Wendy Adams – Lyme Disease
After a weekend hike in the grassy, woody area near their northern California home, Wendy Adams’ twin daughters know the drill. The 11-year-olds head straight to the laundry room, not flinching as Wendy inspects them from hair to toes. Once mom gives the ok, the girls jump in the shower and rinse off.
“Hyper-vigilant,” some might say. But Wendy’s learned the hard way.
Found in 65 countries and throughout the United States, Lyme disease is difficult to diagnose, life-altering to experience, and problematic to treat. Humans are infected through the bite of a black-legged tick the size of a poppy seed. Many think the disease is hard to get and easy to cure. Not so. And its numbers are increasing.
For five years, Wendy’s world revolved around doctor visits, lab and test results, and confusing medical issues. She complained of headaches, fever, swollen joints, and burning hands and feet. “I couldn’t remember what I’d said to someone in a conversation five minutes ago,” Wendy remembers.
Photo courtesy of Wendy Adams
And the profound fatigue. “We all get tired,” says Wendy. “But this was an I can’t walk the dog and want to stay in bed all day,” sort of fatigue.” Understandably, 35-year-old Wendy was frightened and worried and frustrated.
In her desperate search for answers, Wendy visited with a doctor who happened to have recovered from Lyme disease. “I didn’t have the signature Lyme rash and scoffed at the doctor’s suggestion I may have contracted it,” says Wendy. Until she tested positive.
With a biotech background and degrees from Duke and UC Berkeley, Wendy often read research papers and dissected technical material. As she devoured everything she could find on the illness, “All my symptoms began to make sense,” she says.
Photo courtesy of Bay Area Lyme Foundation @Chiu lab, UCSF
A simple course of antibiotics is not enough to fight the infection. A robust immune system is also necessary. “Lyme fights against your immune system, it overwhelms your immune system,” explains Wendy. And this makes it hard to get well.
After three months of intravenous antibiotics and exhaustive years of diagnoses that disrupted life as she knew it, Wendy began her slow, long road to recovery. The crushing fatigue improved. Her joints reduced, and she could walk in a normal way again. Clear thinking returned.
Wendy can’t be sure when or where she contracted Lyme disease. She doesn’t remember a bite and never discovered a tick on her body or clothing. Like many of us, she traveled a great deal in her youth, and the disease exists almost everywhere. Hiking with the dogs in the Carmel Valley? Camping in an RV in the mountains near Lake Tahoe? Vacationing in Norway and Spain with her new husband?
Photo courtesy of Bay Area Lyme Foundation @2015 Berk
Fifteen years after her diagnosis, and “meds for a long time,” Wendy has no residual effects from the disease. Not everyone is as lucky. If untreated, Lyme disease can spread to the heart and nervous system. And be fatal.
The disease, like syphilis, is also transmittable during pregnancy. It’s interesting to note the disease in children often presents as behavioral problems or learning disorders.
As far as researchers know, a horse or dog or cat cannot transfer Lyme disease to a person. But the ticks can hitch a ride on a pet, meander into your home, and then bite you.
And the disease is complicated. Many doctors don’t see a lot of Lyme cases, so the infection is not a part of their diagnostic radar. Various strains of the disease require different drug treatments. Some ticks have more than one pathogen (virus, bacterium, microorganism) in them and pass along more than one illness simultaneously.
Bottom line—try not to get bitten by a tick.
So, how DO we protect ourselves when hiking, gardening, camping, or fishing?
Wendy, and the Bay Area Lyme Foundation, advise:
- Wear long pants and socks—preferably treated with Permethrin—to repel ticks. Tuck pants into socks.
- Use sprays with Deet or Picaridin on exposed skin.
- After being outdoors, inspect the body and hair for the tiny ticks.
- Toss clothing in the dryer, on high heat, for ten minutes.
- Rinse off in the shower as soon as possible.
Nowadays, Wendy leads the research grant program for the Bay Area Lyme Foundation in Portola Valley—horse country with rolling hills, superb weather, and the perfect environment for ticks.
Photo courtesy of Bay Area Lyme Foundation
Bay Area Lyme’s focus is on prevention and awareness of Lyme and developing better diagnostics and treatments. Wendy works with researchers to bring new ideas to Lyme research and to educate the greater community about tick-borne infections.
In matters of this misunderstood illness, often misdiagnosed as chronic fatigue syndrome or fibromyalgia, we need to be vigilant, like Wendy.
“If you’ve been out in nature, and start to feel poorly, request a test,” Wendy says.
For more detailed information, and instructions on removing a tick from your skin, refer to the Bay Area Lyme Foundation website.
This is such a powerful story, Pam! Lyme disease is probably one of the most under diagnosed conditions of our day. People need to understand they have the right to insist their doctors screen for this, otherwise most won’t even entertain it as a possibility. Be your own advocate.