No ticks carry Lyme Disease in Ohio?

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LIving with Lyme disease A Warren boy knows firsthand the dangers of tick-borne illness.


"LYME DISEASE: As more and more victims are finding out, it can and does strike people in Ohio

Lyme disease could sneak up on Ohio residents who don't realize they are not immune to catching it.

Janet DeCesare of Mineral Ridge and other Ohioans with the incurable disease want doctors, lawmakers and the public to know that Lyme is not limited to areas with high infection rates like the East Coast and California.

Although Ohio is not ranked a high-risk state for Lyme and state health officials have not found indigenous ticks with the disease, hundreds of residents are infected. And some people think the rate is much higher than what the government records.

DeCesare, 45, was ill with Lyme disease for about four years before Ohio doctors figured out what was wrong with her last June.

She said she has seen eight doctors, spent more than $44,000 out of her own pocket on treatments and takes about a dozen pills each day. Monthly bouts with bronchitis and pneumonia and an inability to concentrate led to her quitting her job as a home health aid, she said.

DeCesare thinks area doctors need to learn more about how to recognize the disease and the public needs to understand how to protect themselves.

On Wednesday [5-3-00], thousands of people with Lyme disease from across the country will tell their stories in Washington, D.C., during a rally on Capitol Hill.

Lyme survivor Ann Hirschberg,, who started the only support group for the disease in this corner of the state, will march in the rally and then meet with Ohio lawmakers to ask them to support a Congressional bill asking for $125 million over five years to develop a reliable detection test, improve tracking and reporting and start a massive public and doctor education campaign.

Most survivors will say that anyone from Ohio who catches Lyme ends up an expert on the disease because doctors generally know so little about the disease.

Doctors often mistakenly diagnose Lyme disease sufferers with just about every ailment but the right one.

In DeCesare's case, before a doctor figured out she had Lyme, physicians suggested she had chronic fatigue syndrome, a back injury, a thyroid problem, a stress-related illness, depression, anxiety disorder, multiple sclerosis, a heart condition or lupus.

She has had her back adjusted, joints injected with steroids, spine X-rayed, heart monitored and stress tested.

Hirschberg said DeCesare is not alone. The 300 infected people who receive the newsletter for her Greater Cleveland Lyme Disease Support Group have similar complaints. Greater Cleveland Lyme Disease Support Group

"Many of them say, 'I showed the doctor the rash and he said you can't get that here,' " she said, "and he gives them a cream or something to put on it and says its ringworm or something."

"It's quite amazing the things that people have been told: 'You can't get it in Ohio.' They (doctors) laugh at you."

Hirschberg only knows of about 10 doctors in Ohio who treat the disease, and she said most people travel to Pennsylvania doctors who specialize in Lyme treatment.

"Most doctors, if they don't see it every Tuesday morning, they don't know," she said. "They don't keep up on it."

Many local residents travel to two doctors who treat Lyme in Hermitage, Pa.

Those doctors did not want to talk publicly about their practices because several doctors in New York are under scrutiny from insurance companies and medical oversight investigators to determine whether long-term antibiotic treatments are necessary. Some doctors claim the disease can be curtailed after taking antibiotics for a short period.

After years of getting the runaround from doctors and an unending chain of illnesses, DeCesare started researching her symptoms on the Internet.

She found a Web site that listed 38 symptoms of Lyme. Over the years, she experienced all but four of them.

She had to convince her doctor to test her for the disease. "He just looked at me and said, 'Why on earth do you think you have Lyme? There's no Lyme in Ohio.'"

When the test came back positive, her doctor had to send her to another physician because he did not know how to treat the disease, DeCesare said. "I don't know what it's going to take to get these doctors to wake up," she said.

She finally connected with the right doctor who started her on intensive intravenous antibiotic treatments.


There is no cure for Lyme disease.

Doctors must administer a blood test to diagnose it, and treatment requires antibiotics.

If the disease is caught and treated right away, long-term side effects are minimal. If left untreated for years, the disease becomes harder to control.

Early symptoms that often mimic the flu usually occur three to 32 days after the bite. The disease can invade the central nervous system, cause heart problems or lead to disabling arthritis.

DeCesare's doctor told her there are 70 strains of Lyme and 13 antibiotics to treat it. She is trying her ninth antibiotic.

The medicines offer her relief for a while, she said, but then her body builds up a resistance, and she moves on to the next one.

Her problems finding the right antibiotic support the need for a better treatment, DeCesare said.

"What's going to happen when I run out of antibiotics?" she said.

Her doctor believes in using herbal and vitamin supplements, so each day DeCesare takes red clover blossom drops as a blood purifier, oil of oregano and a multi-vitamin.

Her symptoms have subsided considerably, but are far from over, she said. She runs out of energy in the early afternoon on most days and has to take a two-hour nap.

She often does not have the energy to go to kickboxing classes with her husband, David, in the evenings, but she forces herself to exercise or she has a hard time moving because of stiff joints or muscle fatigue.

"Had I not found the disease when I did, I'd be in a wheelchair," she said.

Her doctor explained to her that the disease can go into remission and all symptoms will disappear, but people can have flare-ups.


Not all ticks carry Lyme disease.

Transmission of Lyme disease, named for the Connecticut town where it was discovered in the United States, is limited strictly to bites from black-legged ticks (formerly called the deer or bear tick), according to the Centers for Disease Control and Prevention.

Although Lyme is labeled an "emerging disease" because of increases in the number of cases and the geographic spread, it was first recorded in Europe around the turn of the century.

People sometimes do not realize they have been bit because the puncture by the tick's mouth is usually painless.

People cannot catch the disease from pets or other bugs like mosquitoes, flies or fleas.

No cases have been documented where the disease spread through a blood transfusion or contact with infected body fluids.

Most people report being bitten by the infected tick between May and August, but cases have been reported in every month of the year.


SmithKline Beecham Pharmaceuticals of Philadelphia made the first vaccine that is marketed as LYMErix.

The vaccine, which is given in three doses, cannot help people who already have Lyme. A person who is in remission from the disease can be reinfected by another bite.

In Pennsylvania, a class action lawsuit has been filed against SmithKline claiming the vaccine causes arthritis.

A couple of months ago, a medical researcher from the University of Wisconsin in Madison published results of an experiment that found hamsters developed arthritis after being injected with the same protein that makes the vaccine work.

Executives from the pharmaceutical company repeatedly have denied the vaccine is unsafe, and the U.S. Food and Drug Administration, which approves medicines, continues to back it.

Some doctors refuse to administer the vaccine, and Hirschberg said she would not get the vaccination because of all the problems she has heard about it.

"It actually scares the hell out of me," she said.

Pets also can catch the disease, and there are vaccines for them.


Part of the problem with controlling Lyme, according to those with the disease, is no government agency keeps an even close to accurate count of how many people are infected.

Several medical sources gave different numbers -- up to ten times -- for the amount of people who have Lyme disease but are not counted by the government because they don't have the telltale symptoms required to be recorded by the CDC.

Since 1984, the Ohio Department of Health reports 620 cases of Lyme disease in the state. That compares to about 17,000 cases in Pennsylvania during the '90s.

According to statistics from the Trumbull County Health Department, Lyme-carrying ticks have not invaded the border the county shares with Pennsylvania , which is ranked third of the 10 states with the highest rates.

The health department, which records disease statistics for most Trumbull towns, reports the most recent case of Lyme is one report it received in 1998.

Since 1984, the state health officials have recorded 20 cases in Trumbull, including two last year.

The department has found nine black-legged ticks in the state, but none of them were infected. Travellers or birds probably brought the ticks into Ohio, according to the health department Web site."

For more information: All About Lyme Disease

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NEWS ARTICLE from The Associated Press, 5-28-00

"New York hot spot for Lyme disease faces worrisome summer

RED HOOK, New York (AP) -- This is a place where hikers wear long pants on the hottest days, a place with its own Lyme disease hot line and Lyme disease walk-in clinic.

This is a place where tick-eating hens patrol front lawns, and where full-body tick inspections are a standard evening routine.

This is Dutchess County, a national hot spot for Lyme disease. Last year, 1,385 cases were reported in this leafy Hudson Valley county 60 miles north of New York City. A lot more cases could result this summer -- the prime Lyme season -- because of a bumper crop of the deer ticks that spread the disease.

If that weren't bad enough, residents are bracing for the potential spread of the mosquito-borne West Nile virus from the metropolitan area. People accustomed to watching where they walk are now watching the skies with trepidation, too ...

Why is Dutchess County a Lyme disease hot spot?

Blame geography, experts say. Deer and white-tailed mice, which ticks latch on to, are plentiful in the county's many pockets of undeveloped land. The local suburbs often stand on the edge of those fields and woods.

The result: plenty of interaction between ticks and humans.

"It's getting to the point in Dutchess County where just about everyone knows a neighbor or friend who's had Lyme disease," said John Nowakowski, director of the Hyde Park Lyme Disease Walk-in Center.

Annie Berthold-Bond got it. So did her husband. And her daughter. Bond, an author of books on non-toxic living, said the short-term memory problems associated with her bout were so severe she stuck Post-it Notes to her sleeve.

She now avoids walking in the woods around her rural home.

"It's very sad not to sit on the grass and to feel like you can walk on your bare feet," she said.

Families with pets face additional worries. Raymond Winchcombe of Verbank said it's common to feel engorged ticks under the fur of his dog. One hunter, who didn't want his name used, recalled a horrifying glimpse of a deer he shot last fall: "Under his muzzle, his neck, under his belly, on his back, he was a mass -- honest to God -- he was a mass of ticks!"...

Other residents have taken the battle to their front lawns -- buying guinea fowl in the hopes their endless pecking will eradicate the bugs or having their lawns sprayed.

"Our client base for deer tick spraying has been increasing on a regular basis over the last five years," said Mike Ignaffo of Bug Busters Pest Control in Hyde Park.

With the ticks' busy season looming, predictions of a bad year are often based on the mild winter ...

Richard Ostfeld of the Institute of Ecosystem Studies bases his prediction on another indicator: acorns. A healthy local crop of acorns in 1998 provided a feeding bonanza for mice. That meant more mice in the summer of 1999. And that meant more mice for larval ticks to feed on. Those are the ticks that will be out to feed this summer, he said.

"Our prediction is for the highest number of cases yet for Dutchess County," Ostfeld said.''

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A bumper crop of ticks will infest the woods and grasslands of Missouri and Kansas this spring and summer, thanks to mild winters, abundant wildlife and rich habitats. This glut of blood-sucking bugs will bring serious health threats.

In recent years Missouri has ranked high nationally for tick-borne diseases. It is second, after Arkansas, for cases of tularemia, fourth for ehrlichiosis qnd seventh for Rocky Mountain spotted fever, according to the federal Centers for Disease Control and Prevention.

Missouri is not considered a high-risk locale for the most notorious tick-borne malady, Lyme disease. A Lymelike illness found in Missouri, however, is as nasty as the real thing ...

Ticks need to feed on the blood of a warm-blooded host animal three times in their life cycle. If the animals are infected, the ticks pick up disease bacteria. The ticks, in turn, can pass the bacteria to the next animal or person that supplies them a meal.

Daniel Schorr, 53, of Liberty became dinner for a tick carrying ehrlichiosis at the Lake of the Ozarks six years ago. He is healthy now and feels lucky to be alive.

On Memorial Day weekgnd 1994, Schorr developed the classic flulike symptoms of tick-borne illnesses: a high fever, head and joint aches, nausea and vomiting.

``It was kind of like the worst case of flu you ever had,'' he said.

While most cases of ehrlichiosis are mild, Schorr's got progressively worse. His kidneys and liver began to fail. He spent two weeks in the hospital as doctors triud to figure out what was making him ill.

``I don't remember much of anything but the priest being there a couple of times to give me last rites,'' Schorr said.

Hospital staffers kept asking Schorr's wife, Debra, questions that might lead to a diagnosis.

``Finally someone asked me the tick question, and they shot out of there to run tick tests,'' she said.

Schorr immediately received the right antibiotic, doxycycline. He started to improve in a couple of days.

Missouri's ecological diversity, from delta to prairie, ``provides in one place or another an environment for virtually any tick-borne illness in the United Stqtes,'' said Rob Hall, a University of Missouri-Columbia entomologist.

Hall noticed the first ticks of the season about six weeks ago.

``I live on a farm, and I can't walk outside without getting ticks on me,'' he said. ``They're hungry, they're crawling around, and they're looking for a host animal.''

Mild temperatures may have allowed more ticks than usual to survive through the winter, Hall said.

``We've not only had a couple of pretty mild winters, but we also had an early spring,'' Hall said. ``Given a long summer, we could have two generations (of ticks).''

Conditions for ticks also have been favorable in Kansas, said Donald Mock, a Kansas State University entomologist.

``Last year it was generally agreed to be the worst tick season we ever had (in Kansas),'' Mock said. ``The warm winter, some moisture. The ticks should have survived pretty well this year.''

The abundance of ticks is also ``an inevitable by-product of fostering wildlife,'' said Hall. With animals such as raccoons, opossums and deer thriving in Missouri, there are more host animals for ticks, he said.

And with wildlife spread throughout Missouri, ticks are everywhere in the state. In the early 1990s one of Hall's graduate students sampled ticks in all the major environmental regions.

``We couldn't see any major focal point of ticks. We collected them readily all the way from southern to northern Missouri,'' Hall said.

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This survey found that fewer than 1 percent of all ticks in Missouri carried disease bacteria, but that is no reason for complacency, Hall said. In some hot spots as many as half the ticks were infected.

Ehrlichiosis, the disease that put Schorr in the hospital, appears to be a growing problem in Missouri and otheR parts of the country.

Last year doctors and other health-care providers reported 56 cases of ehrlichiosis to the Missouri Department of Health, compared with an average of 14 cases a year from 1989 to 1998.

In Kansas ehrlichiosis did not become a reportable illness until this year, so no data were available.

``Ehrlichiosis is definitely up, but we're not certain why xet,'' said Howard Pue, a Missouri Department of Health veterinarian. ``It might have been underreported in the past. Or there might be more of it out there.''

Nationwide the number of ehrlichiosis casew has been trending up since 1986, when scientists discovered that the disease, long recognized in animals, also was infecting people.

The largest numbers of ehrlichiosis cases from 1986 through 1997 were reported in New York, North Carolina and Connecticut, according to a recent Centers for Disease Control report.

Fourth-ranked Missouri reported 162 cases. Missouri is part of a band of Midwestern states, including Arkansas and Oklahoma, in which ehrlichiosis is common.

Greater awareness of ehrlichiosis may be leading to more reports by doctors, said Chris Paddock, a CDC medical officer. But growth in the population of white-tailed deer, which carry the bacteria, also may account for more cases, he said.

Other tick-borne diseases in Missouri and Kansas:

- Rocky Mountain spotted fever -- Besides flulike symptoms, most people with the infection develop a red, spotty rash.

- Tularemia -- Symptoms may include occasional cough and chest pain, and swollen lymph glands. Tularemia is rarely fatal, but it can cause severe pneumonia, McK)nsey said.

- Lymelike disease -- Whether Lyme disease exists in Missouri has been a contentious issue for years between Missouri health officials and the CDC.

``We know that there's a potential for Lyme disease to occur in Missouri, but there hasn't been any laboratory proof that it's infecting people,'' said David Dennis, coordinator of the CDC Lyme disease program.

Missouri researchers have found bacteria in ticks that are very similar to those that cause Lyme disease. The bacteria cause the same flulike symptoms and distinctive bull's-eye rash at the site of the bite.

``We're calling it Lymelike disease, but we're not calling it Lyme disease per se,'' said Pue of the Missouri Department of Health. ``It's close enough to Lyme disease that diagnostics are the same; the treatment and prevention are the sam%. It's really an academic argument whether it's Lyme.''

Kansas health officials track Lyme cases that meet only the CDC definition of the disease, not Lymelike ailments ...

The good news about tick-borne diseases is that with timely diagnosis they can be treated successfully with antibiotics.

``Physicians are trained to have a low threshold for prescribing antibiotics to people who have a fever during the summer months, especiahly if there's been tick exposure,'' McKinsey said.

Schorr and his wife still go to tle Lake of the Ozarks. But now they spray on repellent and check each other thoroughly for ticks.

A couple of weeks ago Schorr was at Truman Lake. When he got home, he discovered a tick stuck to him. Did it give him a chill? He admitted, ``It did a little bit.'' "


''Biodiversity helps protect humans from disease, study finds

... When forests are fragmented by clearings for farm fields or urban development, the white-footed mouse thrives, most likely because of a decrease in the number of predators such as barred owls and bobcats. So decreasing this fragmentation might also reduce the risk of Lyme disease, the researchers said ...''

[The ecological issues are complicated. In Avon, Ohio, the recent arrival of coyotes has apparently caused a marked decline in the fox and stray cat populations which feed partly on deer mice. Maybe the non-poisonous milk snakes could be encouraged as deer mouse predators.

The really interesting question is whether or not humans infected with tick-carried diseases such as Erlichiosis, Babesiosis, and Lyme are now the main souce for transmission to uninfected ticks, surpassing deer and deer mice as disease carriers, both in numbers and in mobility. Does anyone seriously believe that no tick in Ohio has fed on someone with Lyme Disease? Likely hot spots for Lyme-carrying ticks are areas where there are concentrations of people with Lyme Disease. The tick data is almost non-existent, but there is a little knowledge in Ohio about who is carrying Lyme Disease.]

For more information: Kansas City Star

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"Living with Lyme disease

A Warren boy knows firsthand the dangers of tick-borne illness

Hayden Banbury can race around the house like a typical 7-year-old, loves to go fishing and waits impatiently for the day he can hunt squirrels and rabbits with his father.

Those are the good days. On the bad days, he can barely walk or feed himself.

The Warren youngster has struggled with Lyme disease for about half of his life. A strange and often terrifying tick-borne illness, it devastates outdoorsmen and can quickly take the fun out of a small boy.

"If you saw Hayden at his grandma's this week, you wouldn't suspect a thing was wrong," said his father, Trumbull County wildlife officer Brian Banbury. "He was running, playing ball, fishing and climbing trees."

The lively little boy can suddenly have the wind taken out of his sails by an outbreak of the disease and its strange mix of symptoms.

"We have a little wheelchair for him," said Banbury. "We'll be at the store and he'll get so tired he can't walk. One minute he'll be running laps around the house and the next I'll have to carry him inside."

Lyme disease is transmitted by deer ticks as tiny as the period at the end of this sentence. Any tick bite can be dangerous, and after Ohio's relatively warm winter and early spring, ticks are abundant this year.

The first sign of Lyme disease is often, but not always, a bull's-eye-shaped rash at the site of the tick bite.

"We never saw the bull's-eye rash with Hayden," said Banbury. "The first symptom was diagnosed as involuntary muscle-twitching." The family believes Hayden picked up the disease when they were living in Richland County three years ago.

Symptoms began to multiply and Banbury took his son to Children's Hospital in Columbus and the Cleveland Clinic. Hayden was severely run down. The infection evaded diagnosis and large doses of antibiotics failed to stop the suffering.

"They tried everything, from blood tests to MRIs and CAT scans," said Banbury. "Finally, a doctor tried a series of clinical tests designed specifically to identify Lyme disease. Two of three were positive." Three years later, Hayden still suffers from outbreaks.

"It is not like a typical illness, where the sickness bottoms out and you gradually get better," said Banbury. "This is a roller-coaster ride. The Lyme disease spirochetes hibernate where the antibiotics can't reach them. You don't know when you'll face the next outbreak."

Banbury and his wife, Amy, are extremely wary of ticks. "I had a couple on me this weekend, the larger dog ticks," he said. "We always check ourselves, Hayden and our 3-year-old daughter, McKenna, real good when we come in the house."

Lyme disease was first recognized in 1975 after unusually large numbers of children in Lyme, Conn., were diagnosed with juvenile rheumatoid arthritis. Most of the affected children lived near wooded areas likely to harbor ticks.

Some children reported having a skin rash just before developing their arthritis. Many recalled being bitten by a tick at the rash site. Researchers discovered tiny deer ticks were infected with a spiral-shaped bacteria, or spirochete, responsible for Lyme disease.

"It is the fastest-growing infectious disease in the United States," said Ann Hirschberg of the Greater Cleveland Lyme Disease Support Group. "Found in all 50 states and around the world, more than 150,000 cases have been reported nationwide. The Center for Disease Control estimates the real number of cases is at least 10 times those reported."

Early treatment with the proper antibiotics is critical, said Hirschberg. If not treated, Lyme disease can spread throughout the body, causing debilitating, devastating and chronic problems.

"Testing for Lyme disease is difficult," said Hirschberg. "The Food and Drug Administration sponsored a study of the available tests and concluded none are reliable. The diagnosis of Lyme disease is still a clinical one."

Tick-borne diseases include Rocky Mountain Spotted Fever, which causes chills, fever and a peppery rash; ehrlichiosis, which brings on a fever and low platelet and white-blood cell counts, but no rash; and babesiosis, with symptoms resembling malaria ...

For information on Lyme disease, contact Greater Cleveland Lyme Disease Support Group 7644 Main St., Cleveland, 44138. Tick identification and testing is provided by the Vector-borne Disease Unit of the Ohio Department of Health. Call (614) 752-1029."


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