Untreated Lyme disease: 2 years of hell
By Erik Nivison, HLNtv.com
August 29, 2013 -
(HLNtv.com) -- For most people it starts with a telltale, bulls-eye rash and flu-like symptoms. It then develops into neurological problems, such as numbness in the limbs or facial paralysis, leaving the patient in excruciating pain.
About 300,000 Americans each year are infected with Lyme disease, according to the Centers for Disease Control and Prevention. That number, the CDC reported last week, is about 10 times higher than they had previously estimated.
But what if you never get the rash? What if you blow off your symptoms as a bad case of the flu?
I spent the first 30 years of my life in New England, where talk about Lyme disease was prevalent. When I was little my mother would have us slather on the DEET before we went outside made sure we had long pants and socks on, especially when we'd play in the woods. She'd check us for ticks and remove any she found with a match and tweezers. Problem solved -- no rash, good to go.
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Then in 2006 I moved to Atlanta, and Lyme disease faded from my mind. Common in the Northeast, Lyme disease is found less often in the South. The year I arrived, eight cases were reported in Georgia, compared to 1,788 in my home state of Connecticut.
I am now one of the cases for 2013.
At least once a week, my muscles start to twitch uncontrollably; they tighten so much my fingers turn into fists. I can feel my fingernails digging through my skin. My heart races out of control and my blood pressure skyrockets.
My doctor holds me down, consoling me, telling me to breathe because he has no idea what's going on. My face is numb, and it feels like I have the flu. I have trouble breathing. The pain is so bad I start to cry.
A few years ago I noticed a pain radiating down my leg, starting from the small of my back. I had had artificial disc surgery in my spine a couple years prior and thought this new pain was due to scar tissue from the surgery.
Then I went to work one day and lost all feeling in my legs. My arms were tingling and it felt like I had pins and needles everywhere in my body.
I went to the ER, and that night, I became a medical mystery. I had a full body MRI (the first of many) and by the end of the night I had seen at least five neurologists. They chalked it up to my previously damaged spine, gave me some painkillers and sent me on my way.
This sequence of events would continue for another two years. Each time the diagnosis would change, but the end result would stay the same. I saw a neurologist, a neurosurgeon, an orthopedic surgeon, a urologist, a neuro-urologist, a kidney specialist, three different pain doctors and a pain psychologist.
My diagnoses varied from heart disease to polycystic kidney disease to Lupus. I had many different neurologic disorders -- fibromyalgia, psychosomatic disorder and my personal favorite, neurosyphilis -- according to these doctors.
I had multiple brain MRIs that revealed lesions in my brain; these were due to my high blood pressure, the doctors told me.
I continued to get little headaches that would come, last for a minute and disappear. My legs would lose feeling and everyday it seemed like I was getting weaker.
I would get Bell's palsy -- a syndrome where part of my face would be paralyzed and slump to one side. My body would twitch uncontrollably, and then tighten up to the point where I thought my bones would break. I was told my pain was all in my head, that it wasn't real.
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I should have been thinking about Lyme disease. I know several friends and family members who have contracted the disease. But I had moved to South. I didn't think I had been bitten by a tick. I had no rash.
Still, research about my symptoms online showed late stage Lyme disease made sense. During an appointment with my neurologist last month, after another trip to the emergency room, I asked: What about Lyme disease?
They tested my blood, and three days later the results came back positive.
I was devastated. Had I only thought of it earlier, or had my doctors only thought of it earlier, the bacteria that manifests itself as the disease could have been eradicated.
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In the medical community, chronic Lyme disease is a controversial diagnosis. Lyme disease is usually treated with medication for no longer than 28 days. But for some, even when the bacteria that causes the disease is gone, the symptoms still remain.
The CDC calls it post-treatment Lyme disease syndrome.
"Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2-4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches," its website states. "Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection."
The CDC goes on to say that no studies have proven antibiotic treatment past three to four weeks leads to any improvement in the patient. Some doctors disagree. Since there is still so much we don't know about the disease, the controversy ensues.
In the next few months, I will see what relief my treatment will bring. My only hope is that by sharing my story, others won't suffer the same fate as me.