The Road to Diagnosis: A Winding Road

If you or someone you know has Lyme disease, you understand getting diagnosed comes with it's own challenges. My road to diagnosis is like so many other stories I hear and read about, taking months to years before getting diagnosed. My Lyme journey began in 2023 after spending the summer traveling to the NE and MW regions of the U.S. I live an active lifestyle and enjoy working out so I had no idea at the time I was experiencing symptoms. My workouts were intense so being tired after a workout was nothing out of the ordinary and when the fatigue progressed I just thought man, getting old sucks. I delt with the joint pain, muscle soreness and fatigue for several months just continuing with my daily routine.

October was where things really began to escalate for me. I started experiencing neurological symptoms (which I discuss in a separate post), and we knew something was extremely wrong. Not only was I having cognitive and neurological issues but now my physical symptoms were progressing. My husband called our PCP and they got me into the office within a few hours. Our doctor immediately ordered a MRI of my brain and sent us to the imaging center right away. Who knew this would be the beginning of a grueling 10 months of doctor visits, lab work, scans, tests, procedures and multiple trips to the ER with no answers. I saw 11 doctors in a 10 month span with several misdiagnosis and no concrete answers. When I say doctors, I am referring to specialist and it became a process of elimination because no one seemed to know what was wrong. We heard the terms; Absence seizures, MS, three different types of cancer, Lupus and were introduced to Lyme for the first time. We were told by my neurologist in November of 2023, my Lyme results did not meet CDC criteria despite testing positive with 3 bands on the western blot test. (which I dive into in on a separate post). This will be the first of three times being tested for Lyme and told by multiple medical professionals I don't have Lyme disease due to inconsistencies in my results over the next year.

After a long road already, we were at a loss on what to do and headed down a different path with my illness. March of 2024, our path changed again as we began to head back down the Lyme road, thanks to my youngest son's baseball coach. We were introduced to one of the best LLMD's and prayed this would lead to answers. A month later, I had a consultation and we were told about the advanced testing needed for my case. She was doctor number 12 for me and we would have to travel 3.5 hours to see her but she came highly recommended and at this point we would travel anywhere for answers!

Road trip for a consult with my LLMD

Unfortunately, my case is like so many others in the Lyme community when it comes to a diagnosis and frankly it's quite frustrating. So many go months to years without a proper diagnosis and a lot of it is due to inaccurate testing, archaic CDC guidelines, and Lyme being known as the "great imitator" presenting the same symptoms as so many other illnesses. Getting answers can be such a defeating process when your case puzzles medical professionals and being misdiagnosed becomes the norm. Being passed from specialist to specialist can take a toll not only on your physical health but also on your mental health. For me personally, other than the debilitating symptoms, it was the unknown that became so scary and I really had to rely on my faith, family and friends to get me through.