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.