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Local Disease, 2005




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NEWS ARTICLE from The Press, 7-20-05, By Julie A. Short

``Cities test positive for West Nile infected mosquitoes

AVON -- Three locations in Avon and two locations in Sheffield Lake have tested positive for mosquitoes infected with the West Nile virus. Avon Lake has not reported any West Nile carrying mosquitoes to date.

"We recently set traps in Sheffield Village but do not have any data available at this time," Scott Pozna, program coordinator for the Lorain County Health Department said. "There have been no cases reported of any humans contracting the West Nile virus ..."

The county has had a dedicated mosquito control program in place since 1976. One part of the program is to control and kill mosquito larva throughout the county.

"A portion of that includes educating the homeowner," Pozna said. "People often think that it's the big bodies of water in the area that are a problem and a breeding ground for mosquitoes. It's really more the buckets of water or standing water residents may have in their yards that attribute to the mosquito population. Water that has been left standing for approximately seven days at time can be a potential problem."

The Health Department has also identified a number of roadside ditches and empty lots that have tires or abandoned pools on them as breeding grounds for mosquitoes.

"We have two ways to control them," Pozna said. "One is Larvaciding (controlling the larva) and the other is Adulticiding (controlling the adult mosquitoes). That's what we do when you see us coming out with the spray trucks. The area municipalities under our jurisdiction have agreed to our policies. Once we have positive results for West Nile, we begin the spray program."

Evening spraying was conducted last week in Avon. "We make the cities aware that they have a positive (West Nile) mosquitoes," he said. "It's up to the cities to notify their residents we will be spraying." ...

Pozna wants to public to be aware of the optimal times for mosquitoes to be out. "It's usually around dusk that you'll find the most mosquitoes," he said. "From around 8 p.m. to midnight. Then it peaks and mosquitoes return about dawn or 4 a.m. It's the female mosquitoes that bite you and they are attracted to humans because of the carbon dioxide mammals give off when they speak. The more people you have outside, the more mosquitoes you are going to attract."

Pozna encourages residents to always use a mosquito repellant containing deet when they are outside.

"We want to caution folks without alarming them" Pozna said. "We are constantly surveying the areas and we've treated any identifiable bodies of standing water such as storm water catch basins, roadside ditches and low lying areas. We're focused on prevention and treating areas of water. Then we focus on sprays."''

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NEWS ARTICLE from the Chronicle-Telegram, 7-29-05, by Matt Keener

``State: Cancer rates high in Avon Lake

632 -- Cancer cases from 1996 to 2002

522 -- Number of cancer cases that would have been normally expected

AVON LAKE -- Concerned residents and members of outside communities packed the common area of Avon Lake High School on Thursday [7-28-05] as a representative from the Ohio Department of Health declared that Avon Lake has a significantly greater rate of cancer than what is expected.

Despite the fact that people were diagnosed with leukemia at a rate 50 percent higher than what was to be expected over the years of 1996 to 2002, health official Robert Indian said that number was not statistically significant because it was from a small data pool ...

Avon Lake resident Peter Bergan, whose daughter had leukemia, questioned the statistics Indian used in the study.

"He's saying there are only two cases of leukemia under the age of 25?" Bergan asked. "I know of at least five under the age of 13 with leukemia. Where did he come up with these numbers?"

Indian, the state's chief of chronic diseases and behavior epidemiology, confirmed that there are at least five more cases of cancer in Avon Lake residents under age 25 from 2002 to 2004, with three of those being leukemia. Indian attributed the greater incidence of leukemia in young people, approximately twice the expected rate, to a fast-growing community.

"The leading hypothesis is that this rate (of leukemia) will increase in growing communities when they are in transition and experiencing rapid growth," Indian said. "It tends to be when there are a lot of mobile sources moving through your community."

A total of 632 cases of cancer were observed from 1996 to 2002, and according to the assessment, 522 should have been expected. The number is approximately 20 percent more than what would be expected, but Indian attributed that to a high incidence of melanoma.

A total of 43 cases of melanoma were observed, versus an expected total of 28, but that didn't account for the total difference.

Indian's assessment didn't include any study of environmental concerns, and many members of the audience questioned why the U.S. Environmental Protection Agency or the Centers for Disease Control and Prevention had not been brought in to study industrial sites in the community.

Lorain City Health Commisioner Terrence Tomaszewski, whose agency was involved in the study, said if the community would like an environmental assessment, one would be done.

"We will address any concerns with the environment," Tomaszewski said. "If that is a concern, we will bring the EPA in."

Mayor Rob Berner cautioned the audience that the ODH study was not the end of cancer assessments in Avon Lake ...

Melissa Walker, of Bay Village, said after the forum that she was days from signing a mortgage in Avon Lake when she began to research environmental issues in the city.

"Mr. Indian is not telling the truth. There is something going on in this town and it needs to be addressed," an outspoken Walker said. "Without accountability, we minimize our problems."

Indian said the ODH is working on an overall map of cancer in Northeast Ohio, after Cleveland Clinic doctors expressed concern that the region as a whole had a great rate of cancer. Indian said the study could be available by December 2006 ...''

Contact Matt Keener at mkeener@chroniclet.com.


NEWS ARTICLE from The Morning Journal, 7-29-05, by SCOT ALLYN, Morning Journal Writer

``AVON LAKE -- After a year of waiting, it is what Avon Lake residents didn't hear about cancer in their community that left them unsatisfied with early results of an Ohio Department of Health study ...

Robert Indian, chief investigator on the Ohio Department of Health's study, told them his study is not complete. However, he suggested Avon Lake's very success in attracting new residents could be partially responsible for the cancer found in its children.

''Communities in transition,'' he explained, with rapid growth, cause environmental disruptions that can expose children to danger. ''Construction, diesel fumes and dust from building materials'' can lead to cancer in children, whose immune systems are more fragile than those in adults.

Indian's study compared new cases of cancer reported in Avon Lake between 1996 and 2002 to what a city its size would expect to see. In some types of cancer, Avon Lake actually reported fewer cases than expected. Cervical cancer, for example, appeared only twice in the community, compared with the 5.42 times it would be expected to surface.

Other cancers were more frequent than expected. Bladder cancer occurred 36 times, as opposed to the 28.14 expected cases. Leukemia was found in 20 people, compared with 15.86 cases expected.

Indian said the most troubling type of cancer was melanoma of the skin. Forty-three people in Avon Lake had it in the period studied, instead of the 27.64 cases that were expected. Indian stressed, however, that his results are not complete and months of work remain before the study is finished.

Indian spoke to a packed house in the commons area of Avon Lake High School. A crowd of about 200 filled all available seats, with dozens of latecomers having to stand. After being introduced by Mayor Rob Berner and Lorain City Health Department Director Terry Tomaszewski, Indian described his study and its early results.

Cards were distributed to the audience so people could write their questions. When Indian finished his presentation, Berner and Tomaszewski took turns reading the questions aloud. But before Indian could answer the first question, a woman in the audience shouted, ''Is it true that B.F. Goodrich dumped vinyl chloride here up to 1992?''

Berner restored order to the meeting, but disruptions continued. Indian was asked dozens of questions, ranging from concerns about the old city landfill on Miller Road to details of the statistical methods he used.

Many residents did not seem satisfied with the forum. Chad and Kimberly Pils, who moved to Avon Lake two years ago from Louisville, said they didn't think Indian was taking the study seriously.

''I'm not sure I believe all the statistics,'' said Chad Pils, who works in packaging sales.

''I've heard of nine or 10 cases of childhood leukemia here,'' he explained, although Indian mentioned only two cases in his data from 1996 to 2002. Indian said three more childhood leukemia cases were added to his study from later data and that he has found the number ''alarming.''

Throughout the meeting, Indian repeatedly reminded the audience he was studying the number and types of cancer in Avon Lake and comparing that with national rates. When asked why he was not studying the soil, air and water of Avon Lake, he suggested residents contact the EPA.

Although Tomaszewski said his department would be happy to answer residents' concerns, the audience voiced dissatisfaction that the present study is not examining the environment. When Berner was asked about a 1984 EPA report, he said he had not seen it. ''I've got it right here,'' said one angry man in the audience.

No other meetings or dates for completion of the study were given.''


NEWS ARTICLE from The Sun, 8-4-05, By LEANA DONOFRIO, Staff Writer

``Cancer study leaves doubt

AVON LAKE -- Resident and physician Michael Sumerfield thought something did not seem right with the numbers on the recent cancer study done by the Ohio Department of Health.

The study was released to more than 200 residents who waited eagerly in the commons of Avon Lake High School for word on the safety of their city last week.

The study examined cases of cancer in the city from 1996-2002 and compared them with the burden of cancer nationally and in Lorain County. A focus area of the study was cancer cases in residents less than 25 years of age. The study examined whether any factors may have played a role in the disease ...

Indian said the numbers do not account for all cancer cases. He did, however, say that an increase in cases often can be seen in growing communities like Avon Lake. He said the movement of people and products can be harmful, especially to young children, who breathe fumes from gasoline and other pollutants and can then develop cancer ...''


NEWS ARTICLE from The Morning Journal, 8-16-05, by SCOT ALLYN, Morning Journal Writer

``Cancer information on Avon Lake is altered

AVON LAKE -- The Ohio Department of Health has added two cancer cases to its study of Avon Lake and reversed the preliminary conclusion that the overall number of cancers found in the city from 1996 to 2002 was ''statistically significant.''

The two cases of cancer added are of types so rare ''no national background rates exist to compare them against,'' a state health department official said yesterday.

ODOH Public Affairs Director Jay Carey would not say what varieties of cancer had been added to the study but said they fall into the ''Other Sites/Types'' category. There are currently 45 cancer types in that category, Carey said, each of which was found in only one patient.

ODOH released its preliminary findings July 28 [2005] at a forum in Avon Lake High School given by Robert Indian, chief investigator in ODOH's study of cancer in Avon Lake. That meeting, before a packed commons area at Avon Lake High School, was marked by several disruptions and questions shouted from the audience.

Carey said input at the forum led to the revision.

''A community member raised some questions about our numbers, so we undertook a formal review,'' Carey said.

According to Carey's statement, the study actually found 634 cases of cancer in Avon Lake from 1996 to 2002, instead of the 632 claimed before.

But the higher number is, ''no longer considered statistically significant,'' according to Carey's release, because now 609 cases were expected, instead of the 522 cited before. This reduces one cause of concern for residents who worry that their community exposes them to a higher risk for cancer than it should.

The updated numbers did not affect Indian's findings on melanoma, which drew the most concern at the public forum on July 28. Indian's study found 43 cases of melanoma in Avon Lake from 1996 to 2002, although only 28 were expected. ''This is deemed statistically significant,'' Carey's press release stated ...''


NEWS ARTICLE from The Sun, 8-18-05, By LEANA DONOFRIO, Staff Writer

``Cancer study has an error

AVON LAKE -- Resident and physician Michael Summerfield was right when he said the numbers on a state study of cancer in city residents from 1996-2002 did not add up.

The Ohio Department of Health said an error was made when calculating the number of total cancer cases it "expected" to see in a community like Avon Lake.

"Although the major conclusions of the report have not changed, the revision was necessitated due to calculation errors in the previous progress report issued and discussed July 28 [2005] in a community forum at Avon Lake High School that evening," said Jay Carey, director of the Office of Public Affairs for ODH.

The number of expected cases originally given was 521.78, with 632 cases of cancer occurring in residents, or 110 more than expected. Despite reports to the contrary, the ODH did say this was "statistically significantly higher than the number of cases expected." ...

The new number is now 609 expected cases, bringing the number closer to what actually was found among residents. The "expected cases" showed a breakdown of the number of all types of cancer -- for example, brain, bladder and melanoma -- that the ODH determined should be found in a community like Avon Lake. When adding up all these cases, as Summerfield did, the total is 569.51.

ODH representatives said this column in "unique" and could not be figured out by simple addition [which yields 569.51] because of a missing column of statistics that accounts for cancer cases ODH cannot identify ...'' [609-569=40 is a lot of cancer cases]

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NEWS ARTICLE from The Plain Dealer, 2-22-05, By Paul Recer, Associated Press

``Bird flu could mutate into human threat

WASHINGTON -- The Earth may be on the brink of a worldwide epidemic from a bird flu virus that may mutate to become as deadly and infectious as viruses that killed millions during three influenza pandemics of the 20th century, a federal health official said Monday.

Dr. Julie Gerberding, head of the Centers for Disease Control and Prevention, said scientists expect that a flu virus that has swept through chickens and other poultry in Asia will genetically change into a flu that can be transmitted from person to person.

The genes of the avian flu change rapidly, she said, and experts believe it is highly likely that the virus will evolve into a pathogen deadly to humans.

She made the remarks in a lecture at the national meeting of the American Association for the Advancement of Science.

In Asia, there have already been a number of deaths among people who caught the flu from chickens or ducks.

The mortality rate is very high - about 72 percent of identified patients, Gerberding said. There also have been documented cases of this strain of flu being transferred from person to person, but the outbreak was not sustained, she said.

"We are expecting more human cases over the next few weeks because this is high season for avian influenza in that part of the world," Gerberding said. Although cases of human- to-human transmission have been rare, "our assessment is that this is a very high threat."

The avian flu spreading in Asia is part of the H1 family of flu viruses. It is a pathogen that is notorious in human history.

"Each time we see a new H1 antigen emerge, we experience a pandemic of influenza," Gerberding said. In 1918, H1 appeared and millions died worldwide. In 1957, the Asian flu was an H2, and the Hong Kong flu in 1968 was an H3.

There had been small appearances of the H1-type of avian viruses in other years, but nothing like the H5 now rampaging through the birds of Asia.

Study already has shown that the virus can infect cats who can then infect other cats, which Gerberding said was "another harbinger" of the possibility of a human pandemic.

The CDC chief said her agency is getting ready for a possible pandemic next year ...

The government has ordered 2 million doses of vaccine that would protect against the known strains of avian flu.

Gerberding said this would give manufacturers a head start on making the shots that would be needed to combat a full- blown epidemic of an H1-type of flu in this country ...

Gerberding said the timeline for producing the regular vaccine yearly is very tight, with little room for problems.

To produce a new vaccine in response to the sudden emergence of an H1-flu bug would require an extraordinary new effort, she said.''


NEWS ARTICLE from The Plain Dealer, 8-20-05, by Regina McEnery, Plain Dealer Reporter

``Flu-shot supply still in question

With flu season approaching, local health departments are gearing up for another perennial problem, an uncertain stock of vaccine.

The federal government is still hoping U.S. manufacturer Chiron and British vaccine maker GlaxoSmith Kline receive approval from the Food and Drug Administration to sell flu vaccine in the United States this fall ...

Dr. Julie Gerberding, who heads the Centers for Disease Control and Prevention, told the packed room that the country ought to be able to solve its persistent problem with vaccine shortages. "Let's get this issue off the table," she said [at the City Club].

Gerberding said the plan now is to offer vaccine first to high-risk populations, such as the elderly, small children or people with poor immune systems. Whatever is left will be offered to the general population.

Chiron was forced to shelve its supply of flu vaccine last year after contamination was found at its plant in Liverpool, England, prompting the FDA to yank the California company's license. Chiron expects to make 18 million to 26 million doses this year, but the FDA still hasn't reinstated Chiron's license and the company continues to have problems with production.

Glaxo is also awaiting FDA approval to sell flu vaccine in the United States. Sanofi Aventis, currently the lone supplier of U.S. flu vaccine for shots, is expected to make 55 million doses. MedImmune, which makes a nasal flu mist, has not disclosed how much it will produce.

Gerberding, who earned both a bachelor's degree and a medical degree from Case Western Reserve University and still talks fondly of her days as a student in Cleveland, spent the afternoon with the Cuyahoga County Board of Health before heading back to Atlanta. "I'm happy to be home," she said before launching into her talk at the City Club. ''

To reach this Plain Dealer reporter: rmcenery@plaind.com


Nature 430, 209-213 (8 July 2004)

``Genesis of a highly pathogenic and potentially pandemic H5N1 influenza virus in eastern Asia

by K. S. Li1 et al.

A highly pathogenic avian influenza virus, H5N1, caused disease outbreaks in poultry in China and seven other east Asian countries between late 2003 and early 2004; the same virus was fatal to humans in Thailand and Vietnam.

Here we demonstrate a series of genetic reassortment events traceable to the precursor of the H5N1 viruses that caused the initial human outbreak in Hong Kong in 1997 and subsequent avian outbreaks in 2001 and 2002.

These events gave rise to a dominant H5N1 genotype in chickens and ducks that was responsible for the regional outbreak in 2003 - 04. Our findings indicate that domestic ducks in southern China had a central role in the generation and maintenance of this virus, and that wild birds may have contributed to the increasingly wide spread of the virus in Asia.

Our results suggest that H5N1 viruses with pandemic potential have become endemic in the region and are not easily eradicable. These developments pose a threat to public and veterinary health in the region and potentially the world, and suggest that long-term control measures are required.''

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NEWS ARTICLE from the Morning Journal, 7-29-05, by ALEX M. PARKER, Morning Journal Writer

``MS [Multiple Sclerosis] findings to be presented

LORAIN -- Findings of a multi-year study of the prevalence of multiple sclerosis in Lorain County will be presented next week, said Ken Pearce, Lorain County health commissioner.

The study is part of a nationwide look at MS and was conducted by the Ohio Department of Health and the Agency for Toxic Substances and Disease Registry, a subset of the Centers for Disease Control.

Lorain County and counties in Texas and Missouri were part of the study. Examiners looked at the number of cases reported to physicians between 1998 and 2000.

In January 2004, Pearce told The Morning Journal that the study found Lorain County had 146 cases per 100,000 people, more than any other counties examined.

Pearce noted that MS cases tend to increase as one moves north. Scientists have many theories for that phenomenon but have come to no conclusion.

The results of the finalized study will not dramatically differ from the information he revealed last year but will put the information into perspective and discuss future studies, Pearce said.

A second study will conduct a ''case-control study'' by examining cases individually, comparing a subject with MS to someone in a similar environment without MS, Pearce said. The goal would be to determine what factors, if any, could contribute to the disease. Scientists have not yet been able to pin down what causes MS.

The study was prompted when Lorain County health officials contacted the Ohio Department of Health about the abnormally high number of MS cases in Wellington. That study was rolled into a nationwide study examining different regions of the country.

With 25 cases of MS in a village of 4,200, Wellington's rate of the disease is nearly five times the national average. Health officials have not yet been able to determine if the high rate is due to environmental factors in the area, such as the nearby Sterling Foundry, a virus or if it is simply a coincidence ...''


NEWS ARTICLE from the Chronicle Telegram, 8-4-05, by Cindy Leise

``Feds start MS study; County cases 32 percent higher; Wellington worse

Health officials will embark on a study to determine whether genetics, pollutants in the environment, viruses or other factors are behind the elevated number of multiple sclerosis cases in Wellington and the rest of the county.

Blood will be drawn from 500 people with MS living in Lorain County, and also in a 19-county area surrounding Lubbock, Texas, and Independence and Sugar Creek, Mo. Health officials will study those people and compare the results to similar data from 1,000 people who do not have MS.

The 1,500-person study is the first of its type and its results could help target causes or even help lead to a cure, said Robert Indian of the Ohio Department of Health. The issue of whether something in Wellington is triggering the disease "is the elephant in the living room," he said. "It's the ultimate question," Indian said. "We wouldn't want to see a community stigmatized but this gives us a very good opportunity of finding something out."

At the same time they announced the new study, officials said they have prepared a draft report that indicates Lorain County has rates 32 percent higher than the national average, and that the number of cases in Wellington is three times the county rate ...

Molly Smith, whose 21-year-old daughter Hailey lost sight in one eye due to MS, said she thinks the now-defunct Sterling Foundry played a part in the onset of her daughter's disease. "It used to leave the metal dust all over," Smith said. "My concern has always been what went up that stack and out into the air."

Factories run by Sterling Foundry and LESCO Inc., which manufactured herbicides, pesticides and solvents, are closed, so the study can no longer examine the environmental impact, said Kenneth Pearce of the Lorain County Health Department.

The study did already collect data, mostly self-reported, from Sterling Foundry and Forest City Technologies, which continues to operate several factories in Wellington, but it does not indicate whether residents were exposed to chemicals or the level of exposure, according to Robert C. Frey of the Ohio Environmental Protection Agency. Forest City produces seals, gaskets and O-rings for the automotive industry as well as synthetic coatings.

Self-reported emissions at Sterling Foundry in 1998, 2000 and 2001 showed an annual release of 500 pounds of chromium and 5,000 pounds of methanol into the air and off-site disposal of 43,400 pounds of chromium waste ...

The study only counted those who had seen a neurologist in the three-year period between 1998 and 2000, lived in Wellington and were diagnosed with the disease.

Pearce said the 1,500 people to be studied, which includes the 500 with MS in Lorain County, Texas and Missouri, will be tested for genetic susceptibility and will be questioned about: * residential history; * medical history; * occupational history; * reproductive history, and * genetic susceptibility including analysis of 12 genes;

"The biggest bang to federal dollars is to study all these people to see if we can determine what causes the disease," Pearce said.

There aren't enough people with MS in Wellington to merely study that community alone, according to Indian and Dr. Delia Williamson of the federal Agency for Toxic Substances and Disease Registry ...''


NEWS ARTICLE from The Plain Dealer, 8-4-05, by Molly Kavanaugh, Plain Dealer Reporter

``Officials to study multiple sclerosis in Lorain County

CARLISLE TOWNSHIP -- Lorain County, home to an unusually high rate of multiple sclerosis, will be part of a groundbreaking national study examin ing environmental and genetic factors that may lead to the disease.

The ATSDR allocated $100,000 to the ODH and the Lorain County Health Department for the expanded study, which is expected to be completed by September 2006, according to Williamson.

Multiple sclerosis is a disease of the central nervous system. It may last for years and eventually cause serious disabilities, including paralysis of the legs and partial loss of vision.

Multiple sclerosis afflicts more women than men, and most victims begin to have symptoms of MS when they are between 20 and 45 years old, according to past studies conducted by health agencies.

Its cause is unknown and there is no cure. The disease is not fatal, but it can cause complications with organs that can lead to death, said Lorain County Health Commissioner Kenneth Pearce ...

In the results of a $146,000, five-year MS prevalence study the Atlanta-based ATSDR and the ODH released yesterday, health officials revealed that Lorain County, with a population of 284,664, has the highest rate of confirmed MS cases per 100,000 people between 1998 and 2000 in comparison to two other regions that were studied in the time period, according to the ATSDR.

Overall, Lorain County has 320 MS cases, translating into 112 cases per 100,000, according to numbers released by the ODH and Pearce. Lubbock, Texas, with a population of 424,916, had 182 confirmed MS cases and Jackson County, Mo., with a population of 120,799, many living near an ore refinery, had 106 cases, according to the ATSDR ...

However, the number of confirmed MS cases of people who lived in Wellington between 1998 and 2000 was 17, which could be one of the highest prevalence rates in the United States for a town Wellington's size, Williamson said.

Several of the Wellington residents diagnosed with MS lived near the former Sterling Foundry on Erie Street, a metal castings factory that closed about four years ago ...''


When To Suspect Lyme Disease

by John D. Bleiweiss, M.D., April, 1994

``... Many patients are told that they have Multiple Sclerosis (MS) because of brain MRI findings or a spinal tap was positive for oligoclonal bands (OCB) or myelin basic protein (MBP). The medical literature is quite emphatic that MRI does not reliably distinguish between MS and Lyme Disease because there is too much overlap in their supposedly distinct appearance and location of plaques.

Plaques have been detected with both disorders in the brain and spinal cord. OCB's and MBP are non-specific markers for demyelination (loss of sheath around nerves) and do not signify a cause of the demyelination. In Miklossy's study above, senile plaques stained avidly for Borrelia burgdorferi spirochetes.

Vincent Marshall reviewed the MD literature in Medical Hypothesis (Vol 25: 89-92, 1988) and advances the notion that Lyme Disease is causing MS! His survey revealed that multiple studies prior to 1951 were able to demonstrate spirochetes in the spinal fluid of MS patients (by inoculation into animals and on silver stain of Central Nervous System tissues).

Dr. Coyle has documented the presence of antibodies to Borrelia burgdorferi in MS patients (Neurology Vol. 39:760-763, 1989). The encephalopathy attributed to MS is very reminiscent of Lyme Disease. Both MS and Lyme Disease are associated with sinusitis (Lancet, 1986).

Dr. Leigner has reported a case of Lyme Disease which fulfilled all criteria for MS. The epidemiology of MS and the geographic distribution parallels that of Lyme Disease. The symptoms of both Lyme Disease and MS can be aggravated if the patient takes a hot bath. Anecdotally, patients with Lyme Disease, who previously had been identified as MS, responded to antibiotic therapy.

Lyme Disease has been documented to cause strokes, paralysis, a variety of seizures, transient or permanent blindness, Parkinsonian-like movement disorders, motor and/or sensory neuropathies, mononeuritis multiplex, radiculoneuritic pains, meningitis and encephalitis. It has been affiliated with Lou Gehrig's disease and the Guillain-Barre Syndrome ...''


MEWS ARTICLE from The Herald Press [Bristol, CT], 8-20-05, By CHRISTINE PALUF

``Misdiagnosis causes months of confusion for Lyme sufferer

BRISTOL -- Melissa St. James has spent her fair share of time at hospitals lately, and its not only because she works in one.

Since April [2005], she, her husband and her children have all been diagnosed with Lyme disease. What made matters worse was that St. James was originally diagnosed in November of last year [2004] as having Multiple Sclerosis, a far more debilitating, expensive and serious condition -- especially for someone without insurance coverage.

"My doctor told me, You have MS, and the injections are $1,500 a month," St. James said. "Let me know how you'll do that.

"I just started crying," St. James said. "Ive worked in nursing hom es. Ive seen 40-year-olds with MS." "I asked him if it could be Lyme disease. He said, Absolutely not ..."

St. James sought a second opinion. That doctor listened to her inquiries about whether she could have Lyme disease. He too, however, discounted her information and reaffirmed her original diagnosis ...

After taking injections for three and a half months, not only was St. James not improving, her symptoms were getting worse. After seeing a neurologist in January, she was told that that the exacerbations, sudden worsening of MS symptoms, that rendered her unable to walk, usually only occurred about two times a year in most MS cases. St. James was having the attacks every six weeks.

The muscle and joint pain was compounded by chronic fatigue. Daily tasks such as cooking and cleaning became nearly impossible ...

Confusion was another aspect of the disease that St. James believes contributed to a car accident she had in January. "There's this brain fog, you're not as sharp. I was having speech difficulty -- my words would get confused. I'd want to say picnic table and I'd say play pen. The way my husband and kids would look at me ... I just couldn't live like that anymore. One day I just decided I was stopping the injections," St . James said. "They werent helping me ..."

St. James weened herself off of pain medication and anti-spasmatic medication as well. "I was really scared, I had that wheelchair in the back of my mind," St. James said.

After discontinuing the shots, St. James found a "Lyme-literate" doctor, recommended to her by a friend who had a similar misdiagnosis. This doctor listened to her input and finally tested her for Lyme disease. He then started her on antibiotics, commonly prescribed for a few weeks to treat the disease. However, when symptoms persist, they can be used for longer periods of time.

"Within two and a half months I had 90 percent resolution of symptoms," St. James said. "My attitude changed immediately."

"There was no more limping, no numb leg dragging along. The pins and needles from my hips to my feet were so bad I used to get sick to my stomach ... I haven't had that feeling in so long," she said, smiling. "It was a complete turn-around."

Lyme disease can be very difficult to detect ... When the test results come back negative, the common tendency is to rule Lyme out completely and look for another cause. However, the longer the disease is misdiagnosed or not found, the harder it is to reverse it.

Symptoms of Lyme disease can also easily be attributed to other diseases. And the initial flu-like stage with fatigue, headache, muscle aches and fever, or the nausea, vomiting, diarrhea, dizziness and vision changes are common to many other ailments.

For someone without insurance, it can be even more of a challenge to find the cause of the pain and discomfort that Lyme disease can cause.

A St. James friend of 15 years was diagnosed as having MS at the beginning of their friendship, and has spent the past 10 years in a wheelchair. Upon St. James suggestion, she was examined and tested for Lyme disease. The tests came back positive.

"Ive never seen someone so happy to have Lyme disease," St. James said. "But they did four tests on my girlfriend (who had insurance) and they only did one on me."

St. James current doctor treats her the best he can with the resources that are available to him. "My doctor told me he could treat me so much better with insurance," St. James said.

"Lyme is the easiest and cheapest solution," St. James said. "But these autoimmune diseases are big money makers ... No one said that for $35 a month in antibiotics instead of $1,500 in daily injections, I'd be getting better."

Since her diagnosis was corrected, St. James has few lingering medical issues. Unfortunately, the bills related to her misdiagnosis are one of them.

"I owe UConn thousands of dollars when I got no help. The (neurologist) put me on Prednisone, which is the worst thing for a bacterial infection because it suppresses the immune system. I got worse; so I weened myself off it," St. James said. "There was no follow-up from my doctor. But I do get his bills."

Yet her resolve is unchanged. St. James serves as a contact person for the Greater Hartford Lyme Disease Support & Action Group, www.ctlymedisease.org

"This is important for people to know. At least I have the medical knowledge and the resources to know which direction to go in. What about people who don't?" St. James said. "It upsets me that they're just left hanging. I want to equip the patient with the knowledge, because the doctors aren't doing it."

"I just thank God so much that I have my life back," St. James said.''

[For information on the RIBb test:
JoAnn Whitaker, M.D.
Bowen Research and Training Institute, Inc.
P.O. Box 627
Palm Harbor, Florida 34682
Tel: 727-937-9077
Fax: 727-942-9687
bowenresearch@earthlink.net ]


Links from Lymenet Flash Discussion group was assembled from info given by people who post there -- Updated 06/08/05

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NEWS ARTICLE from The Plain Dealer, 8-25-05, by Harlan Spector, Plain Dealer Reporter

``Killer intestinal bug stalks NE Ohio hospital patients

Virulent strain now blamed for increasing number of deaths

Cystic fibrosis had landed Kathryn Kunsman in the hospital again in August 2002. Twice a year, the 22-year-old University of Akron student went to University Hospitals of Cleveland for a few weeks of antibiotic infusions.

The treatment was necessary to prevent infections from the thick mucus that clogged her lungs.

Kathryn's disease was certain to cut short her adulthood. But it was an intestinal bug, one of the most common hospital-acquired infections, that led to her death one month after she entered the hospital.

The bacteria, Clostridium difficile -- "C. diff" for short -- is responsible for an increasing number of deaths reviewed by the Cuyahoga County coroner.

C. diff infections are growing in numbers and severity in Northeast Ohio, doctors and health officials say. Hospital outbreaks have been re ported in six states, in Can ada and in Britain.

More than 100 patients died in outbreaks in Quebec, Canada, last year [2004]. The Pennsylvania Patient Safety Authority, a state agency, reported in June that it had received reports of 15 deaths linked to C. diff.

The bacteria spread when patients come in contact with surfaces or health care workers contaminated with feces. C. diff has long flourished in hospitals and nursing homes. For many patients, infections bring nothing more than diarrhea.

Experts cite a number of reasons why C. diff is emerging as a greater public health threat.

A newer, more virulent strain has crept into U.S. and Canadian hospitals. Patients are more susceptible because they are older and sicker. Blame also falls on poor hospital hygenic practices.

But focus has been mostly placed on the liberal use of broad-spectrum antibiotics, which kill many kinds of bacteria, including natural bacteria in the gut that protects against C. diff infections.

Most patients get sick from C. diff after receiving antibiotics because of surgery or for any number of reasons.

In cases like Kathryn's, the infection rages out of control, producing toxins that destroy cells in the colon. Kathryn underwent surgery to remove her colon. She died afterward ...

Hers was among 10 deaths related to C. diff reviewed by the coroner's office since 2002. The office had seen no C. diff cases the previous 15 years, said Coroner Elizabeth Balraj.

The true number of C. diff-related fatalities in Cuyahoga County is likely to be much higher than 10. The coroner reviews hospital deaths only under special circumstances, such as when a patient dies during or after surgery.

Patients who fare the worst from C. diff infections usually have underlying health problems. Several elderly patients whose deaths were reviewed by the coroner had been hospitalized because of falls. They became infected by an overgrowth of C. diff bacteria in the colon, and the infections spilled into the bloodstream, the coroner found ...

Hospital officials say they have instituted new infection-control measures. University Hospitals recently shifted away from antibiotics most likely to trigger C. diff-related illness, said Dr. Robert Salata, chief of infectious diseases.

The hospital also stepped up testing for infected patients and is reminding health care workers that alcohol hand gel is ineffective against C. diff bacteria (soap and water is preferred).

But local health officials have a difficult time getting their arms around the problem. Hospitals are not required to report C. diff infections, leaving state and county health authorities without hard information about the scope or severity of cases ...

Officials at MetroHealth Medical Center, the Cleveland Clinic and University Hospitals declined to disclose infection rates at their institutions.

"We are not comfortable doing that because there is no universal standard by which all hospitals in our area define, record, or track the problem," MetroHealth spokeswoman Luzon Thomas said in an e-mail.

"For example, we have diagnosed the problem among some of our MetroHealth patients who are seen in an outpatient setting, but who apparently acquired the disease as an inpatient at another hospital. Thus, until there is a standardized system, the comparison of hospital numbers is apples to oranges."

MetroHealth earlier this year began isolating infected patients and requiring health care workers to wear gloves and gowns, said Dr. Jennifer Hanrahan, an infectious disease specialist.

Hospitals also began cleaning patient rooms with diluted bleach to kill C. diff bacteria spores, which resist many disinfectants and can survive on surfaces for months ...

Some suggest that lax hygiene has accelerated the pace of hospital-acquired illnesses, which are estimated to cause 90,000 deaths a year. Rates of hospital infections increased by about 20 percent between 2000 and 2003, according to a recent report by Health Grades Inc., a private hospital rating service.

"The real answer here is to make hospitals cleaner," said Betsy McCaughey, the founder of the Committee to Reduce Infection Deaths. "Hospitals were much cleaner places 50 years ago, before the liberal use of antibiotics replaced proper hygiene."''

See They won't wash their hands

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