About the author: My name is Lindsay, I’m a nurse and mother of 3. I love spending time with my children and listening to music. I used to be quite active prior to falling ill, we spent a lot of time outside- going for walks, at the park, etc. Things have changed quite a bit for my family but I’m growing every single day in my Lyme life.
I fell ill in March 2018, three months after having my third child. It started with flu-like symptoms- fever, chills, body aches- the works. This lasted for about four days and then on March 17, 2018, I woke up feeling slightly better.
Then, suddenly, symptoms returned along with confusion, weakness, numbness, and tingling. I couldn’t stand by myself. Initially, I thought I was having a stroke with some of the symptoms I was experiencing, so I went to the ED and was admitted to the hospital for 4 days. After a number of tests; MRIs, CTs, blood work, urine cultures, spinal taps, x rays, but no one had answers. They sent me home in the same condition as I was when I was admitted.
Symptoms continued for months after, and I continued to seek answers. I saw more than ten doctors and really had to become my own advocate. I had neurologists telling me my symptoms were from depression. Rheumatologists said it was a Connective Tissue Disorder. The Infectious Disease department had no idea or simply would not help me. I was misdiagnosed multiple times with severe depression, post-viral fatigue syndrome, fibromyalgia, chronic fatigue syndrome, and the list goes on. I spent hours doing my own research, being extremely forward with the medical community and pushing for answers.
Be your own advocate
I started logging my symptoms on a daily basis and created a binder full of my labs, hospital visits, Dr visits, my symptom tracker, etc. I would take this to any and every Doctor’s appointment I went to.
It wasn’t until I saw a functional medicine Doctor, a year and a half after the start of all my symptoms that I got answers. She tested me for Lyme disease coinfections and I came back positive for Babesia, Mycoplasma pneumonia, Rocky Mountain Spotted Fever, Bartonella, Dengue and EBV. She suggested I seek treatment with a Lyme Literate Medical Doctor (LLMD), which I am still being treated by to this day. Currently, I am on a number of oral supplements and IV antibiotics via my port
Struggles with health insurance
As everyone in the Lyme community knows, insurance does not cover the majority of the treatment we need. I spend thousands of dollars out of pocket, for supplements and my IV supplies. I've gone weeks without my IV treatments due to insurance not covering. I still struggle to this day with insurance. Being it was recently the enrollment period for my health insurance, options for me were limited. "Pre-existing conditions" are no joke with these insurance companies and they do not want to take on patients like myself.
Praying every day for normalcy!
Not only will Lyme take over your life physically, mentally, emotionally but it will also drain your bank account. It's so much more than what some make it out to be.
My advice to ANYONE with an illness where they cannot find what they need is to KEEP PUSHING. Keep researching, and do not give up hope. Be your own advocate, keep notes, keep labs, keep everything. And stay as positive as you can!