Community & Society

LivLyme Foundation

by Rachel Engleberg

Twelve-year old Olivia Goodreau started the LivLyme Foundation in January 2017 after she was told that she would live with the debilitating symptoms of Lyme disease for the rest of her life — or until a cure is found.

To date, the foundation has raised $224,000 for children whose families cannot afford  medication and treatment for their Lyme disease. It also supports doctors and scientists in their efforts to find a cure.

Lyme disease is transmitted by tick bites. Ticks, some the size of poppy seeds, crawl onto their host, attach themselves to the skin and bite, injecting pathogens into the bloodstream. While Lyme disease is not endemic to Colorado, cases of the disease are growing at an alarming rate. The Centers of Disease Control and Prevention (CDC) estimates that more than three hundred thousand people contract Lyme disease in the U.S. every year. That’s ten percent more from what was previously reported.

Olivia most likely contracted Lyme disease when she was six-years old while vacationing with her family in Missouri. Like fifty percent of those who are diagnosed with Lyme disease, Olivia doesn’t remember being bitten by a tick, nor did she get a red “bulls-eye” rash, the telltale sign of Lyme disease. “People with the bulls-eye rash are the lucky ones,” Olivia told me when she and her mother, Holiday Goodreau, met me at a café in Cherry Creek.

They’re lucky, she explained, because if the infection is caught early and treated with antibiotics — doxycycline is the most common drug to combat Lyme — it is easily curable in most cases. If undetected, the bacteria can infiltrate the body and cause debilitating, long term health problems.

Olivia’s symptoms appeared months later when she returned to school for her second grade year at Graland. “At first I remember feeling really dizzy and then the blackouts came,” remembers Olivia. She started experiencing body aches, headaches, a tremor in her right hand, brain fog and terrifying black outs. Her second grade teacher suspected there was something terribly wrong. Over the next eighteen months, Olivia was examined by fifty doctors who put her through countless tests, including MRIs, cat scans, spinal taps, EKGs, EEGs, a liver biopsy, an upper and lower endoscopy and over one hundred blood draws.

Lyme disease, known as the “great imitator,” is notoriously difficult to diagnose. Its symptoms are general and diverse and often mimic many other conditions. At one point, Olivia was told she had Wilson’s disease, a genetic liver condition. Luckily, a DNA test revealed it was negative. Other doctors thought she might be making it all up.

A year and a half after Olivia’s first symptoms appeared, she visited her fifty-first doctor, (“The only female doctor she saw,” Olivia’s mom points out) who decided to test her for Lyme disease. The results were positive. Olivia was put on a 30-day dose of antibiotics and almost immediately started feeling better. “By the fifth day of being on the antibiotics, my mom said she saw the twinkle in my eye that had been missing for 18 months,” Olivia recounts on her website. “I felt much better and my 3rd grade teacher called my mom and said, ‘I just met Olivia for the first time, and she is really funny.’”

After she finished the month long course of antibiotics, Olivia’s symptoms resurfaced. Her parents searched for a doctor who specializes in Lyme disease and were fortunate to find Dr. Richard Horowitz, the medical director of the Hudson Valley Healing Arts Center in Hyde Park, New York and one of the most prominent Lyme specialists. Because of the high demand and years-long waitlist, he has since closed his practice to new patients.

In addition to Lyme, Dr. Horowitz also diagnosed Olivia with two co-diseases, bartonella and babesia. (Ticks carry up to forty co-diseases, many of which can be more debilitating than Lyme). He also identified other conditions, including liver and blood issues, among others, and prescribed a comprehensive course of treatment. Olivia now takes eighty-seven pills a day to manage her symptoms — a combination of antibiotics, an anti-malaria pill, blood pressure medication and “lots of gross supplement drops and probiotics.” She also recently started IVIg (intravenous immunoglobulin therapy) and a new Lyme protocol called Dapsone, an antibiotic that was first used to treat leprosy in the 1940s. Olivia feels better most of the time, but still has “Lyme days.” “I’ve been told a Lyme day is like having the worst hangover on top of the worst case of the flu,” describes Holiday. Olivia adds that on those days her back “feels like a piece of wood.”

Since the foundation launched in January, Olivia’s mother receives at least twenty emails and phone calls a week from families across the country searching for answers. “I always try to respond because I wish I had had somebody to talk to,” says Holiday. “The first thing I do is listen,” she adds. “It’s like talking to people with PTSD. I try to give them hope and encourage them to stay strong.”

In April, Olivia and her mom hosted the first annual LivLyme Foundation Gala. Over three hundred sixty people attended the event, including Dr. Horowitz, who was the keynote speaker. Guests were given slices of lime and asked to “take a bite out of lime,” as part of a national effort to raise awareness about Lyme disease. (After our meeting, Olivia and her mom were on their way to record Reggie Rivers and Vic Lomardi “taking a bite out of lime” to post on the LivLyme Foundation website, along with other celebrity shout outs). After the gala, Dr. Horowitz posted a message on social media: “Congratulations Olivia to your wonderful achievements, courage and compassion for other’s suffering. Hurry up and go to medical school so you can join me.”

Incidentally, over the summer, Olivia was offered an internship with Dr. Jayakumar Rajadas (“Dr. J” to Olivia), one of the Lyme scientists she features on her website, at his lab at Stanford School of Medicine.

“When most kids are going off to summer camp, Olivia’s going to tour Lyme research labs,” says Holiday.

“It’s my first internship at the age of twelve,” Olivia says proudly, smiling broadly to reveal lime green rubber bands on her braces.

“He knows I’m only twelve, right?”

The Details—

Mission: To raise money for children whose families cannot afford the necessary medication or treatment for Lyme disease; to provide grants and support the medical community until a cure is found; and to promote education and awareness about Lyme and the associated diseases.

Contact Information: info@livlymefoundation.org; livlymefoundation.org; 303-942-1704
How you can help: Visit livlymefoundation.org/donate. Your contribution provides financial assistance to children with Lyme disease who cannot afford their medication and helps fund the research and cure efforts being made by doctors and scientists throughout the U.S.

Upcoming Events: The Kendra Scott Jewelry “Gives Back” night for The LivLyme Foundation will donate 20 percent of all purchases to LivLyme Foundation. Held on November 30, 2017 from 5-8 p.m. at 175 Fillmore St. Drinks and dessert will be server at this free event open to the public. 

The 2nd annual LivLyme Gala will be held on April 15, 2018. 

 

Rachel Engleberg spent a decade in New York City producing documentaries for ABC News, NBC News and New York Times Television. She is now a freelance writer and mother. She lives in Denver with her husband and three children.