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Misunderstood malady: Babesiosis is spreading and often misdiagnosed
Julie Kirkwood , Staff Writer
Salem News

May 21, 2007

Rick DiMichele, a physically fit 55-year-old, came down with a mysterious disease last summer. He had a fever of 103 degrees, he looked pale and puffy, and he had a terrible pain in his side.

It turned out to be a rare infection called babesiosis, which is similar to malaria. While malaria is common in tropical climates, DiMichele believes he caught this disease in his own Ipswich backyard.

Babesiosis is spread by deer ticks, the same insects that spread Lyme disease. DiMichele, who works at New Balance in Lawrence, lives on a wooded road about two miles from the center of Ipswich, where deer eat people's shrubs and Lyme disease is a major concern.

Babesiosis is so new to North of Boston that many doctors - including DiMichele's - fail to recognize it. The disease wasn't even known in Massachusetts until the 1980s, said Dr. Bela Matyas, medical director of the epidemiology program at the Massachusetts Department of Public Health. It didn't reach Essex County until 1998. The New Hampshire Department of Health and Human Services doesn't monitor the disease, so it's unclear how many cases there are in that state.

Where the disease is being monitored, it appears to be spreading, Matyas said. Much like Lyme disease, babesiosis seems to have arrived in coastal communities like Ipswich first and then spread inland. There have now been recorded cases of babesiosis in Lowell and Lawrence, he said.

"More of Essex County is impacted now," Matyas said. "There's been more of a movement west."

Dr. Hilary Aroke, chief of infectious disease at North Shore Medical Center in Salem, Mass., said the hospital laboratory is on alert for the disease because there has been an increase in cases in the past two years.

"We are seeing more cases than usual," Aroke said. "I think we have seen definitely an increase in the number of cases per year."

Around the same time DiMichele was diagnosed, his neighbor's dog died of a disease believed to be babesiosis. Last month another Warner Road neighbor, 78-year-old Tom Gregory, spent a week at Salem (Mass.) Hospital with the disease.

The good news is that babesiosis is treatable. Once a doctor suspects babesiosis, the test to confirm the diagnosis gives a clear-cut answer and the treatment is usually a combination of antimicrobial drugs. Less than 1 percent of patients die of the disease, and sometimes it goes away on its own.

The trouble is getting doctors to recognize the symptoms in the more severe cases and to order the test.

Many doctors still think of babesiosis as a problem limited to Nantucket, Martha's Vineyard and Cape Cod, where it has been circulating for nearly a generation, Matyas said.

"Physicians have historically seen the tick-borne diseases being limited to certain parts of the state," he said. "A lot of people think that's the only place to get it. ... Unfortunately the risk has spread."

Doctors here are simply not on alert for babesiosis the same way they are for other diseases, Aroke said.

"In the right time of the year, almost every physician in Massachusetts is aware of Lyme disease," Aroke said. "I don't think all physicians are aware that the deer tick can transmit other infections."

Also, the symptoms are nonspecific and can be mistaken for other things, Aroke said. A patient might be sick with nondescript flu-like symptoms for weeks or months before seeing a doctor, he said, and in most cases the patient doesn't remember being bitten by a tick.

Still, as more local patients are diagnosed with babesiosis, doctors are getting better at picking it up, he said.

"Physicians are becoming more and more aware of this disease," Aroke said. "The laboratories are more attuned to looking for it."

In DiMichele's case in July, a local emergency department missed his diagnosis entirely. He followed up with his regular doctor at Massachusetts General Hospital, who told him he might have cancer. It wasn't until DiMichele saw a hematologist at Massachusetts General that he first heard the word babesiosis, and the doctor thought it was a long shot because the disease is so rare.

Before the test results came back, DiMichele was convinced he had cancer. It seemed impossible that he could have a tick-borne infection, he said, because he's so vigilant about ticks because of Lyme disease.

DiMichele runs in the woods for an hour three or four times a week, and he always takes care to stay in the middle of the path and to scan his body for ticks.

"I check myself all the time," he said, "and I just did not believe that I could be infected with something like that."

The test results were clear, though. He had babesiosis.

By the time DiMichele got the diagnosis, he was jaundiced, weak and having trouble breathing because of the pain in his side, which turned out to be caused by his swollen spleen. He got himself to work every day at New Balance, where he is an information technology manager, but in retrospect, he's not sure how.

His fever went away quickly after he started the antimicrobial drugs. His spleen also returned to a normal size, causing him to drop 15 pounds in the course of about a week.

Some of his other symptoms, such as night sweats and low red blood cell count, reacted more slowly to the medicine, he said, but about six weeks after he started taking the drugs, he felt healthy again.

Gregory, DiMichele's 78-year-old neighbor, had the misfortune to catch babesiosis and Lyme disease at the same time, possibly from the same tick bite. He had a fever of 102.5 degrees. The doctors diagnosed Lyme disease right away, he said, but it wasn't until he went home a week later that the hospital called and told him that lab tests confirmed he also had babesiosis. They put him on a different set of medications.

He and his wife have both had Lyme disease before and they take precautions against ticks, so he was surprised by the babesiosis diagnosis.

"The Lyme disease didn't make me sick at all," Gregory said. "Babesiosis really knocked me out."

Gregory has mostly recovered now and is taking the same precautions against ticks as before: using bug spray and checking carefully for the little bugs when he comes indoors.

"The ticks can be anywhere," he said.

DiMichele said he went through a hypervigilant phase after his illness when he tucked his pant legs into his socks and used harsh bug sprays that he previously avoided. He has relaxed a bit since then, but he's still on the lookout for ticks. He's actually more worried about catching Lyme disease than babesiosis, he said, because Lyme disease is harder to diagnose and can have longer-lasting effects.

If he catches babesiosis again, DiMichele said, he will recognize it this time and that will make all the difference.

"The toughest part was not knowing what it was," he said. "After I found out, it was treatable."

http://www.salemnews.com/punews/local_story_141120148?page=0

 

 

 

THE TICKING TIME BOMB:
Lyme disease increasing in state and we're entering the period of highest risk
Don Conkey
The Patriot Ledger

Quincy, MA
October 6, 2006

DUXBURY - Marie Gill never imagined that something as small as a tick could create so much chaos for her family.

``It's been a nightmare,'' said Gill, a Duxbury resident. ``That's the only word for it.''

Within the past couple of years, Gill and her four young children have each been diagnosed and treated for Lyme disease, a bacterial infection transmitted by deer ticks that burrow into the skin of animals and humans and feed on their blood.

The disease is clearly on the rise in Massachusetts. According to the Centers for Disease Control and Prevention, there were 2,336 reported cases in the state last year, a 52 percent jump from 1,532 cases reported in 2004. Experts suspect that many more cases go undiagnosed.

State Department of Public Health statistics show that in Plymouth County, there were 318 reported cases last year, up from 170 in 2004. Norfolk County also showed an increase, 249 cases last year and 136 the year before.October and November are two of the highest-risk months for someone becoming infected with Lyme disease. Gill contracted it in October 2004.

``Within a couple of days I was as sick as I have ever been,'' she said. ``I felt like I had the flu. Very achy and uncomfortable.''

She went to her doctor and had a blood test for Lyme disease, but it was negative.``You rarely test positive right away,'' said Gill, 34.

In the ensuing six weeks or so, ``I felt like I was dying a slow death. I could not pick my kids up. I could have slept all day, if I had the opportunity to.''

Months later she was diagnosed with the disease, treated with antibiotics and her health improved. But she was only the first in her family to become infected. Only her husband Michael has been spared.

Eight-year-old Emma Gill's ankles hurt, ``and she was very tired,'' Gill said of her daughter's symptoms.

Sarah, 7, suffered from ``exhaustion, and she said her head felt like it was on fire.''

Matthew, 6, had trouble with headaches too, and also with aches in his back and legs.

``We had to carry him downstairs, massage his legs to get him up and going,'' she said.

Four-year-old daughter Alexandra, then 3½, was afflicted with Bell's palsy and the right side of her face was temporarily paralyzed. She also had problems with her vision and was extremely sensitive to light.

``Her eyes were so infected that she could not be in any sort of light,'' Gill remembered. ``We reduced the light in the house so much that it was as though we were were living in a cave.''

All of the children were eventually diagnosed and treated, and are now doing OK.

Having seen what Lyme disease can do, Gill is trying to heighten awareness of it.

On Tuesday, health officials, experts on the disease and others will hold a forum on Lyme disease at the Duxbury Free Library on Alden Street. The forum is scheduled from 7 to 9 p.m.

The forum, which will be open to anyone, is an attempt to ``get the message out there,'' said Kate Eldredge of Duxbury, a neighbor of Gill's whose daughter, 4-year-old Leah, came down with Lyme disease two years ago.

Leah had not just one of the classic bull's-eye rings associated with Lyme disease, ``but had rings all over her body,'' Eldredge said.

Leah was treated for the disease right away, ``but she had gone through a period of extreme grouchiness, which was out of character. And young children can sometimes have a hard time explaining why they are not feeling right,'' Eldredge said.

Thomas Forschner, executive director of the Tolland, Conn.-based Lyme Disease Foundation, noted that the cold weather brings no relief.

``There is always the risk of ticks being there,'' even after the first snow, he said. ``When you have a January thaw, they come back and are active again.''

Snow cover protects ticks' nests, and when the weather gets warmer, if only for a day or two, they are back in action.

Forschner said people must look for more than just a bull's-eye rash when looking for Lyme disease. Some people who are infected never develop a rash. Some get a rash but, ``it can look like a lot of different things. It can be an angry red rash, it could be oblong,'' he said.

Other symptoms of Lyme disease mimic the flu. Aches and pains, swelling in joints, headaches are all possible signs that a person might be infected.

The bottom line?

``Don't get it. Avoid it,'' he said.

``This time of year, wear long pants, socks, and tuck your pants in. Use repellents. And if you come in from the outdoors, check yourself for ticks.''

Gill can vouch for the fact that even though you might constantly check for ticks, nobody is immune from Lyme disease.

``Whenever someone finds out that five people in our family got it, they are shocked,'' she said. ``I have lost the shock, because it has so much been a part of our life.''

http://www.patriotledger.com/articles/2006/10/06/news/news02.txt

Courtesy: www.lymeinfo.net
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Lyme disease alert issued as number of cases rises
Spike in rate worries officials
Matt Gunderson, Globe Correspondent
The Boston Globe

Boston MA
January 7, 2007

An unsettling number of Lyme disease cases has prompted officials in Dunstable and Groton to notify residents about threats posed by the tick-borne illness.

According to state data, the number of cases of Lyme disease in Middlesex County almost doubled in 2005 from 2004.

Although the state Department of Public Health does not have figures yet for 2006, Groton officials say the problem is not going away soon and that Lyme disease remained a serious issue in the past year.

Groton Selectman Joshua Degen, whose 11-year-old daughter was hospitalized for three days after contracting the disease last year, said he knows anecdotally of at least 12 new human cases in town last year, including two employees who work out of his Groton home.

A Groton dentist is also reported to have died recently from the disease, according to Susan Horowitz, a member of the Groton Board of Health and a local veterinarian.

To inform the town about Lyme disease, officials brought up the topic at a televised selectmen's meeting in December. Horowitz spoke about the necessity for caution even in the winter months, when deer ticks, the insect responsible for spreading the disease from animals to pets and humans, are still active.

"A lot of people get into trouble because they don't even know they have a problem," Horowitz said during a recent telephone interview. "It's all about vigilance."

Horowitz often advises people to wear long pants when taking nature walks and to check their skin and hair for deer ticks after being outside.

Symptoms of Lyme disease typically manifest as a bull's-eye and colored rash on the skin. Though treatable with antibiotics, the disease can result in long-term joint, heart, and nervous-system troubles, if not caught early, according to the Department of Public Health web site.

The department did not confirm how many deaths in the state have been linked to the disease, but spokeswoman Donna Rheaume said fatalities from the disease are rare.

"As a public health issue, we want to stress prevention," she said.

No human vaccine exists for Lyme disease, though one has been created for dogs, Horowitz said.

Middlesex County has the highest number of Lyme disease cases per year in Massachusetts, though other areas of the state, such as Cape Cod, have much higher incidence rates per 100,000 people, according to the site.

In 2003, there were 257 cases reported in Middlesex County. In 2004, the figure fell to 244. But in 2005, the number jumped to 438 documented cases in the county.

That year, cases total ed 2,312 statewide, up from about 1,500 in 2004.

Horowitz said he suspects the spike is related to the recent surge in deer populations in the region. Deer are said to maintain and transport deer ticks.

In Dunstable, Board of Health chair woman Maria Amodei said she knows of at least two human cases locally. In addition, five of her six dogs have contracted Lyme disease, she said.

The nurse's office at Dunstable's Swallow Union School recently issued a warning about Lyme disease in a newsletter to parents of students at the elementary school.

It recommended wearing light-colored clothes to spot ticks easily, and to tuck pants into one's socks when walking in the woods as a preventive measure.

In an interview last week, school nurse Beverly Johnson said she has had to remove deer ticks from students in the last few months, while some others had tick bites. Citing medical privacy issues, she declined to say whether any students had contracted Lyme disease.

Degen said his daughter has fully recovered from the disease, but that the recovery process was a tense period for his family.

"It was a scary ordeal," he said. "It was a very touch-and-go situation there for a while."

© Copyright 2006 The New York Times Company

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Lyme disease spreads on the Vineyard
Erich Luening, Contributing Writer
Cape Cod Times

Hyannis, MA
September 17, 2006

CHILMARK - Nic Bologna remembers the two bouts with Lyme disease eight years ago as though it just happened yesterday.

Bologna, a general contractor who lives in Aquinnah, said he remembers trying to get ready for work one morning and not being able to make it past the living room couch.

''I just collapsed. And I could feel it in my joints and I was aching all over,'' said Bologna. ''I remember feeling low because I was physically hurt and down for a long time.''

Depression among people who have been diagnosed with Lyme disease is highlighted in a new 84-page report by public health officials on the island.

The report - Health Conditions and Health Status Report of Martha's Vineyard - found that the high rate of Lyme disease, a tick-borne illness, and depression cases on the island are connected.

People diagnosed with Lyme disease were almost twice as likely to have a history of depression, according to the study.

The study offers a glimpse into the public health situation on the island. It was co-authored by Dr. Diane Becker, a seasonal Vineyard resident and professor of medicine at Johns Hopkins University, and Dr. Charles Silberstein, a Vineyard psychiatrist and board member of the Foundation for Island Health, the organization that commissioned the original health survey.

Becker said more extensive research is needed to further understand how and why there is a connection between Lyme disease and depression.
''We still don't know why there is a connection,'' she said. ''Lyme does affect the brain and we would look at that in the future. We don't know if the effects on the brain are chronic.''

''Unfortunately, the results only leave us knowing that depression is associated with a history of Lyme disease, but does not tell us which came first,'' the authors of the study wrote.

Becker said public health officials also need to figure out whether there are other mammals that act as hosts for the deer tick, which carries the bacteria that causes Lyme disease.

''We don't know a whole lot about Lyme disease,'' she said. ''I don't know if just killing more deer on the island will take care of the problem.''

'More needs to be done'

There has been a marked increase in Lyme disease rates across the Cape and Islands. Last year, 10 percent of all Lyme cases in the state were in Barnstable County.

On the Vineyard, Lyme disease cases have risen dramatically since a 2003 survey that found more than 12 percent of full-time - and 7 percent of part-time residents - had reported a tick-borne disease during their lifetime.

For full-time island residents, the numbers of Lyme disease cases are triple the statewide rate. For part-time residents, the numbers are nearly double those across the state.

The report found that up-island residents (West Tisbury, Chilmark and Aquinnah) were almost five times as likely as down-island (Vineyard Haven, Oak Bluffs and Edgartown) residents to have contracted the illness, with more than one-third of year-round Chilmark and West Tisbury residents having reported tick-borne diseases.

Samuel Feldman, an active member of the Martha's Vineyard Tick Task Force, an informal support group established by Lyme disease sufferers and their families, agrees more study is needed.

''There has been a lot of suffering on the island and we welcome the study, but more needs to be done,'' Feldman said.

He called for more research into finding a better way to diagnose Lyme and for creating an antidote.

Long-term studies following people with Lyme disease are planned for Nantucket, which has the highest Lyme disease rate in the country, and are under way on Block Island, R.I., according to the study.

Skin cancer, obesity findings

The report doesn't just focus on Lyme disease. Researchers also found that seasonal island residents suffer from skin cancer in rates double those of year-round residents.

''The excess of melanoma is worrisome,'' Becker said. ''We don't do a lot to teach people on the island about melanoma.''

The report's authors recommend creating a school-based health education program focusing on prevention, particularly because youth are likely to be unaware of the risks of sun exposure at a young age.

They also recommended that older adults would particularly benefit from education about how to identify high-risk skin lesions. Elder-care centers are an excellent place to begin such an educational program, the report states.

Vineyard residents are relatively healthy compared to their mainland counterparts, with cigarette smoking and obesity rates below the national average, the report states. Excessive alcohol consumption on the island is most prevalent in Edgartown and Oak Bluffs.

For the first time, Becker said, public health data for the whole island is provided in one report.

''It struck me that we don't have a lot of data out there,'' she said. ''This the first time we have an understanding of chronic disease and epidemic infectious diseases on the island.''

About the study

Much of the report's data came from a questionnaire mailed out to residents during January and February 2003. The mailing resulted in responses from 1,000 full-time and nearly 700 part-time residents; 49 percent of full-time residents and 22 percent of the part-time residents responded.

The study broke down the island population based on full-time and part-time residents. The report did not include children or the non-English-speaking population.

The answers to the questionnaire resulted in the 2004 Health Report of Martha's Vineyard.

By the numbers

Up-island residents (West Tisbury, Chilmark and Aquinnah) were almost five times as likely as down-island residents (Vineyard Haven, Oak Bluffs and Edgartown) to contract Lyme disease.

http://www.capecodonline.com/cctimes/lymedisease17.htm
 

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