What was wrong with Karen Franks? Her doctors couldn’t figure it out, and Franks spent six years searching for answers as her life unraveled. In 2010, she finally received a diagnosis of late-stage Lyme disease, which she continues to battle. Franks has since become an advocate, working with the PA Lyme Resource Network. She shares her story for Lyme Disease Awareness Month.
MLT: Describe your life before Lyme disease.
KF: I graduated from the University of Pennsylvania with dual degrees in nursing and English. I had great jobs in benefits consulting and in pharmaceutical sales. I lived in Bryn Mawr, I had a lot of friends, I traveled, and I exercised a lot. I was really enjoying my 20s. Life was good—really, really good. Then the symptoms began to appear and overtake my life: profound fatigue, rapid heartbeat, dizziness, trouble concentrating. Eventually, I couldn’t bathe myself, drive a car or work.
MLT: With your background in medicine, you never considered Lyme as a possible diagnosis?
KF: Never—nor did any of the doctors I saw. One of the difficulties in diagnosing Lyme is that the symptoms are common to other diseases; they could be caused by multiple illnesses. Another problem is that the blood test for Lyme is missing some of the strains of the disease, so your results could be negative, but you could still have the disease.
MLT: So there was no tick bite?
KF: Not that any doctor could find—and that’s a misconception about Lyme. Only half of people who have it find a tick bite or rash. Also, symptoms can be dormant for years, until they slowly start to present.
MLT: What’s your treatment plan?
KF: I finally found my way to Dr. Joseph Jemsek in Washington, D.C. He’s one of the few infectious disease physicians who specializes in late-stage Lyme and is trained by the International Lyme and Associated Diseases Society. His goal is a two-pronged approach: Hit the body hard with a rotating system of antibiotics to kill the Lyme while using herbal and vitamin supplements to boost the immune system. Those antibiotics have to be administered intravenously to be effective, and patients like me have to live with or near someone who is qualified to use an IV. That’s why I’m living in Villanova with a friend who’s a registered nurse. The medications are not covered by insurance and cost me between $7,000 and $8,000 per month. But I am seeing results. I should be finished with the IV antibiotics in July, then I switch to oral antibiotics and see how my body reacts.
MLT: Explain the work you do with the PA Lyme Resource Network.
KF: Our goals are to educate the public and the medical community about Lyme, especially late-stage Lyme. And there’s a growing demand for that information. Every April, we host a symposium at Hershey Lodge for physicians, nurse practitioners and physicians’ assistants. I wanted nurses to come, so I did the legwork to make the symposium qualify for continuing-education credit. The event sells out and has a long waiting list. Physicians are desperate to learn how to help their patients. —Melissa Jacobs