Living with Lyme

While playing with neighborhood friends one day, six-year-old Laura Matthews was bitten by three ticks. It seemed insignificant at the time, and her mother, Libby, had no idea of its importance when she removed the ticks and noted the bites in her daughter’s baby book. 

As Laura grew, she developed several serious medical conditions. Keratoderma made her feet crack and bleed, keeping her from walking barefoot. She bruised easily, and a weakened immune system left her vulnerable to strep and pneumonia. Laura’s short-term memory deteriorated, and she had difficulties communicating. As a sophomore at Mountain Brook High School, Laura began to have seizures. Neither her family nor a variety of specialists suspected that those long-forgotten ticks were at the root of the problem.

“Name an illness, and she was diagnosed with it,” Libby said. “We would just go to these doctors that specialized in the symptoms, and that was how she got treated. Not one doctor was thinking it was one thing, a common cause.”

When Laura was 15, a family friend mentioned the possibility of Lyme disease. The family went to a doctor in Tennessee, who tested Laura and found that her many medical mysteries were caused by late-stage Lyme disease. When detected early, the disease can be treated with a course of antibiotics. When it is not recognized, as in Laura’s case, the disease spreads and wreaks havoc throughout the body.

Fifty pills every day, several injections every week and daily naps — that’s Laura’s regimen for supporting her immune system and managing the list of illnesses that Lyme disease brought with it. Now 20 years old, Laura has a variety of conditions, including hyperthyroidism, arthritis, anxiety disorders, severe fatigue, night sweats, short-term memory loss and some skin disorders. She also suffers from co-infections that accompany Lyme disease: Babesia, a malaria-like disease that ravages the immune system, and Bartonella, which can cause heart inflammation, encephalopathy and other disorders.

“Anybody who has Lyme disease, if they have a pretty good immune system, they can fight it off,” Libby said. “It’s the co-infections that absolutely wipe you out.”

Besides the physical damage, Lyme disease is also isolating for its victims. Laura recalled losing several friends after the diagnosis, and many family members still do not understand why she cannot always participate in family functions. She has the support of her parents and 17-year-old sister, Anna, as well as her boyfriend, but said that babysitting her neighbor’s children is a significant part of her social life.

“In October [2009], I was diagnosed. I told some of my close friends that I had been close to since first grade. They totally ditched me, everything. I didn’t have one person,” Laura said. “I don’t have one best friend. I have my boyfriend, and that’s all.”

Anna is in a unique position to understand the challenges her sister faces, as she was also diagnosed with Lyme disease two years ago. Anna’s case is less severe and does not affect her neurological functions, but she still faces Bartonella, hypothyroidism, sudden heart rate or blood pressure drops, von Willebrand disease and gastrointestinal issues. She also had severe anxiety issues, but since beginning treatment, she has joined a choir and Leadership Mountain Brook.

Having two daughters with Lyme disease has been both physically and financially exhausting for Libby and her husband, Kit. Treatment for late-stage Lyme disease is not covered by insurance, so the Matthews have spent their savings and retirement fund on medications, tests and multiple yearly visits to their doctor in Tennessee. Libby described it as “living a nightmare.”

“Some days you just get overwhelmed with it all and you just want to stop, but you can’t,” Laura said.

Although many people still do not know about Lyme disease’s severity, the Matthews have found support from other families suffering from the disease. Through the Alabama Lyme Disease Association they met Sarah and Julia Israel, who were diagnosed with Lyme about two years ago. Sarah and Julia are 2004 and 2006 graduates of Mountain Brook High School, respectively, and have a congenital version of the disease that was passed on by their father.

Sarah is unable to work at a regular job, and Julia had to quit nursing school because of the disease’s cognitive damage and their unreliable health. Although the sisters feel as if their life is “paused,” both are completely confident that they will go into remission.

The Matthews and Israels support each other during the social isolation and long, painful battle of treating Lyme disease. The Israels said that Libby is like a second mother to them and they are inspired by Laura and Anna’s resiliency.

“Finding the Matthews girls is heartbreaking because they’re going through so much, and because you’ve been through it you don’t want anyone else to feel that. But it’s also, in a way, good to have company and people that understand you and understand exactly what you’ve been going through,” Sarah said.

The Matthews have no guarantee that either Laura or Anna will ever go into remission, but that does not stop them from planning a successful future. Anna wants to study interior design at Samford University, and Laura works around her memory loss and fatigue to study diagnostic medical sonography at Virginia College. She plans to graduate in 2015.

Raising awareness and understanding of Lyme disease is an important goal for the Matthews. Laura makes a video every May for Lyme Disease Awareness Month and spreads awareness through social media and her personal story. By teaching people to recognize early symptoms and changing the way doctors diagnose and treat Lyme disease, the Matthews hope their personal struggle can keep other families from the same fate.

“All of this could have been so prevented if we knew more, if our doctors knew more,” Libby said. “I don’t want anybody to go through this.”

To learn more about Lyme disease, visit alabamalymedisease.org or cdc.gov/lyme. Follow the Matthews’ story on their Facebook page, Fight for Laura and Anna, or follow the Israels on Sarah’s blog, whenlifehandsyoulyme.blogspot.com.