A New Path

I needed the the help of a specialist who understood Lyme disease for a definitive answer. Sadly, Lyme-literate physicians are hard to find. They are devoted to helping their patients fight a disease the CDC is hesitant to acknowledge, late-stage Lyme disease. In some cases, they face persecution for diagnosing Lyme and for having too many cases because others refuse to treat. It must take amazing bravery and grace to work to make a difference where the medical establishment has failed. Dr. Charles Ray Jones, the Lyme-literate pediatrician featured in Under Our Skin is an excellent example. Lyme disease can be incredibly complicated. The cases are the toughest of the tough. Organizations like Turn the Corner Foundation are working to make a difference. Their work includes training physicians to accurately diagnose and treat Lyme disease and the foundation is an excellent resource.

The morning of my follow-up appointment, one of my nature photos appeared on the cover of the New York Times. I prayed it was a sign of good things to come. At the appointment, I listened, then cried. I met my parents in the parking lot. More tears. Nearly a year and a half after we first suspected I might be misdiagnosed, we had our answer. I undoubtedly had Lyme disease. The Lyme bacteria had affected nearly every part of my body including my heart, which had developed a rare T-wave flattening and mitral valve prolapse. Along with small nodules in the thyroid, I had a one centimeter nodule close to my spine that would need monitoring. I also had very high viral loads from multiple co-infections. At the time of my diagnosis, I had experienced 71 of 75 Lyme symptoms. A picc line insertion was planned so I could receive IV antibiotics over the next six weeks. I would remain within 45 minutes of the hospital during my six weeks of treatment, hours from home.

I was reeling: relief to finally have an answer, anger that it had taken so long, terror knowing that my children were also sick, sadness to be saying good byes to family and friends for weeks, elation at knowing I had a chance at a better future. In less than a week, I was driving to begin treatment and a new life. I turned on the radio. The election returns were beginning to come in. The third amazing event of the week was unfolding. I woke to a message on my phone from a dear friend,

"It's a new day! You're beginning treatment and we have a new President!"

It was November, 2008.