This article was first published on the L.A. Edward's blog on May 1st, 2016. Most of the links on this post are informational, but a few are affiliate links to help maintain this website.
If there is one thing I want people with Lyme disease or other invisible illnesses to know, it's that you don't have to do this alone. This is my story of how I went from feeling lost, scared, and alone to finding hope in the Lyme community.
The doctor told me it was a muscle infection and that I needed to go to the emergency room immediately. I drove myself through an hour of Chicago rush hour traffic to the top hospital in the city. I thought, "If I am dying, they have the best chance to save me." It sounds dramatic, but the urgent care doctor gave me no information and the only knowledge I had of infections was that they can be deadly. When I got to the hospital, the ER doctor calmed me down with kindly reassurance and IV lorazepam. The doctors quickly got me admitted to the hospital for an MRI and awaited a biopsy.
Five days later, I learned I didn't have a deadly muscle wasting infection, but the doctors had no idea what it was. All I knew was I had a reactive "spot" on my spine and psoas muscle. It didn't appear to be moving quickly, so I was released with an appointment with an infectious disease doctor and an order to see my rheumatologist. Not the answer I had hoped for. In fact, it wasn't an answer at all, just more questions. One doctor mentioned in passing that a Brucella test came up positive, but said it was probably a false positive because Brucella is only found in 3rd world countries, and in unpasteurized dairy.
This experience was the culmination of six months of acute health issues on top of my over ten years of chronic conditions. It started with my right leg swelling up, then my inflammatory markers skyrocketing, then a diagnosis of anemia. I went to doctor after doctor, and no one had any answers. I had CTs, MRIs, a stress test, a colonoscopy, stool tests, urine tests, and more blood tests than I thought I'd have in my entire lifetime. I'd been diagnosed with two separate autoimmune diseases: Grave's disease for an overactive thyroid and Ankylosing Spondylitis for arthritis they found in my spine while searching for the cause of the leg swelling. How could a healthy 34-year-old have not one, but two autoimmune diseases with no known cause
At this point, my health related anxiety became unmanageable, and I had frequent panic attacks. WebMD and "Dr. Google" became my obsessions. There had to be someone else with my symptoms. I searched "psoas muscle infection" hundreds of times, hoping just one time I would find an article or patient in an online support group just like me. But there was no one else like me. Whatever I had I was the only one.
One time I searched 'Brucella test false positive.' Low and behold the search turned up 'Lyme disease.' I remember thinking, I guess that could be it.
I told my mom, and she said, "I bet that's what you have."
I trust a mother's intuition, so I asked the infectious disease doctor to test for it. "You don’t have that," was her immediate response. I didn't argue. I didn't ask why. I simply accepted it and returned to the lonely world of the 'undiagnosed.'
My family and friends were incredibly supportive. My husband spent hours listening to me ruminate my over my symptoms and self-diagnoses. I felt so alone, no one I knew could relate to what was happening to me. I learned support is different than understanding. I had all the support in the world, and I didn't take that for granted, but what I needed was someone who understood.
I found myself relating to the autoimmune disease community, which is a wonderful, supportive place. I changed my diet and my health improved. I thought I was on the right path. The autoimmune community gave me a temporary home, yet, I never felt like I fit in. Those with particular autoimmune disease always had a certain set of symptoms or positive tests. I kept posting questions on the autoimmune disease Facebook support groups and for the most part, they went unanswered.
It was autoimmunity that led me to functional medicine, the practice of looking for root causes of disease rather than treating symptoms. I found a functional medicine doctor in my area, but she focused so much on root causes, a diagnosis was not relevant to her. But It was to me, only she couldn't understand why. So I started looking for yet another doctor.
The autoimmune Facebook support group led me to an excellent integrative medicine doctor, one I continue to see to this day. When she first uttered the words 'Lyme disease,' I was so happy to have a doctor who was willing to walk down that path with me. She suggested I look into Dr. Horowitz's book, Why Can’t I Get Better? The minute I cracked that big orange book and took Dr. Horowitz's Lyme Questionnaire, I knew I had my answer. Each case study in Dr. Horowitz's book left me feeling less and less alone. Especially, when I saw the word 'Brucella' mentioned as a co-infection, it all made sense.
Months of searching for others with Brucella online turned up nothing, but when I put in both the keywords 'Brucella' and 'Lyme' all of a sudden, there were other people with this rare bacteria. These were average, everyday folks, who hadn't traveled to any third world countries or had consumed unpasteurized dairy. I had found my people.
In January 2016, I was finally diagnosed. When I think of the twists of fate that brought me to holding that report from Igenex in my hands, it was truly a miracle to finally have a diagnosis.
Like, many people with Lyme disease who don't remember the tick bite, I have my theories of how I got it. Maybe it was the elementary school camping trip, in which I came back with two or three ticks hanging on for the ride. Or maybe it was the year I spent meeting my husband in Wisconsin's tick country while we were a long distance between Minnesota and Illinois. It could've been anywhere and anytime.
After I had a name for my illness, I found the Facebook Lyme support groups. There I could ask as many questions as I wanted and someone always related to what I was feeling. I suddenly found people with Lyme everywhere online, Twitter, Facebook, Instagram. Their stories were my stories.
So, I decided to start writing and sharing about my experience, because I know how much it helped me read about others' experiences. I created a blog called 'Body Mind Lyme,' which focuses on healing the whole person, body, mind, and spirit. On it, I do a series called 'The Lyme Interview,' in which I interview other people with Lyme disease. My goal is to build connections within the Lyme community, so no one ever has to feel alone.
The final triumph came just a few short weeks ago when I reached out to another Lyme blogger in Chicago, and we decided to go out for coffee. We both realized it was the first time we had talked to another Lyme patient face-to-face. We spoke the same language. We didn't have to explain the words 'herx' or 'detox.' Our stories were similar, as with many Lyme patients. We both just understood. Together, we went to our first Lyme support group meeting and met even more Lyme patients in our area. It was an entire room of people who spoke the "Lyme" language. Each story different, but the same: misdiagnosis, misunderstanding, struggle, and hope.
For two years I thought I was alone. That no one else had this mystery disease and, therefore, the doctors were never going to find out what it was and help me. Then, I found the Lyme community and everything changed. For anyone who suffers from a chronic disease, the best advice I can tell you is to find your people. Even if you don’t have a diagnosis, there is a community for the undiagnosed. Never give up until you have your answers. There is always someone out there who can relate to your story. I wish I’d know that all along. This is one of the hardest battles you will ever have to fight, and you don't have to do it alone.
"While we are alive, till the very end, there is always another chance." - Jeanette Winterson
I'm Kerry (She/Her/Hers) and I am a licensed therapist, group facilitator, poet, writer, & speaker. This is a place to acknowledge and validate our suffering and trauma, while also learning how to turn toward aliveness and spaciousness.