The first time I got sick was at a mall, and my heart started pounding. I felt like I had the flu, and my friend took me to an emergency room. They told me it was a panic attack. Well it never went away. I would go to the emergency room daily, sometimes more than once because of my heart racing or palpitations. My head felt funny and I couldn’t focus. Eventually I didn’t leave the house for three months. I thought I was going crazy. I was hospitalized for a couple of days. My doctor said I was dehydrated and looked sick. Several tests showed nothing, except an ultrasound on my heart showed “possible” mitral prolapse.
In 1992 I moved to a new house but was always restless. I couldn’t handle working. I felt nervous, like something was wrong, but doctors still couldn’t find anything. At this point doctors had me on several meds from Ativan to Prozac. Nothing helped, and most anti-anxiety drugs made me feel even worse.
In 1993 I moved to Arizona and joined a panic disorder group. Heartburn started, really bad. I kept going from doctor to doctor. A charcoal swallowing study showed acid reflux and hiatal hernia. My neck got really stiff. I had a fever and started hallucinating that the room was made of dots. I got big hives up and down my thighs, which lasted for about three months. Doctors gave me steroids and diagnosed me with Desert Valley Fever and later a Black Widow bite. Later tests showed negative for Valley Fever.
I was trying to go to school to be a medical assistant. I did well, but an ambulance had to be called because of my shaking spells and almost fainting. I got a job at a doctor's office. I still had hives on my legs and I kept getting fainting spells. The doctor I was working for thought it was because blood bothered me. It wasn’t. I felt like I was dying. My marriage fell apart and I moved to Wisconsin to be with my sister who was also going through a divorce. At this point I was completely irrational. My husband was the nicest man. I couldn’t explain why I wanted a divorce--just that he deserved someone not sick who could be a “wife” to him.
1994-2004 I still thought I was having panic attacks, and I started having chronic yeast problems. Also at night I would hallucinate that spiders were coming down on me from the wall. I gave up on doctors for awhile and started drinking. It was the only way I could go out with friends without having panic attacks.
2004-2006 I noticed that when we all went out drinking, my friends would be sick a couple of hours in the morning. I would be sick for days. I couldn’t stand up or my heart would feel like it was pounding out of my chest, and I’d start going into a tunnel. I started going back to doctors who tested me for diabetes many times. Eventually I got a job at a nursing home. I noticed I was having a hard time holding a fork while eating. I started getting a "shock" feeling. I’d just be sitting there and all of a sudden I’d hear a loud click and feel like everything went white, and I felt a shock run through my body. It was crazy. I was scared to tell anyone.
I was also working a second job at a home health care company. I was being trained to be a director in the office while still working in the field. One day I was taking care of a lady, and her walker started getting ahead of her. When I reached out to try to stop it, I couldn’t feel my hand. In the next week that numbness moved to my right leg. My knees began to hurt. At the office I couldn’t concentrate; I’d answer the phone and forget the name of my company and go totally blank.
I’d also get lost when I was driving. One time my daughter was in the car with me and she said, "Ma, what are you doing?" I looked up and I had pulled into someone’s driveway. I was just sitting there, not knowing why, or what I was doing. I was so scared. How can there be nothing wrong with me? I started going back to emergency rooms. One time I went two days in a row. I couldn’t walk and could hardly stand up on my own. My Mom had to take me. I felt like my legs were full of lead. I had a doctor twice who said to me, "Stop being a baby; go home and drink a Pedialyte." She handed me a Pedialyte and walked out of the room.
Finally in 2006 my family doctor asked me if I’d ever been tested for Lyme. I said I didn’t know. A week later her nurse called me and said, "Congratulations, you have Lyme Disease. There’s a small chance you won’t get better." She told me there was a prescription of Doxy waiting for me at Walgreens. I was so scared to take pills at this point because of all the crazy meds doctors had put me on in the past. But I was excited at the same time, because for the first time in 15 years I had a diagnosis. I wasn’t crazy! Little did I know, this was just the beginning. After a couple days on Doxy I started twitching. I couldn’t do anything--it was so embarrassing. At work I wore a trench coat to hide it from my co-workers. I called my doctor and after a day her nurse called me back and said try Benadryl. They knew I couldn’t take that already.
Someone referrered me to a new doctor in town who had treated some people with Lyme Disease. Big mistake. This guy turned out to be a partner of the original doctor who diagnosed me--who eventually refused to see me for getting a second opinion. He treated me so badly. He sent me to a neurologist and an ID doctor, but first handed me a card to a psychiatrist and patted me on the head. He said, "You have too much going on. I’m going on vacation for three weeks." I couldn’t believe it. The neurologist he sent me to said to me right off the bat, "You don’t have Lyme. Why do you think you do?" When I told him I had a positive test, he called the other doctor and yelled at her right in front of me, my sister, and my mom. He also told me that I manifested symptoms from reading about it. The ID doctor he sent me to just said I had weird symptoms for even Lyme disease. He redid the Western Blot and said it came back negative. Even though I tried to get copies they won’t send me a copy of that Western Blot.
Now I have an LLMD. Antibiotics helped me get back on my feet but I’m still sick every day. My memory is shot. I have no problem-solving skills. I’m shaky and faint. Mornings suck! I can hardly work. My jaw pops when I try to open it, and my shoulders hurt. I have restless leg syndrome which makes it impossible to sleep. I’m applying for disablilty or SSI. I have already been denied once. I have just started taking IRT classes. This disease took away my whole life as it was. But on the positive side, it also helps me to remember what’s important--my kids and my new husband. And my dogs that never leave my side, especially when I’m sick!
2009~ I'm still sick. I question everyday if I have the right diagnosis since there are no accurate tests, but all docs have found other than Lyme is bulging disks in my neck through an MRI, and nerve/muscle damage in my arm through an EMG. I just keep getting worse. Now am on disability and am homebound. I gave up driving. I'm seeing a second LLMD. I don’t want to give up hope, but now I can hardly walk or lift my right arm. My head feels too big for my neck, and I have spasms and burning pain, and tightening in my muscles that is hard to explain. My balance is off; my vision is blurry in my right eye. My stomach does stuff I can’t describe. I have weird symptoms day in and day out. Doctors just look at me like I’m nuts.
For the first time depression has set in, and to make matters worse, my husband and daughter are starting to show signs. My husband had a seizure at work; he has weak legs and arms, numb arms, depression and anger issues, and bad muscle spasms in his back. His knees hurt severely. Physical therapy had not helped either of us. Neither do pain pills. My daughter is getting joint pain in her knee and elbow and is showing other symptoms too.
Lisa Schultz-Hilton, Wisconsin