When life gives you Lyme

Briana Beaver almost died in the summer of 2012. Her health had declined over a period of years, and she was in so much pain she couldn’t eat. Admitted to Stanford Hospital, staff there didn’t know what was wrong. She weighed 79 pounds.

“My mom got in contact with a chiropractic neurologist who said it was all in my brain,” Beaver said during a recent interview. “He said, ‘We’d better get to work because she has three days to live.’”

Fast forward a few years and Beaver, now 27, is still seeing the same chiropractic neurologist and making weekly trips to San Francisco for treatment. But that treatment—which has gotten her back to a healthy weight (see “Back from the brink,” July 25, 2013)—hit a plateau last fall. That’s when her specialist recommended she get tested for Lyme disease. The results came back positive. Doctors suspect she’s had it her entire life.

“It gives the whole picture of what’s been going on my whole life, why my health has declined over time,” said Beaver, who also has cerebral palsy. “I’ve been ill since I was 9 or 10. Chronic Lyme can take time to set in and really break a person down.”

Lyme disease is unlike many diseases out there because its symptoms are varied and can mimic other health problems. It is most commonly caused by being bitten by a deer tick, but doctors believe if a woman is infected during pregnancy the disease can be passed on to her children, according to lymedisease.org, a nonprofit focusing on Lyme advocacy, education and research. That’s what doctors believe happened in Beaver’s case, she said.

“Lyme disease is a very complex disease and it affects everyone differently,” Beaver said. “And, like me, the majority of people have no idea they have it.”

Early symptoms include a flu-like illness, a rash around the bite spot and Bell’s palsy (which causes paralysis on one side of the face). If caught early, it’s treated with antibiotics and can lead to complete recovery. Some people do experience long-term symptoms like fatigue, and joint and muscle aches even after treatment, according to the Centers for Disease Control and Prevention, a condition referred to as post-treatment Lyme disease syndrome.

However, the existence of “chronic Lyme disease,” which Beaver has been diagnosed with, is controversial.

“If Lyme disease is not diagnosed and treated early, the Lyme spirochetes [bacteria] can spread and may go into hiding in your body,” according to lymedisease.org’s characterization of chronic Lyme. “Weeks, months or even years later you may have problems with your brain and nervous system, muscles and joints, heart and circulation, digestion, reproductive system, and skin.”

Other organizations, including the CDC, do not consider Lyme to be a chronic condition, instead arguing it can be cured with antibiotics.

“The term ‘chronic Lyme disease’ (CLD) has been used to describe people with different illnesses. While the term is sometimes used to describe illness in patients with Lyme disease, in many occasions it has been used to describe symptoms in people who have no evidence of a current or past infection …” reads the CDC website. “Because of the confusion in how the term CLD is employed, experts in this field do not support its use.”

Despite this controversy, Beaver and her physician, a specialist in San Francisco, believe she is affected by chronic Lyme. And Beaver isn’t letting her diagnosis get her down. Quite the opposite, actually—knowing what’s been causing her health issues has been reason for a sigh of relief. That’s not to say her battle with Lyme is over—far from it.

“It’s such a relief, and great validation,” she said. “I can’t even tell you how many years I’ve wondered, ‘How did I become this person and no one knows what this chaos is inside of me?’”

The road to recovery likely will be a long one, she said, but seeing the light at the end of the tunnel helps her stay positive. She still suffers any of several dozen side effects every day—from heart palpitations and shortness of breath to insomnia, chemical sensitivities and “brain fog.”

“Sometimes I have 80 to 90 different symptoms in one day,” she said. “It’s a rollercoaster all the time.”

One way she’s keeping busy is by starting a campaign called Take Back My Life. Her first item of business is holding a T-shirt design contest. Then she’ll sell the shirts online and, hopefully, at local stores.

“The proceeds will go to pay for my medical treatment,” Beaver explained. “But I also want to give some of the money to other Lyme-related organizations that help pay for other people’s medical treatment.”

Through it all, Beaver said she’s found strength in her community and in connecting with others who have walked in her shoes. She hopes her campaign will help educate people as well as connect other local Lyme sufferers and survivors.

“It’s a very overwhelming thing to navigate,” she said. “There’s an unspoken camaraderie of going through warfare, fighting for your life.”