One in a hundred thousand

Milford native Noreen Case tells her story: After move back to the country, Lyme disease strikes

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My childhood was lived in Milford, and as an adult I visited my parents' cabin in the woods every summer, the better part of the sunny days spent out of doors, hardly seeing more than a couple of ticks, if any. So what's the scoop?

By Noreen Case
“Health is the greatest of nature's gifts. We take it for granted. It hangs on a thread as thin as a spiders web, and the smallest thing can make it snap...leaving the strongest of us helpless in an instant...”

Spring is the season that brings people back out of doors into the natural world, witnessing its beauty and taking part in its renewal process where everything comes alive. We yearn to make our environments fresh and colorful, we plant, decorate, grow delicious edibles in our gardens; we rejuvenate our bodies with outdoor exercise, and drink in all the resplendence that is life sustaining. Nature, the one place we could turn to while away our free time, to forget our problems, relieve our stress and heal ourselves — free of charge — is now becoming a problem itself and an expensive one at that.

Two springs ago I moved into a new home in Milford, my first home in the country since my youth. And after 30 years of nothing larger than a concrete balcony for a garden, I instinctively began spending more and more time outside, determined to become a staunch follower of Martha Stewart gardening prowess. I planted all of eight sunflower seedlings and four small tomato plants, and was proud. I failed to understand why people hired out lawn maintenance, as I found subtle satisfaction in the personal grooming of my new yard — and the scent!

Two months of joyous outdoor living, just when I was getting the hang of it, I fell ill. The fatigue and flu symptoms became suspicious when they continued beyond a week's time, and more so when I could no longer speak without coughing due to lack of air in my lungs. There were small odd-shaped rashes appearing daily on my limbs and torso, ones that I had phoned the 24-hour nurse hotline to inquire about and was told it was not Lyme as my rashes were not bull's-eye shaped. This bit of misinformation delayed my seeing a doctor until the 10th day, where I was immediately diagnosed with Lyme and given a three-week dose of antibiotics (Doxycycline). The severe migraines and insomnia present the first 10 days was immediately eased with the medicine, and recovery seemed imminent.

When the treatment was nearing the end and physical recovery nearly restored, I felt energized knowing I could resume my life. I had lost only about five weeks of my precious summer to illness, my children had just returned from their holiday, and I felt lucky. I sat out on my screened-in porch admiring the day with a smile...and then something went wrong. I felt a mood come over me from nowhere like a dark cloud had blown in, a mood in total opposition of my true happiness. I became angry and irritable, and I knew it wasn't my own doing. Later that day I was visiting my family and couldn't hold a conversation. I couldn't connect to the ones' I loved. It was then I realized, frightfully, that the disease had gone to my neurological system, considered stage III of the disease.

Still a daily presence
Though I had caught it early and had taken the standard prescribed treatment of antibiotics, the disease had cleverly progressed. Two years have now passed, and the disease has become a daily presence.

I recently read a statistical brief that illuminated one's chance of contracting Lyme from a tick bite. It goes like this: one-third of ticks carry Borrelia (Lyme). Only one-tenth to one-twentieth of those bites leads to Borreliosis stage I (rashes and flu); only one-thirtieth of the latter leads to stage II (joint aches); and only one-one hundredth or less of that category leads to stage III (neurological symptoms). That translates to people (like myself) who contract Lyme from a Borrelia tick and end up with stage III neurological symptoms being one in 100,000 of symptomatic Lyme cases. I am startled at this low risk factor given that many, many people in the support groups I attend are stage III cases, and more perplexed that with these low risk factors how Lyme has become the number one growing new disease in America. I can only hypothesize that there must exist an overwhelmingly abundant tick population in our northeastern region of the US to cause the epidemic-like proportion of cases here.

If only there were a way to determine the population fluctuations of ticks, say, over the past 30 years (since the bacterium was first isolated in 1982) to determine their level of increase. I say increase because the frequency of their appearance is surprising. For example, last summer, my cat, Nala, would come home with as many as 10 ticks on her fur on a given day; and I once risked a game of ball throwing on my lawn and after just 15 minutes a tick had found its way onto my leg. In another case, my brother-in-law went fishing down at the river bank and returned home with over 12 ticks on his shirt. We must all agree this is not the norm, even in this region.

Is it apathy or denial?
My childhood was lived in Milford, and as an adult I visited my parents' cabin in the woods every summer, the better part of the sunny days spent out of doors, hardly seeing more than a couple of ticks, if any. So what's the scoop? I, for one, would like to know, would like to be more informed by those who would be responsible for informing the public of potential health threats. I am shocked by the lack of basic public awareness and dissemination of community efforts to quell such a threat. Is it a lack of concern, or denial? Is it purely an economic avoidance?

One wonders. I had the opportunity to live overseas in a tropical region where mosquito-borne dengue virus caused Dengue Fever. Since mosquitoes are everywhere outdoors and can't be avoided easily, the government had executed a successful pesticide program where each housing estate was sprayed twice weekly. This kept the numbers of Dengue cases to a minimum and the community viewed the government effort of protection very positively. Our northeastern regional states, from Virginia all the way north to Maine, have the highest concentration of Lyme with proportions in the United States that appear epidemic, yet no prevention program has been rolled out. No one is even talking about it, until you talk about it...then everyone knows someone who has the disease.

While we anxiously wait for the scoop — and for a cure — we need to focus on the more immediate concern, which is what to do if we become one of the percentages of those infected by any stage of Lyme. As there remains no cure for Lyme, and as the vaccine was taken off the market due to dangerous side effects (and that it didn't work), handling the disease is left to experimentation — both by the medical community, who are divided as how to approach the disease, and by the patients themselves. We have taken modern medical advancement so much for granted that to face a new disease that baffles the medical community is to travel down a very scary path. It humbles us and shakes our core of existence as we think back to our ancestors who, prior to the advent of modern medicine, surely faced similar trials. The last major disease epidemic of my lifetime was just was 30 years ago with HIV/AIDS; and as doctors then struggled to find a cure and patients suffered and sought their own methods of experimental treatments, the public sector could at least feel safe in knowing how to avoid the disease. In the case of Lyme, for people to restrict themselves from the greater outdoors is not so easy, making prevention much more challenging.

It is in this light of importance to be better informed of our ever shifting natural landscape that a group of concerned individuals have set up a local task force to ensure citizens are well-versed on how to maintain their outdoor lifestyles our beautiful area has to offer, while being equipped with a good level of awareness and basic protective procedures. The Pike County Lyme Disease Task Force was established in 2013 with the mission to do just that. Run by a group of dedicated volunteers who combine their experiences, knowledge and research, the task force seeks to broaden community-wide awareness by sharing their informational resources through outreach programs, workshops and support groups. They also strive to work towards the successful achievement of a community tick mitigation program. For more information on the task force, please access their website at www.peec.org/lyme or call 570-503-6334.

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