a nuerologist at Columbia told me he is now in or just graduated from law school.

Evan White took YEARS of treatment and therapy to get to 100%

i think this essay was written in 1996 or 1997.

"Severe neurologic Lyme is reversible"
by Ruchana White (Evan's mom)

Evan White, bright, active and fun-loving, became so ill he could not walk, talk, read or write. �He barely functioned for three and a half years. �Evan spent three years in the hospital. �He did not attend school for four years, missing 7th, 8th, 9th and 10th grades.

At 12 years old he was nearly neurologically dead and atrophied from head to toe. �Wearing neck, body and leg braces to hold himself in a sitting position, Evan was tied to a wheelchair. �Unable to sleep from terrible head pain, in fetal position, he screamed in agony most of the
day. �

His great sensitivity to sound meant that he had to stay in very quite places with earplugs and earphones in and on his ears. �Sometimes able to watch television with no sound, he learned to read lips and eventually developed his own sign language, which was so clever and
universal everyone could understand him. �

Evan refused to learn official sign language because he knew he would get well. �This limited communication brought Evan back into a learning mode.

In August of 1993 Evan and I (his mother) testified for the United States Senate Hearings on Lyme Disease chaired by Sen. Edward Kennedy.

Evan forced himself to go to Washington. �With terrible head pain, in a wheelchair, with his tremendous noise sensitivity, Evan braved the noise of an airplane trip because he had a goal. �

His goal was to tell the government how he and other children lived in PAIN and no one listened to their cries! �They were losing their precious childhood years. �

Evan, pushing me away to speak on his own, uttered his first broken words in three years at the hearings:

"Everyone must know so everyone can help. �We need help now!"

The senators had tears in their eyes while he tried to express his feelings int he Senate Hearing Room.

Highlights of the hearing were televised and printed all over the world. �Evan received a wonderful letter from Senator Kennedy, expressing his thanks and promising help. �

Evan was so hopeful! �He waited and waited. �People from all over the United States called to ask if the government had followed up to find a cure. �We had no answer! �We are still waiting for a direction and cure for chronic Lyme
disease.

When we arrived home in New York from the Senate Hearings, Evan stood up, trying to hold on to a walker. �As he struggled to stand, he fell, breaking both of his hips because of osteoporosis. �

This can happen to children who have not been mobile for a long time. �After all the crises and horrors we had lived through these past years; the hospitalizations, the immobility, the digestive problems, the speech problems, the pain; I feared the worst. �

When Evan passed out and was lying unconscious on the floor, my heart went to my throat as I called 911. �I thought we had really lost him.

Evan's strong will to recover and live a normal life prevailed. �He had surgery on both hips and started to improve again. �He knew what life could be and wanted his life back again! �He had incredible inner
strength.

In December of 1993, after being off antibiotics for a year and a half, Evan went on Bicillin shots. �As time went on his speech returned and got better and better. �However he still had head pain. �Our home had become the home of a handicapped child. �We had a ramp, aChairglide, special bathroom facilities. �

We couldn't run water, vacuum, use the dishwater or listen to television of music. �We have two other active children, but our home was a quiet zone. �The White house ain't what it used to be!

In March of 1994 Evan received a wish from he Children's Wish Foundation. �His wish was to meet basketball player Shaquille O'Neill.

With all of his head pain and sound sensitivity, Evan, his dad, sister Nicole in her second year of medical school-first in her class (we are proud), and brother Daniel, captain of the Skidmore College ice hockey team and first in goal scoring in the United States- Division Three (we are proud) and Mom went to Orlando. �

In the Orlando Magic locker room Evan hid his wheelchair and propped himself up against the wall, holding a tripod cane. �He did not want Shaquille to see him in a wheelchair. �Shaquille came out around the corner (the hugest, biggest, smiling man) saying, "Evan, my man, how are you?" �

We all spoke for a while as the photographers took pictures of Evan and Shaq and us. �This exciting moment was a great help to Evan and another step toward his
recovery.

We were guests of the Orlando Magic's in theitr Sky Box for the game. �Unfortunately Evan had to sit in the hall and outside on the patio, because the noise was so loud and his head was killing him. �But he persevered! �

As part of the wish the family had a week at Disney
World. �We took Evan into the park but had to leave immediately, he was so ill. �The good part of the trip was that each step and experience Evan took gave him hope. �

As my husband, Ken, (the man behind the mother and child) says, "Senator Kennedy helped Evan to talk and
Shaquille O'Neill helped Evan to walk." �If you don't have goals, no matter how ill you are, you will never get anywhere! �

Empower yourself! �Evan tells us now that when he was at his very worst, not able to move a muscle or utter a word, in severe pain, he had a goal. He would move one toe at a time, then one finger.

When he was losing his speech and his body and his mind were dying on him, Evan would say, "Help me! �Please believe me!" �At that point there were doctors and nurses who did not believe him and he could feel it! �So sad that aside from having to deal with being so sick, the
caretakers that he depended on didn't believe him.

Evan knew he had to help himself, by himself. �His body was failing him because of the disease and he knew it. �It was not psychosomatic! He was not malingering! �He wanted to be on his travel soccer team, play lacrosse, ski, and of course flirt with the girls he always loved.

Humor has been one of Evan's greatest assets. �He would raise his middle finger at various individuals he did not trust and smile in an innocent way. �This was his only release from the frustration of dealing with adults who didn't understand or trust him. �

My husband noticed and picked up on this. �Evan's dad now utilized humor as an integral part of the therapy for his child. �We had different roles: education and interaction with the Lyme disease community was mine, his was humor therapy. �

We saw signs of awareness in Evan now. �His dad
would bring Evan posters of the Sports Illustrated bathing suit models with my head on them, or basketball players with family members' heads, funny videos, waterguns, etc.

Another child with Lyme disease, curled up in a ball and screaming in pain, was admitted to the hospital. �This very serious children's hospital was surprised by he jello-fight therapy, water guns and sexy posters. �Humor therapy is the only way to go when thing else works. It brings positive reactions and hope! �We teach never give up no
matter what.

During the worst times of Lyme disease Evan's therapies included what ever worked- acupuncture (by a great blind doctor, who had a real insight), massage, biofeedback, physical, occupational and speech therapy, psychiatry, and antibiotic therapy. �There was bad doctoring
at first and then some real good doctoring.

As the Bicillin therapy continued into the spring of 1994, Evan started to identify pictures. �Newspaper headlines were popping out at him and he knew what they meant. �He still could not read and did not know the alphabet or numbers. �He did not even know the letters of his
name. �Neurologically he tested very poorly. �By May he started to walk and read and his speech became better. �

Evan was out of school for four years and unable to obtain a formal education program (I.E.P.) tailored to his needs, and was classified in his school district. �He planned on
going to high school in the fall after a three and a half year stay in the hospital.

That same month Evan left Helen Hayes Hospital. �He was able to be tutored at home in mathematics, English, history and science in June and July. �In August, Evan was given a three-hour high school math exam. �He scored 93%. �How is this possible after four years of no education?

School began in September. �Evan struggled through every day. �He signed up for a full load of five courses: biology, 10th grade English, math, history and Spanish. �In pain, using his acting skills, he faked the way he felt in front of his friends. �

Limping to his classes, coming in late some mornings and being absent on sick days needed to be explained over and over to educators who had difficulty understanding his situation in a compassionate way. �

A child who could easily have gotten A's with no home tutoring needed to attend a real school atmosphere to reach his own goals. �Evan's goal was to have a normal,
fun, thriving life like other children was constantly challenged by the outside world. �A doctor friend once told me that the healthy never believe the sick!

Evan was certainly determined! �A year before this he weighed 80 pounds and could not eat. �Now he set up an exercise program of body building for himself: 100 push-ups and 100 sit-ups a day plus weight lifting. �Evan came home each day exhausted and in pain, but forced
himself to work through his exercise program.

In December of 1995 Evan took himself off antibiotics. �One year had passed and he had progressively gotten better and was functioning on a higher and more normal level.

In March we were invited to speak to the Lyme Disease Group in Vail, Colorado. �This proved to be another important step for Evan. �Not only could he speak to others and help them, he remembered his skiing
skills, physically and mentally. �

In Beaver Creek he met an older man who was a Green Beret and skied down closed trails and jumps with him.
Amazing, from a child who could not walk the year before and had pins in his hips! �At night he would go to the Vail hangouts and meet other teenagers from other parts of the country. �

We had thought we would never see the day! �So social, so strong, inside and out, and very handsome (we are very proud!!).

In April of 1995 Evan was in a car accident. �Sitting in the back seat, he was struck with the front seat, which broke his femur in half. �A rod was put into his bone, from his hip to his knee. �Here we go again! �He was the only one hurt in the car accident, but he was comforting and helping the other shocked boys. �

As he said, "What are broken bones and pain when you have Lyme disease?" �(Nothing of course.). �Rehabilitation
and crutches again!

At the end of the school year Evan asked if he could go away somewhere where no one knew him or his illness. �He found a college program at the University of Colorado in Boulder. �

Taking an S.A.T. review course and getting the leads in his acting course, Evan became his own person! �He was winning dance contests at the clubs and meeting
students from all over the country. �This outgoing social human being needed more in life after missing so many years. �

With zest and enthusiasm Evan called us and pleaded to go to prep school in the fall. �He wanted to really learn and be challenged in small classes with greater interaction with teachers, teachers that were teaching and
discussing topics with him, not at him. �

Evan had lived in a world of adults and learned how to deal with them as an adult. �He was looking for respect!

We looked at college preparatory schools such as Choate in Connecticut, Dwight Englewood in New Jersey and nearby Saddle River Day School. �Evan took the National Prep School Test in the designated time and scored at the top! �He could have a choice of schools!

Realizing that Evan still does not feel totally well, we chose the school closer to home and his doctor. �Evan also received a Merit Scholarship.

This has been a good year. �Evan loves his prep school. �He is learning tremendous amount and is starting to think about colleges. Evan did well on his P.S.A.T. with only one year of education. �He would like to go to Brown University in Rhode Island.

Evan wants to become a psychiatrist and stand-up comic actor. �He is a good listener and people problem solver. �He knows life from inside out!

I asked (NY neurologist) Dr. Brian Fallon how Evan became so smart after all these years of no education. �He said, �"Evan was listening all those years." �He could not walk or talk or read! �HE COULD LISTEN!

Evan just came back from his vacation (without Mom, with a friend and his family) in Cancun, Mexico. �Looking very tan and handsome, he said he never danced so much in his life!

Thanks for the inspiration; I know I could
use it now!

Can you email me? I am still out of state
and want to talk, but don't have your email
at my disposal.

Lymiecanuck

Zip, may I suggest you add a line at the beginning saying this is a LONG story. I wasn't prepared to spend this much time reading it. Thanks for considering...

Thanks for sharing...

-laserred-

It seems to me that these success stories need to reach the general medical profession to counter the lie that treatment is futile and dangerous.

It seems that Bicillin is what caused him to turn a corner toward recovery. If so, it supports my contention that this Korean War vintage drug is one of the more effective and reliable treatments.

My story is not nearly so dramatic. However, I was pretty sick and my recovery has been remarkable to my doctor. He's not an LLMD per se but has treated Lyme aggressively for a number of years. He had not used Bicillin before me, which I suggested, and says that, of his more chronic patients, I have had about the best recovery. I try to share this with as many physicians as I can. Some actually listen.