In an effort to help raise awareness, I would like to share my story of Lyme disease.
By Sarah Mott, RN/Owner Nurse Born Products
February 14, 2009, started as any other day, It was my weekend to work. I worked on a heavy surgical floor and I loved my job. I was lucky to work with awesome co-workers, the kind of people that would never let another co-worker sink – we were in it together. We were always having potluck parties; it was Valentine’s Day, the perfect excuse for everyone to bring in food.
As the day moved along, I started to feel pain around the back of my head and it seemed that it was coming from my upper neck. I thought the pain was the result of a difficult and stressful shift. My coworkers noticed I was not feeling well and they jumped in to help me with my patient assignment. By the end of the shift, the pain was really bad. I would easily rate it as 10/10 on the pain scale. I remember driving home, grasping the back of my neck with tears rolling down my face. I was unaware that I had just finished my last shift working at the bedside. I was about to begin a journey into misdiagnosis, excruciating pain, depression, and self-discovery.
The pain was really bad. I didn’t go to the emergency room. As most nurses can relate, I was stoic and I thought that all I needed was rest. I literally felt like someone was hitting me in the back of my head with a baseball bat. I took some muscle relaxers that were left over from a previous injury and waited until the next day to call the first of the twenty or more physicians that I would see over the next few years.
Looking back brings tears to my eyes, maybe it is some sort of PTSD. I am not sure how I survived the pain. I have lost a lot of faith in the medical community, which is a difficult position to be in when you are a nurse. I so badly want you to understand my story. I feel the need to share it and maybe prevent another from going through what I endured, but I am not sure that I can convey it to you. I am not sure that anyone can understand unless they have gone through it themselves. Here is my best shot at trying to put words to my experience…
The first doctor that I saw, was one of the orthopedic surgeons that I worked with at the hospital. I walked into his office in tears. He seemed a bit panicked and ordered a STAT MRI of my cervical spine and brain. The test was negative for anything that would cause the type of pain that I was experiencing. He prescribed some pain medication and referred me to a neurologist. While waiting to see the neurologist; even with pain medication, I couldn’t do anything except lay flat on the floor or in bed without moving. The medication made me feel groggy, but it didn’t take away the pain. It was awful! Then at some point, my pain began to wax and wane and I would have a few days of relief before it would hit again, like a lightning bolt.
The neurologist told me that I had something called Occipital Neuralgia, a type of a headache caused by an irritated occipital nerve. Occipital nerves run from the upper part of your neck to the back of your head. When irritated, the nerve is treated with nerve block injections. A series of painful injections into your head with medication that is supposed to numb the nerve and provide relief. I faithfully went for my treatments, but after several injections I still had pain. My neurologist told me that he did not know what to do for me. He sent me back to my primary care physician. She did not know what to do and kept sending me to specialist. Seeing all the different specialist resulted in years of wrong diagnosis, wrong treatments, frustration, and disappointment.
As time went on, I started experiencing more symptoms: FATIGUE not the…”I didn’t sleep well last night and now have to work a 12 hours shift type of fatigue”, it was a debilitating, and unusual fatigue. I felt like I was drugged. It was like wearing a hundred pound led vest while trying to dig yourself out of quicksand. All that I could do was sleep. I didn’t have the energy to shower, make dinner or do anything around the house. No one knew what was wrong with me. I looked fine and the doctors just didn’t understand how tired I felt. I heard over and over, “You are a nurse, your job is stressful, it is normal to be tired”. BUT, I wasn’t able to work and they just were not hearing me!
My life consisted of trying to get through one day at a time, one hour at a time. Simple things like getting out of bed to get my kids ready for school was physically exhausting. I would spend my day in bed and get up just before they got home because I didn’t want them to see me sleeping all the time. My doctor thought that I was depressed. I was, but it was situational depression. I wanted to get up and do things, I wanted to go to work, I wanted a life. It wasn’t depression keeping me in bed and I knew it but my doctors didn’t get it.
I started to experience more strange symptoms. I didn’t know how to explain them to my doctors. I knew that I sounded crazy. The symptoms would come and go, they changed from day to day. One day it would feel like my arm was broken even though I didn’t injure it and the next day it would be my knee that hurt. Pain and strange sensations migrated throughout my body. Odd tingling sensations, burning, aching and stabbing pains. I had an earache that felt like someone was poking a red, hot rod into my ear. I tried to explain how bad it was to my doctors and they all just looked at me blankly. I think that they thought I was exaggerating ~ I wasn’t!
I became a pro at masking my pain and fatigue. There were many days that I tried to pretend that nothing was wrong. It wasn’t easy. I was physically and emotionally exhausted from the pain and toll that this was taking on me and my family.
My symptoms did not fit into the doctor’s box of symptoms. They brushed my symptoms off; “you have tennis elbow” ~ “uhm…how the hell did I get tennis elbow!“, or ” you are getting older, it is normal to have arthritis.” ~”Geez, I am not that old, this doesn’t sound right”. It’s menopause, stress, depression and my favorite “There is NOTHING wrong with YOU! I began to think that maybe I was crazy, maybe I was imagining this pain and sickness? Perhaps it was my fault that I didn’t feel well. Was I living wrong? I thought; “I have to do more yoga, meditate, eat right, maybe if I live better….”
I felt depressed, but it was not depression that was making me sick. I was depressed because I was living in constant pain, and fatigue. Doctor’s couldn’t find a cause and they minimized my complaints. I was trying to be normal, be a good mother, wife, and friend. I felt alone. The doctor bills were growing and I couldn’t work. I felt guilty. My husband had to take a second job. Friends stopped calling.
I would go through phases where I was gung-ho to find out what was wrong. I would go to doctor after doctor appointments. Then there would be periods of time that I just couldn’t deal with going to see another doctor; receive another misdiagnosis and endure another ineffective treatment. I was sick of hearing the same things over and over.
The symptoms came in flares and then would subside for a short time before returning. Gradually, I started to have trouble thinking. I felt spacey and couldn’t remember things. At times, my speech became disorganized and I had trouble pronouncing words. You know that feeling when something is at the “tip of your tongue” but you can’t access it ~ I had that all the time. I couldn’t get organized, little things like creating a grocery list turned into a monumental task. My doctor tested my neurological status, he said it was normal. I was really scared, my mother had Alzheimer’s Disease and I thought that maybe I had it too.
During the spring of 2015, my husband and I ran into an old friend who told us that his sister suffered from similar symptoms and that she had Lyme disease. I called my friend’s sister, also a nurse, and she gave me the name of her physician. I called for an appointment.
My visit with Dr. S. saved my life. He was kind, and he patiently listened to my story. He thought that my symptoms were consistent with Lyme disease, as well as some of the co-infections that are acquired from the bite of an infected tick. My new doctor performed a very thorough examination, then sent me to the lab to have bloodwork drawn.
Diagnosis, Lyme Disease
My bloodwork was positive for Lyme disease, Babesia, and Bartonella. Coinfections are common with a tick-borne illness. The delay in my diagnosis allowed the bacteria from these infections to wreak havoc on my body. My treatment would be a long, hard journey.
Lyme disease is easy to treat when it is diagnosed early. However, treating late-stage Lyme disease is difficult and painful. Treatment SUCKS! Symptoms get worse with treatment. When the antibiotic starts to kill off the bacteria, toxins are released into your bloodstream and your body cannot get rid of the toxins fast enough resulting in a Herxheimer Reaction, also known as a Herx or die-off. A herx reaction causes your symptoms to feel 10X worse. Add in the treatment for the coinfections and you really start to have fun. I was bedridden for over 7 weeks after first starting treatment. I literally felt like I was dying.
My diagnosis triggered a myriad of emotions. I felt a mix of anger, sadness, grief, a sense of loss, hope and relief. I moved through these feelings in no particular pattern. On some days I felt angry and other days, full of hope. To be honest, I am not sure how I survived all those years of pain and sickness. When I think about it, I get a pit in the bottom of my stomach. I feel anger toward the doctors who didn’t believe that I was sick. At one time, I wanted to write to all the doctors that disregarded my symptoms. I wanted them to feel bad. I wanted to let them know that I was really, really sick and ask them why they couldn’t or wouldn’t help me. I no longer have a desire to write those letters. I guess that is a sign of emotional healing. With chronic illness, you need to heal emotionally as well as physically.
Something about having this type of experience forces you to reflect on your life. I have learned that there are many people who will come and go in your life. The people that go were meant to go and you have to let them. I am so grateful to the family and friends that stood by me. I now choose to spend time with people that I really care about and enjoy being with. I am more selective about who I let into my life. I have become more grateful for the small things. Having Lyme disease has brought me closer to my spiritual side and I feel good about that.
I can’t believe that it has been three years since I posted this story. I was nine months into treatment when I wrote it. As I sit here reading through, I notice all kinds of spelling and grammatical errors that I have to fix ~ I was still suffering from cognitive issues from the Lyme disease when I first wrote this! I am so much better now. But, I am not cured. I struggle with flares, the difference is that I now have the support from my doctor. I have learned how to manage my symptoms. Self-care; eating right, exercise and getting enough sleep is important in keeping my symptoms at bay.
I was not able to return to nursing, which was and still is one of my greatest passions. I am grateful that I am able to stay connected with the nursing community through my business, Nurse Born Products. I really enjoy working with my customers and networking with other nurse entrepreneurs.
Thank you for taking the time to read my story. I would love to hear about your experiences in the comments below.
- The current test for Lyme disease has a very high false negative rate
- Only about 1/3 of the people with Lyme disease get the classic bull’s eye rash
- Not everyone experiences the same symptoms
- The tick that causes Lyme disease is the size of a poppy seed and many people do not realize that they have been bitten
- The bigger dog ticks have recently been found to carry Lyme disease
- Ticks carry many different types of bacteria
- Possums eat ticks