I love stories. I love the idea of journeys.
But this journey is not a story I ever wanted to share.
I promised myself, however, that if I ever came to see the light, if I ever came through Lyme Disease and its related conditions, I needed to share it – just in case it helps someone on a similar road to feel a little less alone.
So although I have managed to condense it all into just a few words – please know, it has not been a quick ride.
But for whatever it’s worth, I hold this up to you, these flickers of light and life that I discovered in the darkness…
I started to experience mysterious symptoms in 2007, a year after our second son was born. I went through all the usual tests, but everything came back normal.
Over the next two years, my symptoms became distressing. I was deeply fatigued, unexplainably so. I experienced constant swollen lymph nodes, low grade fevers, achy joints, terrible headaches, nausea, and shortness of breath. I felt like I had the flu all the time. I saw many specialists, but there were no real answers. Ashamed and discouraged, I began to question if I was just imagining it all.
As a busy mom to two little boys – a baby and a toddler at the time – I became very good at hiding how badly I felt. I tried to hold it together on the outside, but on the inside, I was crumbling. I desperately tried all kinds of alternative treatments. Nothing seemed to help. A friend finally suggested that I see an infectious disease doctor, a Lyme Literate specialist, in New Mexico. Cautiously hopeful, I made an appointment. Dr. S carefully and compassionately listened to my story, ordered a dizzying amount of blood work, and diagnosed me with Lyme Disease, Chronic Lyme Disease.
I would soon learn that Chronic Lyme was controversial, and that within the medical community, there were varying opinions on the persistent nature of the bacteria and the accuracy of the diagnostic criteria set by the CDC. I would discover that treatment options were diverse, at times conflicting, prohibitively expensive, and risky. Also, it seemed treatment wouldn’t necessarily cure me – and that it would take a long time to feel better. In fact, I would have to get worse before getting better.
I couldn’t imagine feeling worse.
I felt like I had literally entered a maze. I had no desire for complication and controversy. I only wanted to make dinner and not fall over.
Yet I felt I had no other choice. I had to get better for my family. I underwent long term antibiotic therapy with some modest improvement — but stopped when I found out I was pregnant with baby #3.
My husband and I were scared of what this would mean for the baby, for me. But to our surprise, I started to feel great by the second trimester! We had our third child, a beautiful and healthy daughter. Finally splashes of pink joined the Hot Wheels and Batman caves in our living room. Life was busy and exhausting, but we felt complete!
In 2012, just months after our little girl turned two, I began to experience near passing out episodes.
I remember December 17, 2012 like it was yesterday. I ended up in the emergency room with heart palpitations, difficulty breathing and this intense feeling like I was going to pass out. I was released from the hospital and was told I simply had a panic attack.
In all my thirty-something years, I had never had a panic attack before. I truly felt like I was losing control of my life. I felt like a hypochondriac as symptoms continued full force despite my best efforts to address the “panic.” Why was my body so afraid? I stopped going places. Family and friends quietly wondered, is she having an emotional breakdown? I prayed and prayed. I poured over God’s promises in Scripture. I listened to a constant stream of Christian music and watched hours of sermons and testimonies. I sought out a counselor.
But the symptoms continued to be real. It got to the point where I couldn’t sit up in a chair. My heart raced at the smallest exertion. I just wanted to crawl out of my body.
I decided to re-treat for Lyme, but after a while, I was becoming uncomfortable with long term antibiotics– and I began to wonder if I needed to see my symptoms differently. I made an effort to see Dr. C, the director of cardiology at a major hospital, who specialized in dysfunctions of the autonomic nervous system. In that office visit, he made a clinical diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS), and deemed me “a classic patient.” I went home that day, did my own Googling, and found that many with POTS are misdiagnosed with severe anxiety.
Just for the record, POTS is a disorder of the autonomic nervous system that regulates involuntary things like heart rate, blood pressure, digestion, respiratory rate, temperature regulation, and more. With POTS, your body can’t adjust to sitting or standing up without a flood of symptoms. Stirring soup on the stove, for example, feels like running a marathon.
No one knows what causes POTS – and there is no cure per se, although some medications help some patients. Some believe pregnancy is the trigger; some say it’s a post viral response. And yes, some believe POTS can be caused by Lyme disease.
A Prayer of Trust
I was surrounded by so much love from family and friends and covered in many, many prayers. For that, I am so humbled and thankful.
But the turning point came when one night, in a fragile moment, I asked myself this question … how much do I believe God when He says to trust Him?
Let your hearts not be troubled nor be afraid. ~ John 14:27
Did I truly believe I could be free from fear? It soon became my heart’s cry to know God’s peace, no matter what my future held. And slowly, He began to answer this prayer, though not as quickly as I would have liked. Eventually, hope returned to my broken spirit.
It has taken nearly seven years to understand that wellness is not just about fighting infections and environmental toxins and eating super cleanly –it’s also a journey of trusting God to repair your spirit, to right your thoughts, to know His peace in your fears. Emerging medical science is seeing this more, that we are not just a bunch of cells and organ systems … our emotions and thoughts, and the condition of our spirit play a part in our wellness. As much as I yearned for physical wholeness, I realize now, I carried deeper wounds from my sins, pride, and fear.
Like many of you, I have learned to trust God through tear-filled eyes over the years. It’s not easy – but I’ve been reminded again that Christ always draws near to the broken who seek Him. He never forsakes us. He loves us more than we can imagine. He showed that by giving up His life on the cross, so that we may have a new life through Him.
God’s grace has truly sustained and brought me to a place of healing. Today I rely on natural therapies and a nourishing diet, and it has been doing wonders. Through all the triumphs and setbacks, I am living well again, and I’ve come a long way.
Thanks for reading my story. ❤