Despite data, Lyme disease sufferers say infection has arrived in Utah
Laura Seitz, Deseret News
SALT LAKE CITY — A once vibrant 14-year-old is often too sick to get out of bed. Her health has been off and on like that for nearly two years.
Sometimes she's throwing up uncontrollably. Other times, pain resonates through her body. Most of the time she just feels general malaise. And after dozens of blood tests, medical visits and lab reports, no one is really sure what Alyssa Holt is suffering from.
Her mother and an out-of-state doctor, who is treating Alyssa, believe it has to be Lyme disease.
"It's affected her life in every way," Lori Holt said about her daughter.
Lyme disease is not common in Utah and historically it hasn't been much of a problem, according to JoDee Baker, an epidemiologist with the Utah Department of Health. She said there's no local evidence of deer ticks, which is what causes the most concern in Eastern states where Lyme disease is endemic.
But another kind of tick — the Western blacklegged tick — blamed for spreading the infectious disease throughout California, is quite possibly present in Utah. What remains unknown is how prevalent it is.
"There's no reason to say why ticks wouldn't migrate across the country like other species of animals and insects do," Baker said. "It's entirely possible we do have ticks here that would carry Lyme disease and we want to find them and we want to help people who do have these symptoms to feel better, to get better and to get the appropriate treatment."
Researchers with the health department and Utah State University are working on updating studies on Lyme disease in Utah. Baker said they are also testing ticks found in different places throughout the state. A report on those measures is due out later this year.
The health department, however, maintains its stance that no locally contracted cases of Lyme disease have been confirmed within the state for quite some time.
"Lyme disease testing is very tricky, it is very complicated," Baker said.
The last time state data were officially reported, in 2008 and 2009, six cases identified in Utah had been picked up by people traveling outside of the state, according to the health department. Locally contracted cases suspected during that same time have gone unconfirmed, due somewhat to conservative testing standards set by the U.S. Centers for Disease Control and Prevention.
Dr. Sankar Swaminathan, a professor of internal medicine at the University of Utah School of Medicine's Division of Infectious Disease, said that a diagnosis would only be confirmed if a patient — who has symptoms and a history that would warrant contraction of the disease — tests positive for two separate, but consecutive blood tests.
"The likelihood of contracting it here is really so small that I'd be suspicious," he said. "But I don't think, for the individual person, that it really matters where you caught it. It really matters that you have it and how you get treated."
Treatment for the disease depends on how far it has progressed, Swaminathan said.
In its early stages, the doctor said Lyme disease can be treated with relatively short courses of oral antibiotics. In more severe, later stages of the illness, intravenous antibiotics are sometimes administered, and in longer courses of therapy.
"It's usually not difficult to treat," Swaminathan said, adding that the elusive disease "is curable. In fact, it is almost always curable."
Trouble is, he said, nine out of 10 people don't really know what they're looking for.
"Every bit of me believes that this is what she has, that it is Lyme disease," Holt said, fighting back tears. "Because she was normal in every way before this."
Alyssa changed for the worse after attending a weeklong girls camp in the Heber Valley during June 2010. She came home with a tick attached to her hip. Holt said she helped to remove it and three weeks later, her daughter became ill with flu-like symptoms that were very persistent.
At least 20 doctors had different solutions for the Layton teen, the evidence of the effort kept in a 4-inch binder full of documents pertaining to her medical history.
"It's hard, because on a regular day, she still looks pretty good. She just feels awful," Holt said. An out-of-state doctor agreed to treat Alyssa.
Holt recently happened upon the Utah Lyme Disease Alliance, a group of victims and their family members who share ideas and an understanding of how to make life with Lyme disease more bearable.
After years of suffering and receipt of varying diagnoses, Steven Baugh also found the support group. He believes he must have contracted Lyme disease during a family history excursion in the Midwest nearly 17 years ago.
"My wife and I came back from visiting a cemetery and we were covered with ticks," he said. "I had bites from ticks and chiggers all over my body."
In the years since, doctors have tried antidepressants and other medications, in an attempt to alleviate the now-64-year-old man's pain, or perhaps convince him that he "must be crazy," Baugh said. He used to run marathons, founded the "Wasatch 100" even; but he can barely hike anymore. And he only does that "on a good day," he said.
"It is a tough disease and is very misunderstood by both the general public and many in the medical community," Baugh added.
Jenny Bezzant, Mrs. Utah 2010, who suffers from complications of Lyme disease contracted during an internship as a midwife in Russia in 1996, was moved to action after trying to find effective treatment for her own condition that nearly did her in.
"I really thought I was going to lose my life as I knew it, and nobody seemed to care," Bezzant said.
A naturopathic practitioner has been treating Bezzant with vitamins and supplements, which has kept her off strict and often lengthy and expensive courses of antibiotics — the typical treatment for the emergent symptoms of Lyme disease.
While she lacks her own official clinical diagnosis, Bezzant feels the pain and is adamant to find help for others suffering with similarly debilitating symptoms.
"It is a very serious illness," said Baker, who is a spokeswoman for the local alliance. "Lyme disease is getting a lot of attention all over the country, as more people are coming down with symptoms similar to those indicative of the disease."
Ticks also carry other infectious diseases, such as Colorado tick fever and Rocky Mountain spotted fever — both equally concerning as Lyme disease, she said.
As the country's most prevalent vector-borne illness, Lyme disease infects more than 35,000 people each year. If treated early enough, symptoms may disappear, but long-term effects are greater and more severe. According to the CDC, common misdiagnoses for Lyme disease include fibromyalgia, chronic fatigue, multiple sclerosis, lupus, Parkinson's and Alzheimer's, as well as attention-deficit disorder and autism.
Symptoms can manifest themselves neurologically, with memory issues, as well as intramuscularly, much like arthritis.
Mark Ossola, 13, who was bit with a tick while at Boy Scout camp in July 2009, said he now tires easily and can no longer do what he used to.
"It hurts like I've been hit," he said. He can only take about three minutes of a basketball game at a time.
Mark came home with a bull's-eye-shaped rash, typical for the beginning stages of Lyme disease. When a neighbor who is a physician dismissed it, the family did as well — until Mark started experiencing unusual pain throughout his body.
Since then, Ossola has been treated with multiple medications. His mother has settled on a treatment of supplements and is doing her best to educate the public on Lyme disease and the possibility of contracting it in Utah.
"If my son got bit at Camp Tracy, less than 50 miles from my home, I wonder how many other children are getting bit and are not getting treated," Susan Ossola said.
Regardless of where someone gets bit, Baker said prevention is the best cure. She said the summer months are when most bites occur.
Anyone expecting to be in the woods should wear light-colored clothing in order to see ticks better, tuck long pants into socks while outdoors, and use insect repellent that repels the invasive insect. Swaminathan even suggests dousing clothing with repellent containing permethrin.
"It's very effective," he said. "If a tick lands on something that's been sprayed with permethrin, it'll jump right off."
If a tick is suspected, Baker said to remove it with tweezers immediately — carefully and without smashing it. If flu-like symptoms should appear, it is a good idea to see a doctor, she said.
"It's a little scary but knowledge is important," Ossola said. "A lot of people are burned at a stove, but still cook and eat. Knowledge is a No. 1 key in preventing Lyme disease."
Ossola is president of the local Lyme disease alliance, which meets throughout the year to dispel myths and share information on the disease. More information about when it meets can be found online, at www.LymeUtah.com.
"It's like the big, 'Lyme'-green elephant in the room that nobody wants to talk about," Bezzant said. "But I want to talk about it. There are treatments. There are amazing things that can be done to regain your quality of life."
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