‘The Great Imposter’: Living and Laughing With Lyme Disease
On August 3, 2010, during final exams for my first semester of business school I experienced symptoms of what I thought was the stomach flu. I had fever, non-stop nausea, and back pain, and I vomited anything I tried to eat or drink.
After two weeks, the non-stop nausea and inability to eat or drink remained. I felt awful, lost weight steadily, and had to withdraw from graduate school. With my parents’ help, I spent an unproductive nine months going to gastrointestinal (GI) specialists at top U.S. medical centers and suffered through sometimes painful and often embarrassing tests to see why my GI tract had stopped working.
I encouraged my GI doctors to send me to other specialists who see patients for nausea. Tests by an ear, nose, and throat specialist and neurologist were also normal. I felt frustrated that no one knew the cause for my debilitating symptoms! The worst part of being a 22-year-old woman who “mysteriously” dropped from 130 pounds to 90 pounds was that some doctors assumed I was hiding an eating disorder. Fortunately, my family knew me well enough and resisted pressure to admit me into an eating disorders program.
The Key to the Right Diagnosis: My Swollen Knee
Next we consulted a highly-regarded integrative medicine doctor. She reviewed my medical history and symptoms and gave me a thorough physical. She asked me how long my right knee had been swollen. I had never noticed my knee was swollen, because the change was so subtle and it never hurt. She also noticed slight stiffness in my left cheek. The doctor’s keen eye and specialized training to become Lyme-literate led her to suspect I had Lyme disease. I was thrilled but skeptical when I heard this. I never had the typical bull’s eye rash, nor had I found a tick on me. Plus, other doctors had tested me for Lyme with the western blot blood test and my results were negative.
This new doctor explained that roughly 30 percent of people bitten by ticks carrying Lyme never get a rash, and the western blot test is often inaccurate. Other newer tests are better, and there are tests to diagnose other infections the Lyme ticks carry, called co-infections. Most non-Lyme-literate doctors are unaware these tests exist or question their validity. Many patients never become symptomatic until years after being bitten. By then the Lyme causes neurological damage and the infection is considered chronic. Lyme symptoms can vary widely and mimic other illnesses such as fibromyalgia, chronic fatigue syndrome, or Alzheimer’s — hence Lyme’s nickname “The Great Imposter.”
My new tests confirmed Lyme plus three co-infections: bartonella, mycoplasma pneumoniae, and chlamydia pneumoniae. I finally had an explanation for my inability to eat! My unusual presentation of neurological chronic Lyme and co-infections affected my GI tract, hindering my ability to digest and to eliminate toxins.
Since I was 11, I had experienced a host of symptoms from a “mono-like illness,” colds that became bronchitis, sinus infections, stomach viruses, “migraine” headaches, increased sensitivity to foods, to annual bouts of the flu in college. Finally I had an answer for my health woes. My Lyme doctors concluded that I was probably bitten at an early age and then spent years exhibiting the various symptoms of the “The Great Imposter.”
War With Bacterial Toxins Made Me Feel Worse
Since my case is severe, it is hard to treat. I was too sensitive to tolerate homeopathic or herbal remedies, so I needed a long-term antibiotic treatment administered intravenously. First I had a PICC line (catheter in my arm), but seven months later it failed and I needed surgery to place a port in my chest wall for a more permanent catheter.
Once I began treatment, some symptoms became more pronounced, like my Bell’s palsy (facial stiffness). I also developed more typical Lyme/co-infection symptoms: sensitivity to noise and light, stabbing pain in my arches, insomnia, brain fog, back pain, severe headaches, and seizure-like movement disorders.
My doctor warned me about the infamous “Herxheimer reaction,” which causes symptoms to worsen from the bacteria releasing even more toxins before dying. She told me, “You have to feel worse before you feel better.” Surviving a “Herx” makes you a Lyme warrior because every ounce of your body hurts, even blinking!
Unfortunately, I had to stop the low-dose antibiotics after only a few months, because my reaction from bacteria die-off was too severe. Although I was discouraged, I tried another Lyme-literate doctor. I began treatment with even lower dose IV antibiotics, but the Herxheimer reactions and excruciating pain kept getting worse. My inability to detox was problematic.
As I tried different treatments, I learned that even the tiniest doses of antibiotics or homeopathics were still too strong for my sensitive system. I still can’t eat anything, and my paralyzed GI tract can’t tolerate the standard tube feedings that would provide more calories and nutrition. The only IVs I can tolerate are six hours of daily amino acids (building blocks of protein) and important minerals I need to keep my blood levels normal. I continue to work with Lyme-literate doctors in my quest to find a protocol my body can handle to treat my Lyme and co-infections.
Live, Laugh, Lyme: A Lymie’s Philosophy of Life
Like many “Lymies” (Lyme patients), I was symptomatic and misdiagnosed for years. My family and I were unaware of the controversy over treatment of chronic Lyme and its co-infections. Educating ourselves involved countless informative, as well as scary and depressing Internet searches. To fill the void I created Live Laugh Lyme, where I promote the idea that laughter is the best medicine and post inspirational quotes, funny videos, and humorous content that resonate with Lyme patients’ unique and often debilitating, life-altering experiences.
It’s important for me to communicate that those with Lyme are not alone. I also bring awareness to and help legitimize Lyme as a chronic illness. I cherish feedback from my fellow “Lyme Warriors” and their loved ones worldwide who tell me that Live Laugh Lyme makes them smile despite their pain, makes them feel part of a growing community (over 2,500 strong), and inspires them to stay positive. I am touched when I see the faces or hear the stories behind the photos, like children holding signs to support their mothers or a woman holding a sign from her hospital bed. Having a positive attitude is critical to healing, and I am proud to help my viewers remain hopeful.
Lyme and its co-infections still attack my body, but they have not defeated my light-hearted spirit. My chronic illness taught me I am a determined survivor. I’ve learned that laughter is a powerful medicine and comforts strangers with a shared smile. I know after being this sick, I can face any challenge that comes my way!
Article originally appeared on Everyday Health