Courtney – A Two-Year Journey Towards Remission

In September of 2016, I was admitted to the ER for a 103 degree fever and excruciating pain in my neck, back, legs, jaw, head, etc. The doctors did a spinal tap and hooked me up to IV fluids, but couldn’t figure out why I had a fever or what was causing all of the pain. They sent me home with no answers. I grew extremely tired and weak, to the point of taking naps in my car during my lunch break. In the mornings, I awoke with a strange brain fog. I fainted twice in my apartment while living alone, once crashing into the wooden doors of a closet before making my way to the carpet. My body deteriorated to the point that mom stayed with me to help me in and out of the bathtub and bed. While I had seen my Primary Care Physician earlier on in this process, she ran labs and couldn’t figure out what was wrong.

Then it happened: I started to get discoloration on the top portion of my left thigh. Over a few days, it grew to several inches in length and felt hot to the touch. I also began getting a rash of bright red patches across my back and stomach. Once my PCP saw the bullseye and disseminated red lesions, she prescribed antibiotics. The first round helped but unfortunately, during the second round of antibiotics, my symptoms worsened. I saw an infectious disease specialist in St. Paul who told me I definitely had Lyme disease but there was nothing further they could do. “Maybe it will go away on its own,”they said.

I was 21 years old when this all started, and led me to a 2+ year journey with chronic Lyme disease. I experienced headaches, hair loss, acne, hearing loss, memory loss, difficulty concentrating, speech issues, nerve pain, trouble sleeping, fibromyalgia symptoms, neck and back pain, light/sound sensitivity, night sweats, irritable bladder, lack of energy/fatigue, throbbing pain at the base of my skull, muscle and joint pain, stiff neck, and the list goes on.

I received my first grant from LymeLight Foundation on June 11, 2018. By this point, I was beside myself feeling utterly helpless. I experienced financial difficultly from all of the medical costs and was at a point where I would try anything if it would help. Thanks to the LymeLight grant, I began seeing a doctor in Franklin,TN who was a Lyme disease specialist. Initially, I started a strict diet, taking supplements, antibiotic rotations, bicillin injections twice a week and IV treatment. Eventually, after receiving another LymeLight grant, I was able to undergo UVLRx IV treatments at that clinic. I believe those treatments in combination with the vitamins/supplements and antibiotics is what finally helped me reach remission.

I’m so grateful to have this incredibly long process behind me, thanks to LymeLight. I feel for others who are struggling with Lyme disease today. There is not nearly enough research done to help these patients make educated decisions and many doctors do not understand the disease and treatment options. My hope is that one day it won’t be so difficult for Lyme disease patients to receive quality treatment that works.

I will forever be grateful to the LymeLight Foundation for helping me get my life back.