TOUCHED BY LYME: No Lyme in California?
Today I attended California's Lyme Disease Advisory Committee meeting in Sacramento. It's a group which advises the state health department on tick-borne disease issues. I made the following remarks to the committee during the public comment period.
Today I attended California’s Lyme Disease Advisory Committee meeting in Sacramento. It’s a group which advises the state health department on tick-borne disease issues. I made the following remarks to the committee during the public comment period.
I am the mother of a teenage daughter with Lyme disease. Early in my daughter’s illness, an important medical specialist told us she couldn’t possibly have Lyme disease—because there is no Lyme in Davis, where we live.
I’d wager every person in this audience has a story like this. Having symptoms dismissed by doctors because “there’s no Lyme in California” or “no Lyme around here” is frustratingly common. When I recently started blogging for the California Lyme Disease Association, I asked people to email me where they’d caught Lyme in this state.
I received more than 150 responses, including the following picture postcard places:
Golden Gate Park, Pt. Reyes National Seashore, Yosemite, Sequoia National Park, Muir Woods, Lassen National Park, Nisene Marks State Park, Mt. Diablo State Park, Folsom Lake, American River Parkway, Mammoth Lake, Sea Ranch, Big Bear Lake, Cuyamaca Mountains, Big Sur and Lake Tahoe.
Some people responded by county: Alpine, Humboldt, Siskiyou, Lake, Sonoma, Marin, Mendocino, San Mateo, San Diego, San Luis Obispo, Plumas, Placer, Tulare, Nevada, Orange, Santa Barbara, Santa Cruz, Sonoma, Los Angeles.
Other people replied by city: Calistoga, San Francisco, Healdsburg, Vista, Alamo, Grass Valley, Danville, Yucca Valley, Malibu, Auburn, Chico, Solana Beach, a vacant lot in Pasadena, at the corner of Covington Road & Parma Way in Los Altos.
Others mentioned what they were doing: Riding horses in the high desert of Anza, backpacking in the Sierra, building a fence in Cabazon, gardening in Fortuna, attending the pumpkin festival at Half Moon Bay. One was bitten by an infected tick while working at Avenal State Prison in Kings County. That person noted that a number of inmates got tick bites at about the same time.
One woman caught Lyme in her family’s backyard in Santa Clara County. 15 years later, her brother was bitten by an infected tick in the same backyard.
Several mothers said they had unwittingly passed Lyme to their children in the womb. One woman has four children who contracted Lyme this way.
Several people caught Lyme while traveling out of state: Minnesota, Michigan, the south of France. But they had to deal with effects of the disease after returning to California.
Where they got bitten is only part of the story. Throughout the state, people with Lyme are routinely told by medical personnel that they couldn’t possibly have Lyme disease, because there’s no Lyme disease in…whatever patch of real estate they happen to be standing in.
One last story: A woman on vacation from New York was bitten by a tick on a hiking trail in Santa Cruz. When she returned home, she felt sick and went to her doctor. Even though she told him she’d been bitten in California, the doctor said it couldn’t possibly be Lyme disease—because there’s no Lyme in New York City.
Contact the author at dleland@lymedisease.org.
My daughter has been clinically diagnosed with Lyme disease and put on supplements. After 5 years of seeing up to 20 different specialists including psychiatrists, kinesiologists, chiropracters, over 8 medical specialists, and counselors we found an alternative treatment that is working. She remains fragile but is in school part-time, has an active social life and is in her second school play. We have spent many thousands of dollars out of pocket as our insurance is Kaiser and they only saw her as a psychiatric case (anxiety and depression with possiblitiy of autoimmue deficiency). I never thought of her as "clinically" depressed but situationally depressed as she would be ono the couch for weeks at a time. The meds for depression did not help but worsened the situation.
My question is: is there any way to be reimbursed for past and ongoing expenses? She is still in treatment which costs an average of three hundred dollars a month. We have spent thousands getting to this point. The emotional turmoil of the medical professions denial is worth millions! Any information of cost reimbursements for HMO insured persons is appreciated!
I got it in Lake Tahoe at a mountain bike race. It’s not fun.