My Lyme story is a long one, spanning at least 15 years. Because of it’s length, I’ve divided it into two posts. I’ve never shared the whole story, and it’s a little intimidating to share!
I hope sharing my story will help others get correctly diagnosed, and treated by a Lyme literate doctor. Many Lyme patients are told for years they have other health issues, when in fact, they do not.
This must stop!
I want to do what I can to keep that scenario from being a common occurrence. Correct and early diagnosis are key; that would have kept me from having a Lyme story. Believe me, I’d rather that have been the case!
Alright, deep breath……here’s my story!
I wish my story wasn’t this long.
The sad thing is, most Lyme stories are like mine. Years upon years, with doctors upon doctors, who misdiagnosis them, or say nothing is wrong. I found out I had late stage Lyme Disease in March 2012, after an intense, two-year search for answers.
In reality, my search, and symptoms started many years before. For a several years, I stopped searching. I felt okay most of the time, and all the doctors I’d seen for various symptoms couldn’t find anything wrong with me.
The beginning of my story started in the 80’s when I believe I was unknowingly bit by a tick. A tick gave me Lyme Disease, and two co-infections, Babesia, and Bartonella. I never remember being bit, and I certainly didn’t get the bulls-eye rash that is “supposedly” a tell-tale sign.
One thing I remember was playing in the woods, a lot. My sister, the neighbor kids, and I had forts in the woods, we walked around in the woods, and we had a swamp on part of our property. I was always looking for tadpoles in spring, the perfect location to get bit. Ticks like warm and humid environments.
You’re probably wondering, how do I know I got infected as a child? Well, the lovely parasite I have, known as Babesia, is the East coast variant. Since I grew up in Michigan that’s confirmation for me.
I think my very first symptom of the bacterial, and parasitic invaders was my shortness of breath. I’ve never liked running, it was always hard for me to breathe. I remember having to run a mile for gym class in 6th grade.
I couldn’t do it.
A healthy, 11-year-old girl couldn’t run a mile! This scenario would repeat itself throughout my childhood, adolescence, and adulthood. Every time I tried running, it was extremely difficult to breathe.
I moved to California a few months before my 21st birthday. I was in school part-time, working full-time, and rarely had downtime. Since moving, I had cycles of headaches, stuffiness, and the lymph nodes in my neck were always slightly swollen. I went to my primary care doctor often and explained my symptoms. She said it was “sinusitis”. I regularly relied on DayQuil to make it through the day. I repeatedly told her about recurring pain from the base of my skull that continued down the right side of my body. She referred me to a neurologist, who of course, found nothing wrong.
The next several years were a busy and fun time. I learned to live with the weird symptoms that came and went. I met my a guy, who by the grace of God, would become, and still is, my husband. After being married a few years, we bought our first home, found a good core group of friends, and both enjoyed our work. We traveled often to visit my family, and even traveled outside the U.S. a couple of times. Something I never thought I’d do!
During that time, I continued to experience cycles of the symptoms I had for years. Then, cycles of new symptoms started. Every time new symptoms started, I’d tell my doctor. Sometimes, there would be a explanations.
I was told I had a heart murmur, Mitral Value Prolapse, a ganglion cyst, and eczema. My extreme shortness of breath, drenching night sweats, and rashes, had no explanation. The shortness of breath affected my ability to hike, and bike. Walking, or biking up any size hill made me gasp for air, struggle to breath, and I’d need to take several breaks. It was discouraging!
We’d been married six years and thought it was a good time to start a family. We both had always wanted kids, and were excited about the next stage of our lives. After two years trying to get pregnant naturally, this young, “healthy” women wasn’t pregnant. Reluctantly, we decided to explore other options for starting a family.
We began with six rounds of Artificial Insemination, and then moved onto five, grueling rounds of In-Vitro. During the pre-testing phase, the doctor ran some tests to check my immune response. One test said my immune system was over-active. The doctor recommended immune therapy called IVIG once our embryos were transferred to me, he hoped it’d help my body accept the embryos.
During our last attempt, our embryos tested “genetically perfect,” and I still did get pregnant. The doctor was shocked it didn’t work for a young couple like us. He suggested we try again, using an egg donor. His best guess, (yes, that’s what he said!) for the recurrent failure was my egg quality, even though hormones were normal, and our embryos were “genetically perfect.”
Instead, we took a much needed one year break. My husband was finishing his last year of college, and we had no more money for fertility treatments. During this break, I got terrible acne, and melasma which caused ugly, dark, irregular, hyper-pigmented spots, to appear all over my face. I tried new skin care regimes, and major dietary changes, nothing helped clear my skin, the acne and melasma got worse.
After In-Vitro, it seemed every week new symptoms began to show up. I had mild to moderate knee pain that was so bad sometimes I didn’t want to walk. I stopped wearing heels to work, and stopped playing tennis because I thought that was causing my pain.
I had random swelling in my ankles, and for no apparent reason, terribly, itchy rashes appeared on my chest, and neck. They’d appear one morning and be gone in a few days, just to return 30 – 60 days later.
My neurological symptoms increased. I had difficulty concentrating, I mixed up words, my short-term memory was horrible, and I felt constantly on edge. Tasks I’d done at work for years became difficult to complete, or understand.
I often felt like my brain was “broken.”
Even though I followed a strict, all organic, extremely healthy and nourishing diet, my digestion was a complete mess. Sometimes even though I was hungry, I didn’t want to eat because no matter what I ate, I get severe stomach pains.
My self-confidence was at an all time low, and I felt like my body was falling apart even though I was only in my early 30’s! My job was stressful, so I attributed things to stress, or “getting older.”
The awful, multiple, disappointments of not getting pregnant, plus all of the unexplainable symptoms motivated me to looking for an answer. My gut told me something bigger than “infertility” was the culprit. It would still require more searching, but eventually I got my answer.
That’s the first half of my long journey. Thank you for taking the time to read it. Click here for the second part..