08182017Fri
Last updateWed, 16 Aug 2017 5pm

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In the 'Lyme' light: Local residents struggle with symptoms of debilitating disease

Photo Elliott Burr/Town Crier Los Altos Hills resident Tracey Stewart contracted Lyme disease 17 years ago.

The scenic hillsides of the area beckon local residents to partake in myriad outdoor activities, but an adventure in the woodlands can be devastating if precautions are not taken to prevent tick bites, which can cause Lyme disease. If not treated immediately and adequately, Lyme disease can cripple its victims’ lifestyles and rob them of their energy and passions.

Los Altos Hills resident Tracey Stewart, 57, awoke one morning 17 years ago with a tick on her neck but no rash. Her symptoms started soon afterward and became progressively worse.

“I was struck with chronic fatigue a year later,” Stewart said.

Although she continued to work in high-tech through the 1990s, Stewart said she suffered from short-term memory loss, brain fog and heart palpitations.

 

 

 

Currently in her third year of treatment for Lyme disease, Stewart advises tick-bite victims to “take immediate action, go to the nearest Lyme-literate doctor and get a six-week antibiotic treatment to start with.”

 

Lyme disease basics

The complex bacterial multisystem illness is transmitted by the Western black-legged tick found throughout California – including Los Altos and Los Altos Hills – and carried by deer, gray squirrels, wood rats and other rodents, birds and family pets.

The immature nymphal ticks – as small as poppy seeds and hard to spot – are often found in leaves and at the base of trees, while adult ticks are found on the tips of grasses and shrubs.

Visitors to oak woodland areas – such as Rancho San Antonio Open Space Preserve – between March and July, if not sufficiently protected, are at risk of being bitten by a deer tick, according to Dr. Christine Green of Los Altos.

“I’ve treated thousands of Lyme cases since 1989,” Green said. “Most people who get Lyme get well if treated immediately.”

Green said early signs of infection may include a bull’s-eye rash around the bite and flulike symptoms, including fever, muscle aches, headaches and extreme fatigue. If left untreated, she warned, Lyme disease could invade multiple organs of the body, including the brain and nervous system.

It’s crucial to check for ticks after spending time outdoors. The tick should be pulled from the skin gently using tweezers and taken to a county clinic for testing.

“Symptoms and the treatment depend on the amount of time the tick remains on the person,” Green said.

Not much was known about the disease when it was discovered in the town after which it was named, Lyme, Conn., a few decades ago. Many local victims and doctors are still in the dark about the importance of prompt medical attention and treatment methods, mistakenly believing that Lyme disease isn’t a problem in California.

 

Lyme disease treatment

Doctors who treat Lyme disease are trained to listen to patients’ stories, assess their symptoms and monitor the disease through periodic blood tests.

“I have my good and my bad days,” Stewart said. “The treatment’s pretty good but very tricky, as everyone’s immune system is different.”

Stewart said the disease can completely tear a person apart.

Los Altos resident Miriam Daiss-Fechner, 19, can attest to that. Instead of stressing over teenage woes such as school and dating, Daiss-Fechner can barely make it out of bed and struggles with daily tasks like eating and sleeping. Her decade-long struggle with Lyme disease took her out of school for three years and keeps her from accomplishing daily chores.

“Getting out of bed is a challenge for me,” Daiss-Fechner said. “Every single day is different.”

The problems started approximately nine years ago with a tick bite to the back of Daiss-Fechner’s head, according to her mother, Annegret Daiss.

“The tick was engorged in her scalp for three or four days,” Daiss said of her daughter. “But at that time, the doctor said California does not have Lyme and so wouldn’t treat for Lyme.”

Inadequate treatment of the bite resulted in sapped energy, brain fog and memory loss through eighth grade, Daiss-Fechner said. Her will and determination compelled her to keep up with schoolwork and activities.

“I pushed myself really, really hard,” Daiss-Fechner said. “I worked 7 a.m. to 7 p.m. days with schoolwork and playing volleyball.”

With a slow immune system caused by Lyme disease, Daiss-Fechner fell seriously ill with a bad case of salmonella her freshman year of high school. She has been home-schooled since then, her mother said. Daiss-Fechner gave up the activities that she loved – having fun outdoors and playing volleyball.

Daiss-Fechner’s family continues to cope with her struggle to combat the disease, managing many medications and treatment methods. In addition to the conventional antibiotic treatment, the teenager undergoes acupuncture sessions and a Bio-Photon procedure – recommended by a German doctor – which helps rejuvenate her good cells and keep her energy level up.

“I have three different doctors on my team who help me,” Daiss-Fechner said.

Assistance from doctors and her family has encouraged Daiss-Fechner to look forward to her future. Enrolling in an adult education center allowed her the flexibility she needed to complete her high school requirements and graduate. She hopes to matriculate to Cabrillo College in Santa Cruz in the fall.

 

Controversy surrounding Lyme disease

After a flulike illness spread among children in and around the town of Lyme, Conn., the mysterious symptoms and accompanying disease became known as Lyme disease. Although it has been identified since the 1970s, the disease remains controversial as far as diagnosis and treatment are concerned, based on the experiences of Lyme disease sufferers, especially those on the West Coast.

Cathy Swang, 57, now a student at Foothill College, used to be a high-tech consultant, but she began experiencing splitting headaches and severe joint pain seven years ago that affected her ability to function in the workplace.

Although she tested positive for three of the Lyme markers, according to Centers for Disease Control and Prevention guidelines, her doctor told her she did not have Lyme disease.

Swang spent nearly $200,000 of her own money on uncovered medical bills for treatment but still suffers from brain fog and memory loss. Unable to work full time for the past seven years, she said she decided to return to school and take art classes at Foothill.

Often the diagnoses are based on inaccurate blood tests and an outdated list of symptoms, according to Kris Newby, a Lyme disease victim and producer of a documentary film, “Under Our Skin,” screened at Foothill College last month. The film offers a compelling look not only at the science and politics of the disease, but also tells the personal stories of those whose lives have been affected and nearly destroyed.

Newby said the CDC authorized the Infectious Diseases Society of America – a group of academic researchers – to set guidelines for diagnosing Lyme disease. The Review Panel’s Final Report maintains that the disease is easy to cure with two to four weeks of antibiotics, and chronic infection and symptoms are rare or nonexistent. It cost Newby nearly $60,000 and consultations with 10 doctors to secure treatment.

The California Lyme Disease Association Web site states that out of the approximately 900 lab-positive Lyme disease cases reported to the California Department of Public Health in 2006, only 129 “official” cases, according to CDC criteria, were recorded by the state.

 

Prevention is the best cure

Education and research are ongoing, but “we’re still scratching the surface,” said Dorothy Leland, a member of the California Lyme Disease Association Board of Directors.

Leland said her daughter, 18, fell sick five years ago with Lyme disease and is recovering with continued treatment.

“The best scenario is not to get bitten by a tick,” Leland said.

For more information, visit www.lymedisease.org.

Contact Jana Seshadri at This email address is being protected from spambots. You need JavaScript enabled to view it..

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