It’s crucial to acknowledge and treat congenital Lyme disease
By Kristina Bauer
Growing up in Illinois, I loved athletics and spending time outdoors exploring, hiking, camping, and boating. But I didn’t understand how important it was to prevent tick bites. My mom would check my head when I came in from playing in the woods, sometimes pulling off multiple ticks at a time.
I spent the next 30 years going from a very sick state, back to being athletic, and then going back to sick, not realizing what had resulted from those childhood tick bites.
Many doctors told me I was the healthiest sick person they knew, and I should increase my dose of treatment for Crohn’s disease even though I did not have typical Crohn’s symptoms. Truth is, they weren’t pulling the right labs.
I had flu-like symptoms, extremely painful fibromyalgia, migrating joint pain, frequent infections, and intestinal ulcers that would not resolve with prednisone and mesalamine drugs. Sixteen doctors missed my hallmark symptoms of Lyme disease because they hadn’t been trained in medical school about the symptoms and how to diagnose it properly.
I knew I was sick but got a pass from so many experts that I hoped I could lead a normal life. After college, when I married and had children, the health problems continued. By then, I was living in Texas.
Lyme disease and co-infections
In time, I visited the best-known Lyme specialist in the state and found I tested CDC-positive for Lyme and several co-infections. My LLMD made sure I tested my kids as well, although we knew that Lyme testing is not always definitive. Although none of my kids had ever had a known tick bite, they all had compromised immune systems—getting sick often and taking a long time to get well.
My sickest child also experienced periodic “absence seizures”— brief, sudden lapses of consciousness—yet had no bands on the Western blot Lyme test at all. Another child was positive through IGeneX Labs. The other two had only a few positive bands—but given a thorough history and taking into account the mother’s health, were given a clinical diagnosis of Lyme.
We treated all five of us over the course of 10 years, an expensive and gut-wrenching process. After about seven years, the kids and I were all feeling better. Over time, my kids resumed school, work, and enjoying their lives.
The heartache of watching our friends being active while we were stuck in bed, feelings of abandonment by the medical care system, and a lack of resources for the Lyme community is what fueled me to start advocating for congenital families.
The need for education
I thought, “how could this happen in America, and who is speaking for us?” I vowed to do what I could to change that by advocating, educating, and legislating for pediatric and congenital Lyme patients, and opening access to care for treatments. In time, I started the Texas Lyme Alliance and started speaking on behalf of congenital families because there was not a lot of discussion on the topic. I conduct interviews with leading clinicians and researchers for treatments and diagnostics to educate families and physicians alike.
I graduated from the Institute of Integrative Nutrition Health Coaching, and now connect people to resources for complex Lyme treatment all over the world. While I do not provide medical advice, I love unraveling the mystery of treating Lyme disease, and enjoy passing on my knowledge I’ve learned and my experience from treating with some of the best doctors from Texas to Germany.
This interview with Dr. Ronald Wilson can be passed along to your family, friends, and physician to help them understand how to test for Lyme, and how crucial it is to treat all the forms Lyme goes into to evade treatment and the immune system.
Dr. Wilson serves on the Medical Board of Texas Lyme Alliance.
You can see more of Kristina’s interviews on the website of the Texas Lyme Alliance.