This week Vestal’s 21st Century Classroom is celebrating week 3 of Freebie Friday’s in January. This week’s freebie is now one of my favorite products in my store because it is aimed at bringing awareness to something that has flipped my life upside down. I mention Lyme disease frequently here, on my blog, but I have never gone into the details of my story. Now, I am excited to share a summary of the past 5 years with you and hope my story can help someone who may be on a similar journey.
In May of 2010, I suddenly felt very ill. I was exhausted to the point it was difficult to stay awake in social settings, I very quickly lost 15-20 pounds, may hair was falling out like crazy, and my knees constantly ached in a way I had never felt before. I went to my primary doctor, who was certain I had a thyroid disorder because thyroid problems run rampant in my family. She was so shocked when the test for thyroid came back negative that she tested me two more times, but each time it came back negative. So, she attributed the symptoms I was having to stress since I was graduating from college, moving to new a state, and starting my first teaching job.
A year went by and I was still feeling the same. I went back to see my doctor and, because I had a thyroid test that once again came back negative, she referred me to an endocrinologist who ran several tests that also all came back negative. The endocrinologist referred me to a rheumatologist to be tested for arthritis but that also came back negative. This started what would become a four year cycle of being referred to specialist after specialist (13 total), none of which were able to provide me with any correct answers. During those four years, I was misdiagnosed with lupus and arthritis but the medications either did nothing to help or made my symptoms worse. Various specialists discussed possible MS, fibromyalgia, and connective tissue disease but those were all ruled out.
All the while, my symptoms kept getting worse and new symptoms were beginning to develop. I started getting chronic ear infections that would return as soon as I stopped taking antibiotics. I started getting frequent headaches and noticed I was becoming increasingly forgetful. My hair continued to fall out by the hand full and my nails would sometimes crack and fall off. At the age of 26, I began relating to women going through menopause in that I had frequent bladder leakage and would have to wear incontinence pads to get through the work day. I continued to lose weight, even though I was trying to gain weight, and weighed less than 100 pounds. I barely had energy to get through the work day and found myself starting to fall asleep during meetings. I was able to do little outside of work because I knew I needed to spend those hours resting so that I could work. The aches I had in my joints got worse and those aches spread to all the joints throughout my body. As a teacher, I was on my feet most of the day and there were several days I would sit in my car, at the end of the day, and cry because I was in so much pain.
In 2012, my mom told me I needed to ask my doctors to be tested for Lyme disease. It was affecting many people in the state where she lives and, since I make frequent visits to see my family, she felt it was possible I could have it too. I brought it to the attention of 3 different doctors who all told me that could not be it. They each said they had run a lot of tests already and Lyme is a very uncommon disease. I even asked one of my doctors multiple times about Lyme, but she always stated it wasn’t a possibility.
By May 2015, as the school year rolled to a closed, I was beginning to question whether I would be able to return in the fall for another school year. I had lost the stamina to make it through a day of teaching and was afraid others were beginning to notice. It was difficult to talk with supervisors and colleagues about the things I was experiencing. Like most doctors, I felt like they all looked at me as though I was just a hypochondriac. At this point, my body was crumbling but my spirit was starting to crumble too.
The week after the school year ended, I was at a Bible study. I asked for prayer concerning my health and as I described some of the symptoms, one of the group members suggested I be tested for Lyme. I told him I had already asked my doctors about it and they all had said no. He strongly encourage me to look further into it as his mother had died from Lyme disease and he felt my symptoms closely resembled some of hers. He explained to me that Lyme is a controversial disease and doctors had been reluctant to test and treat his mother.
When I got home, I immediately began researching Lyme and realized it was indeed a controversial disease. Everything I read said it is essential to see a Lyme literature doctor (LLMD) to be tested and treated using the correct methods. It took some time but I managed to find a LLMD 2 hours away from where I live. I was able to schedule an appointment and, to my amazement after 5 years of searching for answers, this specialist knew immediately that I was suffering from Lyme. The tests came back a few weeks later and confirmed the doctor’s suspicions about Lyme. Even worse, she found I have six additional tick borne diseases (Babesia, Bartonella, Tularemia, Parvo, Fifths Disease, & Mycoplasma). It was not until that day that I learned a person can contract a whole lot more than Lyme from a tick bite.
I have been in treatment for six months and it has been a rocky road. Since Lyme is such a poorly researched disease, not many medical advances have been made in the form of treatment. The current recommended treatment causes the patient to become much sicker before they are able to get better and it can take several years to get to a stable place. I am in so much pain some days that I am bedridden and unable to walk. It can be frustrating but I am thankful to finally know what has been going on for five years and to be on a road to recovery.
Lyme is the fasted growing disease in the United States. 300,000 people were diagnosed with Lyme last year and many researchers suspect there are just as many people with the disease that are undiagnosed or have been misdiagnosed. Unfortunately, many people including doctors have not been properly educated about the disease and how to treat it. It took me years, and increasing sickness, to get a diagnosis. If Lyme is caught quickly, it can be treated easily but after about a year without proper treatment it can become a chronic condition. Lyme can’t necessarily be stopped but it can be easily discovered and treated with education about the subject. Since I have been diagnosed, some of my teacher friends have asked if I have any materials they can share with their students in reading and/or science classes. I have been able to find few resources to educate children on the topic and have put together this freebie as an effort to begin a conversation about Lyme with children. In this freebie, you will find a close reading passage and comprehension questions about Lyme disease that have been aligned with CCSS and Virginia SOLs. There is also a pre-test to see what students already know about Lyme disease. I hope my story can help others find answers and that we can work together to educate more people able Lyme so that it can be quickly identified!