Log Cabin Democrat Features: Tick-borne disease remains a complex enigma 6/22/97

Published Sunday, June 22, 1997

Sunday, June 22, 1997 Dwayne Goode reads from a newsletter written by a Lyme disease support group. Goode suffers from the disease, which has also smitten his daughter.Mike Kemp / Log Cabin DemocratTick-borne disease remains a complex enigma

Last modified at 11:17 p.m. on Saturday, June 21, 1997

By BOB BUCHANAN

Special to the Log Cabin

Lyme disease, the result of a bacterial infection spread by tick bites, has been called "the great pretender," a "biologic evil genius" and an enigma.

Two Conway pharmacists, father and daughter Dwayne and Cindy Goode, know Lyme to be all of that and more.

Victims of the disease know the meaning of "the great pretender." Symptoms range from flu to disorientation to light sensitivity and more.

Goode gives a litany of his symptom over the past year.

At times "you're so depressed you want to blow your brains out. You can't see the end of the suffering."

Headaches became so severe he'd lie on the floor of his Harkrider Street office.

Fatigue

"I'd come home from the pharmacy at 5 p.m. and drop in a chair, immediately falling asleep," he continued. "Elaine (his wife) would put me to bed, and I wouldn't wake up until 7 the next morning.

"On a drive home from Dallas I fell asleep at the wheel, once narrowly missing a semi," he recalled. "If a friend in a following car hadn't blasted the horn, I don't know whether I'd be here today."

Goode said Cindy was worse off. Often she slept 18 hours a day, even then not wanting to get up. Lyme has the opposite effect, too, he continued. Once Cindy couldn't sleep for three straight days.

Thanks to treatment, he's now back to a normal eight hours of sleep, although some days are worse. Cindy, he said, had a more severe case of Lyme -- she's been fighting it for a year and a half -- and still sleeps 10 hours a day. Goode has been under treatment for a year.

Because the infecting bacteria from the tick goes through the bloodstream toward the brain early on, fainting may occur. Goode said his daughter has fainted three times, having had a seizure each time.

Because the corkscrew-shaped bacteria often affects the brain, he has been confused, is forgetful and has difficulty concentrating. At times it has affected his speech.

Many Symptoms

Goode lists his other symptoms as upset stomach, poor balance, increased floaters in his eyes, neck and joint stiffness, swollen glands, panic attacks and heart palpitations.

Goode is convinced stress sets off his Lyme symptoms.

With symptoms such as those of Dwayne Goode, Lyme disease patients often are initially diagnosed with severe flu-like symptoms, multiple sclerosis, attention deficit disorder, neurologic conditions, myocarditis, vascular diseases, Bell's palsy, psychiatric disorders and arthritis.

Because Lyme runs across the medical spectrum, a general practitioner can well refer patients to a psychiatrist, a cardiologist, a neurologist, a rheumatologist, an ophthalmologist, a determatologist, a dentist or even a veterinarian.

The unreliability of tests to determine whether the tick, which may be a deer tick, has injected strains of Borrelia burgdorferi (Bb) spirochete into a victim creates numerous misdiagnosis.

Cindy Goode, who believes a tick bite in the spring of 1993 set off her Lyme disorders, said she saw six or seven Arkansas physicians before her mother, a biology major in college, suggested undergoing testing for Lyme disease. Mrs. Goode, as owner of an exterminating company, had recently taken a required Lyme test.

Family diagnosis

By then, three years had elapsed. Spirochetes had spread throughout her body, making it easy for Dr. Kenneth Liegner of Armonk, N.Y., to diagnose the Lyme disease and set off a new life and regimen for Cindy, who has not worked since December 1995.

Six months later, Dr. Liegner diagnosed her father with Lyme disease. The major difference was that Cindy's disease had progressed much further than her father's. Because Lyme tends to run in families due to lifestyle habits, brother Grant Goode, also a pharmacist, has undergone tests. Mother Elaine is undergoing tests again. If they have been infected, both intend to receive early treatment. Neither Grant nor Elaine show any symptoms.

Cindy and Dwayne aren't alone about being misdiagnosed. Some physicians, after learning more about Lyme, say they even misdiagnosed their own patients.

Reasons are numerous for misdiagnosis. First, serologic tests do not become positive for several weeks. Usually the first sign of a tick bite -- an indication of Lyme disease -- is a red-to-pink bull's-eye rash, which varies in diameter, at the site of the bite. The circular bull's-eye appears on the body less than half the time. Cindy had a much larger bull's-eye than normal. Dwayne had none.

Cindy said, "I had many earlier tick bites and rashes, and then that last bite set it off completely."

Additionally, there is no standard Lyme treatment. One group believes in a 30-day program. Any residual symptoms are termed "post-Lyme syndrome" and treated as indicated by specialists. The second group says Lyme not treated early is a chronic disease that may require months of intensive treatment, and, if tests show the spirochete still present, additional treatment is pursued. The divergence of opinion has become political, affecting patients and medical community alike.

Types of ticks -- seed ticks, deer ticks, western black-legged ticks, brown dog ticks, Lone Star ticks, are numerous in Arkansas, said Dr. Sandra Snow, acting medical director for communicable diseases in the Arkansas Department of Health.

Lyme disease is rarely fatal unless other complications exist.

Dormant since 1977

Dwayne Goode believes he and his daughter contracted Lyme disease unknowingly 20 years ago before the disease was widely known.

The Goodes purchased 80 acres off Lakeview Acres Road near Williamsburg subdivision in 1977 and were building their home. When thieves stole building materials, Dwayne and Cindy, then 10, decided to live in a camper on the property.

During those days, they became infected by ticks, but brushed them aside, not realizing the ramifications.

Goode said their 80 acres previously had been a feed lot, and cows are known to be carriers of the deer tick.

Dr. Ed Masters of Cape Girardeau, Mo., is convinced Arkansas is in deer tick territory because Arkansas is in the Mississippi flyway. Birds are known carriers of ticks, especially birds that land regularly on the ground, he continued.

Lyme was discovered in New England near Lyme, Conn., for which the disease was named. The eastern flyway runs from Maine to Florida.

No. 2 in tick infestation is the Mississippi flyway from Wisconsin and Michigan to Arkansas, Mississippi and Louisiana. Now the West Coast flyway from Washington to California west of the Cascade Mountains is seeing greatly increased numbers of ticks.

Costly treatments

The Goodes ascribe to Dr. Liegner's chronic long-term care treatment and use their "local" physician, Dr. Charles Crist of Springfield, Mo. This means intensive intravenous treatment. Cindy has completed nine months of IV and oral antibiotics and is now on a lower dosage of oral antibiotics to suppress the infection. Dwayne is in the midst of his treatment.

Until several weeks ago, Goode self-administered his IV three times a day. The IV was implanted near his heart with a peripherally inserted central catheter from his left arm.

He has since switched to oral antibiotics. Dwayne initially suffered a relapse under this treatment, but adjustments have proven to render it effective.

Goode says each IV had cost $25, $75 a day. That puts an eight-week cost of IVs at more than $4,200.

Mrs. Goode estimates treatment costs for her daughter at more than $100,000 annually, partly paid by insurance, and costs for her husband at slightly less than $100,000.

Cindy says, "Blue Cross/Blue Shield of Arkansas has been terrific."

Arkansas Blue Cross/Blue Shield spokesman Max Parker said health policies will pay for "proven treatment" for Lyme disease, but not experimental treatment.

Ms. Parker was talking about hyperbaric oxygen treatment, which the Goodes hope will rid them of Lyme spirochetes. Both agreed if any reasonable experiment has possibilities, they are willing to undergo it regardless of cost.

Dr. Joseph J. Burrascano Jr. of East Hampton, N.Y., in 1993 told a Senate committee hearing on Lyme disease, "The Lyme bacterium spreads to areas of the body that render this organism resistant to being killed by the immune system and by antibodies, such as in the eye, deep within tendons, and within cells."

Oxygen tank

Through the Internet, Cindy learned of hyperbaric oxygenation and that Bb spirochetes dislike oxygen. The theory behind the treatment is to pressurize the body, normally to 1.4 times sea level pressure. Then 100 percent oxygen is pumped into the body's cells, both blood and tissue. Theory is it drives the spirochetes out, allowing antibiotics to kill them.

Cindy is preparing to undergo more hyperbolic treatment, only this time in Little Rock. Cindy, vibrant while going through the University of Arkansas School of Pharmacy, didn't look like the same woman a year ago, Lyme having drained her vitality. Today she appears and acts more like the young women of years ago.

One of the reasons for hope is her dad. In April and May, Dwayne underwent three weeks of hyperbolic treatment at Ocean Hyperbaric Center in Lauderdale-by-the-Sea, Fla. He became the center's first Lyme hyperbolic patient.

The first two days of two-hour HBO oxygenation treatments were rough, Goode admits. For the next two weeks he felt better than he had in a long time.

Goode says he will consult with Dr. Crist before deciding future moves.

Does hyperbolic treatment work? Goode replies, "I can't tell yet" but he remains optimistic.

Through all the suffering, the Goodes aren't sure whether they are guinea pigs or pioneers. They hope it's the latter.

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