Sonoma County, CA
Diagnosed: June 2013
Current health: “Happily, no longer showing symptoms of Lyme”
My hope is that as we tell our stories, and shine a light into this disease, things will change. -Eliza H. (Katherine’s mother)
Katherine, just a young child when she first became ill, suffered with Lyme disease for years before doctors finally diagnosed the illness, and, even after diagnosis, struggled to get the care and coverage she needed. Here, her mother, a noted author and documentary filmmaker, shares this very poignant story about their family’s challenges with the illness.
“Katherine’s Lyme story started when she was seven years old. She had a bullseye rash, one of the tell-tale signs of Lyme disease, only I did not know it at the time, and apparently neither did her doctor. The doctor dismissed the rash, it went away, and I did not think about it again until years later when researching Lyme disease. By then, we had been to doctor after doctor seeking answers for her growing health issues. What started as daily headaches and nausea developed into migraines, joint pain, foot pain, exhaustion, dizziness, and so much more. Her doctors kept insisting she was depressed, but she did not act depressed. She was in pain, constant, debilitating pain.
“When Katherine began to have heart issues, I had enough with her doctors minimizing and dismissing, and scoured the internet searching for answers. I stumbled upon Lyme disease and was floored. How had none of the doctors or specialists considered this? Her medical history was textbook Lyme disease. And then there was the rash. I remembered the rash. I looked into her medical records and sure enough there it was, a perfect circle. The pieces were fitting together.
“I took her to a Lyme-literate doctor (LLMD) and she tested ‘CDC-positive’ for Lyme disease. This diagnosis meant, the LLMD explained, that her test results were reportable to the Center for Disease and Control because over five bands tested positive. That was as definitive a Lyme disease diagnosis as one gets. Katherine had the rash, the exposure, the clinical symptoms, and the test results, and yet we could not get her insurance to cover any treatment.
“For many, this is a familiar Lyme story. The more I researched, the more I learned how controversial Lyme disease is, how deeply divided the medical community is about every aspect of it, from testing to treatment, and that this polarization is not just a difference of opinion but a bitter rivalry. In the middle of this controversy was my daughter, a very sick child. I had to make decisions about her medical care with doctors pulling me in opposing directions. One one side, we had the Lyme doctors who said she had an advanced infection that was complex to treat, and without treatment it would continue to progress. But their treatment was expensive and not covered by insurance. On the other side, we had her Kaiser doctors who warned us that the Lyme doctors were charlatans just in it for the money and who flat out denied Katherine’s Lyme disease diagnosis, continuing to insist it was all in her head.
“I had to make a decision about which direction to go. At least the Lyme disease doctors offered hope, and they made sense. My daughter was sick. She needed treatment. We started treatment with the LLMD and initially had great success. Katherine went on a combination of oral antibiotics and herbs and, for the first time in years, she had symptom-free days. She started her freshman year of high school, was earning straight As, and joined the debate team. Things were looking good. I was no longer getting calls two-three times a week to pick her up from school because she was in too much pain to finish the day.
“She continued on her Lyme protocol but her liver enzymes began testing high, which can be a side effect of long-term antibiotics. Her doctor recommended a break from the antibiotics to give her liver a rest. Two weeks later, she crawled into bed and did not come out again for the better part of nine months. The Lyme disease had come back with a vengeance, only this time, nothing worked.
“We tried every combination of oral antibiotics, herbs, and diet, and she just grew sicker and sicker. She lay in a dark room in terrible pain, falling into what I called the Lyme coma. Her LLMD recommended she go on IV antibiotics and ordered a PICC line, a surgically implanted IV. Her protocol was complex and it was all so overwhelming. I could not imagine how people who were sick got through this without a full-time advocate and support person in place. What we needed was a health care team to manage her protocol, to give her nursing support, and to provide a comprehensive plan for her treatment, but we could only get the care we could afford. It all felt like back alley medicine. Her LLMD was trying to treat her, but it was limited by our bank account, while Kaiser continued to be in deep denial about Lyme disease, leaving my daughter bedridden, refusing any treatment at all. We were fully insured, and yet we were on the outside of medicine looking in.
“Her PICC line grew infected and caused her to go into septic shock, which is when bacteria enters into the bloodstream, causing internal organs to shut down. Katherine arrived at the hospital just in time. They were able to get her vitals stabilized but the doctors did not have a handle on the sepsis. She had been on antibiotics for so long they could not find a match for the sepsis. It kept coming back resistant in the lab. It was a ‘virulent form of bacteria,’ we were told — by ‘virulent’ they meant deadly. It was ‘just a matter of time,’ her doctors said. ‘Go home, pack your bags. She is going to be here for awhile. If she gets out at all.’
“I am a praying woman and I took to my knees, praying for my daughter’s life. That weekend, news came back from the lab: the sepsis was gone, and with it, all her symptoms of Lyme disease had disappeared too. We had a true miracle healing. All the doctors, all the treatment, all the pain and suffering … nothing had worked for her. They had all failed her. And the miracle happened when we were at the darkest point in Lyme disease, when I had lost all hope of her ever getting better and was making plans for a future that began and ended at the foot of her bed.
“It is now two years later and the chronic pain never returned. Katherine is back in high school, making up her lost year and planning for her future. As I type this, she is volunteering in a kindergarten class, helping little ones learn art and literacy. She has big plans for her future. The dark days of Lyme disease are dimming every day she moves forward symptom-free.
“Nobody should have to go through what she went through, and so much of it could have been avoided if the medical community would wave white flags and come together for the benefit of their patients. Our story is a common one in the Lyme community: the endless doctors, denial of care, and failure of insurance coverage. Our story took an extreme turn in the end, but it should never have gone that far. Lyme disease is too well documented and too prevalent for this situation to continue, so my hope is that as we tell our stories, and shine a light into this disease, things will change.
“I thought I had lost my daughter to Lyme disease, but God had other plans. If you, or someone you love, is suffering now, do not give up hope, because you never know when that change will come.”
Eliza Hemenway is a Bay area author and documentary filmmaker. You can read more about Katherine’s and the family’s story in Eliza’s recently published tome, Paris in Oakland (2016).
For the month of September (2016), Ms. Hemenway is extending an offer for a free lending copy of Paris in Oakland to anyone who volunteers or works in healthcare (or a related field) and believes the book would be helpful to clients. Email her directly for a copy.