Leah Gernetzke
Chronic Lyme disease sufferer calls for better doctor education

Published in The Lakeland Times

In a matter of weeks, John and Jillayne Waite watched their healthy, 30-year-old daughter Jennifer Kane spiral headlong into a debilitating, mysterious illness.

Seven years later, she still hasn’t fully recovered.

“No one should have to get sick like this anymore,” said Kane’s mother, Jillayne Waite.

But unfortunately, they still do. The culprit of her weakened state, chronic Lyme disease, infected about 28,921 people in the United States last year. Thousands more are estimated to be infected without knowing it.

“Now it’s the most common vector borne disease in the United States,” said Ben Beard, chief of the bacterial diseases branch for the Centers for Disease Control and Prevention (CDC). “We often think it doesn’t get the respect it’s due. There’s some 70 or 80 diseases and conditions reported each year to the CDC and we tabulate those. Lyme disease is actually number seven on that list.”

Beard spoke at a public conference on Lyme disease held by the CDC in Wausau on Thursday, June 17, along with Diep Hoang Johnson from the Wisconsin Department of Public Health.

He said one of the main reasons so many people are suffering from Lyme disease is because of inaccurate diagnostic tests.

He estimated that the most common tests for Lyme disease, called ELISA and Western Blots, are only 50-60 percent accurate – and in fact, a 2007 Johns Hopkins study showed that as many as 75 percent of patients with Lyme disease test negative using these common tests.

If it’s not detected early, the disease progresses from acute to chronic Lyme disease, turning a highly treatable bacteria into a debilitating health problem.

This was the case for Kane, who said her test results for the disease were negative.

“I knew I was bit by two ticks, kept the ticks, but I never got a rash, so I thought, ‘oh I’m fine.’ And then when I started to get sick, I said, ‘could this be Lyme disease?’ And I tested for it and came back negative,” she said.

But two months after she was bitten in March 2003, she began to display neurological symptoms, especially headaches.

“They were excruciating headaches, like a band around my head, exactly where your cranial nerves are,” Kane said. “It just blows my mind now, knowing what I know, that doctors never said, ‘oh, those are your cranial nerves, let’s look into this.’”

Doctors’ lack of specialized education is also a key factor in missed detections. Many practitioners commonly believe that a bulls eye rash, called erythema migrans, must be present in order to diagnose a patient with Lyme disease. However, according to the CDC, the rash is not present in all infected patients.

Lyme disease, known as “the great imitator,” mimics the flu and other illnesses such as lupus, chronic fatigue syndrome, fibromyalgia, and many more, making misdiagnosis common as well.

For Kane, a misdiagnosis meant she could no longer live a normal life. Her body slowly became paralyzed, including her facial muscles. At her lowest point, she dropped to 90 pounds and spent every day with her head under a pillow.

“I’d be awake but I couldn’t move,” she said. “It’s scary. You’re a 30-something-year-old person thinking you have the whole world in front of you and all of the sudden you’re bed-ridden and can barely function.”

Kane underwent a variety of treatments, including cortisone injections, narcotics and a peripheral nerve stimulator that intercepts pain signals to the brain.

“They were constantly treating the symptoms. The bacteria from the tick was in my body. It continued to grow and grow,” she said. “Your blood stream can only handle so much of the bacteria, and then it’s like the apartment gets full and starts infecting other parts of your body. I personally have had problems with my bone marrow, my spleen, and my heart.”

Before the disease, Kane co-managed Cedar Creek products, the business she owned with her mother, and enjoyed an active lifestyle.

“I was doing 20 trade shows a year, I was on the road doing sales,” she said. “I was extremely active, my husband Eric and I loved to bike, mountain climb, hike, fish. My son was two-and-a-half when I got ill. He doesn’t even really know the real me. It’s kinda sad.”

After suffering for over three years and seeking opinions from multiple doctors, she started seeing Dr. Lavadure at Howard Young Clinic, who looked into her case carefully and re-tested her for Lyme disease. This time the results were positive.

Lavadure began treating her with antibiotics and pulse therapy, which kills the bacteria every four weeks, in accordance with the Lyme disease bacteria’s life cycle.

When the antibiotics kill the bacteria responsible for Lyme disease, they release neurotoxins that causes extreme pain – a phenomena known as a Jarisch-Herxheimer reaction. Though Kane says she still has to overcome this pain every four weeks until all of the bacteria has been killed, in addition to many other lingering symptoms, she is now able to get out of bed sometimes and interact with her family again.

“I have hope again. It’s been seven years. The first four were really, really hard because I didn’t know what the next day held, I didn’t know if there would be a next day,” she said. “It’s still tough, but I keep very balanced, and positive. No matter how bad today is tomorrow could always be better. I have a positive attitude and a great support network. My family has just taken this under their wing. My husband is my pillar, and I have a nine-year-old son who just brings light into the room.”

Kane said now she wants to help educate the public about the disease so other people don’t have to endure what she did.

“Thirty days of antibiotics will kill the disease in almost every human being if it’s caught within the first six months. There’s no reason for people to get sick like this,” she said.

She’s part of the Lyme disease awareness network, and especially advocates for more education and accountability for doctors. Their lack of knowledge has in large part contributed to the many years she spent without adequate treatment.

“I have had so many doctors tell me, ‘you don’t even have a disease.’ They tell me I’m looking for attention, it’s all in my head,” she said. “I’m not angry with them, they only know what they know, and the personality of a person that becomes a doctor – there are very few that are going to say ‘I don’t know,’ and the ones that can are the ones that are finding out about chronic Lyme and are trying to help their patients.”

However, she said knowledge about the disease has improved drastically since she first became ill in 2003. Now, she’s working with Lyme disease specialists and doctors at University of Chicago and the Aspirus network. She’s also taking part in cutting-edge research at Columbia University in New York.

“I have a team of doctors who are willing to accept they don’t have all the answers. The fact that that bridge has been crossed is amazing,” she said. “There’s a lot of stuff out there that’s very promising.”