Lyme disease leaves victims frustrated, searching for answers

It started with what seemed like the flu last Valentine's Day, with 9-year-old Luccia Montiel throwing up on the way home from school.

She got better, but a few days later she was struck again with flu-like symptoms - a nasty head cold, bad cough, her calves hurt and she couldn't walk. When that was over, she had her first manic episode, unable to stop laughing and crying.

In the coming days, the normally active and bright girl grew more tired. She broke out in hives, complained of neck pain and stiffness, spinal pain. A nurse practitioner tested for mono and the Epstein-Barr virus, and ruled out meningitis after a physical exam.

By March 7, she could barely walk, started crawling and complained of electric shocks up and down her back. A general practitioner gave her a thyroid test and the Western blot test for Lyme disease. The Lyme test came up negative - by western medicine standards - but Luccia continued to have symptoms associated with Lyme.

Luccia's mother and grandmother would eventually reach beyond the world of conventional western medicine and seek the help of an osteopathic doctor who specializes in Lyme and put the girl on antibiotics. The family must pay for the treatment on their own, because their health insurer only recognizes diagnostic testing standards recommended by the federal Centers for Disease Control and Prevention.

Those standards are too strict, said Luccia's grandmother Tamara Zablocki, who lives in Jenner with the girl and her mother, Jennifer Sobrero, a speech therapist who works with children.

“The bar has been set in such a position that huge amounts of people, and specifically children, fall through the cracks and are misdiagnosed or undiagnosed,” Zablocki said. “Some of them suffer unrepairable damage. That is a cruel treatment of our future generation.”

The question of whether someone has Lyme disease can run into murky medical territory that pits western medicine against naturopathic medicine, in part because there is no specific test or symptom that designates the infection with 100 percent accuracy. One side of the argument says Lyme is under-diagnosed, while the other claims that alternative medicine is over-diagnosing the illness.

But the one thing both sides agree upon is that it exists and, with the peak of the North Coast tick season now in full swing, steps should be taken to avoid Lyme infection.

Record rains last winter have created favorable conditions for tick habitat in Sonoma County, raising concerns among health care professionals that tick-borne illnesses such as Lyme disease could increase this year. The greatest threat is in spring and early summer, the peak of tick season. Ticks are vulnerable to dehydration and much of the population can die off if the insects don't get enough water in their habitat, said Dr. Gary Green, head of infectious disease at Kaiser Santa Rosa Medical Center.

“There's enough reason to be careful about tick prevention this year,” Green said.

But Green tempers his warning with data that shows the risk of Lyme disease is much lower in the northwestern coastal regions, including Sonoma County, than it is in New England. The reason is complex and has to do with different tick species, their habitat, life cycle stages and their preferred hosts.

Still, health officials say simple precautions should be taken this summer and a little bit of knowledge could go a long way toward avoiding tick-related infections.

In Northern California, the tick that transmits Lyme disease - the western blacklegged tick - is more likely to carry the Lyme disease bacterium in its gut during its immature “nymph” stage, when it is about the size of a poppy seed and more difficult to notice.

“It underscores the need for us all, when we're out enjoying our wonderful county, to prevent tick bites,” said Karen Holbrook, Sonoma County deputy health officer.

Holbrook recommended people wear long pants and light-colored clothing that makes it easier to notice the dark-colored arthropods, which must feed on the blood of their host to survive. Other precautions include spraying your clothing with permethrin insecticide; using an insect repellent on your skin containing at least 20 percent DEET; and showering soon after returning from areas where ticks abound.

Although tick activity is high in the spring and early summer, ticks are active yearlong, Holbrook said. County officials said Lyme disease is endemic in Sonoma County, with 81 cases between 2005 and 2014, which meets the surveillance case definition under CDC standards.

That figure, however, is a “gross underrepresentation” of the number of Lyme and associated diseases in the county, said Elizabeth Large, a naturopathic physician with Eric Gordon Medical Associates, a Santa Rosa-based practice that specializes in treating chronic disorders such as Lyme disease, arthritis and chronic fatigue syndrome.

Based on the volume of patients seen by her practice, Large said, the number of Lyme infections and associated co-infections during that 10-year period is probably in “the thousands.”

She said determining whether someone has Lyme disease is based on a clinical diagnosis, one that takes into account the totality of patients' symptoms and their medical history. Earlier this week, Large, who has expertise in pediatric Lyme, saw Luccia for the first time at her medical office in northeast Santa Rosa. Luccia's grandmother and mother discussed the once-active girl's medical history, including her bout with the illness and the battery of tests and treatments she's undergone since February.

“She sometimes can't tell you what she's had for breakfast,” Zablocki said.

Luccia was bit in the head by a tick in kindergarten in 2013, but the tick was not properly removed. Its body was removed, but the head was left attached, Zablocki said, adding that the girl was also bit by a tick last summer but that tick was removed.

In most cases, the western blacklegged tick must be attached for 36 to 48 hours before the Lyme disease bacterium can be transmitted, according to the CDC. The disease is caused by the bacterium Borrelia burgdorferi and typical symptoms include fever, headache, fatigue and a characteristic skin rash that looks like a bullseye.

Untreated, the infection can spread to joints, the nervous system and the heart. The CDC says Lyme disease is diagnosed through symptoms, the appearance of such things as a rash and a history of exposure to infected ticks.

After her examination of Luccia, Large said the girl's varying symptoms pointed to both Lyme and a different infection caused by the bacterium Bartonella, and she changed up the mix of antibiotics.

“Treating these infections is like working in the dark,” said Large, adding that ticks can cause multiple infections. “You're looking to find the light switch. Hopefully, the more you treat, you start to get a clearer picture of the infections the patient has.”

For Becky Sani of Cazadero, the difficulty in getting a “western medicine diagnosis” of Lyme disease for her 14-year-old daughter, Kassidy, has meant paying for the girl's treatment out-of-pocket. But more importantly, she said, the clash of two medical worlds has meant watching Kassidy go through excruciating pain and lose much of the vitality that fueled her academic and athletic aspirations.

“There should be other ways of testing for this,” Sani said. “She's got every symptom that's in the books for Lyme disease and yet she doesn't test positive by CDC standards.”

Sani said Kassidy, a ninth-grader at El Molino High School who is now being home-schooled, was bitten by a tick four years ago. Sani said she believes the Lyme bacteria “has been in her body multiplying” since that time and was triggered last November when she received a concussion while playing volleyball.

Her illness first started while she was running a mile for a physical education class and experienced stabbing abdominal pains for two days. She was later taken to the emergency department at Sutter Santa Rosa Regional Hospital, and every month since then her symptoms have grown in number.

These symptoms include chronic fatigue, muscle aches, shortness of breath, joint aches and migraines. Sani said Kassidy also has been having neurological symptoms such as an inability to focus, where she's unable to remember the words in a sentence and has to read it three or four times.

“We got to a point two months ago where she couldn't go to school anymore,” Sani said.

Sani echoed Zablocki's grievance about the difficulty in getting a positive Lyme test.

“The CDC sets standards that are very hard to get a positive Lyme diagnosis,” she said. “We had to go to a naturopath, and insurance doesn't cover that.”

She said the first appointment was $650 an hour and the cost of getting the alternative IGeneX Lyme test was $1,100. This month, the family has spent $3,000 on supplements alone, Sani said.

Before she turned to alternative medicine, Sani said she tried what she calls “my western medicine road,” a frustrating path that included a Stanford rheumatologist and Stanford pain management and infectious disease specialists, all covered by insurance.

“The amount they have spent on her having MRIs and CAT scans, ultrasounds, specialists - it would have been tenfold cheaper to treat her for Lyme disease instead of looking for a disease that's not there,” Sani said.

You can reach Staff Writer Martin Espinoza at 707-521-5213 or martin.espinoza@pressdemocrat.com.