LYME STORIES: Mark Hopwood (Trumbull, CT)

Testimony of Mark Hopwood (Trumbull, Connecicut) Field hearing of the Senate Committee on Health, Education, Labor, and Pensions August 30th, 2012

I have been struggling with Lyme disease for more than three years. Before the onset of symptoms, I was an active parent, worked 12 hours a day at my own business, worked out 3-5 times per week, was a runner, played tennis and golf, and was an avid martial arts practitioner.

My symptoms started with dizziness and fatigue and escalated to debilitating fatigue, migraine headaches, heart palpitations, difficulty with small motor skills, delayed cognitive processing, and short term memory loss. I could not participate in normal every day activities.

I am married and have three young children. The youngest of whom hasn’t known a father without Lyme disease. I could not volunteer to coach a sport, teach my daughter to ride her bike, give piggy back rides, or carry a sleeping toddler from the car into their warm bed. When my daughter would bring home the stories she had written for her 1st grade class, my wife and kids were central figures, but I was always in the background, sick and in bed.

I am a small business owner who, during the most challenging economic climate in a generation, was forced to cut my hours in half and sometimes miss work for weeks at a time. I am the sole bread winner for my family. My wife has been out of the workforce since she became pregnant with my now 9-year-old son. When I did feel well, I had to dedicate almost all of my time to catching up on work so that I could provide for my family. In my desire to provide, the most important things a man gives to his wife and children were sacrificed – time, attention, and being ‘present’. Work always got the best version of me while my family always got the worst. Without a diagnosis and my health continuing to erode, my wife and I were preparing for the worst. We were trying to figure out how she could get back into the workforce while caring for three young children and a disabled husband.

I never had a bull’s-eye rash and I never found an embedded tick. I went to ten different doctors over an 18-month period before receiving the proper diagnosis. I was erroneously diagnosed with everything from a sinus infection, to depression, to a tumor. Looking back on it now, I am dumbfounded that so many doctors were so uninformed or misled about the symptoms, testing, and treatment for Lyme Disease. One doctor said, “You have as much of a chance of getting struck by lightning as you do contracting Lyme Disease.” Another doctor diagnosed me with anxiety and depression after a ten-minute visit during which he never asked if I felt anxious or depressed. The most damage came from a doctor who prescribed multiple courses of Prednisone, which provided temporary relief but ultimately caused the disease to accelerate its attack on my body. My wife became my primary care physician, doing research online, making appointments with two general practitioners, two otolaryngologists, an ophthalmologist, neurologist, cardiologist, homeopathologist, rheumatologist, and finally an infectious disease specialist. The infectious disease doctor was the first to suggest Lyme Disease and sent a Western Blot test off to Stony Brook Labs. He informed me, “Regardless of what the test shows, I’m still going to treat you for Lyme Disease because the tests are notoriously inaccurate.” When my test game back positive, I was told “You are one of the lucky ones. This will help with insurance coverage.”

Due to the fact that I am self-employed, I pay for private health care coverage. When I add the insurance premiums, co-pays, un-covered treatments, and medicine over the past twelve months alone, I have spent more than $30,000 out of pocket. This is in addition to the medical costs my insurance company has paid on my behalf.

It’s been 22 months since receiving the proper diagnosis and finding the right doctors. I have made tremendous progress but I am not nearly where I was prior to Lyme disease. With my improved health, my small business has regained its footing. More importantly, I can now shoot hoops with my oldest son, give piggy back rides to my youngest son, and I am now a central character in my daughter’s wonderful stories. However, each morning I awake wondering how well I will feel that day. I struggle to find balance when trying to playing catch-up on three years of lost time and opportunities at home and work. I still have a daily fear that my health will decline and I will revert to the shadow of a husband and father I was just a few months ago. Just days before writing this letter, I was in bed for three consecutive days, completely debilitated, without warning.

Overall, I feel blessed that I finally am having more good days than bad. However, as grateful as I am, I can’t help but wonder how different my life would be had my doctors been more aware of, or had a reliable test for, vector borne illnesses. If my first, second, or even third doctor had the proper diagnoses, my recovery would have only required a few dollars for 30 days of antibiotics. My children wouldn’t have to ask every morning, “How are you feeling today Daddy?” trying to gauge which version of their father they will get today.

The most frightening aspect of my story is that it is not rare. I personally know far too many people who have had a similar or worse experience. I am grateful that patients have been given a voice here today as most of the dialogue (or lack thereof) has excluded those actually suffering from this debilitating disease. For too long, many Lyme patients have been marginalized or characterized as hysterics. In my experience, long term Lyme patients are extremely well educated on the disease and in some cases more so than some doctors and medical board members. We have no institutional allegiances, no industry ties, nothing financial to gain, and no hidden agenda. Our only wish is for greater awareness, accurate testing, and effective treatments for Lyme Disease and related co-infections.

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