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The Morrisseys' Story

My Name is Erin

The following stories are about one familyís struggles with Lyme disease. These stories were presented at a congressional Lyme disease educational symposium - both in the book, ďMany Faces of Lyme Disease,Ē and in oral testimony. Although we have heard accounts of many Lyme patientsí ordeals, we were again profoundly moved as we read the childrenís stories, told in their own words. Weíre sure there were many members of congress who were equally affected. Cathy Morrissey sent her familyís stories to us with the generously offer to let us share them if we felt others would benefit.

Oral testimony given by Erin Morrissey

Good afternoon. My name is Erin. Iím a little nervous today. Besides the normal jitters any 12-year-old would have when speaking to Congress, I am also afraid I. may fall or twitch or get dizzy during this speech. My family is sitting here with their own problems: Dadís sore knee, Momís racing heart, and my older brotherís arthritis. My little brother is having a harder time than would be expected in trying to sit still.

We have grown accustomed to these ailments and the uncertainty that accompanies them. Thatís because five out of six of us have Lyme disease. Even my healthy little sister has been affected. I would like to tell you how Lyme disease has changed our lives.

When we moved to Connecticut three years ago, my brothers, sister and I had many plans for our two acre backyard. We envisioned baseball and football games and pretending we were in the Hundred Acre Woods. But my dad got a classic case of Lyme just a few weeks after moving in. Mom became cautious about our outdoor play. The next spring, she began showing symptoms. But with no rash, flu or known tick bite, it would take almost a year to be diagnosed as Lyme.

Around the same time, I came down with a summertime flu. I could not lift up my legs to run in a Fourth of July race. Right away, Lyme disease was suspected, and I received some antibiotics. For six months, I was fine except for headaches we thought were due to my new glasses. Tests for new symptoms showed I had relapsed. A month of IV therapy seemed to do the trick. I went back to swimming, dancing, and playing two instruments. Then I relapsed a second time.

A new doctor and new tests showed I had serious neurological problems despite my healthy appearance. Mom continued to develop strange and frightening symptoms The nightmare had started. Our happy, active lifestyle was beginning to change. I developed seizures resembling epilepsy. Then only halfway through the school year, I would never return to seventh grade. The seizures became so violent that mattresses were put on the floor so I would not hurt myself. I was hospitalized and took many tests.

The seizures were non-stop. Doctors were astounded by their intensity. They brought in nurses and technicians who videotaped me. I tried to keep a positive outlook. I missed Mom, who was too sick to come to the hospital. For three days I was poked, prodded and stared at. All my tests were normal, and in the end I was told that my problems were psychological - a reaction to my mom being sick. My positive outlook disintegrated, and I cried all night. I didnít want to be sick!

They sent me home without giving my parents advice on how to deal with the seizures. Dad was serious, no more jokes. Mom would cry as they held my arms and legs down on the floor for hours at a time. My little brother and sister were scared and confused. My older brother did all the work my parents could no longer do. Then, the unbelievable happened. My mom suspected the vague symptoms my brothers were having might be Lyme. She was right! On top of this, she had to go into the hospital and my grandparents came to take care of us.

I developed sciatica and paralysis and had to get a wheelchair. My parents took turns sleeping with me to make sure I did not stop breathing during a seizure. Our lives became an endless round of doctor visits, IV nurses, and turmoil. I was a 24-hour a day job. My little brother and sister were farmed out from place to place. Dad had to take time off from work. Mom needed to rest, but, with one crisis after another, she was up much of the night. The boys started having reactions to their medicine, and they, too, needed attention. Mom could not cook or drive. I wondered if she would ever be able to do those things again.

Then Mom went to a new doctor, who told her he could try to make her feel better. Fortunately, she slowly began to improve. But the days turned into weeks, and the weeks into months and life continued without us. Holidays and birthdays were ignored. I missed the chance to play a nice part in my school play and the state swimming finals. School life, dances and parties were forgotten. Weekends were spent going to somebodyís doctor. Dad was exhausted. Maybe it was the stress, but he, too, relapsed from Lyme disease. He put off getting treatment, because the rest of us were too sick.

Eventually, my seizures subsided. But a new, frightening symptom took its place. I developed narcolepsy. At first, I would fall asleep spontaneously and unpredictably a few times a week, but over the next three months it climbed to four hundred times a day. I would fall when this happened. We tried to salvage Easter by going to a restaurant. I fell into my plate several times, and twitched uncontrollably. People stared at me in church. Dad pushed me in the wheelchair when we went see the Easter bunny. Not fun!

I needed a full-time tutor at home. The biggest event of the seventh grade was an overnight trip to Washington, and Mom and I decided to give it a try. Although they tried to minimize it, my teachers seemed horrified by my appearance, my twitching and the narcolepsy. Some kids ignored me, but others were great. My lab partner gave me a wild wheelchair ride to Arlington Cemetery. My two best friends caught me up on all the gossip.

At a food court in the mail, things seemed to be going well, and Mom let up her guard. My friends were supposed to stay near me, but we became separated when they took off to buy lip gloss. Everyone panicked! Security guards were told a child prone to narcolepsy was missing. I was fine, but everyone realized that, despite glimpses of normalcy, I was still so very vulnerable it was depressing for us all.

My brothers had their own problems. My little brother experienced what he called sticky brain, as well as arthritis and hyperactive behavior. Nothing worked for my older brother, who got slowly worse neurologically. At twelve, he took the SAT, and was a state high scorer - beating out the majority of high school seniors. Now he was struggling with dyslexia, memory loss and serious balance problems. I missed clowning around with him, and was sad to see him struggle in school. His friends or teachers never knew what he was going through.

Last summer, we traveled to Pennsylvania for hyperbaric oxygen therapy. We had to spend six hours a day there for a whole month without Dad. Not much of a summer vacation! But I had the opportunity to meet other kids with Lyme disease. All of them were trying to get better before school started. Most were bitten when they were small, and for years were undertreated or misdiagnosed with ADD or behavioral problems. They remained active, even athletic. But when they got older, something very physical happened, and the root of their childhood problems were traced back to Lyme disease.

In the process of getting better, they went through many of the things I did - seizures, paralysis, and pain. It has taken some of them almost five years to reach their present. level of wellness. But childhood is gone. It made me feel grateful that we had picked it up early on in my little brother, and comforted to know other kids were going through the same thing. I will never forget what I learned from those kids.

The life we lead now is a shadow of our former one. I go to school for a few hours a day. My school pays for a cab to school, since riding the bus is a safety issue. Someone walks me to all my classes. My workload has been modified for my new learning problems, and I go to special-education classes. There is no time for gym, band and home economics. I am not strong enough to stay for clubs. My friends are busy, and have moved on to things I can not share with them.

My brothers also require special-education classes. We have permanent IVís in our chests to receive daily medications. My mom prepares meals from healthy organic foods. Gross! Our spice drawer is filled with dozens of bottles of vitamins. We schedule times for rest and exercise. There are still many doctor appointments and nurses visits. We take one day at a time, and do not make commitments.

There is rarely a time when all of us are well at once, so we take turns caring for each other. As our saga goes on and on and on, people become more distant. Even those closest to us are skeptical about our ongoing crisis. Some family members will not visit us because they are afraid they will get a bite. Except for our new friends who we have met due to Lyme disease, nobody really gets it.

I worry about many things. Will I ever get better? Will I get another bite at school or other places I play? Is there enough money for all this? Will my Mom ever be fun again? Will my brother and I get into college? Will my little brother lead a normal life? I realize I have much to be thankful for. Our family has become closer. Unlike many others, we have doctors who care and listen. Our insurance company has been wonderful, and we are able to get the treatment we need. Iíve learned a lot about Lyme and I think I want to become a doctor. I want something good to come out of this.

Lyme disease is caused by a tick so small it is almost invisible. It causes symptoms that are invisible. It is so mystifying that it is often invisible on tests. The number of cases is underreported, making the illness more invisible. I was lucky in a way - my disease was very visible to others. It was tangible - real. But all of us are real. The pain and suffering and sense of loss is pervasive, and very, very real. We are not just numbers, but people in a real family whose way of life has died. We are grieving, and we need help. I am so thankful for the opportunity to speak with you, and hope you will be able to help me, my family, our doctors and all the people who suffer from Lyme disease. Thank you.

Brian Morrissey, father (written testimony):

Three weeks after moving to area known to be endemic for disease-carrying ticks, I developed flu-like symptoms and a small pink rash on my leg. I was bed-ridden with aches and fatigue. Concerned, my wife sent me to the doctor for the first time since I had known her. I was lucky. I had classic symptoms of Lyme disease, which were supported by my highly positive blood work. Unfortunately, I was treated for only three weeks, which is considered standard.

For the most part, I improved, but four months later I relapsed with debilitating fatigue and arthritis-like symptoms. Lucky again, my blood work was still positive, so it was easy for me to receive an additional month of antibiotics. When I continued to complain of sore joints and occasional headache and fatigue several months later, I was told I had a post-Lyme syndrome. My symptoms would resolve in time. Given that my symptoms were more a nuisance than a disability, I was able to accept that diagnosis.

During the next year, several members of my family developed more serious cases of Lyme disease. As we began to see doctors who were more knowledgeable about the illness, I learned that post-Lyme syndrome is a crock. Persisting symptoms most likely mean persisting infection. Three years after the initial infection, I was still experiencing symptoms and still testing positive for Lyme disease.

I have been treated aggressively with antibiotics for the last five months, and I am feeling noticeably better. Itís frustrating to think that, even with clear cut symptoms and positive serology, I was unable get adequate treatment early in the disease. Ignorance and undertreatment has caused my illness to become unnecessarily prolonged. My story is unfortunate, but thankfully not serious. However, the story of my familyís struggle with Lyme disease has turned out to be a fatherís worst nightmare. Read on for the accounts of my wife and children. Lyme disease has completely overturned our life, and has cost $352,000 so far.

Cathy Morrissey, mother (written testimony):

We had always been blessed with excellent health. When we moved to an area where deer were prevalent, we sought information on the subject of Lyme disease. Out of 16,000 people, seventeen cases had been reported in our community. We were told by our pediatrician that Lyme was at worst a mild arthritic illness, that we should take precautions if we went in the woods and to watch out for a rash or joint pain. If we should contract the illness, we were told that early detection and a few weeks of antibiotics would cure it - people who had lingering problems with Lyme disease had compromised immune systems to begin with.

When my husband got sick only a few weeks after moving in, we began to become more enlightened about the true scope and severity of the disease. Still, I did not connect the severe stiff neck, headaches and mild joint pain I experienced in the spring of 1995 with Lyme disease. There were no ďclassicĒ signs, such as known tick bite, rash or flu.

Although the first doctor I saw did suspect Lyme, my treatment was stopped after 3 weeks because my lab work came back negative. Other diagnoses were considered as my symptoms worsened. It would take NINE months and FIVE doctors to properly diagnose me. In that time, as I drastically declined, I was misdiagnosed with everything from stress or fibromyalgia to lymphoma or multiple sclerosis. I was sick enough to believe it.

It would take another year, and a sixth doctor, to get treatment aggressive enough for what had by then become a complex, chronic illness. Despite my own intuitions, early diagnosis and prompt treatment was not to be a reality for me. While long-term treatment, and even hyberbaric oxygen therapy, have helped me tremendously, I am far from cured. In my case, antibiotics may not be the answer, and I continue to search for one.

Had I been as knowledgeable about Lyme disease as I am now, I doubt my story or that of my family, would have been so devastating. I hope others will learn from our experience. The public must be educated about the potential seriousness of Lyme, the many ways it presents and how to get early treatment. Prevention and tick management must also be addressed.

Most physicians must become more informed on how to diagnose and treat, especially in the critical early stages. The ignorance and controversy that surrounds Lyme is astounding. There needs to be much more research to develop better diagnostic tools and treatment protocols.

We need studies to determine the effectiveness of current treatments, the possibilities of other therapies, including alternatives to antibiotics, and the connection between Lyme and other chronic illnesses. Although not a problem for my family, denial of treatment by insurance companies based on arbitrary standards must be stopped.

Brian Morrissey, fifteen (written testimony):

Brian was an exceptionally bright outgoing and healthy child. At twelve, he was a state high-scorer on the SAT exam, which was given to seventh graders as part of the Johns Hopkins Program for Talented Youth. Active in football, swimming and church activities, he also wrote sports articles for the town newspaper, and played trombone, tuba and piano. He now suffers from chronic, neurological Lyme disease. Now fifteen, he has had to give up sports and most of his other activities.

He had to drop several of his advanced courses due to memory problems, poor concentration and dyslexia. He can manage a shortened day at school, and needs classes in special education. He has had to give up many high school social activities.

What follows is his story in his own words: I had always been healthy until 1995, when I noticed joint pain in my fingers and toes, mild fatigue and an unusual case of clumsiness. My mother and sister were being treated for Lyme disease, so I was sent to a doctor quickly. After six weeks of treatment, I was relatively symptom free until December, 1996.

While on antibiotics for a bronchitis infection, I suffered a Jarisch-Herxheimer reaction to the medication. My mother recognized this as a response often associated with treatment for Lyme disease! I experienced massive fatigue, heavy arthritis and strange cognitive problems. I reversed my words, had difficulty spelling simple words and noticed memory deficit.

The mild joint pain I experienced prior to this reaction (which I incorrectly attributed to growing pains and football injuries) became exacerbated. I was treated for six months beginning in January, 1997, but progress was negligible and new symptoms emerged. My balance was severely off; and I would fall if I closed my eyes. In June, I underwent surgery to implant a permanent IV catheter in my chest. I have been on IVís since then, and have also undergone hyberbaric oxygen therapy.

Improvement is painstakingly slow. I am in need of a 504 special-education plan. I had to drop three advanced classes due to neurological difficulties which absolutely impact academic performance. Tests taken at my school indicate I can only process small pieces of simple information at a time. I expect to be on antibiotics for the foreseeable future, and am concerned about how this will impact my admission to college.

The scary part of this story is that my early symptoms were vague and easily explained by common childhood problems. Initial treatment was probably not aggressive enough, allowing the disease time to entrench itself in my brain. My illness, which is ďinvisibleĒ to the public, has thrown my family a financial, physical and emotional curve-ball. I thank you for your time in examining this disease and our stories.

Kevin Morrissey, five (written testimony):

I donít know how I got Lyme disease. I never went in the woods, but did play on the grass. Mom had Dad were careful to check me when I played outside, but never found a tick. I never had a rash and never looked sick. I went to nursery school every day and was always full of energy.

When I was four, my Mom noticed that I seemed to be favoring one leg. My knee hurt, but it was not all the time. I could play. Whenever my knee hurt, my eyes hurt, too. I would mix up stories and get cranky. I tried to tell Mom that my brain was ďstickyĒ, but she didnít know what I meant. It didnít hurt, it just wouldnít work. I would climb up on the sink and put a wet washcloth on my head. On those days, my behavior was hyperactive and I would stutter.

Luckily, my parents knew a doctor who was helping my sister with Lyme disease. He knows a lot about it. It is a very, very long drive to his office. He found arthritis in many of my joints, especially my knees and hands. No wonder I didnít like to use crayons! He understood about ďstickyĒ brain, and gave me big pills to swallow.

I have had to take my medicine for almost one year. Now I feel better, but I have problems with attention that look like ADD, and my hands hurt. In kindergarten, I have to go to special-education classes. I use play doh to make my hands stronger, so I can color and use scissors. They help me learn to concentrate and learn new things in small steps. It costs my school a lot of money.

My parents worry that I will get re-infected at school, and that we may miss it again. My Mom, sister and brother have been really sick. I get scared. Lyme disease is very bad. Please help us find a way to get better and to keep us safe from tick bites.

Meghan Morrissey, nine (written testimony):

My story of Lyme: I had a bad case of chicken pox the first spring we moved here. The scars on my face were bad, so my mom didnít let me go in the sun. It turned out to be a good thing, because thatís when most of my family got Lyme disease. Even though Iím not sick, Lyme disease has effected me. My Mom has been sick since I was six. She had to stop being my classroom mother. She couldnít take me to swimming or dance. Others had to take care of me.

I share a room with my sister. For a long time, she was in a wheelchair and had sezirs [seizures]. When she had them at night, I was scared. I was afraid she would die. My whole family was crying all the time. My mom, sister and big brother all have had IVís, which is very gross. I donít like to look at them. My dad has to take everyone to the doctors all the time. I have to go, too. Last summer, I had to help for a whole month when we traveled for HBO therapy. It was boring.

I would love a dog or to go horse-back riding, but Iím afraid I will get Lyme. When my school takes me into the woods for science or gym, I get frightened. I wish they would make safe areas for us to play. Please make a law to protect kids from ticks and to help scientists find good medicines to make my family well. Please tell this to President Clinton.

Spotlight on Lyme -- March 1998

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