocephin intravenously and as a result developed gallbladder sludge. During this period, Evan never had a blood test nor did he receive treatment for his side effects.

Evan was referred to a pediatric neurologist who said that he was not medically ill; his sickness was psychological, despite the fact that the original blood tests which showed that he did indeed have antibodies to Lyme disease. His parents, obviously were confused: "You don't want to be sick when you're eleven, on the traveling soccer team, an excellent lacrosse player, and have many girl friends." However, they had placed their faith in the doctors and found it difficult to question their prognosis, As a result, mediation was stopped, and Evan began seeing a psychologist.

During the third month of psychological treatment, Evan's parents finally convinced the doctors that his illness was not "psychological": his head would fall to his shoulder, he was beginning to atrophy from head to toe, and his hearing had become so sensitive that the slightest noise was deafening.

The Whites went back to their original pediatrician who ran a complete battery of tests. it was then that they discovered that Evan's Lyme disease had "skyrocketed". Because there had been no treatment during the crucial part of his illness the disease had ravaged his body. The doctors were forced to admit that they did not know what to do.

In April 1991, the doctors placed Evan in a hospital and given the drug Claforan intravenously. He could not walk, would scream due to the severe pain of his headaches, and his speech was beginning to become unclear. Evan spent two weeks in intensive care during his two month stay in the hospital. During this time he also became desensitized to the Claforan.

That summer, Evan made many trips to the hospital. He was dehydrated and had to receive naso-gastric feedings. He was then sent to a children's specialist hospital in New Jersey. His great pain caused him to scream day and night. At this point, his parents described him as being "completely gone in body and mind"; he could only recognize his mother and father-- sometimes.

Evan has begun the slow road to recovery. He has attended the Helen Hayes Day Hospital for the past year and a half where he receives intensive rehabilitation five days a week. He has received multiple types of therapy: occupational, physical, speech, and acupuncture. The results of these painful treatments were evident by February 1992: he had strength in his hands.

His progress has been very slow but steady. His legs, arms, and head are much stronger now. He is able to get around with the use a walker. Although he can only speak a few words, his vocal chords have not; been damaged, nor has any other part of his body. He is much more aware of his surroundings. He has feelings and desires, and he wants very much to let the government know how catastrophic this disease has been to his life. He feels that there is a way out of everything and that there must be a way out of this as well.

Obviously, Lyme disease has had a devastating impact on Evan's life. Although he was one of the most popular boys in his class, he no longer has any friends. Classmates continue to call and to send post cards, but Evan refuses to see them until he is well. The trauma of watching Evan suffer has taken a toll on his older brother who is in college and his sister who is currently applying to medical school as well as researching Lyme disease. Fortunately, Evan's family has health insurance because his illness has so far cost over $2 million.

He has lost his education. He can no longer read nor write and has not attended school in over two years. School is difficult; he cannot identify words but sometimes something in a newspaper will jump out at him. He knows everything is locked away in the back of his head, but as of yet he is unable to find a way of accessing his knowledge: "Sometimes I feel like I am in a bubble, but just can't get out."

Evan communicates through hand gestures. Frustrated with his situation, he is often angry and irritable. He has no appetite; although he is five foot four inches, he weighs only eighty pounds. He suffers from insomnia. He enjoys watching television, but without any sound--any noise is deafening, even though he wears earplugs and headphones. His voice has changed and matured. "Help" is the word that he repeats most often.

Evan has many questions: "Why me? Why did this happen to me to make me so sick? Why is no one helping me?" He is aware that he is losing his childhood. He is now fourteen and wants to be a teenager and to play lacrosse and soccer and to have friends and to socialize. One day he would like to be a psychiatrist and a stand-up comic--he feels that he has plenty of experiences upon which to draw. He wonders how this is possible when he is chronically ill. He desperately wants others to know his story so that no more time will be wasted and that a cure will be discovered.