Living with Lyme disease

When Taylor Gooderham was 13 years old, she was diagnosed with chronic Lyme disease. Since then, she has been prescribed multiple medications, but nothing seems to have cured her completely.

Now 19, she is used to forfeiting weeks, if not months, of her life to illness and bouts of severe pain.

“I’ve had days where it’s been bad and days where it’s been good,” Taylor said recently. “A lot of it has to do with me keeping myself busy and just not thinking about it.”

Chronic Lyme disease—as opposed to the traditionally accepted “acute Lyme disease”—is a controversial diagnosis. Most medical professionals believe that Lyme disease—which is caused by bacteria transmitted by infected ticks—is cured after several months of treatment with antibiotics. If symptoms such as lethargy, loss of appetite, aches, pain, and severe headache persist, doctors often point to other conditions, such as fibromyalgia or an autoimmune response.

However, there is a group of doctors in the medical community—albeit in the minority—who call themselves Lyme Literate Medical Doctors (LLMDs); they attribute chronic symptoms directly to “co-infections” that can accompany Lyme disease, and believe they should be treated with long-term doses of antibiotics.

When Taylor was 12 years old, she broke her back in two places after flipping an ATV during a trip to Oregon. She wore a back brace for six months. For a year, she was almost constantly sick with a sore throat and a high fever.

Taylor’s mother, Trini Gooderham, said that during her daughter’s freshman year in high school, Taylor was depressed and suffering from back pain. Taylor’s back eventually healed, but her other symptoms got worse. She suffered from viruses, sore throat, strep throat, and numbness in her legs.

Gooderham pulled her daughter out of school and enrolled her in an independent-study program so she could work from home—sitting at a desk multiple hours a day had become very painful.

Gooderham, who works as a medical assistant for a local doctor, said that at first she was convinced that Taylor’s symptoms were the result of the back injury. “But finally [Taylor] came to me and said, ‘Mom, there’s something wrong with me. … I’m just so tired. I can’t get out of bed. I’m really weak.’ ”

Taylor’s mother said she took her to see their family practitioner, who ran a number of tests, including for HIV, Epstein-Barr virus and Lyme disease. All of the tests came back negative except the Lyme disease test, which came back “equivocal,” or uncertain.

Gooderham said that though Taylor never found a tick bite or the “bull’s-eye” rash typical of Lyme disease, she wanted to rule out the possibility.

“At that point I called a doctor [Mitch Hoggard] in town whose wife has Lyme disease,” Gooderham said.

Hoggard sits on the board of the California Lyme Disease Association, an advocacy group for chronic Lyme-disease patients, and is an ardent supporter of the Lyme Literate movement. He advised Gooderham to take Taylor to see Dr. Steven J. Harris, a doctor in Redwood City who specializes in chronic Lyme disease.

When Harris concluded that Taylor had chronic Lyme disease, it was actually a big relief for her.

“I finally found someone who said, ‘You’re not crazy. You have [chronic Lyme disease]. And we have the blood test to prove it,’” said Taylor.

Taylor was started on several medications, including antibiotics that targeted the co-infections. The standards established by the Infectious Disease Society of America recommend no more than a 28-day course of antibiotics; treatments for chronic Lyme disease like the one Taylor was starting could last years.

Doctors who treat for chronic Lyme disease with long-term courses of antibiotics have been criticized by the established medical community. Harris’ secretary said that he declined to be interviewed because of the sensitive nature of the topic.

Dr. Paul G. Auwaerter, a professor at Johns Hopkins University in Baltimore and a member of the Infectious Disease Society of America (IDSA), belongs to the group that doesn’t believe chronic Lyme disease exists. He stated in a phone interview that there is no accepted medical test that substantiates the existence of chronic Lyme disease. He added that he does not believe in prescribing antibiotics for years at a time.

Phyllis Mervine, board chairwoman for the California Lyme Disease Association and a Lyme disease patient herself, believes however that chronic Lyme disease is a serious condition made worse by the establishment’s refusal to accept it as such. Speaking by phone from her home in Ukiah, she said patients should have the right to choose to pursue long-term treatment with antibiotics.

In California, people have access to chronic-Lyme-disease treatment if they can afford it. Gooderham said that her insurance company would cover her daughter’s medications for only a limited period of time; she had to start paying out of pocket after two weeks. Just one of the drugs Taylor was taking—Mepron—cost $1,200 a month. Eventually, Gooderham was able to find generic equivalents from Canada that were about half the price.

Taylor’s health improved with the medications, but she was having a hard time taking them consistently.

By the time she was 16, she was skipping so many doses that she got sick again.

“The problem was that the antibiotics were tearing her up,” said her mother. “She was throwing up all the time. She lost 40 pounds.”

Taylor went back to taking the medications, but not consistently. She said the treatments were preventing her from living a normal life. Earlier this year, she decided to stop taking medications altogether.

“I just wanted to take a year to be myself and be a normal kid,” said Taylor. “I never have gotten to be normal since high school, essentially.”

Taylor said she is struggling with whether to start treatment again. She’s currently enrolled for fall classes at Butte College. And she’s concerned she won’t be able to handle both school and the medication at the same time. But she’s also concerned that without treatment she’ll never be truly healthy.

“The last two weeks have been hard,” she said recently by phone. “The last week I’ve had some of the worst joint pain, and achy pains all over. But if you call me next week, I might tell you a different story. It’s frustrating, but I just take it one day at a time.”