Lyme disease still mystifies the medical world, while patients suffer


“This small vile creature (the tick) may, in the future, cause the inhabitants of this land (the present-day United States) great damage unless a method is discovered which will prevent it from increasing at such a shocking rate.”

-Pehr Kalm, 1754,

Memoirs of the Swedish Academy of Science

I wouldn’t want to trade the country life for anything, but I find myself looking at the woods and fields, the deer and birds and other wildlife we’ve always enjoyed, in a different light.

Within the past few weeks I have found myself once again searching for answers to this horror called Lyme disease. My 15-year-old son ended I.V. treatments April 12 with great optimism, but slowly his painful symptoms are all returning.

I have found some answers in a book, The Widening Circle: A Lyme Disease Pioneer Tells Her Story. It was written by Polly Murray, the woman in Lyme, Conn., who began pushing for answers in 1965 as to why she and her family were all suffering strange rashes, arthritis, fevers, extreme fatigue and neurological symptoms that turned their once vibrant lives upside-down.

Deer connection. One point worth sharing: Where there are deer, there are ticks. Mrs. Murray stresses that in her book, saying, “Dr. Andrew Spielman said that Ixodes dammini tick is dependent on the deer population, and that Nantucket had had no deer for many years prior to the 1920s. (The deer had all been killed for food.) In 1927, deer were reintroduced to Nantucket from Michigan. Since then the deer population has increased a great deal, and tick-borne diseases have appeared as a consequence.”

My family lives in an area where the deer population has continually grown in leaps and bounds. Forty years ago it would have been quite rare to see one or two deer. We now almost daily watch deer cross from one woods to another, running or sometimes strolling, across open farm fields.

It is not uncommon to see 8 to 10 deer moving together, and during hunting season my husband says it’s not unusual to see 20 to 25 deer in a day’s time. He has counted as many as 50 bunched together in a harvested cornfield one recent winter day close to our home.

Another disturbing fact detailed in Murray’s book is this: “Dr. John Anderson reported that in 1983 in East Haddam, Conn., Ixodes ticks were found on 27 different species of birds, and a number of them were infected with the spirochetes. It was obvious from this information that birds are a factor in the spread of infected ticks to new areas.”

Frustration. After my son was bitten by a tick in July of 1998, he began getting knee pain, then chest pain, followed by severe gastrointestinal problems. When I mentioned the tick bite, I was told there is no Lyme disease in Ohio. Do birds stop and read state line signs? Do deer?

We have since heard of many people being treated for Lyme in Ohio. Some get remarkably better with treatment, while others continue to struggle with pain, weakness and debilitating neurological problems. And while doctors agree that each patient responds differently to treatment, they disagree on length of treatment and the importance of retreatment. While they all agree that testing methods are terribly faulty, many still rely on a positive blood test before they will order treatment, causing great delay and expense.

Some terribly sick people never get a positive test, but regain their health with antibiotic treatment ordered by a compassionate doctor. Some doctors closely follow conservative protocol to avoid the wrath of health insurance companies.

Is anyone listening?

The most maddening thing to me, as I read this story of one family’s struggle, is this: Why are so many individuals still struggling to “prove” they are sick and need treatment? All the ground Polly Murray and others gained in years of public speaking and battling for themselves and others should have gotten us further along than this.

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Judith Sutherland, born and raised on an Ohio family dairy farm, now lives on a 70-acre farm not far from the area where her father’s family settled in the 1850s. Appreciating the tranquility of rural life, Sutherland enjoys sharing a view of her world through writing. Other interests include teaching, reading, training dogs and raising puppies. She and her husband have two children, a son and a daughter, and three grandchildren.