Lyme disease foundation started for Fresno woman who died from the tick-borne illness
Jody Hudson beams as she remembers her daughter playing every sport at her Fresno elementary school and running so fast she was called the "silver bullet" — but pain fleets across her face as she recounts the determination and strength her daughter showed in the last year of her life.
Alex Hudson died of a complication as a result of Lyme disease on March 24. She was 22.
It is very rare for someone to die of Lyme disease, but Alex developed Mast Cell Activation syndrome, an immunological condition that caused her body to have an allergic-like reaction to almost anything she ate or drank.
Jody, an operations director at Catholic Charities Diocese of Fresno, watched as her tomboy daughter — who had grown into a sensitive, caring teen whose favorite activity was making dinners for the homeless on Sunday night — dropped from 120 pounds to 59 pounds and became bedridden.
Alex never gave up, Jody says of her daughter. "She wanted to turn this around and beat this and be that miracle and be an inspiration to everyone else. Even up to her dying day she thought she was going to beat this."
Alex had vowed she would spread the word about the tick-borne disease, and now Jody is speaking for her. She has established the Alex Hudson Lyme Disease Foundation in her daughter's memory to raise awareness and to help people get proper testing.
Jody believes Alex got a tick bite at Shaver Lake during one of the summers the family spent there at a friend's cabin. Early on, she had swollen and painful joints, a symptom of Lyme disease, but it would be 10 years before a doctor in Southern California tested her for tick-borne diseases. It came back positive, Jody says.
No one suspected Lyme disease earlier because it's not on the radar of most California doctors, she says.
Lyme disease is mainly associated with states in the Northeast that are infested with the black-legged "deer" tick that carries the bacteria to infect people.
However, tick-borne diseases are rising in the Upper Midwest as well as in California, according to the federal Centers for Disease Control and Prevention.
According to a study this year by the CDC, 300,000 Americans get Lyme disease each year, but only about 35,000 cases are reported.
Lyme disease has been found in 56 of California's counties, according to the California Department of Public Health. In 2017, California had 86 confirmed cases of Lyme disease; and 55 of the people infected had not traveled outside California during the incubation period of the disease, the department says.
Many of the cases reported are in Northern California counties, but Tulare County had two cases in 2017 and Madera County had one case. Fresno County and Kings counties had no cases in 2017, but each had one case in 2016 and Tulare County had one case.
The western blacklegged tick, Ixodes pacificus, can transmit the bacteria that causes Lyme disease in people in California, the department says. But the tick can be difficult to detect. Both adult and nymph-stage ticks can bite people but the small nymphs, about the size of a poppy seed, are more likely to suck human blood.
Lynn Kimsey, an entomology professor at the University of California at Davis, says it remains more difficult to get Lyme disease in California than northeastern states. Hot weather decreases tick activity in California too, Kimsey says. But people should protect themselves from ticks and check themselves for bites after hiking or being in brush and wooded areas this spring and summer. "We have kind of lost that habit because people in California are so urban for the most part, they don't think of that."
Since Alex's diagnosis a year ago, Jody says she has heard from dozens of people in the central San Joaquin Valley who say Lyme disease has changed their lives and those of friends and loved ones. Their stories give her the strength to continue talking about Alex, she says. "The pain she endured and suffered, nobody should have to endure and suffer."
One of the people Jody has met is Jessica Devine, 43, of Clovis, who has been struggling with Lyme disease for five years, from a tick bite she too traced to Shaver Lake.
Devine says she discovered a tiny tick on her abdomen while she changed into pajamas. Within hours, she had flu-like symptoms and seizures. A bulls eye rash, which can be characteristic of Lyme disease but not always present, appeared about a day later, but Devine says doctors did not test or treat her for tick-borne disease.
It was four years before her sister suggested she be tested and she received treatment – but not before the disease had spread. Left untreated, Lyme disease can spread to the brain, heart and joints. Devine would forget the names of her children. She couldn't walk. "I was bedridden for months," she says. "I was pretty close to dying. I knew I didn't have much time left."
Devine is walking now and her memory has improved. But she is still recovering, and insurance does not cover her treatment, she says. "It costs me $50,000 a year out-of-pocket."
Her struggle with Lyme disease is only one of many in the Valley. She's a member of a Fresno Lyme disease support group, which has about 60 members, she says.
It's easy for Lyme disease to be "underdiagnosed," says Maria Diuk-Wasser, associate professor in the Department of Ecology, Evolution and Environmental Biology at Columbia University. Testing for Lyme disease is based on antibodies, which take about two weeks to develop, so sometimes people go to the doctor and test negative, who would test positive later, she says.
There is some controversy about the CDC-approved tests for Lyme disease that are covered by health insurance. Some advocates for patients recommend going to laboratories that specialize in testing for tick-borne diseases. Jody says Alex wanted people to have access to specialized testing that can be expensive. "That's really what her goal was – to help individuals get tested."
Lyme disease is easy to treat with antibiotics if it's caught early, says Nicole Baumgarth, a professor at the UC Davis Center for Comparative Medicine. "The longer antibiotic treatment is withheld or not given because of no diagnosis … the harder it seems to be able to get rid of the symptoms of the disease."
Unfortunately, many people are infected for a long time.
Alex likely had Lyme disease for a decade or longer, according to Jody. She had been healthy up until sixth grade, when a knee swelled during a basketball game and she had to be carried off the court. Jody thought her athletic daughter had just been overworking her body, but the joint problems got worse. A surgery on her right knee didn't help.
In January 2017, she had three emergency root canals that Hudson says never healed. "She was in pain 24/7."
Plans for Alex to attend the University of California at Los Angeles had to be put on hold. And finally in May 2017, a doctor diagnosed her with Lyme disease and with four co-infections, Jody says. The last year, her immune system had enough and she developed Mast Cell Activation. Almost anything she ate triggered a reaction, Jody says. "Her body was just on fire … this whole burning, tingling sensation, throat closure, heart palpitations."
Throughout the pain, Alex, relied on her Catholic faith.
About a month before Alex died, Jody says she told her daughter she would need to be able to communicate with her after her passing and asked how she could feel her presence. Alex said a bluebird had been showing up every day at 3 p.m. in their backyard, and that would be the sign.
Alex said the bluebird brought her comfort and told her mother: "It reminds me of God, and I know I have another day here."
Last week, as Jody sat in her living room, talking about Alex and her pledge to her daughter to increase awareness of Lyme disease, a bluebird flew by the window and perched on an angel fountain in the backyard.
Jody rubbed shivers from her arms.
"That's Alex. Wow, she is always present. I'm telling you. Wow. She's just putting her blessing on this interview. She's just wanting people to know. She wants this message to get out because it's so important."
Preventing tick bites
Avoid wooded and brushy areas with high grass and leaf litter.
Walk in the center of trails
Use repellent that contain 20 percent or more of DEET, picaridin or IR3535 on exposed skin for protection that lasts several hours
Use products that containing 0.5% permethrin on clothing and gear, such as boots, pants, socks and tents.
What to do to find and remove ticks
Bathe or shower as soon as possible after coming indoors.
Conduct a full-body tick check using a hand-held or full-length mirror to view all parts of your body. Parents should check children for ticks under arms, in and around ears, inside the belly button, behind the knees, between the legs, around the waist, and especially in their hair.
Examine gear and pets. Ticks can ride home on clothing and pets and attack to a person later.
Tumble dry clothes on high heat for 10 minutes to kill ticks on dry clothing.
Washing clothes should be done in hot water or if unable to use hot water, tumble dry on low heat for 90 minutes or high heat for 60 minutes. The clothes should be warm and completely dry.