I am often asked when I got Lyme disease. Most people look at me strange when I say I have no clue exactly when, but that I know I was a child. I had some symptoms off and on throughout my childhood and young adulthood. My immune system was worse than everyone I knew. What would be a day of sniffles for some would give me severe upper respiratory infections lasting weeks. I developed migraine headaches as a child. These came and went over the years, increasing a great deal around the year 2000. I saw a few specialists and tried a wide variety of medications and none seemed to help. I also had knee pain. This would flare up on occasion. I would wear knee braces and take large doses of ibuprophen to deal with the pain. I developed asthma as a teenager and had a few other strange symptoms pop up over the years. Depression began to rear it's ugly head in my teen years as well. Sometimes I wonder what my life would have been like without the Lyme disease. Perhaps I would have mastered some skills in sports that eluded me because of knee pain and asthma. I certainly would have missed less school and work. There's a chance that my whole personality may have been different.

In 2005 my health got so bad I was completely bed ridden. I had nervous system involvement. This included nystagmus (my eyes would move uncontrollably, making it impossible to focus on anything). My memory and concentration were gone and I developed some “anxiety” symptoms which included muscle spasms and twitches so violent I would literally punch myself. In addition, my joints hurt more than I ever imagined was possible. Every muscle in my body ached, my head pounded, I was nauseous and dizzy and I could not control my emotions at all. I would cry and get angry then feel numb. I started visiting more doctors and more specialists. I was told I was depressed and that the pain was “in my head”. I was referred to a psychiatrist who, fortunately, had enough sense to see that my depression was a result of my illness, not the other way around. She encouraged me to keep looking for a doctor to take me seriously. I was diagnosed with Fibromyalgia by a rheumatologist. He also told me most of my symptoms were purely psychological and that there was nothing he could do for me.

Fortunately, someone overheard my husband talking about my difficulties and recommend a specialist. He is located an hour from my house, but well worth the drive. My doctor follows one of the more aggressive protocols in dealing with Lyme disease. He recommends long term antibiotic usage. He also added some medication to help fight co-infections, these medications work synergistically with the antibiotics. The first year of treatment was excruciating. Every four weeks I would have a “Herx”, large amounts of the toxins would be released and my symptoms would flare so much I wished I was dead. I spent three days in the intensive care unit once because of some complications with my heart. My bills were piling up and my savings were drying up. Even with the help of insurance I still had to pay large co-pay amounts for my “non-preferred” prescriptions. I contemplated suicide, I figured my family was better off without me because I had become such a burden.

I struggled with grief. I had lost life as I knew it. I had been a high school science teacher and a coach. In a matter of months I went from working fifty or sixty hours a week to barely being able to get out of bed in the morning. The research I did in late-stage, chronic Lyme disease was anything but encouraging. I feared I would never get better. My friends and family didn't know what to do. They didn't understand why I was not better after a month of treatment, then a year, then two years. Everyone had to make sacrifices in consideration of all of my limitations and medical needs.
After some improvement and grieving, I made a choice. I would not sit at home feeling sorry for myself and let my body lose the battle. I turned to God more than ever and with a renewed faith I was able to improve not only the outlook for my own life, but I was able to start ministering to others. I began volunteering at my church when I felt well enough to leave the house.

I had been trying for over a year to get disability help. Local lawyers would not touch my case because they thought my doctor was too controversial and that I would lose my case. I eventually found an out of state company to help me. After my initial denial they worked hard on my case. One year after I was denied, I was finally approved for Social Security Disability and began receiving a check each month. I no longer had to worry about going bankrupt.

Gradually my health began to improve and I was able to leave the house. I no longer needed to use a wheelchair or scooter to get around in stores. And after a few more months I did not rely on a cane anymore either (unless I was in the middle of a flare). I now walk on my own and have regained enough of my mind and strength to begin working again.

At the same time I was getting better, I noticed my son was starting to show symptoms. It took a long time to get him tested. However, once he was diagnosed he began treatment with a much more hopeful prognosis. Now our family has new obstacles to face, but we have learned enough about the disease that we can advocate for ourselves and help to educate others.

I'm not cured. I still have years of treatment ahead of me, but I'm improving enough to begin thinking of the future once again. My goals have changed. I am looking forward to going back to school. I am on track to become an ordained minister. My goal is to be a missionary for Christ, to share the faith which helped me heal mind, body and spirit. I have hope again.

Psalms of David
“I hate my life. I hate myself. I hate my body and all its limitations. I hate this dam disease. I hate everyone who thinks they understand  how I feel. I hate everyone who thinks I just need to “Get over it” and I hate people telling me to just be at peace, and that as long as I have God in my heart I will be ok.  Well God’s not here. I am alone and I want to die.”
J.W.- age 30 -  Vermont