Mystery Illness Solved: Lyme Disease -- Oregon Family Suffered Years And Years' From Ailment Carried By Ticks
RAINIER, Ore. - Diane Tack and eight members of her family spent years traipsing from doctor to doctor, complaining of problems ranging from memory loss to joint pain.
Finally, last summer, the Tacks left their hilltop log house near the Columbia River for a costly four-month trip to specialists on the East Coast for treatment of Lyme disease.
The family still struggles with a multitude of symptoms and with others' ignorance about the disease, which was identified in the United States only in 1975.
``We'd been going to doctors for years and years over little things, but they'd take examinations and say we were basically fine,'' she said.
Lyme disease is caused by spiral-shaped bacteria called Borrelia burgdorferi. The bacteria commonly are carried, and introduced into humans, by ticks.
Since the bacteria were identified, Lyme disease has been reported in 45 states, according to the Lyme Borreliosis Foundation in Tolland, Conn. Figures for 1989 are not yet available, but in 1988, the federal Centers for Disease Control said 4,572 cases were reported. A preliminary count by the foundation found 7,600 cases reported last year, a tally the foundation estimates is 10 percent of the total.
Fortunately, the experience of the Tack family is uncommon. Lyme disease, when caught early, usually is relatively mild and curable with antibiotics.
It's also a relatively easy disease to prevent. Simple measures - such as checking for the presence of ticks after a walk in the woods - can sharply reduce the incidence of the disease.
And, according to the CDC, Lyme disease is uncommon outside of eight hot spots: New York, New Jersey, Pennsylvania, Massachusetts, Connecticut, Rhode Island, Minnesota and Wisconsin.
In other areas, such as Oregon, it can be especially difficult to diagnose, said Karen Forschner, president of the Lyme Borreliosis Foundation.
``Some people will be treated with antibiotics and go from negative to positive or from positive to negative. They don't know what it means. That's why doctors who treat Lyme disease tend to go on clinical symptoms,'' she said.
About 65 percent of Lyme victims develop a lesion at the site of the tick bite, said Dr. Paul Williams of the Oregon Health Division. Later symptoms include fever, aches, paralysis of facial muscles, loss of touch sensation, memory loss, chest pain, joint pains, diarrhea and sensitivity to light.
``Someone could be running to a heart specialist, a gastroenterologist and the eye doctor, not realizing that they're all related,'' Forschner said. ``That's where the hardest part of diagnosis comes in. They're sick, but each doctor tries a new therapy and the patient continues to get worse.''
``This stuff is so insidious,'' said Berkley Tack, Diane's husband. ``It imitates everything else. And so they'll troubleshoot first, until they've got everything troubleshot.''
Diane Tack, 42; her husband, 36; and their children, Stephen, 8, Ryan, 4, and Mary Beth, 2 1/2, had many of the symptoms. So had her son by a previous marriage, Terry Will, 24; his wife, Cora, 18; and their children, Chad, 3, and Sheena, 1 1/2.
``Like a detective, I began putting clues together and slowly it started dawning on me that maybe there's something here,'' she said.
Berkley Tack believes he was bitten by a tick as a child in California. His wife thinks she contracted the disease from her mother and in turn passed it to her children.
Cora Will was bitten by ticks twice as a child in Nevada. Only she tested positive for Lyme disease.
The family's list of symptoms was considerable. Diane Tack's arthritis had become so aggravated two years ago that she was referred to a rheumatologist in Portland, who suspected Lyme disease but ruled it out after her blood test was negative.
She has had six miscarriages in her current marriage, and the couple's three children all have had health problems since infancy.
``Stephen was born and he got a rash . . . that you couldn't heal with anything and then it just would finally go away. And then on and off he'd get sores that would just be there . . . and they'd just go away all by themselves,'' she said.
Ryan was born with thrush and a heart murmur, she said. He had diarrhea that required an intravenous antibiotic.
Mary Beth suffered, like the boys, from irritability, leg cramps, stomach pains and sleeplessness. ``She just cried all last summer, screaming every night in pain,'' Diane Tack said.
Berkley Tack, a blacksmith, began noticing neurological symptoms.
``I wasn't handling things well. I couldn't remember out in the shop,'' he said. ``I was having trouble keeping track of where my tape measure was or remembering how to do something. I had to become more and more deliberate about everything I did.''
The Tacks were being treated for a staphylococcus infection when it finally became clear they had Lyme disease. A doctor prescribed a cephalosporin drug, and after several days, they developed violent rashes.
Diane Tack dug out a magazine article on Lyme disease, and read that it also was treated with cephalosporins. She called the Lyme Foundation and was referred to a doctor.
``And he called me back clear from New Jersey, he was so concerned. He asked me what was going on in our family and exactly what the symptoms were and when we reacted,'' she said.
He told her that as the bacteria were killed by the antibiotic, ``they put off a toxic chemical that causes you to get really, really sick.''
The doctor said the family apparently had late Lyme disease ``and that we'd need to have IV therapy. And he even gave me what the treatment would be and everything in case we had a doctor here that would just want to follow and consult with him over the phone. And you'd go to doctors around here, the first thing they'd say is, `We don't have Lyme disease here.' ''
So in August, Diane Tack packed up her family in a 23-foot trailer and drove to her parents' home in Erie, Pa. In September, doctors put the family on daily intravenous treatment.
The Tacks lived in their trailer and the Wills in the apartment of Diane Tack's brother. As the weather turned cold, the Community of Caring church found them temporary living quarters.
Their savings were decimated. Intravenous antibiotic treatment alone cost $10,000 per person.
Treatment was concluded Nov. 14, and Cora Will gave birth to Scott Thomas Will the next day.
``He did have a rash when he was born . . . but other than that he seems to be just doing great,'' Diane Tack said.
The family came home Dec. 6. Diane Tack arranged for Alan Tice, an infectious disease specialist in Tacoma, to treat them.
Since returning to Oregon, the family has taken four types of antibiotics but symptoms linger, and the family faces a months-long road to recovery. This summer, Diane Tack said, they plan to wear ultrasonic devices to keep insects away.
``Sometimes we get discouraged, I have to admit,'' Berkley Tack said. But they are shorn up by a positive attitude and faith in God.
``We're home, we've got a line on a new antibiotic that will maybe wrap this thing up,'' he said. ``And we've still got our business and our home and our family.''
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