Who knew that a tiny bloodsucking insect, no bigger than the head of a nail, could cause so much havoc in anyone’s life – or at least so I thought as I crouched over the toilet in my house, heaving my guts out…
I am fighting an invisible enemy. One that goes undetected in 9 out of every 10 cases. My story does not have a clear beginning nor an end in sight. Doctors still do not know everything about the workings of my condition. And neither do I. But I will try to describe my journey in the way that I've experienced it.
When I was in third grade, I was sitting in my bed with my sister and we were playing hairdresser. She was moving my hair this way and that, giving me ‘royal hairstyles.’ Suddenly, she felt a small lump on the bottom of my scalp. When she looked closer, the lump started moving and she screamed. When my mom came running in, she took a pair of tweezers and ripped out a squirming, black tick the size of a poppy seed or a speck of dust. As I cried out of fright, she tried to tell me that it was just a bug. Nothing to worry about. The next morning, my mom took me to the doctor and they placed me on two weeks of antibiotics. They told me that I had nothing to worry about. It was just a precaution. After two weeks of bitter-tasting medicine, I was in the clear.
When I was eleven, I developed back pain. However, this was not unexpected because I was a competitive gymnast training 20 hours a week. Based on a recommendation from my coach, I went to see a sports medicine doctor at Children's Hospital in Boston. After a series of X-Rays and MRI’s, they found nothing, but decided to treat the pain as if it were a stress fracture. It was just a precaution. I spent six weeks in a hard back brace and began what was to be a long series of physical therapy treatments. But to no avail.
My back would cause excruciating pain randomly throughout my day. I went to another sports medicine doctor at another hospital, who then referred me to an orthopedic surgeon. After unsuccessful cortisone injections and no further results, I was referred to a sports medicine orthopedic. After a bone scan, CT scan, and pelvic MRI, they found nothing as well.
At this point, it had been around two years of doctor after doctor and still no explanation for my pain. The doctor told me that I had to quit gymnastics permanently "if I wanted to be able to walk when I was 20.” Of course, he meant it as a joke, but 7th-grade-me took it quite literally. I was scared, but we had exhausted every back-related injury the doctors could think of. Why couldn’t we find any answers? I half-convinced myself that I was making up the pain. It was time to try their version of a hail-mary.
Previously, I had been having joint pains for years. We had been under the assumption that this was a consequence of 12 years of rigorous gymnastics. But the sports medicine orthopedic at Tufts referred me to their rheumatology department to test for rheumatoid arthritis. After a full workup of every disease in their narrow specialty – even lupus – they found nothing. Again. When the rheumatologist referred me to their pain clinic (whose main function was to teach people how to live with pain), my family and I decided that we’d had enough. It was time for a different approach. I was not making up the pain and I would not be given nerve blockers and drugs to try and suppress that pain. I was only fifteen. How was I supposed to fight this battle if I didn’t know what I was fighting?
Finally, a miracle came our way. My miracle was in the form of Dr. Lantsman. She is a doctor specializing in internal medicine; my mom calls her “the doctor of last resort.” Following the recommendation of a friend, we visited her office. I was incredibly nervous. I acted as if I already knew she wasn’t going to find something. But she was the antithesis of the other white coat-clad doctors I had already met. Where they were cold, clinical, and abrupt, she was warm, inviting, and thorough. Where they focused on their procedures, checking off boxes, she looked between the lines, exploring. Where they had false hope, she had answers.
Dr. Lantsman did blood tests for a wide range of every possible disease. But since the blood tests were not routine, they had to be shipped to various labs around the world. This meant they weren't covered by insurance. She also immediately put me on a gluten-free and dairy-free diet (for one month) because they were known inflammatories and could have contributed to my joint pain. This is how I discovered how gluten can wreak havoc on my body. It causes migraines, cognitive function issues sometimes described as “brain fog,” hives, joint pain, and nausea. But why?
After a couple of months, the results came back. She informed me that the test for Lyme came back “indefinite.” The results showed that I had three Lyme-specific bands. A definite diagnosis for Lyme needed more than three bands. While I despaired that this meant another ‘nothing’ result, Dr. Lantsman believed that this was the proof something was going on.
I learned later that Lyme tests are often unreliable because chronic Lyme buries deep in the system, becoming invisible to the tests. Although I didn’t receive a definite diagnosis, it was more of an answer than I was ever going to get. After a few months, I was put on a regimen of supplements and herbs. Twice a day I had to consume a concoction of a dozen foul-tasting herbs. Twice a day I would wonder if it was all for nothing. After a month, the medicine started to show results. But the results came in the form of joint pain, weekly migraines, nausea, and hives. Not the kind of results I had been hoping for. But these results were good news according to Dr. Lantsman. They signaled that the Lyme bacterium was resurfacing. I finally had my answers! A fleeting moment of happiness.
Last November, I returned to Dr. Lantsman’s office and learned that the current herb treatment would last a few years, returning to it every year to prevent flare-ups. As we discussed the various options of treatment, I realized that I didn’t want to still be sick entering college. It was time for something more drastic. It was time to try a series of antibiotics. Though at first my mother was hesitant to start me on any prescription for an extended period of time, this was the only other feasible option. After Dr. Lantsman wrote me a list of prescriptions the length of a CVS receipt, we started to discuss how the treatment would affect my life in the long term. I did not want to be hearing about how the bacterium, foreign bodies, invade and live in my cells, buried deep in joints, my brain, and my immune system. I certainly did not want to be hearing about how I would have to consider my options when having children due to the ability of the disease to be passed down. I am only sixteen.
As we switched from the herbs to the antibiotics, I rejoiced at the simplicity of taking pills. But soon, I began to dread the 7 morning pills, 5 daytime pills, 6 dinner pills, and 7 bedtime pills. Dr. Lantsman assured us that I would just have to find the right balance of medication for me as I switched from Doxycyclin to Cefuroxime because of severe dizziness, fatigue, and nausea. But the symptoms only worsened as my health, both mental and physical, spiraled. These painful rounds of debilitating treatment were not an improvement to the milder symptoms of Lyme and I found myself missing activities in and out of school. I even had to drop out of taking the ACT one Saturday despite months of preparation.
Now, as I settle back against the cold porcelain of the bathroom tub, it would be normal, even expected, that I would have doubts about the success of this latest experiment to rid me of this disease. But as my stomach calms down and the waves of nausea subside, I think forward to a day when I can run again with my dog, read a textbook without falling asleep (well, maybe that will never happen!), and basically have a healthy, normal life. But even if this doesn’t come soon, I grasp onto the idea that I’ve come this far, battling indifferent doctors, and uncertain diagnosis.
By Julia Temple, Staff Writer, December 2018