Lyme Stories from North Carolina Residents
The Family with Lyme | Raleigh, NC - Real Lyme Stories
Our story has two very distinct chapters. The first is of a family of five struggling daily to function as a whole unit while dealing with the many aspects of Lyme disease. The second chapter is of five individual people each battling the same disease in very different ways. How we are doing as a whole and how we are doing as individuals have two very different answers. I cannot tell our story without looking at both chapters individually. I will begin with the second chapter first, that way you will get to know each of us a little better as individuals before looking at us as "the family with Lyme".
Our family consists of the following: mother, Pat, 42; father, Ron, 52; Luke, 19, married with a son; Ron 2 15; Andy, 12; Ann, 10. I will introduce us in order of diagnosis.
Andy - In 2005 I was working at a Doctor's office. I worked long hours, leaving home before 8am and arriving at home, usually, after 8pm. Andy was on his summer vacation and was always asleep when I left for work and asleep when I got home. I assumed that it was because it was summer and he was playing hard and getting worn out from the heat. He was also sleeping through most of the weekend, again I assumed he was just catching up on sleep from playing so hard while I was at work. After two full months of this routine I asked my older sons what Andy in did during the day to get so worn out. Their reply was surprising, "he doesn't play, he just sleeps all day." I went to work the next day worried, not sure what to do.
A patient came in that same day to pick up a prescription, and said, "Tell Dr. B thank you for catching my Rocky Mountain Spotted Fever, my only symptom was fatigue". He was genuinely grateful and so was I. I immediately set my son up for an appointment with Dr. B for the next day. I brought him to work with me for his appointment and Dr. B ordered a blood test for Rocky Mountain Spotted Fever and Lyme disease. Both came back positive.
He was treated with 30 days of Doxycycline. His fatigue lifted and he began to have more energy and feel better. We did not know how long he had these diseases, we live in a rural area and he had recently had many tick bites. We assumed he had contracted it very recently. His improvement led us to believe that he was then fine and no further treatment was given. We didn't think about tick borne illnesses for almost two full years.
Ron - In March of 2007 Ron began coming home from school with "guess what I did today" stories. These stories ranged from falling asleep in class to joking with his friends during class to teasing his teacher to giving "funny" responses when called on to answer a question. When I expressed concern over this new behavior, he always said, "I'm just coming out of my shell" or "I'm just opening up". He assured me that he was not being disrespectful and that his teachers were totally okay with his new behavior.
His next progress report concerned me as well. His grades had fallen a bit, he had 97s and 98s and one 99. I know you think those are great grades but for Ronnie this was very unusual. Ronnie started out as a kindergartener in public school. After the first nine weeks we were told that the teachers felt he should move up at least one grade. I did not want him to be the new kid and need to catch up on nine weeks of work so we kept him in kindergarten. It was a good social experience for him. At the end of the school year Ronnie asked if he could be homeschooled, when I asked why he wanted to be homeschooled I expected a response consisting of how homeschooled kids don't have homework or that their school days are shorter. Instead, his answer was this, "you taught me everything I needed to know for kindergarten before I went, I think you can teach me more at home than I can learn in school". How can you argue with a response like that from a five year old child? I homeschooled Ronnie until the end of 6th grade. I needed to return to work at that time so he entered public school again in 7th grade. His grades were never less than 100s, often times being110 or 115 due to completed extra credit assignments. Everyone I spoke with just told me his grades dropping and his strange behavior was normal teenage behavior. I accepted it though I still felt there was something wrong even if no one else believed me, not even Ron.
In May I took Ron to Dr. B for a pain he was experiencing in his right hand. He had not injured it but this had been bothering him for a week or more so we had it checked out. Dr. B could find nothing wrong with the hand but ordered an x-ray, just to be sure. On our way out of his office, Dr. B asked me if I had any other concerns with Ronnie, if anything else had been bothering him. I said, not really, but he has been pretty tired lately. Dr. B thought for a moment and said, let's check him for Lyme, just to be sure. The results for the Lyme test take about a week to get back, during that week I began to research Lyme Disease to see if this truly might be a possibility for Ron. I was amazed at the clinical symptoms for Lyme. I had always assumed that it was just joint and muscle pain, I had no idea how devastating this disease could be. I was especially concerned when I saw "strange and unusual behavior" on many of the list of symptoms. The same day that I found that symptom listed Ron came home from school with another guess what I did story. Mom, he said smiling, you won't believe what I did today...I got silent lunch. He then told me of how he had dropped a pen cap during a test and when he went to reach for it as it rolled away, quickly thought of a story his friend had told him about a kid doing the army crawl on the floor of a classroom. "before I knew it I was doing the army crawl." He was smiling, he thought it was funny, he almost seemed proud of himself, I was horrified. We discussed how this was not a good thing and that he was going to gain a reputation for being a problem student. He got quiet and said "mom, I don't know why I did it. One second I was thinking about the story Nat had told me and the next second I was sliding across the floor like a seal. I didn't mean to do it, I didn't even think about it, I was just on the floor, I even did it twice mom." The smile had left his face, this was the first time Ron admitted that his behavior was not normal, that something was wrong.
While Ron was at school the next day I got the call from Dr. B's office. Ronnie's Lyme test had come back positive for a past infection as well as for an acute, active infection. I was instructed to pick up the prescription, take it to Ron at school and to get him started on it immediately. "This is very serious" Dr. B's assistant said. I couldn't get that phrase out of my head.
Ann - Ann grew up as a normal little girl, quite the princess. She loved everything sparkly, fuzzy, and frilly. She was a quick learner, she began reading before kindergarten and was a wiz in math. By second grade Ann had began to regress in her learning. She struggled in reading, spelling and anything that involved reading comprehension. She was able to keep up in second grade but by third grade she was falling terribly behind. Her second grade teacher would write a big red F on her failing papers and tests. Ann began to think that she was stupid and lost confidence in herself.
Throughout second and third grade she would complain frequently of stomach pain, she often had diarrhea and had terrible headaches accompanied by fatigue. It was always assumed that these were a product of her not wanting to attend school because she was doing poorly. Her third grade teacher told me in a parent teacher conference that we should have Ann tested because she was positive that she had a learning disability. As the year progressed Ann's stomach pains became more frequent, the teacher would not allow her to call home telling her that since she had not thrown up that she was not sick enough to go home. I met with teachers and principals and other school officials making it clear that if my daughter said she was sick they were to allow her to call home. They began to allow her to call home but everyone from the principal to the teacher to the secretary made comments that she was just trying to get out of going to school. One day Ann called home to say that she was sick. After I had spoken with Ann the receptionist at the school got on the phone and said, "Miss How, you know she's not really sick, you don't need to come get her. She looks fine to me." I got sick of the condescension and thought if I had a doctor backing me up then the schools would treat her better. This was in May of 2007. I took Ann to Dr. B, explaining her symptoms of headache, stomach pain, fatigue, poor concentration, irritability, and weight gain. (Ann had gained 40 pounds in about 6 months with no change to eating or exercise habits.) I didn't know what to think, I just knew something wasn't right.
Dr, B examined Ann, ordered blood work and with a smile said that with our family history we had better check for tick borne illnesses, just in case. The tests for Lyme Disease as well as for Rocky Mountain Spotted Fever both came back positive. I called the school and told them, assuming that with a diagnosis they would be more respectful of Ann and how she was feeling. The next day Ann called home to say she was again sick. The same receptionist again got on the phone and said, "Miss How, I don't think you need to rush, she looks fine to me. It's not like she's dying." I don't know that I have ever been that upset with the ignorance of an individual before. How could she say that when I had just spoken with her the day before about Ann having Lyme? I was irate but bit my tongue. I printed off pages of information on the serious nature of Lyme Disease and handed it to the receptionist the next morning telling her that she had better read the articles and never question my daughter again. I met with the principal and other school officials but nothing was done to improve the situation so I decided to home school Ann the following year.
Pat - I sat at a dining room table, trying to get this strange spider like bug off my arm but it was stuck. That was the first time I had ever seen a tick. That was when we first moved to North Carolina, in 1995. I asked my doctor about it but he said that they were no big deal and to just take them off and not to worry about them. Shortly after that I started to become very reclusive. I lost interest in things I had been very passionate about, including attending church. My muscles and joints began to hurt, my back became very painful, I started having terrible headaches, and my mood swings were almost uncontrollable. I would be completely happy one moment and totally irate the next and I would cry at the drop of a hat. This continued for almost two years, at that time I fell on some ice on our back deck. I went to my doctor for my hurt knee. While I was there I burst into uncontrollable tears over absolutely nothing at all. My doctor diagnosed me with post partum depression, I remember sobbing, "but my baby is almost two years old" She said that was normal and put me on anti depressants that didn't seem to help much.
Over the next ten years I developed obsessive behaviors, shooting pains in my arms and legs, gastro intestinal issues, sleep issues, tremors, I became sensitive to light, sound and smells, and I started having panic attacks, anxiety, and rages. I withdrew from friends and relatives. The pain I was in increased; all my joints hurt, my memory began to fail, I couldn't bend to pick things up, and my left leg became numb and painful. I began spending money as fast as my husband could earn it. I went to doctor after doctor about the pain and was told repeatedly that I was just more aware of my body than others or that my weight was causing my body to hurt. (I had gained 100 pounds in 1995). I was told that the headaches and short-term memory loss were due to post traumatic migraine syndrome. So many of my symptoms were supposedly due to my excessive weight or depression that I stopped going to doctors. I just got tired of hearing that there was nothing wrong with me or that this was all part of life or in my head. My motivation level to do anything deteriorated steadily over time. I used to have an immaculate home and now I can't remember the last time my home was really clean. I used to love to cook, now it's an accomplishment for me to cook dinner for my family. I used to love to read but now I cannot focus on a book long enough to read it, I am easily distracted and have trouble concentrating. My quality of life was horrible, I was always exhausted and just never felt well. I felt lazy because I was not doing what I should be doing as a wife and mother. I felt like I was always letting the people that I loved the most down.
My family was afraid to go out to eat with me or even shopping because if the service was at all substandard I would cause a scene making sure that all employees and customers knew about the horrible service. I once burst into tears over bad service at a pizza kitchen. My outbursts felt totally justified to me I did not feel that I was doing anything wrong, I was always right and my actions always justified. I am surprised my husband stuck by me through all of this and that my children all love me. In 2007 I was not a patient of Dr. B, I had worked for him so I kept my own family doctor. With three family members being diagnosed with tick borne illnesses I began to wonder about my husband and myself and our oldest son. Luke, our oldest was tested and tested negative, so I began to worry less. In June of 2007, I went to my doctor, Dr. T for a sharp shooting pain that I had been experiencing for quite some time. She told me it was tennis elbow even though the pain stopped at least 4 inches below my elbow. I asked her about Lyme and she literally laughed at me. She said Lyme was way over diagnosed and that it didn't exist in North Carolina. She told me my kids had tested false positive and that they probably had ADD, ADHD, or learning disabilities. She had never even seen my children but was positive I was a fool for accepting the diagnosis of Lyme but she did not question the RMSF diagnosis. She lectured me for at least five minutes on doctors who cause Lyme hysteria and even went on to tell me of a quack who specialized in faking Lyme diagnosis just to scare patients and create panic. That was the first time I had heard the name of Dr. Joseph Jemsek but it would not be the last. I insisted on a Lyme test and was told it was negative. I asked to get a copy of my labs but they could not locate them, I was very uncomfortable with this, especially with my doctors attitude about Lyme Disease so I asked Dr. B to order a Lyme blood test for me, which he did; it came back positive.
Rob When I met my husband he was a sweet, wonderful, workaholic. I met him at the dance studio where I taught ballroom classes. He was a student who wanted to learn western dancing so that he could meet women; he was 36 years old. He was very active, running 5 and 10K races on most weekends. He loved to play sports and stayed busy all weekend and whenever he was not at work. He would sometimes work until 2am and go back in to work at 6am. He never seemed to slow down. He was the kindest, most patient man that I had ever met in my life. Nothing seemed to rattle him, ever.
We were married five months after our first date. We spent our honeymoon in central New York. I have always said that he changed the day after we were married; I never understood why but I think I do now. The morning after we were married he went for a run. It was a fairly wooded area with a lot of undergrowth and tall grasses. He returned from his run, took a shower, and fell asleep. That was the end of the old Rob and the beginning of the new Rob. The next morning he was exhausted, all he wanted to do was sleep. He slept for the rest of our honeymoon. As a young newlywed I was devastated, it was not the honeymoon I had imagined. I just assumed that the chase was over, he had caught his prize and now he didn't have to try so hard anymore. I knew he loved me and that I loved him so I accepted this new Rob and adjusted my attitude.
He is still an amazing man, he just doesn't get around to doing much other than working. Rob remained a workaholic but now as soon as he came home from work he fell asleep within five minutes of sitting down. He slept until 1 or 2 pm on weekends, stopped running because his knees hurt, and went through periods of pretty severe mood swings. He has become much less patient as the years have passed and is considerably more grumpy and stubborn. Whenever I could get Rob in to the doctor I would ask about the fatigue and irritability. His male doctors would always look at me like I was stupid and tell me that he works very hard at his job, "he's allowed to need to sleep now and then". I know they all thought that I was being a domineering, overbearing nag of a wife and that I just expected too much of him. I wasn't angry by the fatigue, I just knew that it wasn't right. It just seemed like something was wrong. He had countless labs done, and was put on anti-depressants. Nobody believed me so I just accepted this as normal.
When everyone tested positive for Lyme I encouraged Rob to be tested as well, he put it off as long as he could but finally gave in and was tested in the fall of 2007. Ron also tested positive for Lyme. He felt that he did not have any symptoms, and doubted that he really had it. He started on Doxycycline and woke up the next day looking like he had been hit by a truck. "I think I have the flu", he said. "No, you have Lyme, welcome to our world", I said. Every muscle and joint hurt, he couldn't think, had an enormous headache...he just felt horrible I explained that he was going through a herx and that it was normal to feel horrible. He missed a full week of work. This was more sick days than he had taken in our entire 15 year marriage. I will never know for sure but I truly believe that my sweet husband contracted Lyme on our honeymoon.
The Family with Lyme Well, you have met each of the xxxxxx's. We are each affected by Lyme in such different ways and our treatment has been just as varied. We had all been on Doxycycline for four to eight months. We had all improved and had gone off of it for a short time before each of us relapsed. We relapsed between Thanksgiving and Christmas of 2007. I took Austin back into Dr. B in January of 2008 for a knee pain and we started discussing our Lyme situation. I told him we were all starting to feel pretty badly again. He suggested that we might want to consider seeing a specialist. He warned us that our health would get much worse before we started to get better and that if we started a more aggressive treatment that we would need to stick with it. He said that a lot of people start and give up after two or three cycles of the treatment because it is very rough. I told him that we had been discussing this as a family and had decided that this is what we needed to do.
I had talked to a number of Lyme patients about their doctors and had gotten feedback on a number of them. We decided to go to Doctor Joseph Jemsek in South Carolina. One of the first things we did was to write a history of our treatment. At first I thought that we had been very blessed that the first doctor we went to had diagnosed us properly but then began to realize that like so many others our family had gone through years of misdiagnosis without even realizing it. Ronnie used to wake up in the middle of the night screaming in pain and crying that his legs hurt, this went on for years and all the doctors said it was growing pains, nightmares, or a need for attention. My short term memory loss, my husband's fatigue, my children's struggle with focus and concentration when it used to come so easily to them, these were all symptoms that we didn't even know were a part of Lyme Disease.
I also began to realize what Lyme had taken from my family. All of our children are very musically blessed. They all played piano, Ron and Ann were especially gifted, they had such a passion for it. Lyme took that passion from each of my kids that desire to do the things they used to love to do. The tree house that sits in the woods unfinished because, though no one will admit it out loud, we are all too scared to go into the woods to finish it. Ronnie's Eagle rank advancement, his project completed but we can't seem to get organized enough to finish the paperwork. It has taken much from us, We work daily to build our children's self esteem back up, it's hard to feel good about yourself when you can't think straight and when you feel sick all the time.
It has robbed my family of time, precious time that we should not have had to spend battling this disease. I can't tell you how much time I spend putting medications in pill organizers. Checking and rechecking because I am horrified that I may have made a mistake. But in a weird way it has also given us things. We are much more compassionate toward others, Ron used to wonder how kids could struggle with grades or forgets to do their homework. Now as he struggles just to maintain a B average, now he has empathy for others. We have learned to work together and to lift each other up and to lean on each other for strength. My daughter Andy hugged me saying, "it's okay mommy, it's just sausage, come sit down" as I stood by the open freezer crying because I couldn't remember where I had put the sausage that my mom cooked so I could make baked ziti for dinner.
We have also been able to raise awareness in others about Lyme Disease and what to look for. We ran into Ron's Honors chorus teacher and her eyes immediately welled up with tears. She told us how she thinks of our family often and that during that very week one of her students had said "Miss S look at what a tick did when it bite me." He then showed her a huge bull's eye rash on his calf. She immediately had him go to the office and called his parents and let them know that they needed to get their son to the doctors that day and have him treated for Lyme Disease. (I wouldn't have known that without Ron) she told us.
We have been under the care of Dr. Jemsek since February of 2008. Many things have changes since then. My piano, which used to be played by my children is now covered from one end to the other with pill bottles. Our pharmacist knows us by name. The most amazing change that has happened since we have met Dr. Jemsek is that we no longer feel like we are going crazy and we now know that we are not a family of hypochondriacs.
In this short amount of time we have seen great hope. Andy is coming back, his grades are back up, his passion for all things creative and loud are back. He is drawing again, and learning to play the drums, he is even in the process of composing his first rock song. His teachers have been amazed at his progress. He now knows that he truly is smart and that the years he struggled in school were not his fault it was because of Lyme. He is healthy and happy and so am I. Ron is having more and more good days and will begin guitar lessons this week. Ann is less irritable and she has fewer headaches. Ron no longer sleeps in past noon on weekends and I actually cooked dinner for my family three nights in a row last week. We have learned to celebrate all of our successes, no matter how small.
Probably the best thing Dr. Jemsek said to me as he examined one of my children was, "you will get your children back, I promise, they will be healthy and you will get them back". That is what keeps us going, it is that knowledge that we will beat this and that we will be stronger because of it.