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Stuart Johnson, Deseret News
Shanon Ballard of Spanish Fork has not been able to find treatment for her Lyme disease in Utah and travels to the East Coast for it.

SPANISH FORK — There's a price to pay when Shanon Ballard goes Christmas shopping, and it's much steeper than the exchange at the cash register.

Body tremors, slurred speech and exhaustion so severe she often spends most of the following day in bed are part of what she endures after a two-hour shopping experience. Unable to drive, she is always escorted on these increasingly rare excursions.

Pain is her constant companion.

Lyme disease — contracted from the bite of a tick no larger than a sesame seed — has ravaged her body for 15 years, Ballard said. But without the political clout of heart disease or HIV or breast cancer, people afflicted with what they believe is a chronic form of Lyme disease have no unified voice.

So when doctors tell them it's "all in your head" or insurance companies refuse to pay for long-term antibiotic treatment, Ballard and those like her either suffer in increasing pain and silence, or they seek out the few doctors willing to treat their condition.

For all her searching, Ballard couldn't find one along the Wasatch Front.

"I saw 10 to 15 different doctors," she said. "Their main diagnosis was, 'You're depressed.' They gave me Prozac and sent me on my way."

The symptoms of her illness have caused great distress that would be "depressing to anyone," said her sister-in-law, Ginny Johnson, noting Ballard had been previously diagnosed with both Crohn's disease and Parkinson's disease.

But both she and her family knew it wasn't simply a case of chronic depression.

As a registered nurse, Ballard had knowledge of and access to medical journals that allowed her to research her own condition. Following her diagnosis, she was treated for several weeks with antibiotics, which initially helped her improve.

"But I went downhill really fast after coming off it," she said.

Ballard tried short-term antibiotics again and contracted shingles last summer, which only intensified her pain and led to other, secondary complications.

As she continued seeking treatment and told several doctors of her symptoms and diagnosis, they said her case was too complex for them.

Ballard's loss of function has come in stages. It began with pain in her late teen years, followed by debilitating fatigue, digestive problems and, most recently, increasing loss of short-term memory.

In September, after her extended family members returned from a trip to Brazil, Ballard's condition had deteriorated even more.

"I think she scared everyone," Johnson said. "We hadn't seen the tremors before."

Earlier this year, as Ballard was researching Lyme disease, she came across a documentary film, "Under Our Skin: There's No Medicine for Someone Like You," which details the stories of several people whom specialists have diagnosed with chronic Lyme disease.

It details the political battle within the medical community over whether such a condition even exists — the Infectious Diseases Society of America issued guidelines in 2006 saying it does not — and how a few specialists who treat patients for it have been brought before state medical boards threatening to take away their medical licenses.

In the meantime, Ballard contacted Dr. Joseph Jemsek in South Carolina, one of the specialists featured in the documentary, who agreed to see her. During the first visit, he asked for a detailed account of her life, beginning with details of her childhood, she said.

"He wanted to know everything," Ballard said. "When I'd see other doctors, after about 10 minutes of talking, they were finished hearing from me and gave me Prozac."

Ballard said other patients who have all the symptoms of chronic Lyme disease have been similarly dismissed by so many doctors who seem unable or fearful of treating them that those who do treat patients now do so on a cash-only basis.

Many insurance companies have refused to pay for long-term antibiotic treatment for patients nationwide, and Ballard figures by the time her treatments with Jemsek are complete, the bill will total about $50,000.

Her husband works as a finish carpenter and general contractor, and to date, they've been able to handle the costs associated with her condition. But he's had medical problems of his own for nearly three months, making him unable to work.

At this point, Johnson said, Ballard's entire family is trying to raise the money to help with her treatment.

"I can't begin to tell you all the money we've spent to date, but now, all of our resources are exhausted," Ballard said.

As she remembers the long road of diagnosis after diagnosis and failed treatments over more than a dozen years, Ballard said she wants people to know the condition does exist — and that there is help available.

She believes there are many who are going through the long process she did to get a correct diagnosis, and she hopes that word of what she's been through may help some patients navigate the system a little better than she was able to.

Ballard would like the chance to continue being a mother to her three children, ages 11, 9 and 6, who have all grown up knowing their mom was different from other moms. Pent-up emotion comes to the surface as she speaks about them.

"They have been really great through all this, but there have been times when they worry I'll die," she said through tears.

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Between her children and her "fantastic husband," the family has largely been able to function as they pitch in to do the work Ballard would do if her health allowed it.

Yet as painful as it has been, the experience "has brought us closer together, and I wouldn't give it up for what we've all learned," she said.

Even so, "I'm sure glad there is hope now."

Utahns with questions about chronic Lyme disease can find more information at www.utahlyme.org.

e-mail: carrie@desnews.com

Editor's note: An account to help fund Shanon Ballard's medical treatment has been set up at Zions Bank in her name, and donations can be made at any Zions branch.