Lyme disease patient surrounded by a web of researchers.

Detangling the Mystery

Haas and Berkeley alumni are at the forefront of the fight against Lyme Disease

Soon after earning her MBA from Haas in 1997, Wendy Adams fell ill. It started with relentless joint pain and fatigue. “I couldn’t walk my dog without being exhausted and on the couch for the rest of the day,” Adams says. Her doctor treated her for Hashimoto’s disease, an autoimmune disorder that runs in Adams’ family and can be treated with medication.

But the medicine didn’t work. Her symptoms worsened—and spread to her brain.

“I was having problems finding words,” Adams says. “I couldn’t remember the name of somebody I knew very well. People would say ‘Where do you want to go for dinner?’ and I’d have them repeat it four or five times before I got the gist of what they said.”

Adams saw other doctors, but none could pinpoint her ailment. The rub was that Adams led business development for biotech companies seeking treatments for serious conditions, yet no one could offer insight. She suffered for years until Adams’ fertility doctor, who herself had Lyme disease, finally solved the mystery and properly diagnosed Adams with Lyme, a disease spread via tick bites, in 2004.

Wendy Adams, MBA 97
Wendy Adams, MBA 97

According to the Centers for Disease Control and Prevention, some 300,000 people are diagnosed each year with Lyme disease—nearly 9% more than are diagnosed with invasive breast cancer.

If found early, Lyme disease is usually treatable and curable. Left unchecked, it can spread to and affect any part of the body: the brain and nervous system, heart and circulation, digestion, reproductive system, skin, and muscles and joints. Once chronic, Lyme proves difficult to treat, seriously debilitating patients and lowering quality of life.

As Adams found out, she was not alone suffering through years of misdiagnoses, and she vowed to help find a better way to diagnose Lyme. “Having a disease and getting the wrong answers time after time is enraging and then motivating,” she says. What she discovered was a serious dearth of federal funding for Lyme disease research. The National Institutes of Health spend 20% more to study West Nile virus than they do Lyme disease, even though the number of people diagnosed each year with Lyme disease is 113 times greater than those diagnosed with West Nile virus, a mosquito- borne disease.

Undeterred, Adams has turned her motivation into action, collaborating with other Berkeley alumni along the way to change the narrative of Lyme disease—one that promises new treatments and research pathways toward a cure.

LYME BASICS

Named after the Connecticut town where the disease showed up on scientists’ radars back in 1975, Lyme disease is usually transmitted to humans by a young deer tick (in California the culprits are western blacklegged ticks) infected with the bacterium Borrelia burgdorferi, which ticks typically get from rodents but also from birds and small mammals. The tick then bites humans (often when they’re standing in a wooded or grassy area), releasing the bacterium into the bloodstream.

Lyme actually started in three locations in the 1970s: Connecticut, Minnesota, and Northern California, says Dr. John Aucott, BA 80 (molecular biology), who directs the Johns Hopkins Lyme Disease Clinical Research Center. “Over time, those three original hotspots have been expanding as the ecology changes.” Now, Lyme disease has been reported in all states and 65 countries.

Once Lyme disease is in your blood, a correct diagnosis becomes tricky as the symptoms of Lyme can mimic other medical conditions (chronic fatigue syndrome, fibromyalgia, and multiple sclerosis are some examples). While many associate Lyme disease with a bull’s-eye-shaped rash at the bite site, only some patients present with that.

And the tests for Lyme are not exact. The reason, says Aucott, is that Lyme’s bacterium in effecthides in the body, popping up then disappearing randomly, making it harder to detect. “You can’t culture it like you can regular bacteria,” Aucott says. “We never know for sure that the bacterium is there and when it’s gone.”

Being able to effectively diagnose Lyme, says Adams, is the linchpin to curing the disease. “Without a good diagnostic, you can’t treat early enough to prevent chronic illness in some patients,” she says.

BANKING ON A CURE

After she was properly diagnosed, Adams spent several years experimenting with various medications, finally landing on a blend of pharmaceutical drugs, antibiotics, and medicinal herbs. She’s been symptom-free for eight years.

During her recovery, she sought out others affected by Lyme and found five women who eventually launched the Bay Area Lyme Foundation (BAL) to make Lyme disease easy to diagnose and simple to cure. Adams joined them. “My experience in drug development and health care rounded out the expertise of the group, most of whom came from tech,” says Adams, who spent 20 years in biotech and worked on four FDA-approved products.

Man working in a lab
Lyme infections are on the rise, but so is funding—albeit slowly. Late last year, Congress passed a spending bill that included the Kay Hagan Tick Act that will provide $150 million to fight tick diseases.

BAL funds research to find more effective treatments and diagnostics. Adams is the research grant director. “Chief among my duties is to find new promising research avenues in other disease areas and bring them to Lyme disease,” she says. She’s also a skilled fundraiser and expert at forging partnerships to help Lyme patients everywhere.

She connected with Aucott, for example, to serve on BAL’s scientific advisory board and BAL, in turn, helped fund Aucott’s research biobank. Aucott is part of a landmark nationwide study examining the impact of Lyme disease on longterm health outcomes. He established a biobank at Johns Hopkins 15 years ago to collect blood samples from patients over a two-year span and track the infection before and after treatment.

Aucott then provided invaluable counsel when BAL was creating its own biobank of blood, urine, and tissue samples from Lyme disease patients to provide to researchers seeking medical breakthroughs for Lyme and other tick-borne ailments.

The result—the Lyme Disease Biobank Foundation, which Adams co-founded—is one of only three active biobanks in the country. “We work synergistically with John’s biobank,” Adams explains. “John has well-defined patients and he follows them over time. Our samples come from different geographic regions and are more of a snapshot. Both collections facilitate research for better diagnostics.”

Having a biobank increases research interest, say Adams. More than 900 samples are currently available to dozens of active research projects that investigate, for example, different strains of bacteria causing Lyme.

CAL COLLABORATIONS

As Adams works to make BAL a leader in the fight against Lyme disease, she’s been fortunate that top Lyme experts, like Aucott, are themselves Berkeley alumni, offering powerful collaborations.

Dr. Charles Chiu, BS 93 (electrical engineering and computer science), is a professor at UCSF in its Division of Infectious Diseases and director of the UCSF-Abbott Viral Diagnostics and Discovery Center. Chiu, a member of BAL’s scientific advisory board, is using samples from the Lyme Disease Biobank to find a reliable way to diagnose Lyme and other tick-borne infections and to understand who will recover with treatment or not and why. He’s discovered, for example, differences in the way RNA is copied in Lyme patients.

Prof. Emeritus Robert Lane, BA 66 (psychology), PhD 74 (entomology), who taught medical entomology at Berkeley from 1984 to 2010, was the first West Coast expert on ticks and has served on BAL’s scientific advisory board. Before BAL was formed, Adams reached out to Lane with questions about Lyme. Lane, along with other UC Berkeley researchers, discovered various wildlife that can transmit the Borrelia burgdorferi bacterium to ticks. He also discovered that when infected nymphal ticks feed on western fence lizards, the nymphs are cleansed of their Lyme disease bacterial burdens by immune factors in lizard blood. The finding may help target treatments.

Collaborating across disciplines to find solutions to improve patients’ lives is precisely why Berkeley Haas initiated a Biology + Business dual major program with the Department of Molecular & Cell Biology last year. The program is training students to merge scientific inquiry with commercialization— like using a nonprofit funding model (BAL) to accelerate scientific advances.

“The Cal background taught us that a diversity of opinion is helpful but that we all have to row in the same direction to help patients with tick-borne diseases,” says Adams. HAAS

Back
Read the latest campus information on coronavirus (COVID-19) here →