Living With Lyme and Rebuilding a Life From Scratch

Tracy Mulholland

Credit: IMDb

Tracy Mulholland’s journey with Lyme disease began with mysterious and severe nerve pain, overwhelming fatigue, and more than 50 medical visits over multiple years before she finally received a diagnosis. Her early symptoms were so debilitating that she lost the ability to care for herself, speak comfortably or use her hands.

Despite false negative test results and years of frustration, Tracy refused to give up. She eventually found answers through a Lyme-literate doctor, began treatment, and reclaimed her career and independence. Today, she is a wellness coach, writer, actor, and creator of a new series called “Girl at a Bar,” which brings visibility to life with chronic illness.

Can you take us back to the first symptoms you experienced in 2011? What did those early days feel like?

Tracy Mulholland: My symptoms started as stabbing, shooting and burning nerve pain in both my arms, and it quickly progressed over a few months to where any small movement with my hands or arms was unbearable. Then, I became so fatigued I slept 12 hours a night with a 2-hour nap and would forget words as I was speaking. I was abruptly debilitated, but even though I was given no answers, I knew there must be a reason this was happening and was determined to find it.

You saw over 50 doctors before getting a diagnosis. What were some of the most difficult moments during that time?

TM: My sister had to move in and take care of most of my basic needs like cooking, cleaning, washing my hair and even brushing my teeth. She researched and booked doctors since using a computer or even dialing a phone number was too painful. In the first year, I had two nerve decompression arm surgeries that did not end up alleviating the pain, and my voice was damaged from the intubation. So, I spent months on vocal rest not speaking for more than a couple hours a day in addition to the arm limitations.

What finally led to your diagnosis of Lyme disease?

TM: I had a Western blot test done for Lyme when I first got sick, but it gave a false negative. So, when a friend who had some similar health issues ended up being diagnosed with Lyme two years into my journey, I met with a Lyme-literate doctor who diagnosed me based on presentation. We then ran IGeneX blood work, testing for Lyme and coinfections.

How have your symptoms evolved over time — and how are you managing now?

TM: It took several years of treatment to regain my ability to work and take care of myself. I took very small steps to become more independent, increasing work hours and home and self-care very slowly. I now continue to act and write as I did before I got sick. I am a certified wellness and executive functioning coach with a specialty in clients with chronic illness, attention-deficit/hyperactivity disorder (ADHD) and creatives. I navigated a couple of flare-ups in the past decade, so I am vigilant about my diet, energy pacing and self-care daily.

Are there any treatments, therapies or coping strategies that have helped you the most?

TM: The treatments I did with a couple Lyme-literate doctors consisted of antibiotics, vitamins, supplements, herbal tinctures and thyroid support that moved the needle over time as well as cutting out gluten and dairy. In addition, I have done neuroplasticity brain retraining, cognitive behavioral therapy (CBT) and dialectical behavior therapy (DBT), and found meditation, learning about boundaries and cultivating self-love to be important to my healing. Learning executive functioning strategies as a coach — like breaking tasks into small steps, emotional regulation techniques, and tracking energy and pain — would have been so helpful to me when I was first sick.

What inspired you to create “Girl at a Bar”?

TM: There have been less than a handful of characters with Lyme in scripted TV and film, and few with other chronic invisible illnesses. I wanted to create a series about someone with Lyme navigating life, love and family. It is not only educational and raises awareness for Lyme and life with chronic illnesses, but the series is also accessible and entertaining. Before I got sick, I ventured to bars alone once a week for a year to get out of my comfort zone. Years after I got sick, I did it again to discover my identity as a person who had been through this health journey. The latter experience felt like a profound and unique way to bring Lyme onscreen.

What do you wish more people — especially doctors — understood about Lyme disease?

TM: Lyme really does present differently for everyone and as they say, it is the “great imitator” of many other diseases. So, it’s imperative to consider Lyme when there are any chronic physical or mental health issues, no matter the state or country a person is from.

What message do you want to share with someone who’s still looking for answers about their unexplained symptoms?

TM: Keep getting through each day, and though the road is scary and disheartening, it’s only a matter of time until you will find something that will help you. Advocate fiercely for yourself in doctor appointments. If you are met with disbelief, no answers or little progress, pivot to another practitioner or approach. Reach out to people who had unexplained symptoms or have chronic conditions — friends, influencers, organizations — there are people who want to help and support you.

Tracy Mulholland is an actor, writer, wellness coach and creator of the "Girl at a Bar" series on YouTube about living with Chronic Lyme.