When the doctors first told me that I was negative for Lyme disease, I was not too surprised. “Oh, what a big shock!” I thought, “Doesn't Lyme attack your joints? Well I'm dying over here!” I was one of the countless Pennsylvania residents dangerously misinformed about Lyme disease. Unfortunately, I was also one of the Pennsylvania residents infected with Lyme disease, and one of the fifty percent of people who test negative on the ELISA, a standard screening test.
In May of 2010, I was working full time and planning for graduate school. Never a very healthy person, I tired easily, was spacey, had joint problems, and had been through health problems before. When I was a child I became very ill, and my mother repeatedly took me to the doctor. The doctor diagnosed me with a cold, to a flu, to asthma, assuring my mother I was fine. I tired easier than other children, and often felt dizzy.
I would have episodes of fatigue, when I could not walk more than a few feet and would cough continually. One day I had one of my episode wheres I was severely ill, and my mother, filled with “mother rage,” practically carried me into the doctor's office unannounced. The nurses quickly put me in a wheelchair.
When they wheeled me into my doctor's office the final time, the doctor diagnosed me with pneumonia, and sent me to the hospital. After a few days of IV antibiotics, I was walking around again, and they sent me home. Soon I was diagnosed with Attention Deficit Disorder. I had always been a remarkably spacey child, but everyone assumed that was just how I was. In college, I would have episodes of fatigue and flu-like symptoms so severe baffled doctors diagnosed me with Chronic Fatigue Syndrome. They did not know what else to do.
However, I was functional (more than that, I was a workaholic) until I got a mysterious red rash with a dot in the middle of it in 2010. Contrary to popular opinion, I am not a hypochondriac, so I ignored it. I had seen Lyme rashes in pictures before—the notorious bulls-eye rash—and it did not look like one of those. So I shrugged it off, and, in fact, forgot about it for awhile.
One month later I was volunteering at a shelter, and I encountered a woman who had Strep Throat. A day or too later, I fell ill with what seemed like a bad flu. Then neurological problems began. I found it hard to walk, hard to think, hard to remember what I had been doing the day before. The sickness grew daily, and on my birthday I was nearly too sick to sit up and eat pizza with my family. I was floored, and baffled that “Strep Throat” could do that to somebody. Doctors gave me a fourteen day supply of a simple antibiotic, without doing any testing, which I began to take. I got much worse in a day or two, and after backing my car into a pole and being unable to find my way in a grocery store, I checked myself into the hospital.
I struggled to walk—it was like my legs just wouldn't move. The doctors at the hospital thought I had Multiple Sclerosis, so they gave me two MRIs and a Spinal Tap, all of which came back negative. As negative tests poured in over three days, the doctors grew baffled. During my hospital stay, a symptom that would stay with me for months appeared: intense leg pain, only removed by morphine. Stumped, one of the doctors decided I was psychosomatic. Another noticed I had fluctuating blood pressure and told me to eat more salt.
They sent me home with an appointment with a Rheumatologist because of a low positive ANA titer. She decided I had Fibromyalgia. At this point I was dealing with frightening neuropsychiatric problems. I am a calm, rational and friendly person most of the time, and am good at keeping my temper. But now I was snapping at people: I snapped at her, and then burst into hysterical tears. I could not understand what a disorder associated with widespread pain had to do with my neurological problems and trouble walking. I also could not understand why I had reacted so rudely. My irritation was understandable, but the way I responded was completely different than my usual personality. I was ashamed months later. Now I realize that is normal for people with the level of infection I had in my brain.
After this, I seemed to get better: another sign of Lyme disease, though at that point I'd checked that off the list. My tests had been negative, right? Seeming “cured” and feeling foolish, I decided to go on a planned trip to Peru with my mother. At first, I was fine. But in the last few days of the trip, my illness exploded on me. Feeling sicker and sicker, I tried to push on and ignore my body. We went into an underground Spanish burial chamber, filled with skulls. And it was there I felt all my energy drain from me. I thought for sure I was going to die. I had a thousand flues inside my body at once, at least, it seemed like that. I could not stand in the line to go home at the airport. I could not eat. I had never and I have never felt so sick in my entire life.
Going back to our car on a bus, I prayed that I would die. I kept thinking any second I was going to die, but it did not happen, and at the time I was mad about that. The next day I woke up coughing up pieces of black “stuff.” By the end of the day, I lay in bed barely conscious, unable to talk. Worried, we finally went back to the emergency room, where doctors told us they'd tested me for everything that could “kill me that night,” and sent me home. I now know that is not true: they did not test me for a deadly co-infection that I had in my body, and now, still do.
Regardless of whether or not the hospital had been helpful, I soon received a 30,000 dollar bill. I had fallen in-between coverage gaps: My coverage stopped after college and was supposed to resume soon after, when I went to graduate school. I had thought nothing would happen in such short a time, but I was wrong. Horrified, I watched helplessly as more bills came in from doctors working at the hospital, my primary doctor, and testing facilities. Luckily for me, I qualified for medical assistance. My job only paid $10 an hour, and I had no benefits. Countless families, however, don't qualify or their insurance does not pay. For them Lyme disease becomes even more a financial burden than it has for my family.
After this, I got better, but never as better as I had been before. This was a cycle: I would get ill, and then I would improve, but never to the same level as before. Every time, I would come out of it worse. Being the type of person I am, I decided if my illness was progressive, I had to go to graduate school anyway. This was crazy logic, but I was, as most people who become chronically ill are, afraid to lose my life as I had planned it.
And so I went to a statistics class I needed with my new cane, sometimes so out of it I could not understand my teachers speech, or so sick I would lay in the grass after class, too afraid to drive home. One time, I went to class with my friend's mother's oxygen on, because I literally could not breathe. My doctor had told me I was “having panic attacks.” We now know two co-infections I have cause severe air hunger.
An A- in Statistics heightened my confidence that I could do graduate school, and so I moved to Pittsburgh in Fall of 2010. At this point, I suspected Lyme thanks to the prompting of a close friend who has Lyme and had been through negative tests and disparaging doctors before. I had a positive Tilt Table Test, which revealed my dizziness and heart problems had to do with autonomic dysfunction, probably caused by Lyme. I found a new primary doctor, who believed that I was ill. She was a great blessing.
I also went to go see an Infectious Disease doctor, who diagnosed me with Chronic Fatigue Syndrome after briefly examining my long list of ills: chills, sensations in my skin, losing time, fatigue, joint pain, muscle pain, weakness, confusion, dizziness, tremors, twitching, flu-like feeling, trouble walking, balancing problems—the list went on and on. When I brought up my concern about Lyme disease, he told me I “had all the symptoms of late stage Lyme,” but it was “impossible” that I had it. Then I went to see a “Chronic Fatigue Syndrome Specialist,” who was unhelpful.
One day, I became confused after an eye exam, and wandered the hospital in a daze. After an hour or two of this bafflement, I went to the emergency room, where they blamed my problems on, again, psychiatric causes. They also asked me if I planned to kill myself and told me I had a “nice Lyme story.” When they sent a counselor to talk to me, he decided I was telling the truth and got them to prescribe me twenty-eight days of antibiotics—the most stringent treatment for Lyme, and not enough (even by those standards) for late stage.
Fed up, my mother and I made a journey we'd scheduled a month before to see an LLMD, who clinically diagnosed me with Lyme and put me on Doxycycline. But the treatment was too much, too fast, and I became bedridden, unable to go into my kitchen for food. I had to stop the treatment until I went on medical leave and moved home, which I'd already been planning to do. I had been unable to start my internship because of my illness, not only because it made me too fatigued and ill to go to it.
My severe brain fog caused a funny symptom: I repeatedly mixed up Tuesday and Thursday. Regrettably, my interview was on Tuesday, not Thursday. Oh, and my resume had my old phone number on it: something that I never would have made a mistake on before my illness. When this was fixed, I received a scathing call from my potential field instructor. I was humiliated, and sure that I would never get the position. I would have tried for another, but decided I could not, in my state, manage something so complicated.
This was a good decision, because I got worse. By the last two weeks of school, I was not sure if I could make it. Perfect attendance girl began to miss classes, fall asleep in classes, and not understand what was going on in classes. At the last session of my favorite class, I was too confused to give a decent presentation. I, who loved debating like nothing else, could not do it anymore. I seemed to fall into, “I am so confused” every time.
My last weekend was a horror: my lower spinal cord became inflamed, and I could barely stand. I started having full body seizures and dystonia. Housebound for three days before finals, I wrote to ask my teacher if I could take the test at home. No, she said sympathetically, and so I dragged myself to class. In the final, I started having episodes of dystonia. I was the last one to leave, because I wasn't even sure what I was writing. When it was all over, and I got my hard-earned 3.93 GPA, I wondered what on earth I had been trying to do, or prove.
Returning home with my mother's help, I took up residency in my old bed and began treatment with a new LLNP, who was careful not to prescribe too much at once. She ordered extensive tests in January 2011, and I came back CDC positive for Lyme disease by IgG. I also tested positive for the diseases Babesia, Bartonella, Anaplasmosis, Mycoplasmosis and an active CMV infection. My doctor believes I have another infection as well: I had four of five bands. Other tests revealed how completely Lyme had ravaged my body. After months of fighting to get doctors to believe I was sick, and my own family to believe it was probably Lyme, I could finally stop fighting people and start fighting spirochetes. For me, and other Lyme patients, positive tests are happy things.
Sadly enough, we are still waiting to hear from the insurance companies about the tests, which were expensive. Lyme has placed a huge financial burden on our family. Originally, my workaholic tendencies were enough to help me scrape by in graduate school. But when I went to school, I was too sick to work, and I had medical expenses not covered by insurance. Soon I was broke, and the financial burden fell upon my family. I was rejected for disability, and we are applying for temporary disability now.
Lyme treatment does make you worse before you hopefully get better. Currently I am weaker, and struggle with simple tasks. There are days were I do not even go downstairs, and my mother takes me places in a wheelchair when it is necessary. I am on antibiotics now, and in a few months my doctor plans to put me on IV antibiotics. I am optimistic about these treatments, and hope they will permit me to go back to school. I do worry that permanent damage has been done, but I am grateful that now, I have a diagnosis, and doctors who care about me and want me to get better.
