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Story 61

© Image by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

I hope that one day my life will not be centered around being sick. I am 25 years old, and that is all that I have ever known. My name is Michaela, and I have chronic Lyme disease. Ever since I can remember, I have known that something was wrong with me. I can go back to being in elementary school, and feeling like I was standing on the outside of life, and all that was good in it, looking in and wanting so desperately to be a part of it. To this day I still feel like that life, that wholeness and joy, are simply right out of my grasp.

As a child, I was always sad. I started to write dark, tragic poetry when I was ten years old, because it was the only way to express how I felt on the inside. I never had any friends, because no one wants to be around sad people, especially not when you’re a kid. I began having mental health issues around that same time, developing obsessive compulsive tendencies and paranoia. My parents didn’t know what was causing my behavior, so nothing was done to address it.

As I got older, and hit puberty, I started to develop more and more unexplained symptoms. When I entered high school, I suddenly gained a bunch of weight, and my face became super red, round, and swollen, and my eyes got squinty and I always looked like I had just woken up. Of course, as a teenage girl, and especially one that had grown up in the dance world with low self-esteem, this was an absolute nightmare. In high school, I suddenly weighed about 40 pounds more than all of my friends, and I had no idea why. I had never been an overeater, and I was always extremely active, dancing most days of the week, and loving to be outside.

Naturally, feeling devastated and hating my looks, I developed an eating disorder. My body would not respond to anything that I was doing, and I began to attempt “fasts” and experimented with purging. Over the years, my body continued to fight me at every attempt to lose weight and feel good about myself. I became obsessed with food and exercise to the point that I never would take a day off of running, and truly thought that if I didn’t run, I couldn’t eat. To this day, I still struggle with this. I have tried every diet and exercise routine known to man, and have become more and more obsessed with looks and body size, to the point of it inhibiting my ability to function at work, school, etc.

I also have experienced extreme fatigue, terrible joint pain, headaches, insomnia, water retention, hot flashes, horrible PMS, allergies, and panic attacks. I often feel like I am being possessed by demons that want to destroy me, and make me destroy myself. This is just the tip of the ice berg, and it is very difficult to put into words how it feels to wake up every morning on the verge of tears, wishing you would die, because life was nothing but pain and hopelessness.

I have dealt with extreme depression and anxiety for my whole life, and have felt like I was incapable of being a human, because I felt so alone. I went to doctor after doctor for years, trying to understand what was causing my physical, mental, and emotional symptoms, that made it impossible for me to have a normal life.

Every doctor I went to told me nothing was wrong with me, and that it was in my head. I was prescribed anti-depressants so many times that I lost count, all the while knowing that I didn’t just have “clinical depression”. I KNEW there was more. I KNEW that the way that my body had been malfunctioning wasn’t in my head.

I experienced horrific varying symptoms such as the ones I’ve mentioned along with others through the years of college, making me feel entirely alone and like I would never belong anywhere, and preventing me from making friends, dating, or performing up to my potential in any aspect of life.

About two years ago, things got way worse. After many years of fluctuating symptoms, suddenly I always felt horrible. Suddenly my body progressively started to swell up. It started with my face, and then moved to the rest of my body. It got so bad that I couldn’t fit into any of my clothes, and didn’t recognize myself at all. I became increasingly sensitive to all foods and substances, I lost all of my stamina to exercise, and had no energy or desire to even be around my family. I would go to school or work because I “had to”, and then I would come home and lay in bed and cry. Every single day. I had lost all hope or will to live. I experienced constant thoughts of suicide, and saw no light in life or end to the symptoms.

Again, I KNEW something was wrong. I sobbed and wailed and tried to explain to everyone in my life, including the doctors and specialists I went to, all with no one believing me. Even my family, who have always been my biggest supporters and closest people in my life, didn’t believe me. I became a Google-freak, desperately trying to figure out what could possibly be making me so sick. I went down hundreds of rabbit holes of self-diagnosis, including Hypothyroidism, Cushing’s Syndrome, Cancer, Brain tumors, etc.

I still had hopes and aspirations for what I wanted my life to be, but thought I would never be able to have any of those things because of being sick, and not even knowing why.

I felt isolated in every context of the word, and didn’t know anything different.

Last July, at my lowest and most desperate point, my mom found a doctor that specialized in mold sickness, which was what my most recent self-diagnosis was at the time, due to growing up sleeping in a moldy basement room. When I went to this naturopathic specialist, I was so beaten and broken down that all I could do was cry when she asked why I had come in. My mom started to explain to her what she could, and then I filled in the gaps to the best of my ability.

She acknowledged that I did have a mold-exposure issue, but after hearing my story and asking me a few diagnostic questions, she instructed me to go get a CD-57 blood test, to see if I had Lyme Disease. She stated that 80% of patients that came to her desperate for answers had Lyme unknowingly. At this point in time, I had no idea what Lyme even was, let alone the devastation it can create in one’s life.

She started me on some supplements after completing an extensive urine test, indicating that I had no mitochondrial function whatsoever. And then, two weeks later, I found out that I did have Lyme, and that my blood test number was so low, that it indicated that I had had Lyme for at least ten years.

She started me on some intense herbal therapy, and within a month or so, I started to notice a difference. The swelling started to go down. I started to fit back into some of my clothes, and felt like I could breathe again. I started to smile again, and wanted to be around people a little bit more. I finally had a little bit of hope.

Since then, I have had constant ups and downs throughout my treatment, and have had days that have felt so low that I fall back into that place I was before getting diagnosed. But I have to continuously remind myself that healing is not linear. And keep reminding myself how huge it is that I have a diagnosis finally, and AM treating it.

I have done a tremendous amount of research about Lyme since being diagnosed, and understand my life now in ways that I never thought possible. I now know that every case is different, and different treatments work for different people. I also know that it can take a long time to get well, especially when you’ve been sick for as long as I have. I have learned that the longer you have Lyme, the more complex and progressed it becomes. I know that I have several co-infections, and that every single organ and system in my body and brain has been compromised due to the late-stage of Lyme that I have been in.

I AM healing, and as hard as getting through one day often can be, I am extremely grateful that I know why, and that I am in the process of recovery, after a lifetime of misery with no answers. I know now how many undiagnosed cases of Lyme there are, and it absolutely sickens me that there is such little knowledge or awareness of this life-destroying illness.

Although it is and has been an extremely painful, difficult road for me, it inspires me to fight for this cause in any way that I can. I have never been so passionate about anything, and I will do whatever it takes to help spread awareness about Lyme Disease.

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