I’m sure some of you can relate… When you are diagnosed with Lyme disease you finally feel happy because you have a diagnosis but then you are hit with the reality that not very many people or physicians actually understand what you may be going through. Its daunting, confusing, and an emotional roller coaster. I remember when I had my first ‘stigma experience’ with Lyme disease. I was 16 years old coming home from my first doctor’s appointment in Philadelphia after months of trying to figure out what was wrong.
“Rachel…Rachel.”
I opened my eyes to see my mum peering over the seat at me. My father was outside pumping gas. “Rachel, the doctor just called us after seeing your EKG. He said we need to take you to the nearest ER immediately.”
“No, I don’t want to.” I tried to tell her. I hated the hated the hospital. I was there so many times before and they never could figure out I had Lyme disease in the first place. But my voice was coming out in short gasps and it sounded as if I couldn’t catch my breath. It was highly ineffective.
“Honey we don’t have a choice,” Your blood pressure is only 69 over 52 and your heart rate is 32 beats per minute. We need to get you help.” It was late when we arrived in the ER. When my father carried me in a nurse rush over to me, patted my arm saying, “Such a pretty girl.” Another nurse came over with an IV pole, “Your so beautiful, where did you learn to do your makeup like that? You look like a model.”
It felt a little creepy to have them so focused on what I looked like when I was lying there dying. I wanted to know what was going on with my heart rate, my blood pressure, and why I had a raging fever of 105 degrees. Another nurse came in, asking my parents to please leave the room. “You must pay a lot of attention to fashion magazines, huh?” I had no idea why they were asking me such weird questions. I didn’t feel well and couldn’t even think straight. The nurse walked out acting annoyed. My mum walked in with the nurse behind her. “Mrs. Long, when girls come in in this kind of condition, it is important that the parents take part in the intervention. Eating disorder are extremely serious, Mrs. Long, the nurse continued. You cannot ignore it any longer- all the classic signs are there and your daughter would benefit greatly from one of these treatment programs.” The nurse handed my mum a stack of papers. My mum looked at her shocked. Mum informed them that I just tested positive for Lyme disease and had just began antibiotics. The nurse left the room then my dad entered. Dad told us the doctor informed him that chronic Lyme disease doesn’t exist. My mum looked at my dad appalled and then at me.
Even today, the CDC reinforces the idea that two weeks of oral antibiotics are all that is necessary to cure Lyme disease. As a result, many doctors have concluded and are taught, that more serious complaints blamed on Lyme are more likely some form of psychiatric disorder rather than a medical one.
The CDC does acknowledge now that “in a small percentage of cases, these symptoms can last for more than six months. Although sometimes known as post-treatment Lyme disease syndrome. But to be fair, not much is actually known about Lyme disease. There is some speculation that it is a new biologic introduced to the environment that’s to the very insecure nature of a place called Lab 257 located on Plum Island.
Lab 257 was created during World War II as a research facility into biological warfare, specifically biologics that could be used against a nation’s livestock. The secrets of this lab have been examined in a book called Lab 257 by Michael Christopher Carroll if you’d like to read more details! What’s important to my story is the relationship Carroll finds between Lab 257 and the growing numbers of Lyme disease cases in the United States beginning in 1975 on the East Coast just a few miles from the lab itself. According to Carroll, there are many instances of gross negligence in biosecurity of the lab as well as cases of workers becoming sick with strange illnesses. Because the government did not want to admit this lab existed or what it existed for, the papers revealing its purpose have only recently been declassified and specifics about the illnesses associated with it have been limited, poorly reported, and not well researched. It is easier to deny the potential serious nature of the disease than to admit that a dangerously insecure biologic weapons lab exists just off our shores.
Since most cases of Lyme disease caught early can be effectively cured with two weeks of oral antibiotics, medical schools tend to teach their students that chronic Lyme disease is a psychiatric condition rather than a medical one. The only doctors who tend to take it seriously are the doctors who have experienced it themselves or among their loved ones.
We were at the hospital emergency room for a few hours, but not once did a doctor examine me. No one asked me about my condition, whether it was Lyme disease or my eating habits. They kept talking to my parents about how important it was to get me into a treatment facility for anorexia immediately. In spite of the fact that my heart rate was still dangerously low, ranging from 28-32 beats per minute, the emergency room sent us home around midnight with nothing more than the paperwork about how to admit me to a nearby center that specialized in eating disorders.
Mum and daddy protested of course and kept trying to get the medical staff to understand that the Lyme disease specialist in Philadelphia had insisted I be rushed to an emergency room immediately. They emphasized how low my heart rate was and my fever. I was terrified. Just hours ago I had hope that a doctor was finally willing to see me and take on my case in Philadelphia and now back in my hometown they took my dying body as a joke and my case so lightly jumping to their own conclusions. I thought for sure I was going to die before the morning came.
It broke my heart that a doctor, a member of the medical profession dedicated to caring for the ill and taking an oath, neglected a young girl so completely. I tried to keep myself awake most of the night, trying to keep my heart beating through sheer force of will. That was one of my longest nights ever. As I lay there on the couch, wondering which breath could be my last. I cycled through a range of emotions. I was heartbroken by the doctors, and angry that a silly doctor signed my death warrant.
While I was replaying the night over in my head, my poor mother was replaying the last several months in hers. She was examining how we started our own healthy garden, wondered if the weight loss I had were actually due to food allergies I developed, etc. Thanks to the doctor’s carelessness and neglect, he had sown seeds of doubt in my mother’s mind and created a division among us just when we needed it least.
There’s a definite stigma when Lyme disease is put on your chart. Depending on the doctor’s experience with it, you either became a subject of suspicion or an object of interest. Although I would rather not have to deal with the stigma at all, I was always happy when a physician actually took an interest in my case and didn’t label me falsely.
This stigma is what truly drives me in my wellness clinic. I never want a person to feel labeled, crazy, or insecure about how we will work together to get them feeling better. Let’s end the Lyme disgrace in all communities.