Lyme Disease Stories

“I got bit by a tick in the summer of 2016. Lyme disease can lie dormant in your system until your immune system is compromised. That is what happened to me. I was bit in 2016 and didn’t show symptoms until 2019.”

“I developed debilitating neurological symptoms from chronic Lyme disease and multiple co-infections. I lost my memory, struggled to process simple conversations, couldn’t drive safely, battled relentless fatigue, anxiety, pain, and brain fog, and eventually wondered if I would ever feel like myself again.”

“Being really sick and being told over and over that, ‘You’re over-exaggerating,’ ‘You’re being overly sensitive,’ or ‘Look, your labs are normal,’ is a special kind of torture that most people will never understand.”

In January 2019, during a trip across Europe and Jordan, I started feeling weird. I had dizziness, light sensitivity, tachycardia, I was breathless, and I had pain in my forearms. Back in France, I saw a lot of doctors who said, ‘It's nothing except stress. You can take Xanax.’ Hell no. I was sure there was something strange in my body.”

"I am a 20-year-old college student. I love to make music and hang out with my friends. I was diagnosed with Lyme disease five years ago, and my health has been a rollercoaster ever since.​​​​​​​​”

"If you would’ve asked me two years ago where I thought life would take me, I could’ve never imagined that I would be here. It seemed that, within a blink of an eye, my world was transformed. In 2021, I’d gone from an independent, straight-A, overachieving student and competitive vocalist to someone who spent more time in the hospital than in a classroom.”

“In 1998, during forestry work for my studies in the royal forests near Apeldoorn in the Netherlands, I was bitten in the neck by three ticks. After a few weeks, I started to have symptoms such as fatigue, headaches, and muscle pain. I went to my general practitioner and told her about the three tick bites and my symptoms; she saw no red circles or bulls-eye rash, and she dismissed my symptoms as stress because of my studies.”

“This experience has made me understand the importance of taking action in my own health. I trusted, healed and learned that I was stronger than I thought.”

“One of the hardest things about being chronically ill and living with Lyme disease is that most people find what you’re going through incomprehensible.”

“The neglect, isolation, and grief are tough. But what type of people does it take to be putting up with these crazy, debilitating symptoms? Very STRONG, amazing people. You may not feel that way, but trust me, you are.”

“Like many Lyme disease patients, I never had a bullseye rash and I never saw a tick bite. For years, I was told my bloodwork was normal, while close friends and family thought I was either a hypochondriac, anorexic (from weighing 90 pounds), or just flat out crazy.”

“Lyme disease was the hardest thing I have ever had to deal with. However, there is no doubt, that getting Lyme disease, was the greatest thing that ever happened to me. You will get through this, and you will be better for it.”

"I never ‘looked’ sick. To feel so unwell, and to be dismissed by the people and doctors who are supposed to help you, was a traumatic experience.”

“I share my story to help raise awareness about late-stage Lyme. I did not know how devastating tick-borne illness was until I received my diagnosis and learned that treatment would be far more complicated than two weeks of Doxy.”