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Lyme disease: The hidden epidemic

jjohnston@thetribunenews.com

It’s an irony not lost on those who were once physically fit that they’re now so wracked with any number of illnesses that even menial chores and tasks can leave them bed-ridden for days at a time.

We’re talking Lyme disease, an insidious crippler that attacks the immune system and can be transmitted by the bite of a tick nymph no larger than a poppy seed.

Last May, in declaring May as “Lyme Disease Awareness Month,” county supervisors noted that the invasive nature of the disease can lead to financial hardship, job loss, broken families, increasing numbers of people on disability or welfare and even death. Supervisor Frank Mecham gave a moving account of how the disease affected his daughter and their family.

If you haven’t heard about Lyme disease, you’re not alone; it has been called the silent or hidden epidemic. Carried by the western black-legged tick, it’s now found in 56 out of 58 California counties some 30 years after it was discovered in Lyme, Conn.

Yet, if there’s an upside to this disease, which can attack joints, muscles, lungs and the heart and brain, it’s that Lyme is preventable. And, if it’s caught early — like within the first year — and treated with a regimen of antibiotics, recovery and cure are excellent.

In many cases, the bite leaves a distinctive bull’s-eye rash, but that isn’t always the case. And onset can be as innocent-seeming as a case of the flu.

If it’s not diagnosed and treated early enough, the disease becomes chronic, disabling individuals with dozens of symptoms. Most exasperating of all, it’s a disease that’s difficult to diagnose to the untrained eye, and long-term treatment generally isn’t covered under insurance plans.

Amanda Bern was a scientist living in Santa Cruz when she was bitten in 2005.

“Initially, I was hospitalized for five days — no one knew what was wrong,” she said. “After two years and about 20 doctors, I was finally told I had Lyme and Babesa, another tick infection similar to malaria.”

She began the antibiotic regime and many of her symptoms disappeared after five months, although her neck pain remained. “I developed degenerative disc disease for ‘unknown reasons,’ ” she said.

Like it is for many fellow sufferers, her road to diagnosis was potholed. In her quest to pinpoint her ailments, a doctor who wasn’t up on Lyme recommended a cortisone shot, which spread the disease to other parts of her body.

“People with Lyme are sometimes diagnosed with autoimmune disorders,” she explained, “and the treatment for those often involve immune suppressive therapy, which is the worst thing you can do if you have an infection.”

Because of the time lag in diagnosis, and having an insurance policy that doesn’t cover Lyme, Bern has had to save up for expensive IV antibiotic treatments. A couple of members of the San Luis Obispo support group had IV ports embedded for just such ongoing treatment.

Bern is especially frustrated by a medical community that insists persistent Lyme infection does not exist, that current testing is reliable and that 21 days of antibiotics will always cure you. But there is a substantial body of research showing all of these to be untrue, she said.

(The Infectious Disease Society of America has both sides of the argument at its website, http://idsociety.org/Content.aspx?id=15026.)

Another frustrating factor cited by the group’s members is the underreporting of the disease.

For example, Bern said, “in 2007, just one lab reported 1,137 California residents tested positive for Lyme. But the state Department of Health reports only 107 residents contracted the disease that year.” Data from the San Luis Obispo County Health Department notes that only 26 cases were reported from 2000 to 2010.

According to the Centers for Disease Control and Prevention, 38,000 cases were reported nationwide in 2009; it estimates that 90 percent of Lyme disease cases were not reported. If true, that means that 380,000 people contracted Lyme in 2009 alone.

Understandably, Bern and her support group are flustered with the medical community, as well as the pharmaceutical and insurance industries, and aren’t afraid to vent that frustration.

Many Lyme sufferers in the county go to Thousand Oaks or the Bay Area to be treated by what they call “Lyme-literate doctors.” Locally, doctors Todd Thoring and Peter Muran fill that bill. A list of Lyme-literate doctors can be found at www.lymedisease.org.

“About one-half of our support group members believe they were infected in our county or nearby,” Marla Lipshin said. “The average time from onset of symptoms to diagnosis was over seven years.”

“In the past year,” she added, “I know of people who were bitten at San Luis Mountain, rural Atascadero and Santa Margarita and Lopez lakes. Because they knew somebody with Lyme disease, they were directed where to go to get proper treatment and are doing well today.

“We want to get the word out that Lyme disease does exist in San Luis Obispo County.”

How to prevent lyme disease

Perform a thorough tick check after being in a tick habitat.

Wear light-colored clothes.

Tuck your pants into your socks.

Put your clothes in the dryer for at least 10 minutes to kill ticks.

DEET for the skin is a repellant; however, the best tick repellants are products containing Permethrin, which is applied to clothing rather than skin. Hiking and mountaineering shops on the Central Coast carry Permethrin.

Lyme disease information

For more information onLyme disease,check the California Lyme Disease Association’s website at www.lymedisease.org/lyme101/ticks/about_ticks.html.

Also, the award-winning docu-mentary on Lyme, “Under Our Skin,” will be shown on PBS station KQED at noon Sunday.

Coming next week:

Ginny’s story; Lyme Part II.

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