Ventura woman thinks Lyme disease caused 13 years of health woes

Aug. 04--VENTURA, Calif. -- The 20-year-old Ventura woman sat outside a Starbucks, portable oxygen tank at her side, plastic tube in her nose, catheter for antibiotics in her left arm.

"I think about a day when I'm not connected to anything," said Katelyn Bradley, who has been sick since she was 7.

She blames chronic Lyme disease.

The Ventura College student from Folsom has endured bouts of paralysis, pain and kidney stones. She is deaf in her left ear and suffers regular seizures.

Doctors provided a litany of possible diagnoses: chronic pain, chronic fatigue, Lupus, irritable bowel syndrome and fibromyalgia.

In March, Bradley tested positive for what her naturopathic doctor and she think is the buried cause of her problems: undetected Lyme disease that spread through her body like cancer.

"I couldn't believe it," she said of hearing the diagnosis and then learning symptoms of the disease built what seemed a mirror to her life. "I said, 'This is me.' "

Lyme is the tick-carried disease blurred by mystery and controversy for 20 years. Sometimes hard to diagnose and harder to test, it can trigger symptoms that often but not always include a telltale rash. If untreated, it can spread to the heart and the nervous system, causing shooting pains, numbness and memory issues.

It's usually treated with antibiotics. But about 10 to 20 percent of patients show symptoms after treatment, in signs that can last months or years, according to experts at the U.S. Centers for Disease Control and Prevention. Symptoms can also endure when the disease is undiagnosed.

The persistent pain and neurological symptoms are sometimes called late-stage Lyme, post-treatment syndrome or chronic. By any name, the condition constructs a medical divide reinforced by false positive tests and disagreement over the root cause of symptoms.

"The controversy is how to treat it and whether it exists," said Dr. Stephanie Greger, rheumatology division chief for Ventura County Medical Center. "I think it's polarizing because patients want to have a clear diagnosis. ... It's hard to accept a diagnosis where there is no clear etiology or causative factor."

But the divide also reflects a medical community that doesn't understand enough about chronic Lyme to offer consistent explanations or standardized treatment, said Dr. Christine Green, board member of the International Lyme and Associated Diseases Society.

"Those people have never been studied," said Green, referring to patients like Bradley. "We don't know enough about it. We need studies on it."

BATTLING AILMENTS

Bradley has heard the phrase "It's all in your head" so often she hates the words. Her symptoms started when she was 7 and suffered a soccer ankle injury that never healed. She ended up in a wheelchair for 12 months, unable to use her legs or right arm.

"I learned how to write with my left hand," she said.

She was diagnosed with complex regional pain syndrome, the first in a series of explanations she no longer accepts.

"It never really made sense," she said. "They were giving me diagnoses, but they weren't telling me why -- the cause of it."

Her health problems continued: round-the-clock pain and fatigue, kidney stones, a second bout of paralysis that left her in wheelchair for more than a year and hearing issues that pushed her to learn sign language.

Friends and relatives call her a fighter who tries to hide her pain.

"She wants to be who she wants to be, not what the disease is trying to define her as," said her childhood friend Victoria Viksne.

NOT COVERED

Bradley came to Ventura County to study nursing at CSU Channel Islands, but the fatigue and seizures were barriers. Now she studies holistic health at Ventura College, envisioning a career working in fitness and nutrition.

She was tested for Lyme disease by naturopathic doctor Emily Longwill of Ventura.

"We had been down several other paths," Longwill said. "It was like Pandora's box: One thing led to another."

A blood test called a Western blot showed the presence of Lyme bacteria in her blood, Longwill said, adding that the test was confirmed by a test involving white blood cells.

"There are different ranges. There are soft positives and very firm positives," she said. "In Katelyn's case, it was a very firm positive."

Bradley is being treated by Longwill and Dr. Miguel Gonzalez, a Thousand Oaks physician. She takes antibiotics and high doses of vitamin C through the catheter in her arm. She has sauna treatments involving oxygen and in separate sessions, infrared light. The therapy is designed to detoxify her body and strengthen immunities.

Insurance covered some of Bradley's previous care. She said much of her current treatment is uncovered, meaning her parents in Folsom absorb costs that can be over $500 a week. Her friends are starting a fundraising site on youcaring.com.

OFTEN MISSED

Dr. Cary Savitch, a Ventura infectious-disease specialist, said chronic Lyme is real. But diagnoses are complicated by lab tests that can produce false positives.

If a doctor tells a patient his or her symptoms are inconsistent with Lyme or that the disease is more rare in California than on the East Coast, the patient often becomes angry, Savitch said.

"They're desperate for the answer they want to hear," he said, adding that most of the cases on the West Coast are false positives and unrelated to active Lyme.

Green said doctors often miss Lyme disease. She said it can unleash what she calls stealth pathogens that evade antibiotics. She described the medical divide over chronic Lyme as a combat zone.

"I would say the prevalent attitude is that it doesn't exist," Green said, adding that doctors often overlook Lyme and instead give patients antidepressants and send them to therapy.

STRIVING FOR NORMAL

Bradley thinks her therapy is working, largely because she's relying on alternative medicine.

"I've gone 13 years with traditional medicine," she said, "and at one or more times in my life, they've told me I was crazy, they made things worse or didn't help at all."

Her goal is remission. She wants to surf, have a job, marry and raise a family. She's not sure anyone is "normal." Still, she wants to move closer to that standard.

"To me, reaching normal would be to be able to get up every morning and know I can reach the goal I set for the day without being hindered by any illness."

Lyme resources -- For more information, visit:

Basics: http://www.ilads.org/lyme/about-lyme.php [http://www.ilads.org/lyme/about-lyme.php]

Symptoms: http://www.cdc.gov/lyme/signs_symptoms/ [http://www.cdc.gov/lyme/signs_symptoms/]

Tick surveillance: http://bit.ly/1rSiOyk [http://bit.ly/1rSiOyk]

Prevention: http://www.cdc.gov/features/lymedisease/ [http://www.cdc.gov/features/lymedisease/]

Documentary: http://www.underourskin.com [http://www.underourskin.com/]

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