- CASE FILE
Chiari, Lyme, Chronic Fatigue, Elhers-Danlos, you name it -- too many diagnoses and no actual answers or way to move forward with my life.
ABOUT THIS CASE FILE
I started with mild/severe symptoms of fatigue and joint pain in middle school, as well as a dramatic, almost paralyzing spike in anxiety. These faded into the background as no doctor could explain it other that saying it was all in my head, they put me on Zoloft, and I learned to live with the pain and fatigue. I quit all the sports I was playing and missed months of school. By college, I was having shortness of breath, severe stomach pain, nausea, bloating along with all the rest. These again, all went mainly undiagnosed and just became my routine.
Then I when I was 26, I had two emergency surgeries within the span of a few months. One was an appendectomy. The other was due to scar tissue forming around the first surgical site that wrapped around my colon and strangulated it. I was in the hospital, experiencing organ failure as my colon turned black inside my body from lack of blood supply, for 36 hours before they believed there was something wrong with me, did some x-rays and rushed me into the OR. I was in ICU for two days and then sent home to recover.
But I never did. From that point on, my life became almost unbearable. My mom would say I looked like a cancer patient. For months after I couldn't eat anything without throwing it back up. It was living on small amounts of baby food and anything else I could find that I could make into already half-digested mush. My pain all over spiked, my fatigue/brain fog became disabling, I couldn't walk from one part of the house to another without it sounding like I had run a half-marathon. But on paper, I looked great. The only thing that was consistently abnormal in my blood tests was a rather low WBC. So they sent me to a hematologist who had just heard about this new and crazy thing called Lyme disease, which he thought he would test me for. Low and behold, I came back positive. It seemed to fit everything. I lived in Virginia as a child, and I knew I had been bitten by tons of ticks. I was elated — finally, a diagnosis. I even threw a huge Lyme Party.
But nothing got better. I went to see a specialist, and they started me on anti-biotics. I was on them for six months, and getting worse and worse (probably because I have no appendix to regulate my microbiome and oh yea, my colon died for a day and doesn't seem to work anymore). So my gut bacteria was destroyed, and I was a mess. I had to quit my job. I barely got out of bed. My stomach pain was a constant, my hormones started raging out of control, I broked out in terrible cystic acne, and my periods became severely irregular. Finally, I stopped all the treatment cold turkey, went to a gastroenterologist who helped slowly guide my digestion back in the right direction. And then to a functional medicine doctor who tested me for food allergies, of which I had dozens. I went on the autoimmune protocol diet to reduce overall inflammation, was put on a dozen or so supplements and a couple of prescriptions (they found I had hypothyroidism and possible PCOS) and began to live a semi-normal life again. And by that, I mean I could get a part-time job and go out every once in a while. I slowly learned how to manage my time, strictly regulating my activities to maintain decent energy levels. I was able to go back to acting, found a bit of energy for hobbies such as painting, and even get into a sport again — rock climbing.
Then, these past few years, my pain started getting worse, especially in my arms and hands. I was also losing a bit of coordination. I went to a doctor about this and after getting somewhat abnormal neural test results was sent for an MRI where they found I have a Level 0 Chiari Malformation. Google it. It's crazy. Anyway, that also ended up explaining a lot of my symptoms. Chronic brain inflammation (I had a SPEC scan back during the Lyme phase that showed this) as well as the pain in my arms, neck, and head. It could also explain the fatigue as it causes CSF flow issues.
So ok...is it Lyme? Is it Chiari? Is it Elhers-Danlos (something that was thrown around after the Chiari diagnosis). Is there any way to get my life to a point where I am not constantly worried about if I can or can't do an activity. Where I can go on camping trips, or do tough mudder, or long hikes, or any of the other hundreds of things my friends invite me to that I have to say no to.
The craziest thing is after all that explainging I have only just hit the tip fo the iceberg. Of all the tests, doctors, diagnoses, thoughts, prescriptions, supplements, diets that I have gone through.
This past year, I have just been working on not being so afraid, on doing and trying new things and just dealing with the consequences of days or weeks of debilitating fatigue or pain or nausea or you name it. But there is still a part of me that thinks; this can't be it. I can't just have multiple untreatable, barely understood diseases, and that be the end of it. It doesn't feel right. There must be some overarching thing going on, something that can be addressed. Or maybe I am just denial.