Lyme Disease: A Patient’s Perspective

PERSISTENT HEALTH symptoms eventually led Utah-resident Charlotte Cobb to a diagnosis of Lyme disease. Despite her severe health challenges, Charlotte graduated college with honors and will soon earn her master’s degree, and she continues to take it one day at a time and live life to the fullest.

BSTQ: When did you first notice symptoms of Lyme disease?

Charlotte: I was 22 years old when I first got sick. Almost overnight I went from a healthy, extremely active college student and single mom to what I can only describe as living in hell. I lost everything within weeks. I was a professionally trained ballet dancer, an eight-mile-a-day runner and gym enthusiast. I was in college full time and raising my son who had been diagnosed with autism the year before. It was an unusually cool night when I woke up feeling like someone was holding a lighter on my feet and up and down both legs. It lasted about an hour and I was alarmed, but eventually fell back asleep, and when I woke up the next day it was gone. I went about my usual life for about two more weeks. Then, when I was getting ready for class one morning, I suddenly realized my face was numb. The numbness then spread to my neck and down my spine. I felt vaguely achy and a bit feverish, and I knew something was very wrong. Ten days in the hospital yielded no answers. I had an MRI, a lumbar puncture and too many vials of blood to count — and they found nothing. I was sent home with an antidepressant and told I was just a stressed-out single mom.

BSTQ: Did your symptoms progress?

Charlotte: My early symptoms were almost exclusively neurological. I lost feeling in my hands, legs and face. I felt crawling sensations in my scalp and an unexplainable pressure in my head; it felt like my brain was trying to escape my skull. Sometimes when I was driving, I would forget where I was in the city I’d been living in practically my whole life. I couldn’t recall simple words. I knew I was sick but multiple doctors told me there was nothing wrong. I had to drop out of college and my days were spent in emotional and physical darkness.

BSTQ: How were you diagnosed?

Charlotte: I took my son to see his pediatrician for a routine check-up. The doctor asked me how I was and, for some reason, I told him. He listened intently and then told me he thought he knew what was wrong. I was skeptical but willing to do anything, so when he gave me a lab slip, I went to have blood drawn. The next Sunday morning, the doctor himself called me. He had just gotten the results back and said I had Lyme disease and mycoplasma pneumonia. I had no idea how long the road was ahead of me; I was just ecstatic to have answers and know I wasn’t crazy. I felt vindicated!

BSTQ: How did your treatment plan progress?

Charlotte: I found out very quickly that mainstream medicine was not willing to accept Lyme disease as my answer. My doctor was called a quack and even as my symptoms began to improve on the prescribed antibiotics, they told me I absolutely did not have Lyme disease and that it was definitely all just stress. That is when my 18-year journey with this monster called Lyme disease began. I lost friends and family who believed I had become a hypochondriac and that I couldn’t possibly look healthy but really be so desperately ill. Lyme disease is an incredibly isolating experience. My son was eventually diagnosed with Lyme disease, Bartonella and mycoplasma. My mom and my brother were also diagnosed with Lyme disease. We still have no idea how we all got it.

BSTQ: What treatments seemed to help?

Charlotte: For years, we tried antibiotics, both oral and IV, and saw countless doctors, naturopaths and nutritionists. After five years, I finally went into remission only to relapse again a few years later. I have not yet been able to get back to remission. We are all doing the best we can, but I always say Lyme disease (and co-infections) is a disease for the rich. It’s impossible for a struggling single mom to pay for years of treatment, not just for myself but my son, too. We have good days and bad days.

BSTQ: What do you wish the medical community understood about Lyme disease?

Charlotte: I wish the mainstream medical community understood how unreliable the testing for it is. I wish they understood chronic and persistent Lyme disease and that they would stop labeling people as stressed, tired or mentally ill.

BSTQ: What has this experience taught you?

Charlotte: Lyme disease has taught me who my real friends and family are. It has taught me to be tenacious and resilient. It has taught me to never stop asking questions and fighting for answers. It has taught me most of all that when you know something isn’t right, no matter what anyone else says, you keep looking until you find the answers.