Jennifer’s Story
In the spring each year, my family goes mushroom hunting on the farm. You can always count on a few ticks, but one year was different. We were covered head to toe and as we drove home, ticks were crawling on the inside of our windshield. Even after a shower and washing our clothes, I still found them for several days.
By August of 2007, I was in pain and could hardly make it up a flight of stairs. My family doctor referred me to a pain management doctor, for medication and acupuncture. I also went to a chiropractor for added relief. Nothing worked, so I was referred to a neurologist, for more pain medication and a spinal tap. No way, I thought! The next year, I was sent to an oncologist and a rheumatologist with no results to report.
Another year went by and there were no answers, but I knew there was something seriously wrong. I was still trying to work, live a normal life, and manage symptoms but it was taking a toll. I could not even answer the phone and take a simple message, my brain and hand would not work together. I tried to keep the symptoms from my family until I could tell them what was wrong and didn’t want to worry them. In 2009, I would suffer multiple symptoms each day. I had dizziness, fatigue, fainting, low blood pressure, temperatures, blurred vision, heart palpitations, cold skin patches, brain fog, headaches, sinus infections, stiffness muscle twitching, bell's palsy, dental problems sensitivity to light, ringing ears, constipation, night sweats, neuropathy, mental confusion, weight loss and widespread pain. The list is long and I think this list varies from patient to patient.
Finally, someone introduced me to an Osteopathic Doctor. I was sent a packet to fill out information that dated back to my childhood. I thought it was interesting that they needed so much from me. My first appointment lasted two hours, they really listened and took notes. I would check in weekly and wonder if the doctor was tired of taking my calls. The Osteopath happened to attend my church and one day she asked, “Have you ever had ticks on you”? I answered that every year as a child I had and explained the last mushroom hunt as being the worst. We finally had a lead. She sent my blood work for testing in another state since typical Illinois health systems did not provide testing for chronic Lyme. After four weeks, my results showed positive for Borrelia Burgdorferi and other co-infections of Lyme Disease. I was elated to find an answer and was soon let down when I realized there was no cure.
In 2011, I started support group meetings for Lyme patients and started a medication protocol. For the first two years, I took antibiotics and supplements. The doctor explained how I would feel worse before I felt better with herxing, the awful process for killing off bacteria and detoxing your body, over and over. I admit, I did not want to do that over and over, but the great physician kept me going through it. Through all these appointments, I thought my insurance would cover Lyme disease treatment, but at that time in Illinois, it did not. I cannot tell you exactly the out-of-pocket cost that mounted, but my guess is that in just those first four years, it was at least $75,000.
I hope my story emphasizes the need for early detection, more treatment education and the reality of having to navigate through so many doctors to finally find a Lyme Literate doctor who can help. I hope future Lyme patients don’t have to go through what I did.
I am also so grateful that Jen Russell stepped forward when her daughter was battling Lyme and started the Illinois Lyme Association. Thanks to ILA, legislation has been passed to have insurance cover state-regulated Lyme Disease treatment in Illinois.