Annie LaBrie, a 35 year-old mother of three school-age children, has a soft-spoken manner that belies her fierce determination to share her message with friends, neighbors, and the ever-expanding world of people affected by the disease that has robbed her of much of the past two years of her life.
Annie's bright-eyed and expressive face gives no clue about the chronic pain and exhaustion that has plagued her slow recovery from her two most recent bouts with Lyme disease. In reality, this meeting is likely costing her an opportunity to rest before her children get off the school bus—no small sacrifice, considering she also works part-time as a speech therapist.
Raising her young family in the same rural Rehoboth home in which she grew up, surrounded by undeveloped and thickly-forested land, it's a beautiful place to make a home. It's also ideal habitat for deer—and the Lyme-disease carrying ticks that they host.
Annie's first bout with Lyme was actually back in college. At the time she was treated with the standard protocol—a round of antibiotics. But when she was reinfected in the summer of 2012, things were different. She never saw a tick, or the giveaway bullseye rash, but she was stricken with terrible migraines and a stiff neck. The traditional "western blot" test for Lyme was negative, but, as she has since found out, that's meaningless.
"The test has about a 50% failure rate," she says. "I was fortunate that my physician recognized it for what it was." Annie began the antibiotic protocol, but after 4 days, her symptoms worsened.
"I was hallucinating. I was diagnosed with Lyme meningitis—the Lyme had actually entered my spinal fluid and traveled to my brain."
She spent a week in the hospital, and on the day she was discharged the attending physician told Annie, "You are going to hear about chronic Lyme disease. There is no such thing."
"I believed him," Annie said. She would have plenty of opportunity to regret that. Her migraines never really went away; her energy never really returned. Then this past July, her symptoms intensified again. Once again, she would not respond satisfactorily to the antibiotic protocol, and once again, she was hospitalized with Lyme Disease.
The head of Infectious Disease at the hospital where Annie received treatment even tried to suggest that her symptoms were the result of "nerves," as he sent her home, claiming she was "treated."
The fact that Annie is currently recovering slowly, after more than two months of antibiotic therapy through a PICC line, is something she credits her personal physician. "Thank God for Dr. (Alan) Dennison," sage says. "He fought hard to get me the treatment I needed. I feel he saved my life." Annie does point out that Dr. Dennison is a primary care physician, and anyone looking for a Lyme Specialist should use the search engine provided by The Lyme Disease Association: www.lymediseaseassociation.org.
Annie has lost two summers with her young children, daily chores continue to be a struggle, and she has recently learned that two of her children are infected with Lyme (one of whom is being actively treated.) She is awaiting results on the third.
But she doesn't have time to lament what she has lost. "I do believe that God has a purpose for why I have gone through this, and I am using my experience to educate others about the signs and symptoms, and particularly the treatments needed to address this."
Lobbying for H989, a Massachusetts bill that would mandate health insurance coverage for the treatment of Lyme disease, has become a priority for Annie, second only to taking care of her own and her family's health. H989 is currently stalled in the House finance committee, and Annie would like to urge Massachusetts residents to contact Rep. Michael Costello, Chairman of the Financial Services Committee, to schedule a hearing. He can be reached at 617/722-2220, or at Michael.Costello@mahouse.gov.
The reality is, the more we know about Lyme, locally and nationally, the bleaker the picture becomes. Where the CDC used to believe 30,000 people a year were diagnosed, that number has been revised up to 300,000. Recently URI tick expert Thomas Mather used the words "exceptional" and "crisis" to describe the tick population in Rhode Island.
URI hosts a website at www.tickencouner.org that is loaded with facts, figures, and information about ticks and preventing encounters. Annie LaBrie can be reached at firstname.lastname@example.org. Please contact her with your questions and comments, and personal stories, as she is building a support network of people in our area who are also fighting the same battle.