Butte County, CA
Infected: September 1995
Diagnosed: April 1996
Current health: “Doing much better but not cured, still on medication and fighting for recovery”
My hope is that one day Lyme disease will be treated quickly and correctly. -Shelby A.
Shelby Anderson, a courageous young student who has battled Lyme disease for over 19 years, shares her story and her struggles below. We first encountered Shelby last summer (2014) when she launched #Lime4Lyme — a revisit of the ALS Ice Bucket challenge, this time challenging friends, family, and classmates to pucker up and eat an entire lime to help create awareness about Lyme disease (see the inspiring story here).
Shelby Anderson: My Story
You never really know how quickly your life can change until it does. For me, my world fell to pieces nearly overnight, when I was eight years old. I had a seemingly perfect childhood filled with good health, sports, friends, and an amazing family. But this picture disintegrated quickly when I became ill with Lyme disease.
My story begins in September of 1995. I was 8 years old at the time and my life was great. I was very active in swimming, tennis, gymnastics, and soccer and I loved school, my friends, and my life. But I would soon find out that life can literally change in an instant. It all started with a very bad sore throat. After the sore throat continued to persist for more than a few days my parents took me to the doctor. As many might assume, the doctor said it was probably something viral and it should subside in no time. Well, it didn’t. My throat pain continued to progress and now the pain was accompanied by an excruciating headache. My headaches were so bad that I was crying out in pain and holding my head, begging for it to stop. Also, I was now hurting all over my body with the most severe pain that I had ever experienced. Something was not right and my parents knew it.
I was taken back to my physician and my parents were told again that it was just a bad sinus infection and it would get better. However, it didn’t. I continued to experience pain I had never known existed. Headaches were so intense I felt my brain would explode. I could no longer make it to school and I was unable to play all the sports that I once loved. One memory that will always stick with me is when I was on the soccer field and began to experience such horrible pain that my dad carried me off of the field as I was crying in agony. I was deteriorating fast.
Again I was taken back to the doctor and told that it was all in my head – that I was acting out in an attempt to avoid school. As one might imagine, this assessment didn’t go over well with my parents. By this point, along with the intense headaches, I was now having joint pain so severe that I was unable to walk and was writhing in agony. My body hurt so badly that I was unable to stand the slightest touch. I was also so sensitive to light, to the point where I was unable to be in a room with the blinds open. I was in so much pain that large amounts of pain medication were unable to keep it under control and my mother was taking care of me around the clock. My bed was moved into my parent’s room so that they could be there when I woke up many times at night crying out in pain.
My body hurt so bad that I was only comfortable when lying on an egg-crate, on top of my bed and sitting straight upright while I slept, in order to alleviate some of the pain of my horrendous headaches. My family knew they were losing me. I was soon admitted to a big medical center in desperation to figure out what was ailing me. A myriad of tests were done, from lab work to a bone marrow biopsy and a spinal tap. Residents walked in and out of my room daily, trying to figure out what was wrong.
While my bone marrow biopsy came back negative, there were clues of inflammation that were dismissed. In addition, a spinal tap revealed that I had increased intracranial pressure in my head three times the normal level. And yet no one could figure out what was causing all of my symptoms so I was sent home. Thankfully, my mother never gave up and began her own search at the library in a quest to figure out what was wrong with me. Through her research, she found a correlation between my symptoms and Lyme disease; and this began my fight to regain my health.
My journey began as we flew to New York to see a pediatric neurologist who specialized in Lyme disease. Soon I would begin high dose antibiotics and start my 19 year fight against Lyme disease. By the time of my diagnosis I had been seen by three pediatricians, two pediatric neurologists, an endocrinologist, two rheumatologists/immunologists, infectious disease, psychiatry, gastroenterology, pain management, hematology/oncology, and ophthalmology. And it took 6 months for a diagnosis to be reached. Throughout the course of my life I would experience many symptoms: headaches, joint pain, joint swelling, migratory joint pain, back pain, arthritis in my back, photosensitivity, sensitivity to sound, sensitivity to touch, Bell’s palsy, uveitis, petit mal seizures, fatigue, tinnitus, pseudotumor cerebri, and an overall loss of being able to be a normal kid, teenager, and adult. For a year and a half I was bedridden and in excruciating amounts of pain. There were moments in my life when family members and myself feared that I might not survive. There were moments that I was taken to the emergency room for fear that things had surely turned for the worse. Many times I begged for an ending to my pain and my life that was not worth living. Often the treatments made me so much worse that I was sure I would not survive.
Eventually I did start to make progress and by fifth grade I was able to attend school again for half days. I remember going to school with a pain pump attached and hoping I would be able to just make it through a few hours. By the time I was in junior high, I could go to school longer and things continued to improve slowly. Throughout my school years, I wasn’t able to attend school all day like my peers nor was I able to truly play all the sports I dreamed of playing, however, little by little, things improved.
Throughout the years from elementary through college, I was flown across many parts of the country and world – New York, Connecticut, Nevada, New Jersey, Texas, Maryland, Canada, and Mexico – to be seen by the best Lyme physicians as well as for a variety of treatments. All in all, I had multiple central line IVs for the 18 years I would be on IV antibiotics in a struggle to get well. This consisted of a Hickman, two Groshong lines, 4 portacaths, and more PICC lines than I can remember. I continued to try to resume as normal a life as possible by attending school and doing well, despite dealing with pain and living with an IV coming out of my chest or out of my arm. Often, I was on multiple antibiotics at a time, having several infusions a day, in conjunction with all of the oral antibiotics and supplements. I also would try many different experimental treatments such as hyperbaric oxygen, alternative medicine, and umbilical cord stem cells. While most of these treatments helped, it was not easy and often I was so sick that I did not think there was any way I would ever be able to make it through.
Today, I still deal with the coinfections related to Lyme disease and whether Lyme is still in my body I cannot be sure. I am thankful that I am healthy enough to have made it through college and into medical school. However, some days can be a real struggle. I still have joint pain and fatigue that limits me in ways that can be entirely frustrating. But I am determined to keep living my life in spite of the obstacles put in my way. Once I began medical school I decided that I could no longer go through with IV medications. Yet, daily I still take more pills than I can count and I try my best to pretend that I don’t feel the pain that I do. I am still fighting to one day be pain free and to be able to work and live like a normal person. I don’t really know if that is really in the cards for me however, but I sure pray that it is.
I hope that my experience with this disease will help bring awareness to those who don’t know how devastating this disease can be: education about how a bullseye rash is not essential to becoming infected (I did not have a rash), how hard it is to detect by a test, how it can result in chronic problems if misdiagnosed, and how to prevent others from ending up in my place. The controversy that surrounds Lyme disease makes diagnosis and treatment even more difficult resulting in many people living with chronic disease. My hope is that one day Lyme disease will be treated quickly and correctly when a person walks in with a tick bite or symptoms resembling Lyme disease. I hope for physicians to listen closely to their patients and treat them appropriately. I also hope for new treatments for those living with this disease and strength for those with Lyme disease to keep on fighting.
Join the cause and take the #Lime4Lyme Challenge!
Also, see this recent story by Ashley Gebb featured in the Chico Enterprise-Record talking about Shelby’s commitment and leadership with the #Lime4Lyme Challenge!
Shelby was recently profiled in The DO, a journal for osteopathic medicine, talking about her experience her passion to help better educate the public about Lyme disease.