Please understand that if I had written this a few years back, it would have not only been a breeze, but I would have been thrilled to embark on a project with such a hugely important subject. Writing is my heart. It kills me to say that it is now the hardest thing in the world for me to do. Lyme is in my brain, and my mind is what has paid the biggest price. This is my story, painfully condensed.
In the summer of 1973 I was bitten by a tick. At first the little bump behind my ear didn’t bother me much, but then it started to feel hot. It must have bothered Mom too because she brought me to the doctor to have it removed. It felt like the doctor had stuck a needle behind my ear and I screamed. I was only three years old.
About a week later, I developed encephalitis, an infection of the brain. It began with a fever and a nightmare I could not wake up from. There were bees all around me, stinging and burning my skin. Finally, I opened my eyes to the painfully bright walls of our bathroom. My father sat in front of me, eyes wild and fearful. I wanted to tell him I was awake, but my head hurt and the light was too bright. I closed my eyes and the buzzing in my ears turned to sirens.
I don’t remember the time in the hospital. What I do remember is a mixture of nightmares, hallucinations and rare moments of reality all jumbled together. This went on for a couple years. I remember being the only one in kindergarten with grey streaks in my hair. It was hard to concentrate in school and I was often so sick I would miss weeks of school at a time. My shins hurt really bad at night and the nightly nightmares continued. Everyone always thought I was being a crybaby or faking when I just didn’t feel right, and that made me more determined to endure as much as I could. There were times I felt fine, which made it harder to understand when I didn’t.
At the age of 14 I was brutally raped at gunpoint and physically abused. I became suicidal and developed a life-long injury to my hip from the physical abuse. Then at the age of 24, while pregnant with my first child, I was in a car accident. Nothing was broken, but somehow my back was never the same, just like the minor injury to my hip that left me with a limp. At 25 I gave birth to my son via emergency c-section. He was over nine pounds, strong and healthy. I went into shock. Recovery was a long and slow process. I suffered severe postpartum depression and probably as a direct result, a divorce from my husband soon followed.
Within a year, I met the man who would become my best friend and partner. He took me to beautiful places like the San Juan Islands where he first taught me to drive a boat. We both loved the outdoors, enjoying walks in the woods and numerous trips to the beach. After the birth of my second child I was still very active, but with each child, my back got worse and worse. By the time I had my third child, there was no denying that there was something very wrong with my back and hips. Then after sneezing, I herniated a disk and my prescribed bed rest left me barely able to move.
Finally I was referred to an orthopedic surgeon who diagnosed me with sacroiliitis, arthritis in the joints connecting my hips to my spine. I was sent to a rheumatologist who said after viewing my CT scan that there was arthritis all throughout my spine. Then he added that it was, “not a rheumatologic issue” and referred me to a sports injury specialist who promptly referred me to a physical therapist. All the while, my regular doctor was experimenting with various NSAID’s, (non steroidal anti-inflammatory). At the same time, I was having a painful swelling in my groin area that never was diagnosed.
Then came an excruciating kidney infection that left me with serious doubts about my medications. At one point I was given Vioxx and found myself in the ER, barely breathing, with a stiff neck.
Then there was “Sky.” He would have been my fourth child, but I lost him. After that I went off all medications, thinking that somehow the NSAID’s had killed my baby. I soon became pregnant again and lost that one too. By my third try, which I vowed to be my last, my doctor finally discovered that I was no longer producing progesterone, a hormone needed to prepare my body for childbirth. My baby was born just over six pounds, with jaundice--but alive!
About a year later, I was rushed to the hospital with horrible abdominal pain. I was diagnosed with diverticulitis, an infection of the large intestines. I was put on heavy duty antibiotics, and after taking them for just a few days, I began having horrible headaches down the back of my head. Another trip to the ER gained me a bottle of morphine, but no answers. Later when I saw my doctor for a follow-up, she said I was having caffeine withdrawal from being on a restricted diet. Eventually the headaches subsided and I thought the worst was over.
Then on February 26th, 2009, my whole world came crashing down. I received a phone call that morning letting me know that my best friend, who was like a brother to me, had passed away. At that very moment it was like a ton of weight had been thrown upon the back of my neck. I could barely hold my head up, and then the headaches came even worse than before. I struggled through the week of his funeral short of breath and having sharp chest pains as well as the unbearable headaches. My doctor insisted that it must be a new onset of migraine headaches. I no longer trusted her and decided to do my own research.
I stumbled onto an article called, “When to suspect Lyme.” I hadn’t even thought about the tick bite many years before, but I was curious and read it. It was like reading about myself, and by the end of the article I was sobbing. I knew I had finally found the answer. I went to my doctor right away, but her response was not at all what I had expected. Despite all the evidence right in front of her--my three inch thick medical file--she insisted that Lyme is not in Washington State. She agreed to a blood test, but said she would be flabbergasted if it came back positive. The first test was negative, but I refused to give up.
I sold my cars, took out loans, whatever I could do to afford an LLMD (Lyme Literate Medical Doctor). He immediately ordered a western blot blood test, which is much more accurate than the previous blood test I took. It came back positive.
Thirty-six years after being infected with Lyme disease, I finally received a diagnosis! I now take about 25 pills a day and still suffer with excruciating headaches, stiff neck, horrible back pain, numbness in both arms and legs, severe sensitivity to light, shortness of breath, sharp chest pains, dizziness, clumsiness, terrible short term memory, chills and fevers, and many other symptoms.
I have been undergoing treatment for Lyme for over six months now with no improvement. I sometimes wonder if I will ever get better. I know I have to keep fighting though, because this is much bigger than I am. I’ve learned that there are others like me, and I’ve learned that at least two of my four children were probably infected with Lyme while still in my womb. My fight is now for them, and I can only pray that they will be diagnosed before it is too late.
I cannot afford an LLMD for every member of my family. I can’t even afford my own treatment. If more people understood--if more doctors understood the devastating effects of delayed diagnosis, there would be no more people like me. Chronic Lyme Disease wouldn’t have to exist. But it does.
Christina Lindell, Washington