Woman ‘Dismissed’ and ‘Misdiagnosed’ by Over 20 Doctors After Finding Tick Embedded in Her Knee at 8 Months Pregnant (Exclusive)

### Mother’s Battle with Lyme Disease Highlights Urgent Need for Medical Awareness

Diana Cust, a therapist from Portland, Maine, shared her harrowing journey with Lyme disease, urging medical professionals to improve their understanding of the illness. Cust’s ordeal began in June 2021 when she discovered a tick on her knee while eight months pregnant. At that time, she was reassured by medical personnel that the tick posed no threat to her health, leading her to dismiss any potential concerns.

Upon her return to work, Cust was optimistic about her health and the impending birth of her first child. However, as months passed after giving birth, she experienced a cascade of alarming symptoms that were tragically overlooked or misdiagnosed by more than 20 doctors. These included severe fatigue, nausea, and night sweats—conditions that were often attributed to the challenges of new motherhood rather than serious health issues.

Cust, now 34, recounts that her symptoms worsened dramatically by the spring of 2022. Her condition escalated to neurological complications such as postural orthostatic tachycardia syndrome (POTS), making even simple tasks exhausting. “I went from riding my bike daily with my baby to struggling to stand in the shower,” she explained, highlighting the rapid decline of her physical capabilities.

Added to her physical struggles were psychological challenges, including severe obsessive-compulsive disorder, intrusive thoughts, and overwhelming emotional distress. She endured a plethora of diagnoses ranging from fibromyalgia to multiple sclerosis, but none addressed the root cause of her suffering. It wasn’t until March 2024, almost three years after the initial tick encounter, that Cust was finally diagnosed with stage four neurological Lyme disease and multiple co-infections, thanks to advanced testing by a “Lyme-literate doctor.”

The diagnosis, while relieving, brought its own set of challenges for Cust and her family. Faced with mounting healthcare costs not covered by insurance, her community rallied around her, providing childcare and assistance in fundraising to secure treatment at LymeStop in Wisconsin. “It became all hands on deck,” she said, indicating how crucial her support network was during this tumultuous time.

Throughout her journey, Cust has stressed the likelihood that her ordeal could have been prevented if she had received proper medical advice initially. The misinformation surrounding tick bites and Lyme disease is alarming; despite revisions by health authorities, many doctors still rely on outdated guidelines. “We are in desperate need of doctors being more Lyme-literate,” Cust remarked, advocating for increased awareness around the disease, especially in regions where tick bites are common.

Cust’s experiences serve as both a cautionary tale and a call to action. The National Health Service (NHS) and other health institutions must start providing clear guidelines regarding the assessment and treatment of potential Lyme disease cases. Early intervention, she stated, is vital for better health outcomes. “Trust your body,” she urges others, reinforcing that patients must not dismiss their symptoms simply because they may not align with a current medical narrative.

Reflecting on the emotional toll, Cust expressed grief over the lost moments with her children and the impact of her illness on her family life. “A lot of motherhood for me during those years wasn’t what I imagined,” she lamented, acknowledging the difficulty of missing out on ordinary experiences.

Today, having made significant strides in her recovery, Cust is hopeful. She reports an 80% improvement in her symptoms and aims to use her platform to encourage others to advocate for themselves. “You are the expert of your own body,” she insists, pushing for a cultural shift in how medical professionals approach Lyme disease and tick-borne illnesses.

Cust’s story serves as a poignant reminder of the challenges that patients can face when battling invisible illnesses. As more individuals like Cust bring their narratives to the forefront, the hope is that increased awareness will lead to better diagnosis and treatment, not only for Lyme disease but for myriad other under-recognised health issues.