Lisa Schultz-Hilton, Lake Geneva WI
My Lyme Story, in short, it is also in PJ Langhoff’s book “It’s All In My Head”.
Here’s the basic outline of my life with Lyme. What it doesn’t say is that I worked in healthcare. Since I was little there were two things I was interested in, the paranormal and helping people who were sick. I went to school to be a medical assistant but didn’t like working in the dr office. I liked better taking care of people long term. But this disease took every dream away from me that I had. Now I feel like just a big burden on everyone!
- First got sick, was at a mall and my heart started pounding, felt like I had the flu, had my friend take me to an emergency room and 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 wouldn’t leave the house for three months. Thought I was going crazy. Was hospitalized for a couple days. My Dr. said I was dehydrated and looked sick. Several tests showed nothing except an ultrasound on my heart showed “possible” mitral prolapse.
1992- Moved to a new house but was always restless. Coulnd’t handle working. I felt nervous and like something was wrong but Drs still couldn’t find anything. At this point Drs had me on several meds from Ativan to Prozac. Nothing helped and most anti anxiety drugs made me even feel worse.
1993- Moved to Arizona. Joined a panic disorder group. Heartburn started. Really bad, kept going from Dr to Dr. A charcoal swallowing study showed acid reflux and hiatal hernia. My neck got really stiff. I had a fever. Started hallucinating that the room was made of dots. Got big hives up and down my thighs. Which lasted for about three months. Drs. gave me steroids. Diagnosed me with Desert Valley Fever and later a Black Widow bite. Later tests showed negative for Valley Fever. Was trying to go to school to be a medical assistant. Did good, but ambulance had to be called because of shaking spells and almost fainting. Got a job at a Dr office, still had hives on my legs and kept getting fainting spells. Dr I was working for thought it was because blood bothered me. It wasn’t. 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- Still thought I still just had panic attacks. Started having chronic yeast problems. Also at night would hallucinate spiders were coming down on me from the wall. Gave up on Drs for a while. Started drinking . The only way I could go out with friends without having panic attacks.
2004-2006- I noticed that when we all went out drinking that my friend’s would be sick a couple hours in the morning. I would be sick for days. I couldn’t stand up or else 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 drs. Tested me for Diabetes I don’t know how 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 a lady I was taking care, her walker started getting ahead of her and 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 started 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 this Dr twice. She said to me: Stop being a baby, go home a drink a Pedialyte and she handed my a Pedialyte and walked out of the room.
Finally in 2006 my family Dr, asked me if I’d even 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 Drs 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 Dr 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 Dr in town that had treated some people with Lyme Disease. Big mistake. This guy turned out to be a partner of the original Dr who diagnosed me. She eventually refused to see me for getting a second opinion, and he treated me so badly. He sent me to a neurologist and an ID Dr. But first handed me a card to a Psychiatrist and patted me on the head and said, you have too much going on, I’m going on vacation for three weeks. I couldn’t believe it. Well the neurologist he sent me to, said to me right off the bat you don’t have lyme why do you think you do. And when I told him I had a positive test, he called the other dr. 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 Dr he sent me to just said I had weird symptoms for even lyme disease, and redid the Western Blot and said it came back negative. Even though I tried to get copies they won’t send me that copy of that Western Blot.
Now I have an LLMD. Antibiotics helped me to get back on my feet. But I’m still sick everyday. My memory is shot. I have no problem solving skills. I’m shaky and faint feeling. Mornings suck! I can hardly work. My jaw pops when I try to open it, and my shoulder’s 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. Oh and my dogs that never leave my side!! Especially when I’m sick!
2009~ Still sick. Question everyday, do I have the right diagnosis since there’s no accurate tests, but all docs have found other then 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. Gave up driving. Am seeing second LLMD. Don’t want to give up hope. But now I can hardly walk, 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 even hard to explain. My balance is off, my vision is blurry in my right eye. My stomach does stuff I can’t even explain. Weird symptoms day in and day out. Drs 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, has weak legs and arms, numb arms, depression and anger issues, and bad muscle spasms in his back. And his knees severly hurt. Physical therapy had not helped either of us. Neither do pain pills. My daughter is getting joint pain in her knee and elbow. Is getting other problems too but for privacy reason will not print them.