About Me and Lyme

[jeezld]

I am the mother of a Lyme patient.

My son was 12 years old in July, 2001 when he had a bulls-eye rash on his chest. Pediatrician refused to treat ("Lyme hysteria," "dangers of unnecessary antibiotics" blah blah) said it was an allergic reaction to a tick bite and to come back if he developed flu-like symptoms.

Four months later he developed his first symptom which was urinary retention/hesitation. Then he had muscle twitching in his shoulders and face. He felt them but I couldn't see them. Then he had hand and leg tremors that were noticeable. Then vision problems. These symptoms came and went on and off for the next year. We told the pediatrician about these on other visits but I don't think Lyme occurred to the doctor. I didn't associate these early symptoms with Lyme at this point.

Gradual personality changes also took place, but because he was entering his teenage years it was blamed on adolescence. Ages 13 to 14 were increasingly noticeable and worsening personality changes and mood disturbances along with insomnia, OCD, anxiety, rages, sleep reversals, nightmares, fatigue, mania, hyper sense of smell, hearing and light sensitivity, short term memory problems, coordination and balance problems, and trouble speaking. At the time we didn't recognize them for what they were, but he was also having complex partial seizures. He lost all interest in sports, academics and the friends he had had for years. He had been a high honors student, a peer tutor and a really good ice hockey and lacrosse player. Ages 15 and 16 were a nightmare of all these symptoms plus declining health in that he always felt like he was getting sick with a cold or flu.

At 16 he was misdiagnosed as having mental illness: bipolar disorder, OCD, anxiety disorder and ADHD. On the psychiatric meds his mood and behavior problems just got worse and worse. The psychiatrists blamed this on drug abuse (pot).

At 17 he was finally diagnosed with Lyme disease (Late Stage CNS with neuropsychiatric manifestations). I happened to read a science article in the Fall of 2005 on pathogens that can cause mental illness and this is how the light dawned and we started the Lyme journey, remembering that bullseye years ago..

We had lived in CT most of our lives and I had read a lot of newspaper stories about Lyme disease over the years, but all I had read was about the joint and heart issues so until I read that article I never knew that there could be a medical explanation for my son's psychiatric issues.

He has never tested positive on ELISA or Western blot. He had an abnormal SPECT scan consistent with an organic infection such as the scans seen in positive Lyme patients.

His response to antibiotics was remarkable.

I am driven to know as much about Lyme disease as possible to help him and hopefully others. And I only want the truth! The good, the bad, and the ugly.

[itsybitsyone]

Wow...so glad you care about him and got him some help.

It is an awful thing to grow up with and not know what is wrong...

[LymeEnigma]

You two have really been put through the ringer. The misinformation out there and the "Lyme hysteria hysteria" have set back a lot of lives; at least your son was able to get his back on track. He's very lucky to have you.

[californialyme]

My daughter had Lyme & is in full remission. I was very, very sick and am symptom free!*)!*!
Orals worked with my daughter, I needed IV Rocephin!! Here is a story you may find helpful because it is from a Mom about her son*)!*)!!
Best wishes,
Sarah

Late Neurologic Lyme Is Reversible: Evan White
*******************************************
I had the honor of shaking hands with Evan White when we had the Doctor Burrascano rally in New York at the Plaza Hotel. He was there, muscled, fit and in full remission. He gave one heck of a speech.- SarahO.
****************************************************************************************************************************
Severe neurologic Lyme is reversible
by Ruchana White


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 o 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 u 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, a
Chairglide, 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." OIf you odn'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 eh 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!


This is a very exciting time at the WHITE HOUSE- A MIRACLE.

[jeezld]

Thank you Sarah! I appreciate hearing about you and your daughter, and the info about Evan White. I wonder how Evan is doing today? I guess it would be about 10 years after all this... anyone know?

[californialyme]

I met him at the Doc B rally and he was incredibly fit and healthy, in full remission, off all antibiotics and going to college somewhere. He gave a rip-roaring speech in support of Doc B!!!
It was special for me because my daughters name is Evan Weiss.
Weiss means WHITE. So I had her shake his hand, too, for good luck, she was so little*)!!! He was a sweetie!!!

I believe if he relapsed we would have heard about it- so I assume he is still doing great-
best wishes,
Sarah

[jeezld]

;D You just made my day! ;D

[kelmo]

I was just reading your son's story to my daughter. She said it sounded just like her.

Her response to abx hasn't been remarkable. It's been a long, painful road. But, there is improvement, and we are not giving up the fight.

I would like to know how your son is doing now with his psyche issues and school. My daughter had to home school the last couple years of high school, and has been taking one or two classes online.

It was a miracle she graduated high school on time with a 3.25 gpa A miracle. She fought through migraines and pain and social anxiety.

Tell your son he is not alone. God bles shim.

[jeezld]

Hi kelmo,

Welcome to the board. I had planned to respond to your "introduction" post soon, because I wanted to comment about the pre-Lyme-diagnosis guilt you mentioned. I wanted you to know that I share that too when it came to making my son go to school when he said he didn't feel good, things I said to him, fights we had, etc. when I didn't understand what was happening to him and just saw laziness, a bad attitude, selfishness, and all the things I blamed on him personally and took personally when he was ill with something I didn't know and didn't understand. Something terrible had happened to my son's personality and changed him from Dr. Jekyll into Mr. Hyde.

He deferred going to college for a year while he started antibiotics and LD treatment. When he began treatment he went from being unable to sleep and manic, pre-Lyme diagnosis, to sleeping 16-20 hours a day for 6 months straight, then eventually began rejoining the living and then it took another 6 months of continuing to take the meds and recovery before he was well enough to attempt going away to college. He took antibiotics his entire freshman year at school.

He lived in a regular dorm with 3 other students, took a full-time course load, met a girl who became, and still is, his girlfriend and received a 3.3 GPA for the year. He liked Philadelphia, where his college is located, so much that he found an apartment with other roommates, found a job and spent the summer living away from home too. Because he had lost so much time and normal maturing during his undiagnosed and dysfunctional high school years I reluctantly agreed to let him go for it and to be on his own. It turned out to be a great experience for him.

We are very proud of him and grateful for his recovery. He is not cured and I don't expect he'll ever be, but he is able to function normally and have a full life.

After 20 months on antibiotics the decision was made to stop them last spring when his freshman year ended. For 4-5 months he had leveled out at about 95% improvement. The remaining symptoms were fatigue and GI related. We felt that these could be from the meds and from having been so sick. Within a couple of months time the earliest symptoms crept back (urinary issues, insomnia, night sweats, vivid and bizarre dreams) so he is unfortunately back on antibiotics.

Prior to being diagnosed with Lyme he had been diagnosed with psychiatric illness (bipolar disorder, OCD, ADHD and anxiety) and was taking Lithium and Luvox. Our LLMD recommended we see a LLMD psychiatrist to manage these symptoms during Lyme treatment. He stayed on these meds as well as taking the antibiotics (Biaxin & Plaquenil) during all this time. We had hoped to be able to wean him off the psychiatric meds as the Lyme disease treatment ended, but this psychiatrist thinks that it is likely that a permanent chemical imbalance has occurred in his brain and that he will need to treat these symptoms for the rest of his life. She was one of the original Lyme cluster psychiatrists brought in to study these manifestations, along with Dr. Fallon, and has been following neuropsychiatric Lyme patients for about 20 years and she says that the longer she treats these patients the more she believes these symptoms are a part of post Lyme syndrome for many people. Because my son is far away and I can't observe his behavior changes, and since he is doing so well with maintaining stable moods and good grades, we decided to not try making any changes to test whether or not he is able to go off these until he has successfully graduated from college.

I hope that I answered what you were asking. Please feel free to ask me anything else or again if I did not!