Lyme Spotlight: Amy Fitzgerald

Amy’s Story: Running After Answers

Amy Fitzgerald was a youthful, active 24 year old living in Vienna, Virginia, when one day the unthinkable happened: she woke up paralyzed from the waist down. That morning in April, 1995, she fell out of her bed and crawled to the bathroom, trying to find a phone to call for help. From that day onward, her life would never be the same.

In the space of a day, Amy went from enjoying running and taking walks on the trail near her house to having to use crutches to get around since she couldn’t put weight on her legs. It would be 6 months before she could spend most of the day without crutches. It would be 15 years before she would finally have answers.

In the meantime, the mysterious illness took over her life. She faced other symptoms such as extreme fatigue, iritis (which is an inflammatory eye disease and a common symptom of Lyme disease), and her neck flared up to the point she could not turn her head. Eventually, she could no longer drive. She missed days of work. “It was life-altering,” she said.

She spent her days in her room with the lights turned off–her eyes were too sensitive to the light– just waiting as day after day went by. “I thought I had cancer,” she said. “That’s how bad the pain was.”

Although she would regain the ability to walk without crutches and be able to work and drive again, the illness had not disappeared. She had no clue what was wrong with her body.

Doctors didn’t know either. At first they told her, “It’s all in your head.” Some blamed it on stress. At one point she was diagnosed with ankylosing spondylitis, a disease that reduces flexibility in the spine and can cause joint pain. It is more commonly found in men than women.

She then went to a rheumatologist who gave her a pressure point test. During that test, the doctor checked 18 different places on her body for tenderness. When patients report pain in 11 or more places, they are diagnosed with fibromyalgia.

Amy’s test results led to a fibromyalgia diagnosis–although she did not exhibit all signs of the disease–and doctors also determined she had chronic fatigue. She had another answer… but was it finally the right one?

The next few years, she kept active as best she could. She spent time in physical therapy, did light walking, went swimming, and used the elliptical. However, the crutches always remained nearby.

On Thanksgiving Day in 2009, Amy’s life changed drastically again. But this time, for the better. Seeing her husband get ready to go for a run, Amy was inspired to start running again. That first day, she went five miles. Although she was told she should not run, and instead should take up some other, less straining activity, Amy kept at it. In 2010, she began preparation for her first marathon.

2010 not only marked her inaugural marathon, but also a milestone in finding a final answer to her illness. New symptoms had appeared. She felt extreme fatigue and had pain in her wrists and elbows. These symptoms made her rethink her fibromyalgia diagnosis. She went to an infectious disease doctor and was tested for Lyme disease using a Western blot test.

It came back positive for a previous Lyme infection.

Amy told her doctor she had never had Lyme before. Looking back, she could not even recall a time when she had found a tick on her. The doctor prescribed her two months of Rocephin, an antibiotic. She began to feel better.

A month later, Amy ran her first marathon. “I felt awesome. I thought I was done with Lyme,” she said.

Then, two years after her diagnosis, Amy began having pain in her ankle bone. As she researched her symptoms, one thing came up time and time again: Lyme disease. She went back to the doctor and retook the Western blot test. The result was identical to the one she had received two years earlier. It was still positive. Her doctor diagnosed her with chronic Lyme disease.

Amy was given another dosage of antibiotics to treat her chronic Lyme. She revamped her entire lifestyle, choosing to go holistic and remain active. She reduced her sugar and carbohydrates intake, began going to an acupuncturist, started soaking in epsom salt baths, eliminated stress in her life, and continued running.

To this day, she is not cured. She still struggles daily with the effects of chronic Lyme disease. However, she is hopeful for the present and for the future. “A message I always try to get out to people is not to give up hope,” she said. “There is research being done right now. There are ways for you to get better. Not necessarily cured, but to feel better. To get your life back.”

Today, Amy is focused on being a wife and a mother-of-three, her acting career, advocacy work, long-distance running, and–just recently–being a running and exercise coach. She is a new member of the Screen Actor’s Guild (SAG) and has appeared in House of Cards, VEEP, and several shows on the ID channel, as well as some movies.

Amy has been working with National Capital Lyme, a Lyme disease advocacy group. They are gearing up for their annual Loudoun Lyme race on May 7, 2017. There will be a 5k, a 10k, and a 1k fun run. Many people come out to run on behalf of a family member who is struggling with Lyme. It is also a time of sharing stories, support, and encouragement among those who are living with the effects of Lyme disease.

Amy is also training and raising money in order to run in the Boston Marathon on April 17th with a group called 261 Fearless. 261 Fearless was founded by Kathrine Switzer, the first woman to run in the Boston Marathon. She ran when the marathon was still a men’s-only race and was nearly thrown out when one of the race directors realized she was a woman. 261 Fearless is a global organization that supports and encourages women to pursue empowerment through running.

To all those who are fighting the daily battle against Lyme disease, Amy encourages them to hold on to hope and to keep dreaming. There are many avenues to receive treatment, including holistic methods, lyme-literate doctors, and infectious disease doctors. She also encourages those suffering to continue to research their disease, share their stories, and get involved with advocacy groups.

“Some people are bedridden and tired, but all you have to do is make a phone call or talk to someone,” she said. “Advocacy is so empowering.”

For Amy, another important aspect of living with Lyme disease is being comfortable with your choices. Every Lyme-carrying tick is different, and the symptoms of Lyme can manifest in different ways from person to person. “Do what is best for you,” she said. “What someone else is doing is not necessarily the right thing for you[…] Be your own advocate.”

Preventative Measures

Lyme is a debilitating disease. However, there are some preventative measures you can take to decrease your chances of contracting it. These are the steps Amy recommends, as well as some important information about Lyme disease:

• Cover yourself up by wearing long socks, long pants, and a hat. What many people don’t realize is that ticks will drop from trees and land on you.
• Have someone check you for ticks after you’ve been outside. Ticks are small and most people don’t feel them as they crawl around. Don’t overlook checking your scalp, armpits, and private-areas.
• Use DEET when going outside. There are also natural options available for those who don’t want to use strong chemicals on their bodies.
• If you have a tick bite, remove the tick right away. Make sure you use proper tick removal methods.
• Save the tick, put it in the freezer, and take it with you to the doctor. Be sure to see your doctor right away. They can tell if the tick is the Lyme-carrying deer tick.
• There are also places you can mail in your tick for free testing.
• The bullseye rash is often associated with tick bites, but not everyone gets a bullseye rash.
• The current tests for Lyme disease can give false negatives, leading some to rule out Lyme, even though they may still have it.
• Amy also recommends to ask for four weeks’ worth of antibiotics. Doctors often give one or two weeks’ worth. However, some studies suggest that a week or two supply is not effective enough. In his ILADS article on tick bite removal and treatment, Daniel A. Kinderlehrer, M.D. recommends no less than three weeks of treatment.

According to the CDC, 96% of the United State’s Lyme Disease cases occur in 14 states in the northeast and upper midwest, Virginia, Maryland, and DC among them. Because of this, it is incredibly important to be informed about Lyme disease. Amy is one of many who has been affected by Lyme, and every year an estimated 300,000 are added to those numbers.

Amy hopes that as Lyme disease awareness spreads, more efforts will be made to properly diagnose and treat it. She looks forward to a future where less people are lost in the medical system for years on end, as she was.

Sometimes she wonders what her life would have been like if she had been properly diagnosed sooner. “What if someone had diagnosed me in a couple weeks? Would I be in the same place?” While she may not have an answer, she hopes that through sharing her story, fewer people will have to ask themselves that same question.

If you would like to read more about Amy’s story or if you would like to send her a message about her exercise/running coaching, you can check out her blog, Facebook, Instagram, or Twitter.

If you would like to learn more about National Capital Lyme and their work, check out their website at natcaplyme.org.

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