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. I liked my weekend, we were always having potluck parties on the floor and it was Valentine’s Day, the perfect excuse for everyone to bring in food.
As the day moved along, I started to feel terrible discomfort at the back of my head and neck; in the occipital area. I remember struggling to get through the shift and my co-workers jumping in to help me. By the end of my 12-hour shift, my discomfort turned to pain that was close to 10/10 on the pain scale. I remember grasping the back of my neck while driving home in tears, unaware that I had just finished my last shift working at the bedside.
I am not sure why I didn’t go to the emergency room, the pain was so bad, I felt like someone was hitting me in the back of my head with a baseball bat. I was stoic and waited until Monday to the see the first of the twenty or so physicians that I would see over the next six and a half years. I was about to embark on a journey of misdiagnosis, excruciating pain, depression and self-discovery.
Looking back brings tears to my eyes, seriously, 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…
My neck and head pain lasted continuously for what felt like a month. My brain scans and other test were normal. The first doctor that I saw, an orthopedic surgeon did not know what was wrong, he referred me to a neurologist. While waiting to see the neurologist, I was in so much pain, I couldn’t do anything except lay flat in bed without moving, no pillows just flat with the lights out. Pain meds barely touched my pain. It was awful! At some point the pain began to wax and wane and I would have a few days of relief before it would return again.
When I finally got in to see the Neurologist he diagnosed me with “Occipital Neuralgia” a type of headache that is caused from an irritated occipital nerve which is located at the base of your skull where your head and cervical spine meet. Treatment consisted of a series of nerve block injections to the back of my head. It was not pleasant! After several weeks of injections, I still had pain. The Neurologist told me that he did not know what to do for me. My primary care physician did not know what to do and kept sending me to different specialist. Over the years, I would receive a plethora of diagnosis and ineffective treatments.
I developed more symptoms: FATIGUE not the…I didn’t sleep well last night and now have to work a 12 hours shift type of fatigue, more like, I am wearing 20 lead vest, have been drugged with a sedative and now have to climb out of quicksand type of fatigue. The fatigue was relentless and debilitating.
My life consisted of trying to get through one day at a time, one hour at a time. Just getting out of bed in the morning to get my kids ready for school was exhausting and on a few occasions, I slept right through the alarm. After they left for school I would go back to bed and sleep all day and then get up before they arrived home from school because I didn’t want them to see me sleeping. My husband couldn’t understand why I was too tired to cook dinner. I mean geez, I didn’t understand it either. My doctor said I was depressed, well…not really because 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 soon developed more strange symptoms… symptoms that would come and go in cycles. I suffered from horrible pain in my right ear, I would describe it to doctors as feeling like someone was sticking a red hot rod in my ear, I had constant pain in my right eye with floaters and blurred vision, pain across my right cheek, teeth and jaw. Doctor after doctor told me that I was having migraines. I knew that it wasn’t a migraine and I insisted that it felt like nerve pain, they insisted that it was not nerve pain and that it was a migraine and they prescribed all the “most effective” migraine medications. None of the medications worked. Years later, after I was finally diagnosed with Lyme disease, it was determined that this pain was caused by a shingles type virus that was activated by the Lyme disease.
I would have periods of time when I felt okay, good enough to pretend and other times when I just couldn’t function at all. As time went on, I developed more mysterious symptoms; migrating arthritic pain in my neck, spine, shoulders, elbows, knees, muscle pain and spasms, rib pain, pain in both my feet…oh boy the foot pain hurt…it felt like I was walking on glass even when I was sitting down.
My symptoms did not fit into the doctor’s little 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? Maybe it was my fault that I didn’t feel well. Maybe I was living wrong….I have to do more yoga, meditate, eat right, 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, unable to function on some days and no one understood. I was trying to be normal, be a good mother, wife, and friend. I felt alone, the doctors minimized my complaints. The doctor bills were building up and I wasn’t working. I felt guilty. My husband did not understand, but he believed in me and knew I was sick, he was my rock and I am so thankful that he stood by me through this.
I would go through phases where I was gung ho to find out what was wrong and I would go to doctor after doctor, 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 wrong treatment. I was sick of hearing the same things over and over. I still don’t understand why the doctors wouldn’t listen to me.
By 2014, I was still having flares and remissions with the headaches, pain, and fatigue. I also developed neurological problems. I was having trouble speaking, I couldn’t think of words, I had trouble organizing and sequencing things. Just the task of creating a grocery list was monumental. I was really scared, my mother passed away from Alzheimer’s disease and I thought that maybe I had Alzheimer’s too.
During the spring of 2014, 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 a Lyme Literate Physician. I called for an appointment.
My appointment with Dr. S was life changing. He was the first doctor to listen and understand. Not only was he kind, he was thorough, my appointment lasted two hours. Dr. S ordered lab work and I was to return to his office for results a few weeks later.
At my second visit with Dr. S, I learned that my blood work was positive for Lyme disease and two Lyme disease coinfections, Babesia and Bartonella. I was also positive for Varicella, the virus that causes shingles, which was activated by the Lyme disease and was the cause of my facial and ear pain. I was diagnosed as having Neuro-Lyme. Because I was not diagnosed early in the disease, the bacteria began to wreak havoc on my body and started to affect my central nervous system. After receiving a diagnosis, a flood of emotions took over me and I cried all the way home.
Lyme disease is easy to treat when it is diagnosed early. Late stage Lyme disease treatment is long and painful. Treatment SUCKS! Symptoms get worse with treatment. When the antibiotic starts to kill off the bacteria, toxins are released and the body cannot get rid of the toxins fast enough resulting in a Herxheimer Reaction, also known as a Herx or die-off – this reaction causes the symptoms to feel 10X worse. Add in the treatment for the coinfections and you really start to have fun. During initiation of treatment, I was bedridden for over 7 weeks.
Borrelia Burgdorferi, the bacteria responsible for Lyme disease wreaks havoc on your body. Treatment consist of killing off the bacteria as well as repairing all the damage that it has caused within your body. It compromises your immune system and damages your muscles, joints, and nerves. It’s been 9 months since I started treatment and I am having more good days. But, I know that I still have a long road ahead.
It has been such a relief to finally get a diagnosis, but with a diagnosis comes a mix of emotions; Anger, sadness, grief, a sense of loss, hope and relief. I move through these feelings in no particular pattern, some days I am still angry and other days I am 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 am angry that doctors did not listen to me, they did not put my symptoms together and they left me suffering in pain. When I was first diagnosed, I wanted to write every doctor that I saw over the years a nasty letter. I wanted them to feel bad, to let them know that I was really, really sick and ask them why they couldn’t or wouldn’t help me. My desire to write those letters decreases a little bit each day.
As my body continues to heal from the damage caused by this illness, I also continue to heal emotionally. It sounds cliche’, but I can honestly say that I have changed in many ways…for the better. 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 and the ones 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 and who genuinely feel the same about me. 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.
Currently, I continue to receive treatment and I am starting to feel better. I spend my time working on growing my small business, Nurse Born Products an e-commerce site that specializes in selling products inspired by nurses. Nurse Born allows me to continue to connect with other nurses. I really enjoy working with my customers and networking with other nurse entrepreneurs. You can visit my website Here: Nurse Born Products
Thank you for taking the time to read my story. I would love to hear about your experiences in the comments below.