"Sezon na Kleszcza" cz druga

[artur737]

Zakladam nowy watek "Sezon na Kleszcza", ktory jest w sumie kontynuacja pierwszego. Poprzedni zrobil sie za dlugi.
Beda w nim artykuly z prasy na temat boreliozy i aktywizmu. Byc moze kiedys stana sie natchnieniem dla jakiegos polskiego dziennikarza chcacego pisac na ten temat.

Stary watek z okolow 200 postami mozna znalesc tu:

forum.gazeta.pl/forum/72,2.html?f=26140&w=22249009

Expert Critical of New Treatment Guidelines

[artur737]

Lyme Wars: Lyme Disease Expert Critical of New Treatment Guidelines

www.theopenpress.com/index.php?a=press&id=14472
Published on: November 28th, 2006 12:06am by: [e-mail]


Mount Kisco, NY (OPENPRESS) November 28, 2006

[artur737]

Jeszcze jeden artykul na temat wojen boreliozowych i na temat ostatniego
protestu.

www.rep-am.com/story.php?id=16549&p=0
Lyme disease report spurs patients' rights protests

Saturday, December 9, 2006

BY GENNADY SHEYNER

Republican-American

A new report on diagnosis and treatment of Lyme disease has divided the medical
community and outraged patients' advocates, who claim the new guidelines will
further endanger victims of the tick-borne disease.

And now, Attorney General Richard Blumenthal is investigating whether the
Infectious Diseases Society of America discounted competing views when it
published its controversial new guidelines in the November issue of Clinical
Infectious Diseases.

Among the report's most controversial points is its finding that the vast
majority of Lyme disease cases can be treated in less a month, an assertion
that has infuriated activists who believe the new guidelines will mislead
physicians, restrict treatment options for patients and allow insurance
companies to refuse compensation for treatment.

Sandy Berenbaum is a Southbury resident who struggled with the disease for six
years before it was finally diagnosed in 1990. A social worker who runs a
counseling clinic in Brewster, N.Y., Berenbaum has seen many children ravaged
by the disease over her years of practice.

One boy suddenly turned psychotic and had to drop out of school. Another one
couldn't walk or speak and became so sensitive to noise that he had to wear
noise suppressors on his ears. In both cases, she said, the patients ultimately
recovered after years of Lyme treatment.

"These guidelines take away the ability of doctors to use their clinical
judgment," Berenbaum said. "They are extremely restrictive and they are
essentially claiming that anything beyond 30 days is not an active, persistent
infection and should not be treated."

On Oct. 30, Berenbaum was one of about 300 people from 16 states at a rally at
Westchester Medical Center in Valhalla, N.Y., which employs three members of
the IDSA committee that issued the report, including lead author, Dr. Gary
Wormser. Also in attendance were Maggie Shaw, a registered nurse from Newtown
who co-founded the Newtown Lyme Disease Task Force, and Colleen Collins, a
Wolcott resident who became a patient activist after her four children
contracted the disease in 2003.

Both Shaw and Collins have suffered from Lyme disease and say doctors have
repeatedly misdiagnosed their symptoms. Shaw said her son Ryan, now 18,
suffered from the disease between the ages of 4 and 10, during which time his
symptoms included severe anxiety, arthritis in every joint of his body, intense
rages and partial facial paralysis. Her daughter Taylor, now 15, developed a
rash on her face when she was 12, but her doctor told her to consult a
dermatologist. When Taylor developed six more rashes the next day, Shaw knew
the problem was more severe than initially feared.

Her other son, Grant, 10, suffered hallucinations until he began to regularly
take antibiotics.

"Almost every drug we used, the IDSA guidelines say we shouldn't take," Shaw
said.

Collins's problems began in May 2003, when her daughter Kaelee, now 10, was
bitten by two ticks and became infected. But even as Kaelee suffered through
seizures, headaches and severe nausea, none of the doctors she consulted could
tell her what's wrong. Her three siblings also contracted Lyme disease and
suffered symptoms ranging from leg paralysis, intense blinking, burning
sensations and dilated pupils.

Collins and Shaw said their children's conditions only started improving after
they consulted Dr. Charles Ray Jones, a New Haven-based Lyme disease
specialist. Most other doctors, Shaw said, are misinformed about the disease
and will become even more confused because of the ISDA guidelines, which are
treated as more or less sacrosanct by the Centers for Disease Control, which
links to the guidelines from its Web site.

"These guidelines are keeping doctors ignorant of the disease," Collins said.

Dr. Eugene Shapiro, one of the 14 authors of the IDSA report, said that while
it's possible for people who previously suffered from Lyme disease to develop
paralysis or other symptoms after their disease was treated, that doesn't mean
that the new symptoms are necessarily related to Lyme disease. The report, he
said, is based on the best scientific evidence, which he said argues against
use of antibiotics.

"There is no evidence of benefits from prolonged courses of antibiotics and
substantial evidence of multiple risks to patients and society," said Shapiro,
a professor at Yale University School of Medicine Department of Pediatrics. "We
had numerous reports of people dying from complications, including cases of red
blood cells breaking apart and problems with gall bladders.

"The key is to base your approach on scientific evidence, not anecdotes," he
said. "If someone says they have Lyme disease, what evidence do they have that
it's really Lyme?"

Dr. Raphael Stricker, a San Francisco-based Lyme disease specialist, said such
a response ignores the pattern of symptoms exhibited by victims of Lyme disease
months and years after the initial diagnosis. Stricker serves as president of
the International Lyme and Associated Disease Society, an organization of about
300 Lyme experts that has its own guidelines for treating the disease. Shortly
after the IDSA report was published, Stricker wrote a letter to Clinical
Infectious Diseases calling for a retraction.

"They took ILADS guidelines and took out everything we recommended," Stricker
said. "This is a clear attack on what physicians are doing and it's extremely
restrictive.

"These guidelines will have a chilling effect on physicians, who will now be
unwilling to treat diseases because otherwise they will have to explain to
medical boards why they aren't following the IDSA recommendations," he
continued.

The biggest beneficiaries of the new report, he said, are insurance companies,
who can now use the guidelines to justify not compensating victims for
treatment beyond the 30-day period.

Blumenthal agreed. Last month, he launched an investigation to uncover whether
IDSA excluded dissenting opinions when putting the report together. While he
said there is no evidence that any laws have been violated, he pointed out that
the panel "seemed to have been limited to physicians with one point of view."
As a result, consumers may find that their options for receiving treatment are
severely restricted, he said.

"Whatever the physician and the patient decide is appropriate must be covered,"
Blumenthal said. "These guidelines potentially restrict the treatment and
diagnostic measures and, thereby, enable insurance companies to restrict their
coverage."

In Connecticut, where Lyme disease was first recognized, there were 1,810
reported cases of Lyme disease in 2005, a 34 percent increase from the previous
year, according to CDC. Only New York, Pennsylvania, New Jersey and
Massachusetts had more reported cases.

Congressmen give gift of hope

[artur737]

Szereg kongresmenow z USA podpisalo list skierowany do Dr Julii Gerberding stojacej na czele CDC z wyrazem niepokoju dlaczego CDC na swoich stronach internetowych zamieszcza link do nowych wskazowek leczenia boreliozy z IDSA bez ich uprzedniej weryfikacji.


CONGRESSMEN GIVE GIFT OF HOPE

TO CHRONICALLY ILL LYME PATIENTS

December 15, 2006- Shortly before returning home for the holidays, Maryland's Congressmen Gilchrest, Wynn, Bartlett, Van Hollen, Cummings, Ruppersberger, Cardin and Hoyer signed the Lyme Disease Member Letter, sponsored by Congressman Christopher Smith from New Jersey. Chronically ill Lyme patients across the state were encouraged and very thankful for the unanimous support from their state Congressional delegation.

The Lyme Disease Letter, addressed to Dr. Julia Julie Gerberding, Director of the Centers for Disease Control and Prevention (CDC), expressed concern about the posting of the new Infectious Diseases Society of America (IDSA) guidelines on the CDC’s website without adequate review by the CDC.

The IDSA guidelines limit a physician’s ability to clinically diagnose patients, limit adequate preventative and curative treatment protocols, and provide insurance companies a basis for the denial of services. In addition, they promote reliance on lab tests that have repeatedly been demonstrated to be unreliable and concentrate on short-term treatment protocols deemed “cost-effective” rather than necessarily curative or supported by solid science.

The letter follows a Civil Investigative Demand issued by the Attorney General of Connecticut to the IDSA, initiating an investigation of the IDSA’s use of exclusionary tactics in developing their guidelines. Both the national non-profit Lyme Disease Association representing patients and the International Lyme & Associated Diseases Society representing treating physicians requested input into the guidelines process and were denied.

Lyme disease is currently the most prevalent vector-borne disease, with over 230,000 new cases in the United States annually. The CDC estimates for every case reported in Maryland, 7-12 are being missed (CDC- Surveillance for Lyme Disease, United States, 1992—1998, Division of Vector-Borne Infectious Diseases, National Center for Infectious Diseases). According to their estimated calculations, if current trends continue, by the year 2020 approximately 1/5 of Maryland's population will have been exposed to Lyme disease.

If Lyme is not properly diagnosed and adequately treated in the early stages, the spirochetal organism can affect every organ and system in the body. Arthritis, encephalopathy, neurocognative disorders, facial paralysis, muscle involvement and heart problems are some of the manifestations of chronic Lyme disease.

Maryland Lyme Disease Support Group leaders believe the IDSA guidelines are grossly inadequate and have the potential to severely affect those who are bitten and require rapid diagnosis and treatment, as well as those who are already chronically ill with tick borne infections.

Gilchrest among congressmen questioning guidelines

[artur737]

Dostalem emailem, nie wiem gdzie wydrukowano. Troche o demonstracji i troche o kongresmanach ktorzy sie niedawno wlaczyli do akcji i podpisali krytyczny list do CDC.

Gilchrest among congressmen questioning guidelines

By STEVE NERY
Staff Writer
December 15, 2006

VALHALLA, N.Y. - Nearly 400 people, including more than 40 from a bus that departed from Easton, protested the Infectious Disease Society of America's new Lyme disease diagnostic and treatment guidelines outside of a New York hospital on Nov. 30.

The IDSA released its new guidelines in October, and have since come under fire from patient-advocate groups such as the Lyme Disease Association and the International Lyme and Associated Diseases Society.

Unless a "bullseye rash" is visible, the group still recommends blood testing, which critics contend has been proven ineffective in studies.

Long-suffering Lyme disease patients also charge the new guidelines essentially deny that "chronic Lyme disease" even exists, and prevents them from being treated. Lyme disease is caused by the bacteria Borrelia burgdorferi, transmitted through tick bites.

Three of the guideline authors - lead author Gary Wormser, Raymond Dattwyler and Robert Nadelman - all work at the Westchester Medical Center, which the protesters picketed outside for three hours.

The crowd included people from Texas, Washington, California, Pennsylvania, Florida, Maryland and Delaware, said Lucy Barnes, director of the Lyme Disease Education and Support Groups of Maryland.

More than 40 of the protesters, many of them with Lyme disease-related disabilities, came on a bus originating in Easton and stopping in Centreville, Elkton, Claymont, Del., and by the New Jersey Turnpike.

The trip from Easton and back took 12 hours, Barnes said.

The group included children, elderly people, a Maryland doctor, several nurses, and Douglas W. Fearn, the author of "Lyme Disease and Associated Disease Basics," Barnes said.

A Talbot County patient also called her at the last minute to get a ride, having just come from a doctor's appointment and denied treatment because of the new [] guidelines, she noted.

President Pat Smith of the Lyme Disease Association and Dr. Joseph Burrascano Jr. of the international group spoke at the protest. The protesters created a 14-foot-long memorial with hundreds of names of people who died from Lyme disease, Barnes said.

Patients who could not come called the hospital from across the country all day long and told their Lyme stories and their dissatisfaction with the three doctors, Barnes said.

Lyme disease patients also received the support from a group of congressmen, including Rep. Wayne T.Gilchrest, R-Md.-1st, who last week sent a letter to the Centers of Disease Control questioning their implicit support of the IDSA guidelines.

The CDC posted a link to the IDSA guidelines on its Web site, but did not include information about the group's guidelines, which address chronic Lyme disease.

In the letter, addressed to CDC Director Dr. Julie Louise Gerberding, the congressmen write, "We are concerned that these guidelines have the potential to effectively shut down all treatment for chronic Lyme disease."

The authors critiqued the position of the international group that only the bullseye rash is enough for a clinical diagnosis.

"This seems a remarkably broad restriction since there is currently no commercially viable or available gold standard for the diagnosis of Lyme disease," the letter reads.

Less than half of all infected people recall the tick bite, according to the international association, and more than half never develop the bullseye rash.

The new guidelines, the congressmen wrote, "appear to ensure that no physicians treat chronic Lyme disease and that many patients are denied access to care."

The IDSA guidelines state that a few weeks of antibiotics produces a highly favorable outcome, and urges doctors not to administer alternative treatments. Lyme support groups favor treatment taken on a case-by-case basis.

IDSA and ILADS disagree on the optimal therapy

[artur737]

www.infectiousdiseasenews.com/200612/frameset.asp?article=lyme.asp
Medyczne czasopismo (kontrolowane przez IDSA) opisuje troche konflikt w leczeniu boreliozy oczywiscie kladac wiekszy nacisk na wlasna opinie, ale przynajmniej przedstawiajac opinie ILADS. W artykule jest wspomniane, ze obecne najnowsze wskazowki IDSA sa pod obstrzalem.

Infectious Diseases News*


Breaking News
Controversies surround treatment of Lyme disease
IDSA and ILADS disagree on the optimal therapy for patients with Lyme disease.

by Jay Lewis
IDN Managing Editor


December 2006

TORONTO – The duration of treatment for Lyme disease has become a somewhat divisive issue among physicians. Fueling this controversy, two major medical associations – the Infectious Disease Society of America and the International Lyme and Associated Diseases Society – have released diverging recommendations regarding the diagnosis and treatment of Lyme disease.

At the Infectious Disease Society of America’s (IDSA) 44th annual meeting, Raphael Stricker, MD, president of the International Lyme and Associated Diseases Society (ILADS) and medical director of Union Square Medical Associates in San Francisco, and Paul Auwaerter, MD, clinical director of the division of infectious diseases at Johns Hopkins University School of Medicine in Baltimore, discussed the controversy regarding treatment for Lyme disease.

Difficult to diagnose

Stricker said he believes one factor adding to the Lyme disease controversy is that the disease can be difficult to diagnose. The classical symptoms of Lyme disease, transmitted by tick bite, include a bullseye–shaped rash and swelling or pain in the joints.

“The problem is that these classic features of Lyme disease are somewhat unreliable,” Stricker said. “Only 50% to 60% of patients typically recall a tick bite; the rash is reported in only 35% to 60% of patients; joint swelling typically occurs in only 20% to 30% of patients.” Stricker added that in some patients, joint swelling may be masked by anti-inflammatory medication.

Stricker said many patients with Lyme disease will continue to experience a variety of symptoms, even after treatment. “Some of these patients may go on to develop a syndrome of multiple, nonspecific symptoms, making it very difficult to diagnose and treat as Lyme disease,” he said. “The question becomes: is this post-Lyme syndrome or a persistent infection?”

One reason for the difficulties in diagnosing Lyme disease is that Borrelia burgdorferi, the spirochete that is the disease’s causative agent, has an unusual genetic makeup. This spirochete contains more than 1,500 gene sequences and has at least 132 functioning genes. Due to the organism’s complex pathophysiology, it can evade the body’s immune system, thus making it more difficult to eradicate.

According to Stricker, Borrelia burgdorferi invades multiple tissues and is able to assume a dormant state much like tuberculosis, which can add to the diagnostic difficulties.

In addition to these complicating factors, laboratory testing for Lyme disease is flawed. “Lab testing is not very good for the diagnosis of Lyme disease,” Stricker said. “Commercial testing has about a 90% specificity but only a 50% to 60% sensitivity. This is too insensitive for a reliable diagnostic test.”

Extended therapy

In accordance with the position of ILADS, Stricker said he believes extended therapy for Lyme disease is sometimes necessary, particularly in later disease that is more difficult to eradicate.

Stricker also noted that failure to respond to current Lyme disease treatments may be more common than many doctors realize. “Culture-confirmed failure of antibiotic treatment was first reported in 1989,” he said. “Studies have shown that Borrelia burgdorferi can persist after antibiotic treatment.”

This remains a particularly contentious issue and many in the medical community believe there is insufficient evidence to prove the persistence of Borrelia burgdorferi after antibiotic treatment. But Stricker noted that several studies conducted in animals – including mice, dogs and monkeys – indicate that the bacteria can persist after treatment is completed. Persistence in humans has been confirmed by culture or molecular testing in at least 12 studies.

Stricker added that there is extensive clinical evidence supporting a longer duration of antibiotic therapy in treating chronic Lyme disease. Studies from several teams of researchers indicated that a longer duration of treatment may be beneficial for some patents with Lyme disease. “Prolonged antibiotic therapy appears to be useful and appropriate in persistent Lyme disease,” Stricker said.

Science in this area is still evolving, according to Stricker. “We don’t have all the answers and it is too early to adopt treatment strategies that assume we do. Meanwhile, doctors need flexible treatment approaches,” he said.

Tickborne coinfections may also be a problem and may exacerbate the symptoms of Lyme disease. “If a patient comes back in follow-up and has symptoms that have persisted or symptoms that have gotten worse, it may be because they are coinfected,” Stricker said. “Although these patients have been treated for Borrelia burgdorferi, they may have coinfection with babesia, anaplasma, ehrlichia or bartonella.” He added that extended antibiotic therapy may help to treat these coinfections as well.

[artur737]

IDSA’s view

Concurring with the IDSA, Auwaerter said he disagrees that extended therapy is the best option for patients with Lyme disease. “Long-term antibiotics are not in your patients’ best interest,” he said. “Prospective data do not suggest a significant benefit from longer term courses of antibiotics in patients with Lyme disease.”

Auwaerter urged health care professionals to consult the new IDSA guidelines for treatment of Lyme disease, which were released in October.

In addition to offering recommendations for treatment of Lyme disease, the new guidelines attempt to clarify the disease. Auwaerter said the controversy regarding Lyme disease treatment may be related to the lack of definitive data and confusing terminology. For example, he said chronic Lyme disease should be called “Post Lyme Disease Syndrome.” The definition of this is one of the most important additions to the new guidelines. Patients should be considered to have this syndrome if they still have symptoms of Lyme disease after six months, defined by the CDC criteria; patients who had these symptoms prior to the diagnosis of Lyme disease should be excluded. Post Lyme Disease Syndrome may be present if patients are still experiencing symptoms such as fatigue, widespread musculoskeletal pain, cognitive problems and a significant reduction in functional status after an appropriate antibiotic course.

“The subjective problems may be difficult to quantify, but the patient does not feel well and it is a marked difference from the past,” Auwaerter said. However, he stated that even if patients have Post Lyme Disease Syndrome, longer-term therapy with antibiotics may not offer a significant benefit.

A lack of evidence

Auwaerter said there is a lack of evidence to indicate that long-term antibiotic therapy will help to cure Lyme disease. “Longer term therapy with antibiotics does not influence outcomes,” he said.

He noted one study by Klempner et al that examined 78 patients with Lyme disease; the average duration of symptoms of Lyme disease was four years. The patients were randomized to treatment with either an antibiotic regimen or placebo. All patients had well-documented Lyme disease and had already been treated with an initial therapy of antibiotics at baseline. After antibiotic therapy of up to 180 days, the results were similar in both treatment groups. In both the placebo group and the antibiotic group, one-third of patients improved, one-third stayed the same and one-third worsened; there was no statistical difference in outcomes between groups.

A companion study examining cognitive functioning in 129 patients with Lyme disease indicated that although 70% of patients said they had impaired neurocognitive functioning, tests showed no reduction in neurocognitive functioning. “The interesting part was that the neurocognitive testing was normal in all patients,” Auwaerter said. “Although patients reported neurocognitive problems, they performed well on tests.”

Auwaerter noted another study by Krupp et al that showed there was some reduction in fatigue in patients with Lyme disease after six months of antibiotic therapy. “But this is only one subjective parameter and there was no change in any other primary endpoint,” he said.

Auwaerter said he agrees with the new IDSA guidelines and urges doctors to avoid extended antibiotic therapy for patients with Lyme disease. “We should treat patients on the basis of what we know, not on the basis of theory,” he said. “Furthermore, for many patients, long term antibiotic therapy can have complications.”

Editor’s Note: The new IDSA Lyme Disease Guidelines have indeed proven to be contentious. Those of you who have followed the IDSA News Clips since their release have been treated to a series of newspaper articles, mostly from areas of Lyme disease endemicity, and seemingly initiated by unhappy patients. Phraseology applied to the Guidelines include words such as “object strenuously,” “with great alarm,” “reckless,” “a travesty,” “outrageous,” and on and on. Obviously, many patients who are desperate to believe they have Lyme Disease are unhappy because their beliefs have not been validated in the Guidelines. Insurance reimbursement issues are playing a major role as well. The Connecticut Attorney General’s office is investigating the IDSA Guideline Development process, and a bill is likely to be introduced into the Massachusetts Legislature in the next term to prohibit the state medical board from disciplining physicians who prescribe long-term antibiotics to patients with alleged chronic Lyme disease. So stay tuned, there’s more to come.

— Theodore C. Eickhoff, MD
Chief Medical Editor

For more information:
Stricker R, Auwaerter P. Controversies in Lyme disease diagnosis and treatment. Presented at: The 44th annual meeting of the Infectious Disease Society of America; Oct. 12-15, 2006; Toronto.


*footnote: Canadian IDSA controlled magazine

Lyme disease prevalent

[artur737]

Starszy artykul na temat kwestionariusza majacego na celu odpowiedz na pytanie jak szeroko jest rozpowszechniona borelioza. Wyslano do 848 domow, 35% odpowiedzialo. Wyniki sugeruja, ze 46% respondentow ma w domu kogos chorego na borelioze w tym endemicznym rejonie.


www.zwire.com/site/news.cfm?newsid=12386551&BRD=1671&PAG=461&dept_id=17782&rfi=6
Study: Lyme disease prevalent
JILL NAWROCKI, Staff Writer
07/18/2004

POCOPSON

Congressmen give gift of hope

[artur737]

Amerykanscy kongresmeni angazuja sie w Wojne Boreliozowa.
M.in pisza list do CDC z prosba o rozpatrzenie Wskazowek IDSA a nie bezmyslne ich promowanie.

www.publichealthalert.org/feb-Page-1.html
Public Health Alert
Feb 2007
Vol.2 Issue 2

CONGRESSMEN GIVE GIFT OF HOPE


TO CHRONICALLY ILL LYME PATIENTS

Centreville, MD- December 15, 2006- Shortly before returning home for the holidays, Maryland's Congressmen Gilchrest, Wynn, Bartlett, Van Hollen, Cummings, Ruppersberger, Cardin and Hoyer signed the Lyme Disease Member Letter, sponsored by Congressman Christopher Smith from New Jersey. Chronically ill Lyme patients across the state were encouraged and very thankful for the unanimous support from their state Congressional delegation.

The Lyme Disease Letter, addressed to Dr. Julia Julie Gerberding, Director of the Centers for Disease Control and Prevention (CDC), expressed concern about the posting of the new Infectious Diseases Society of America (IDSA) guidelines on the CDC’s website without adequate review by the CDC.

The IDSA guidelines limit a physician’s ability to clinically diagnose patients, limit adequate preventative and curative treatment protocols, and provide insurance companies a basis for the denial of services. In addition, they promote reliance on lab tests that have repeatedly been demonstrated to be unreliable and concentrate on short-term treatment protocols deemed “cost-effective” rather than necessarily curative or supported by solid science.

The letter follows a Civil Investigative Demand issued by the Attorney General of Connecticut to the IDSA, initiating an investigation of the IDSA’s use of exclusionary tactics in developing their guidelines. Both the national non-profit Lyme Disease Association representing patients and the International Lyme & Associated Diseases Society representing treating physicians requested input into the guidelines process and were denied.

Lyme disease is currently the most prevalent vector-borne disease, with over 230,000 new cases in the United States annually. The CDC estimates for every case reported in Maryland, 7-12 are being missed (CDC- Surveillance for Lyme

Disease, United States, 1992—1998, Division of Vector-Borne Infectious Diseases, National Center for Infectious Diseases). According to their estimated calculations, if current trends continue, by the year 2020 approximately 1/5 of Maryland's population will have been exposed to Lyme disease.

If Lyme is not properly diagnosed and adequately treated in the early stages, the spirochetal organism can affect every organ and system in the body. Arthritis, encephalopathy, neurocognative disorders, facial paralysis, muscle involvement and heart problems are some of the manifestations of chronic Lyme disease.

Maryland Lyme Disease Support Group leaders believe the IDSA guidelines are grossly inadequate and have the potential to severely affect those who are bitten and require rapid diagnosis and treatment, as well as those who are already chronically ill with tick borne infections.

Number of cases rises

[artur737]

W ciagu roku ilosc zachorowan na borelioze w rejonie GROTON-DUNSTABLE zwiekszyla sie o 100%.


Lyme disease alert issued as number of cases rises
Spike in rate worries officials

By Matt Gunderson, Globe Correspondent | January 7, 2007

The Boston Globe

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."

[artur737]

www.cbc.ca/health/story/2007/01/12/medically-unexplained.html
Milion Kanadyjczykow - (5%) calej populacji Kanady cierpi na niezdiagnozowane choroby (moj przypis: z opisu wynika, ze wiekszosc to moze byc borelioza)

5% of Canadians report 'medically unexplained' conditions
Friday, January 12, 2007
CBC News

More than a million Canadians are dealing with conditions that cannot be identified by medical tests or physical exams, Statistics Canada said Friday.

The agency looked at data from 2002 and 2003 for people aged 12 and over.

It found five per cent of Canadians are dealing with medially unexplained physical symptoms such as chronic fatigue syndrome, fibromyalgia and multiple chemical sensitivity.

About 1.3 per cent of the population reported chronic fatigue syndrome, which is characterized by extreme tiredness.

About 1.5 per cent reported fibromyalgia, which involves pain lasting three months or more in at least 11 of 18 specified areas.

About 2.4 per cent reported multiple chemical sensitivity. People with the disorder develop a variety of symptoms when they are exposed to synthetic chemicals in doses that usually have no noticeable effect.

The three conditions were more common among people in lower-income households compared with wealthier Canadians.

More than 25 per cent of people with medically unexplained symptoms needed help with everyday activities, such as preparing meals or running errands. Among people who did not report any of the conditions, the proportion was seven per cent.

About one-fifth of them were also dealing with at least one psychiatric disorder, such as depression or panic disorder.

Wacky Weather Coast to Coast

[artur737]

Na kanadyjskich polach i w lasach robi sie tloczno. Zmiany klimatyczne powoduje, ze ptaki, ktore powinny odlatywac na zime zostaja, rozne futrzaki powinny spac zagrzebane w norach a tymczasem buszuja w najlepsze.
Nikt nie wie do czego to wszystko doprowadzi, ale niewatpliwe szansa na rozprzestrzenianie sie nowych chorob bardzo rosnie. Wsrod nich ryzyko na zlapanie boreliozy wzrasta.

" Wacky Weather Coast to Coast",

Globe and Mail, Saturday, January 13, 2007

Forests, fields, buzzing with unlikely creatures

by Micheal Valpy, Toronto

Critter-wise in Ontario's fields and forests, it's become crowded out there.

Birds that should have gone south. Little animals that should have snuggled up in their burrows. Insects that shouldn't be seen at all. They're all out this winter.

And the naturalists, zoologists and animal-health scientists who observe them aren't sure what they're seeing because, as University of Guelph veterinarian and epidemiologist David Waltner-Toews points out, "Warm weather and no snow in winter is uncharted territory, and the bottom line is we haven't studied this".

Squirrels? Everyone is noticing more squirrels. And chipmunks are scampering about for days instead of briefly poking their heads above ground.

More vultures, bald eagles, ducks, yellow-rumped warblers, great blue herons--to name a few bird species. There are also more insects, such as midges, when no one would think of seeing midges.

Southwestern Ontario naturalist Alan Wormington says there is no huge change in animal and bird behaviour. Rather, its a case of where one great blue heron might have been seen in winter a few years ago, whereas now its not uncommon to see 10.

As well, he says, it's not temperature alone that's keeping migratory birds around. It's mainly available food and open water.

Zoologists aren't sure what the lack of snow cover will mean for predators and herbivores, or for little mammals that use the snow as insulation around their burrows. And Dr. Waltner-Toews says there are concerns about warm winters aggravating the spread of disease.

West Nile virus is already over-wintering. Lyme disease could spread. Ontario's highly-effective wildlife-vaccination program could be undermined by the northern movement of rabies-infested U.S. raccoons.

In general, with more animals likely to wake up, look for food and bump into each other at this time of year, there's a greater chance of disease, Dr. Waltner-Toews says.

"It's all unknown waters".

Wewnatrzmaciczne zakazenie borelioza

[artur737]

Przyklad osoby zakazonej wewnatrzmacicznie od chorej matki. Oczywiscie nikomu ze zwyklych lekarzy nie przyszlo do glowy, ze moze to byc borelioza.
Dziecko otrzymuje dozylne leczenie i ma sie coraz lepiej.

By JOE LANGDON
Special to Tri County
January 2007

After years of testing, doctors couldn't determine what was wrong with Jared Shea. But they agreed on one thing - the 10-year-old Newlin boy was dying.

"They told us he probably wouldn't make it to 11," said Jared's father, Ray. Jared experienced difficulties from birth with things like coordination and speech, and he continued to deteriorate throughout his childhood to the point where he could no longer walk or speak and was losing his vision.

At age 10 he weighed 54 pounds and was literally wasting away. "At that point, I just kept thinking they're missing something," said Jared's mother, Jayne. "He would look
me in the eyes and I knew he was in there."

With time and hope running out, Jayne Shea began poring over the results of Jared's MRIs, which revealed serious demyelination, the breakdown of the myelin sheath that protects nerve cells.

After entering Jared's test results into
a medical database, Jayne Shea discovered similar symptoms and demyelination in the autopsy report of a German girl. Also reported in the girl's autopsy was the presence of Borrelia burgdorferi, the spirochete bacterium
that causes Lyme disease.

Jayne Shea knew she had Lyme while pregnant with Jared, but didn't know it could be transmitted congenitally (something still debated by the medical community). A specialist in Connecticut (the epicenter of the disease that is named after the town of Lyme, Conn.) diagnosed Jared
with the disease and started antibiotics treatment.

"We had changes happening ... within a week or two," said Ray Shea, and after Jared began taking intravenous antibiotics "that's when we started started really seeing improvement."

Jared's condition stabilized and his weight doubled within the year. Jared, now 17, is still very ill. Unable to walk or speak and
with severly limited motor function, Jared is not the conventional face of Lyme disease.

When people think of Lyme disease, they often think of people like Jared's family, all of whom have the disease, including the dog. Ray and
Jayne Shea and their daughter, Jaclyn, suffer from various Lyme-related ailments including fatigue, arthritis and poor circulation. Their conditions worsen in times of stress or
exertion, and they take oral antibiotics when their symptoms flare.

Jared, however, must take intravenous antibiotics three times a day and travels to Connecticut every few months for additional treatment. He communicates through a Dyna-vox
speaking device and attends Unionville High School only with the help of a full-time aide.

"I was shocked that (Lyme disease) could cause
deterioration like this," Jayne Shea said. "Most people don't think Lyme can send you into that realm of disability."

Though he remains severely disabled, Jared's health has improved markedly throughout his treatment. "Probably in the last two years we've seen the most benefit," Jayne Shea said. "Sometimes it takes people seeing old video to really get (his improvement). He used to just lie there and cry all day long, that's all he did."

Jared's health has stabilized to the degree that this summer he was strong enough to ride along for a few laps at Dover Speed-way in a race car and meet his hero, NASCAR driver Jeff Gordon.

"That's the biggest change," Jayne Shea said, "the fact that he's able to enjoy life."
One person trying to bring attention to Lyme patients like Jared is California-based nonprofit filmmaker Andy Abra-hams Wilson.

[artur737]

Wilson's Lyme disease documentary,
"Under Our Skin" (set for release this year), which includes Jared's story, is intended to capture the experience of Lyme
disease - and the debate swirling around it.
According to the American Medical Asso-ciation, Lyme is the most prevalent vector-borne disease in the country - and it is rapidly becoming one of the most controversial.

The guidelines for treating Lyme disease published by the Infectious Disease Society of America (IDSA), a large organization of doctors and scientists, and those published by the International Lyme and Associated Diseases Soci
ety (ILADS), an organization of about 300 physicians specializing in tick-borne illness, are so contradictory that a revised IDSA guideline published in October sparked a
protest in New York state by ILADS and other Lyme groups.

"The (IDSA) guidelines essentially make it almost impossible for people to be diagnosed and treated for Lyme disease," said Doug Fearn, president of the Lyme Disease Association of Southeastern Pennsyl-vania.

IDSA stipulates that diagnosis should be made with the evidence of a "bull's eye" rash and positive blood test.

ILADS contends that the telltale rash occurs in less than half of cases (and is easily overlooked, especially on the scalp) and blood tests are equally unreliable. They believe
diagnosis should be based on a doctor's clinical
judgment.

After diagnosis, IDSA suggests antibiotics should be administered for only a few weeks and disputes whether "chronic" Lyme disease - like Jared's condition - even exists.

One of the biggest concerns, said IDSA spokeswoman Diana Olson, is with longterm antibiotic treatment. "Not only
is it unproven, but it may in fact be dangerous," she said, suggesting the treatment could lead to infection and possibly promote drug-resistant "superbugs."

While Olson stressed that the guidelines are simply suggestions for doctors to consider, ILADS member Dr. Ann Corson, who for the last three and a half years has treated only tick-borne diseases in her Londonderry office,
feared a widening effect.

"The danger is that the insurance industry adopts these guidelines and uses them to deny care," she said.

The protests by ILADS and other groups scored an
unusual victory in November when the Connecticut Attorney General's Office announced an investigation into possible antitrust violations on the part of the IDSA.

However, the Shea family, and the growing thousands like them all across the country, are just hoping for less politics and more progress.

"I don't know why it's so controversial sometimes," said Ray Shea. "The hard part is it shouldn't be this way."

The trailer for the film "Under Our Skin" can be seen at www.lymediseasefilm.com.

Under our Skin

[artur737]

Producent filmu (z ktorym kiedys nawet wymienilem pare emaili) przyslal list do
Kanadyjskiej Fundacji.
Wynika z niego, ze dzieki 30 minutowemu fragmentowi film zakwalifikowal sie do
udzialu w konkursie filmow waznych spolecznie (IFP Award) oraz zostanie pokazany
we wrzesniu na IFP Market co zapewni mu powazna promocje wsrod branzy
telewizyjnej i filmowej.
W najblizszej przyszlosci film ma byc pokazany na prestizowym Sundance Festival.


From Kris Kraft, Open Eye Pictures:

We're very excited to announce that a 30-minute sample of our Lyme
documentary, UNDER OUR SKIN, has put us in the running for the
prestigious IFP Award for Socially Conscious Documentaries. In
addition, we were awarded a screening slot at IFP Market, which will
place the rough cut of our film in front of high-level broadcasters and
distributors in September.
Pora jest dobra jak pisze Kris bo temat zbiegl sie z niedawno choroba prezydenta
Busha i wypuszczeniem filmu Sicko co skoncentrowalo uwage publicznosci na
problemach sluzby zdrowia.

www.lymediseasefilm.com
Interest in the film has been high, with packed fundraising screenings
in five cities; a pitch meeting with HBO; and interviews with national
publications such as The Washington Post, The Scientist, and Forbes (well, we
tried). And with President Bush's announcement that he's been treated for Lyme,
and Michael Moore's SICKO film making health care an election issue, we feel the
time is right for this film.

We're now in the homestretch for completing our rough cut for Sundance Festival
submission, and we'd like to call on the Lyme disease community to help us out
in this final sprint. Even if you're not able to financially assist us, please
help us spread the word among your friends, family, and influencers, so we can
create a groundswell of excitement for our upcoming screenings. (We've placed
our 5-minute film trailer back on our main website, so that you can easily
forward it via email.)

And thanks again for all your support and stories!!
Open Eye Pictures

--------------------
Kris Kraft
www.lymediseasefilm.com

[artur737]

Koleny sportowiec zarazony borelioza. Leczy sie wg IDSA i naiwnie wierzy, ze
skoro mu spada miano ELISA tzn, ze zdrowieje.

Ex-Warrior fights off Lyme disease
Brookville’s Sheahin battling to see the field next fall at quarterback for Maryland
by James Peters
Wednesday, May 2, 2007
www.gazette.net/stories/050207/olnespo224539_32321.shtml
For years now, Sherwood High graduate Bobby Sheahin has wondered why he couldn’t
gain muscle weight on a larger scale, despite all his hard work in the weight room.
About halfway through last season, Sheahin, a junior quarterback at the
University of Maryland, found out why. The reason, Lyme disease, forced him to
hand in his helmet and pads for the rest of the year.
‘‘I wasn’t focusing in class. I couldn’t pay attention. I was always drifting
off,” Sheahin said following Saturday’s annual Red-White game at Byrd Stadium.
‘‘I went to my dad. I said, ‘I think there’s something wrong with me because
I’ve never had this happen before.’ He was like, ‘Let’s get a blood test.’”
According to the Medline Plus Web site, Lyme disease ‘‘is an inflammatory
disease characterized by a skin rash, joint inflammation, and flu-like symptoms,
caused by the bacterium Borrelia burgdorferi transmitted by the bite of a deer
tick.”
More than 16,000 cases of Lyme Disease are reported in the United States each
year, and it ‘‘can sometimes be difficult to diagnose because the symptoms may
mimic other diseases. The bite may go unnoticed [but] a few months to years
after the bite, joint inflammation, neurological symptoms, and sometimes heart
symptoms may occur.”
In Sheahin’s case the symptoms, which included fever, headache, lethargy, muscle
pains, stiff neck and joint inflammation, didn’t surface until some eight to 10
years after he was apparently bitten.
‘‘It does a lot of things to you,” Sheahin said. ‘‘I couldn’t run 40 yards
without being out of breath. It was pretty bad. I’m on medicine for it and it’s
getting a lot better. I go to the doctors every two weeks to test my blood to
see how the levels are doing. They’ve gone down a lot.
‘‘It’s why I haven’t been able to gain any weight. My dad’s 6-foot-3, 290 pounds
of solid muscle and everybody’s, ‘What happened to you?’ I don’t know what
happened to me.”
The healing process has gone so well that Sheahin was able to start spring
practice with everybody else this year and participated in all four scrimmages.
Saturday, he completed 4 of 5 passes for 35 yards and led the White squad —
which won, 27-10 — to a touchdown with 1 minute, 29 seconds left in the first half.
Sheahin had another long completion to Good Counsel graduate Tommy Galt negated
by a holding penalty later in the game. The touchdown drive spanned 10 plays and
57 yards.
During the team’s three early scrimmages, Sheahin completed 7 of 11 passes for
98 yards with a touchdown and an interception. His best game came in the second
scrimmage when he went 6 for 7 with 75 yards and a scoring strike to Adrian Cannon.
Despite that production, Sheahin, who spent his freshman year at West Virginia,
finds himself sitting behind quarterbacking heir apparent Jordan Steffy and
talented sophomores Josh Portis, a Florida transfer, and Chris Turner.
‘‘Hopefully, this summer will be a big learning process,” said Sheahin, who
passed for over 1,200 yards as a high-school senior and led Sherwood to the
Class 4A state final in 2002. ‘‘I just have to keep sticking in there, get the
playbook and learn the offense so it’s like the back of my hand and take it from
there.”
Sheahin spent the fall on the offensive scout team, running the offenses used by
Maryland’s various opponents. He did so alongside younger brother Chris Sheahin,
who transferred to Maryland from the Naval Academy last fall.
Chris, a freshman wide receiver, did not play in the Red-White game, as he is
still learning head coach⁄offensive coordinator Ralph Friedgen’s complicated system.
‘‘It’s a dream playing with your brother,” Bobby Sheahin said. ‘‘He’s got to
learn the offense. I hope I can play with him in the future. We played on the
scout team together last fall and when we would go home, he would ask me plays
so he could be ahead this spring time. Coming in this spring, he’s learned a lot
compared to any freshman since I’ve been here. I think he’ll have a good career
here.”

Antitrust scrutiny of Lyme guidelines

[artur737]

Artykul omawia mozliwe skutki prawne oskarzen IDSA o praktyki monopolistyczne.
Sprawa ciagle jest w toku a na dzien dzisiejszy nie ma wnioskow.

Law.com Home Newswire LawJobs CLE Center LawCatalog Our Sites Advertise

Antitrust scrutiny of Lyme guidelines
Disease treatment probe by state AG.

Marcia Coyle/Staff reporter
January 22, 2007

WASHINGTON-A state attorney general's novel investigation into the development of treatment guidelines for Lyme disease should put health care and professional medical societies on alert to a possible new front in antitrust litigation, say antitrust lawyers and others.

Connecticut Attorney General Richard Blumenthal late last year issued a subpoena to the Infectious Diseases Society of America (IDSA) for information on how it established its latest guidelines on the diagnosis and treatment of Lyme disease- guidelines that were subsequently adopted by the Centers for Disease Control and Prevention (CDC).

While IDSA has responded to the subpoena, Blumenthal said his investigation is ongoing. "We've reached no conclusion," he said.

And while some have characterized it as novel or unprecedented, Blumenthal said the inquiry involves "basic antitrust principles applied to medical care."

The antitrust implications here, he explained, are the restraint on doctor and patient choices for treatment of the disease because of the guidelines, and particularly their effect on insurance companies' willingness to pay for treatment.

Nineteen members of Congress recently sent a letter to the CDC requesting that agency to review the IDSA guidelines, which they said have "the potential to effectively shut down" all treatment of chronic Lyme disease. The IDSA reacted on Jan. 17 with a letter to Congress explaining its guideline process.

State attorneys general have been very aggressive in the health care arena in recent years, say health care and antitrust practitioners, but antitrust actions involving treatment guidelines have not been common.

"There is certainly a possibility that if a professional organization puts out a set of principles that tells you how to act, and people act in accordance with it, it could have an effect on competition," said Stephen P. Mahinka, a partner in the Washington office of Morgan, Lewis & Bockius, and chairman of the firm's life sciences interdisciplinary practice group.

The federal National Guideline Clearinghouse Web site lists more than 1,800 guidelines under the heading "disease/ condition," including the IDSA guidelines.

The backdrop to Blumenthal's investigation is an intense dispute between the IDSA and the International Lyme and Associated Diseases Society (ILADS).

The IDSA, widely recognized as the pre-eminent authority on infectious diseases in this country, does not support a separate diagnosis of "chronic" Lyme disease, nor do its guidelines support antibiotic treatment for patients on a long-term basis-for a period of months or even years.

The ILADS, a nonprofit, international, multidisciplinary medical society dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases, takes the opposite view.

The ILADS and other critics, such as the Lyme Disease Association, contend that the panel that developed IDSA guidelines excluded any opposing views of chronic Lyme disease and its treatment.

Although the IDSA says its guidelines are not mandatory, they have the effect of becoming the standard of care in the medical community, according to Lorraine Johnson, an attorney and executive director of the California Lyme Disease Association.

The national association, she said, has received numerous complaints from patients denied reimbursement for longer-term treatment than recommended by the IDSA guidelines, and physicians who don't follow the guidelines have faced malpractice charges by medical boards.

The development of treatment guidelines is analogous to standard-setting-a hot area in antitrust today, according to New York attorney Richard Wolfram, an independent antitrust specialist assisting the California Lyme Disease Association.

Common principle

Although the relevant case law has been outside of the health care field, he said, there is a common principle. Because standard-setting by competitors supplants competition, the process must be fair, open and not subject to any bias by participants with economic interests in stifling competition, he explained, especially when the standard-setting is done by an association or other entity that is highly influential or dominant in the relevant market.

"The fundamental antitrust claim here is an abuse of the standard-setting process by which guidelines for diagnosis and treatment of Lyme disease was articulated," said Wolfram.

"We say there was at bottom a refusal to deal with certain elements of the medical community who have different points of view about treatment of the disease, particularly chronic Lyme disease, and an exclusion of treatment, particularly long-term antibiotic treatment."

Douglas A. Hastings, partner in the health care and life sciences practice in the Washington office of New York's Epstein Becker & Green, said he could see how the guidelines could be viewed as standard-setting, but, he added, an antitrust claim in this context is novel.

"Antitrust requires independent parties conspiring to do certain things to violate antitrust law and is anti-competitive," said Hastings.

"That is not something typically raised around development of practice guidelines."

The IDSA's attorney, antitrust litigator Alvin Dunn, counsel to the Washington office of Pillsbury Winthrop Shaw Pittman, said: "Our view is this is not a matter for antitrust laws or courts generally, but this is a medical question and one that doctors and scientists should be addressing if there is an issue as to whether the guidelines are proper."

The IDSA's critics challenge the guidelines' positions that there is no such thing as chronic Lyme disease and that long-term antibiotic treatment should not be given, Dunn said. "IDSA is saying that would be overtreating and clinical evidence studies don't support that. The challengers want much more treatment and reimbursement. There's no economic benefit to IDSA members getting together here."

Dunn said other professional societies that develop guidelines should find this investigation troubling.

"Today, guideline development is very common; its use is encouraged, and people think the quality of care improves if doctors and other follow these guidelines," he said. "They should be very concerned about the possibility of legal challenges if they do what they think improves patient health and safety." Printer-friendly Version Email this Article Comment on this Article Reprints & Permissions
about ALM | terms & conditions | privacy | advertise | about NLJ.com | contact us | subscribeCopyright 2007 ALM Properties, Inc. All rights reserved.

[artur737]

Kobieta, ktora zachorowala na dur plamisty po ukaszeniu kleszcza i zbagatelizowana przez lekarzy utracila palce u rak i nog wygrala proces sadowy i ma otrzymac ponad 2 mln dolarow.
Info pojawilo sie na lymenecie z nieco retorycznym pytaniem, kiedy to podobne zaniedbania pacjentow z borelioza przyniosa rownie kluczowe rozstrzygniecia sadowe.

news.yahoo.com/s/wyff/20070130/lo_wyff/10879952
Woman Who Lost Toes, Fingers Wins Suit

Tue Jan 30, 2007

After a misdiagnosis cost a Greenville woman her fingers and most of her toes, she was awarded more than $2 million.
ADVERTISEMENT


Janey House won the suit against Greenville Gynecologists Group, gynecologist Dr. William Coleman and nurse practitioner Beth Slyder.

It all started four years when House's temperature spiked.

"So the next morning, I went in to my health care provider and told them I was bitten by a tick, had a 104 degree fever, vomiting, aching desperately all over," House said.

House said that the fever and vomiting persisted.

Each day she called Coleman's office, but she said that each day she was told it was a stomach virus.

Then on the fourth day she broke out in a rash.

She said, "My husband became alarmed and took me to the emergency room. The last thing I remember was walking in to the desk and saying, 'I'm dehydrated and I've been bitten by a tick.'" House was diagnosed with Rocky Mountain spotted fever, a bacteria spread to humans by ticks.

Janey suffered multiple organ failure and developed gangrene.

House said, "I had to have all my fingers amputated and parts of all my toes. And the good news is, I got a second chance at life."

Her attorney, Carl Muller, said, "It's really the worst case I've seen in the 30 years I've been practicing law."

Muller represented House and her husband in a malpractice lawsuit, On Friday, a jury awarded the Houses nearly $2.5 million.

"It could have been easily treated and easily diagnosed with a $10 bottle of antibiotics and that just simply didn't occur here," Muller said.

Now House wants to get the word out about the dangers of spotted fever.

"I have an immense understanding of my gratefulness for being cared about and for how important it is for us to care about each other," House said.

Whether it's helping people graduate or giving others a second chance at life.

House works at United Ministries, an organization that is helping high school dropouts to earn their G.E.D.s.

"I decided to come down here and try to help these students here get another chance," House said.

According to the Centers for Disease Control and Prevention, initial signs of Rocky Mountain spotted fever include headache, fever and muscle pain, followed by a rash. The disease can be deadly.

Slyder's attorney said that he is considering an appeal.

Coleman could not be reached for a comment.

Those named in the suit have 10 days to begin the appeal process by filing post trial motions.

Niewidzialne kalectwo

[artur737]

www.hometownannapolis.com/cgi-bin/read/2007/02_04-24/LIF
Struggling with having an 'invisible disability'

By WENDI WINTERS, For The Capital


In 1987, when Annette Funicello staggered slightly and slurred her words after being introduced by Frankie Avalon, some in the audience were shocked. They assumed she was drunk. An alcoholic.

In reality, she had recently been diagnosed with multiple sclerosis, a progressively degenerative disease.

Ms. Funicello was trying to hide her disease, but when the rumors became worse than the truth, she was forced to go public with her illness.

Michael J. Fox worked hard to conceal the symptoms of his gradually worsening Parkinson's Disease as well. If he had a spasm as his limousine was pulling up to a red-carpet event, he'd tell the driver to go around the block until he could get himself under control.

When Mr. Fox finally "let it all hang out" on camera last fall, Rush Limbaugh suggested he was "exaggerating" or that he had stopped taking his medication to make his condition look worse.

These two beloved actors, particularly Mr. Fox, have been in the spotlight with their illnesses, yet they've been stung by wrong assumptions and rude remarks.

Yet there are millions of other Americans who continue to suffer in the shadows with "invisible disabilities."

"My husband's aunt said that I looked great and from the letters we had sent she thought that I would be in a wheelchair," wrote an Ohio woman to Severna Park resident Marika Bates, chair of the Maryland / DC / Delaware Chapter of the Myasthenia Gravis Foundation of America.

"We had not seen her since I have been ill and diagnosed," she said. "I could tell by her words and expression that she felt I wasn't as ill as he was making out that I was or that I was now completely cured of the illness. And, I get responses like, 'Well we are all getting older and none of us have the energy level that we used to have.' I want to scream out that they have no idea what it means to lose all of your energy and your body just won't respond to your commands to move!"

MG affects 20 in 100,000 Americans, according to Dr. Charlene Hafer-Macko, associate professor of Neurology and Medical Director of University of Maryland's Myasthenia Gravis Center.

"MG is a disease of fatigue," she said. "People assume its victims are getting so tired because they're getting older or getting lazy or trying to get out of work. MG sufferers look fine. They can dothings once but can't keep at it. Their condition is often misdiagnosed. It depends upon when you catch them. If they can't breathe, they might go to a pulmonologist. If the disease affects their eyes, they'll see an eye doctor. With difficulty swallowing, they see a dentist. There are tests for MG, but it has to be on a doctor's radar."

According to Dr. Hafer-Macko, MG is a nerve and muscular disease. It usually affects young women 20 to 40 years of age and men and women from 50 to 60 years old. "But it can affect its victims at any age."

"A lot of people with MG are told they're just lazy or get a positive attitude. It's a frustrating disease," says Dr. Hafer-Macko. "They're trying to run a marathon but they just don't have the energy to do it."

Invisible disability

MG fits squarely among the range of invisible disabilities. On a busy street, it would be hard to pick out the people who are deaf, or have psychological problems, severe allergies, diabetes, fibromyalgia, ADHD, chronic pain, Lyme disease or any one of several dozen disorders that are not obvious. Yet millions of Americans are misjudged or misunderstood, often by their own family and friends.

"Some don't understand why you can't take a medicine and be cured," said Ms. Bates.

Ms. Bates finds she can "vacuum in the morning but barely get out of a chair by the afternoon."

Born in North Carolina, she grew up in Dorsey and, at 63, is retired from a title company.

"I miss the people, but not the stress," she said. "Sometimes when I'm tired or weak, my face droops. One night when I was doing a settlement, I sighed. The agent at the table said, 'Look Marika, we're all tired here.' I wanted to say, 'Lady, you don't know from tired!' "

She founded the chapter eight years ago, partly as a support group.

"Doctors can tell you what you have, but they can't help you cope like a support group does," Ms. Bates said.

Her feet droop as she walks and she will sometimes use a rollerator - a walker with wheels - to get around. The stairs leading to her basement are equipped with a stair lift.

Hurtful remarks

"What's the matter with you?" is the reaction Carol Roman of Bowie hears a lot. "You don't look sick!"

Despite her illness and two major surgeries, the 59-year-old woman annually takes part in the Caribbean 1500, sailing with 75 boats to winter in the Caribbean.

"We sail continuously for 10 days on the Atlantic Ocean," she said. "It's hard when I have to explain to other people why I look good but have to take a lot of medicines."

Formerly in business development for a managed care firm, she's now on permanent disability. To her, it's depressing "when you get something else and you don't know if it's part of the chronic illness or something new."

Earlier in her disease, she had a tough time convincing her father she was ill.

"Sometimes you can't tell them no matter how hard you try," she said.

During one emergency when she had trouble breathing, she asked her stubborn father to take her to the hospital.

"I can't breathe," she said. "Yes you can, I know what it is not to be able to breathe," he said.

Misunderstood

They argued for 20 minutes. Finally he said: "If I take you and nothing is wrong, I will be so mad."

At 81, Eliot Siskind, an Annapolis lawyer, is semi-retired. He was diagnosed with the disease in 1999 and carries a cane "just in case I lose my balance."

"In our position with MG, so few people know about what the limitations of the disease are," he said.

He said he has had battles with doctors who don't understand the disease.

"Because it's an autoimmune disease, if I go to a dermatologist, a dentist or have a biopsy or blood drawn, I have to be given antibiotics," he said. "The doctor or dentist will say, 'No need to worry!' But, I call my neurologist, who says it's dangerous not to take the antibiotics as these are invasive procedures."

Carol Welty, 65, has three kids and 8 grandchildren and considers herself fortunate to be surrounded by understanding people in Glen Forest Apartments, her senior community in Glen Burnie.

"Everybody's chipped in when they realize my condition," Ms. Welty said.

Symptoms began to appear in 1970, but she was not properly diagnosed until 10 years ago. Still problems occur.

Counseling helps

"Some think there's nothing wrong with me because I look good," she said. "Yet one minute I'm fine and the next I'm on my deathbed. They don't understand unless I'm huffing and puffing and have to be helped to my apartment."

Doctors treating patients with invisible diseases find offering counseling to both the patient and their family helps.

"I often have to counsel the patient and the family," said Dr. Hafer-Macko. "What's possible and not possible. Some try to do everything and the next day, they can't get out of bed.

"Support groups help a lot with understanding the disease, coping with the disease, getting the best out of life, breaking down barriers and overcoming hurdles."

Ticked off

[artur737]

Opis obecnych atakow na Dr Charlesa Ray Jones'a, ktory jest w zasadzie jedynym pediatra w USA od boreliozy. W swojej karierze leczyl 10000 dzieci chorych na borelioze z czego wiekszosc wyleczyl. Obecnie komisja medyczna intensywnie pracuje by odebrac mu lekarska licencje. Walka jest symboliczna bo Dr Jones jest juz w podeszlym wieku zapewne i tak juz by dlugo nie pracowal zawodowo. Chodzi o to by zastraszyc innych lekarzy by nie szli w slady Dr Jones'a.
Dr Jones stracil juz wszystkie swoje oszczednosci na prawnikow w tym procesie i obecna linia obrony jest oplacana ze spolecznej zrzutki.
W swoim czasie mogl po prostu udac sie na emeryture (jest juz w odpowiednim wieku) i proces by zostal wstrzymany.
Komisja oczywiscie uzywa materialow IDSA by wykazac wykroczenia Dr Jones'a.
Szczescie w nieszczesciu, ze akurat niedawno zalecenia IDSA zostaly wziete pod lupe przez prokuratora generalnego Connecticut i zdecydowanie stracily z tego powodu na atrakcyjnosci.

(Z tego powodu ostatnio nawet ubezpieczalnie juz nie powoluja sie na zalecenia IDSA. )

tinyurl.com/2rdk6c
Hartford Advocate/ CT NOW

Ticked Off

A Lyme Disease Community Rallies Around A Connecticut Doctor.

By Adam Bulger

January 25 2007

Joy Walker and Lucy Barnes are really into Lyme disease. Both women sent me e-mails, from accounts embedded with references to Lyme, about the ongoing legal travails of Wallingford’s Dr. Charles Ray Jones. They are part of a surprisingly active community of people who have devoted much of their lives to Lyme disease.

Barnes termed the case against Jones a “witch trial,” and believes Jones has been unfairly targeted for his successful treatment strategies.

“Most doctors, I’d say, hate Dr. Jones. They are misdiagnosing children, and the children get sicker and sicker, and finally the parents start looking for help on their own. They look at support groups and on the Internet. They come to people like myself and we send them to Dr. Jones,” Barnes said.

To Walker, Barnes and other Lyme advocates, Jones is an unfairly persecuted hero.

“He’s the only one who’s taking these children and caring for them in the whole country — actually the whole world,” Barnes said. “He understands that Lyme is a complex illness.”

The accusations brought against Dr. Jones by the Connecticut State Medical Board are fairly straightforward. Jones, a pediatrician who deals almost exclusively with Lyme disease sufferers and is part of group called the International Lyme and Associated Diseases Society, or ILADS, diagnosed a child over the phone, without ever meeting the child in person.

“He was coughing so much he was going to be expelled from school,” Jones said. “I thought it was the humane thing to do. I did it with prudence and foresight, as well as with compassion and concern.”

But the child’s father complained to the state medical board, which launched into a series of hearings over Jones. His most recent hearing, scheduled for Jan. 18, was cancelled. The case is still pending, with the next hearing scheduled for Jan. 25.

Barnes, Walker and others say the Jones case is illustrative of a nationwide debate surrounding Lyme disease.

“The Jones trial is part of a nasty pattern of professional character assassination aimed at ILADS-sympathetic doctors, a pattern which the Lyme community resists at every turn,” Walker said in an e-mail.

They and the people behind Web sites like LymeDiseaseAssociation.org and organizations like the National Capital Lyme Disease Association have followed Jones’ hearings closely. Hundreds of people have reportedly attended his seven previous hearings.

Jones and others in ILADS argue that Lyme disease is more prevalent and persistent than many medical authorities say.

“We have a different view of Lyme than the infectious disease people do. We think Lyme is complex and difficult to treat, and that there definitely is chronic Lyme disease which can demand more treatment than just the three weeks they advocate,” Jones said.

But the Infectious Diseases Society of America clashes with ILADS in how they view the standard of care for Lyme disease. The IDSA, by contrast, advises a conservative approach to the diagnosing and treatment of the tick borne illness.

“This contentious debate over the chronic nature and proper treatment of Lyme forms the background to the Jones investigation,” Walker wrote in an e-mail.

Jones’ struggle is at the frontline of the debate. The members of the Lyme community view him as one of the world’s few doctors who are treating Lyme disease correctly.

But the national Center for Disease Control accepts the IDSA’s view of Lyme.

“For the most part, the evidence shows that most people recover from appropriately recognized and appropriately treated Lyme disease. Only a small subset of patients have longer lasting symptoms,” CDC Epidemic Intelligence Service officer Kevin Griffith said.

The CDC and IDSA state that Lyme disease is treatable, and say that Jones’ longer antibiotic treatments do more harm than good.

“Nearly all people — more than 95 percent — who do get sick with Lyme disease and are treated with the recommended course of antibiotics get better and go on with their lives,” said Gary Wormser, M.D., lead author of IDSA’s 2006 guidelines on Lyme disease, in an IDSA document.

According to IDSA guidelines, two weeks to a month and a half of antibiotic treatments effectively kills the disease. The IDSA believes using antibiotics on a long-term basis to treat Lyme is ineffective and potentially harmful to patients. Jones, by contrast, will prescribe antibiotics until the patient is symptom free for two months.

Jones said he is aware of the problems long-term antibiotics use can cause, but says it’s the best treatment option available.

“After 10,000 children with Lyme I have yet to see that happen,” Jones said. “The people who criticize Lyme physicians for using long-term antibiotic therapy think nothing of having their patients with acne on Tetracycline and Minocycline.”

ILADS proponents argue that Lyme is a far wider reaching disease, one that stays in the body and requires more extensive treatment, than what the IDSA and their allies believe.

“The IDSA guidelines say there’s no such thing as chronic Lyme disease. They know damn well there is,” Forschner said.

Lyme disease was named for the Connecticut town where early cases were spotted in the ’70s. According to the CDC Web site, there were 23,305 reported cases of the disease in America in 2005. Several Lyme supporters said that number is low, due to the low percentage of Lyme disease getting reported. The IDSA standard blood test for Lyme detection, they say, is inadequate.

“This small group of conservative academics is saying that if you don’t have a positive test, you don’t have Lyme,” Forschner said.

Connecticut Attorney General Richard Blumenthal is investigating IDSA for anti-trust violations with regard to their Lyme disease guidelines. The anti-trust inquiry was brought on by Lyme advocate Lorraine Johnson, one of Jones’ attorneys. Blumenthal’s office did not respond to a request for comment.

One Lyme disease advocate implied that eventually the IDSA would change their view on the disease.

“If you go back to the ’70s, we were told by a lot of the same academics that are still hanging around that it was a south eastern Connecticut shoreline disease. It causes inflammation in your joints and bull’s eye rashes. That’s all there is to Lyme disease,” Forschner said.

He added: “They w

[artur737]

He added: “They were wrong. It’s country wide and world wide. It’s not just joints … They’ve been behind the curve very consistently.”

Write to us at [e-mail] or [e-mail]

[artur737]

Kilka listow od czytelnikow opublikowanych troche pozniej po tym artykule



Tick Factor

Lyme disease is an epidemic in this state. Instead of jumping all over Dr. Charles Ray Jones [“Ticked Off” Jan. 25], perhaps the Connecticut State Medical Board should press for better testing for this debilitating disease. Too many people are not getting treated because the tests for Lyme disease are not accurate. There is still much to learn about this disease that mimics so many other illnesses and conditions.

Terry Sutton
Simsbury



A Tick Prize

Thank you for printing this story, but then when has your paper ever backed down from anything? Your paper did a great job in giving fair coverage on Lyme disease. On [my Web site www.ctlymedisease.org ] I have posted a $20,000 reward to any doctor that can prove that Lyme disease is cured with six weeks of antibiotic treatment.

The other camp claims that Lyme disease is eradicated in 10 to 14 days. If so, they should challenge my reward. I have over 90 peer review papers that show I am correct.

My group is not going away and plan on exposing the corruption in the state of Connecticut Health Dept.

Randy Sykes
Via E-mail

Sykes is the co-facilitator of The Greater Hartford Lyme Disease Support and Action Group.



Still Ticked

Thank you so much for your excellent article about Dr. Charles Jones’ hearing with the Connecticut Health Dept.

Jones is one of a handful of chronic Lyme-literate MDs, LLMDS, in the USA.

I’ve had chronic Lyme now for 37 years; 34 years misdiagnosed by 40-50 MDs/specialists until I persevered hearing of Lyme disease.

“For the most part, the evidence shows that most people recover from appropriately recognized and appropriately treated Lyme disease. Only a small subset of patients have longer lasting symptoms,” CDC Epidemic Intelligence Service officer Kevin Griffith said.” HOG WASH!

The CDC needs to get out talking personally to all 50 states, since each state has had reported Lyme or Lyme co-infections diagnosed!

Betty Gordon
Ames, Iowa

Medical Board Blocking Care

[artur737]

Jest to przeglad ostatnich wydarzen na froncie Wojen Boreliozowych.
Jeden z najlepszych lekarzy od boreliozy w USA Dr Jemsek niby wyszedl w miare obronnie ze zmagan ze stanowym zarzadem licencyjnym ostatniego lata. Niemniej otrzymal warunki: praca pod nadzorem przez rok oraz ograniczenie dozylnych abx u jego pacjentow tylko do 60 dni.
Niestety konsekwencja zmagan bylo to, ze prywatne ubezpieczalnie uznaly, ze w tej sytuacji moga nagiac prawo i odmowic wyplat za przeszla i przyszla prace doktora. Klinika zbankrutowala, dobry doktor tez. Dobrze ,ze sie nie poddal i otworzyl nowa placowke.
Ale nowo utworzona klinika jest w stanie funkcjonowac tylko jezeli pacjenci sami oplaca uslugi (ceny niestety wysokie - rowniez z tego powodu, ze pacjenci musza zaplacic za dodatkowe konsultacje w ramach 'nadzoru' ustalonego przez komisje licencyjna.
W tragicznej sytuacji sa pacjenci, ktorzy funkcjonowali tylko dzieki leczeniu dozylnym bo nie maja jak go przedluzyc. Inni lekarze sa zastraszeni ostatnimi wypadkami, a najblizsi niezastraszeni na tyle daleko, ze trzeba sie do nich udac samolotem.
Artykul moze byc przydatny gdyby ktos kiedys pisal ksiazke z historii medycyny.

Medical Board Blocking Care

The Rhinoceros Times
Vol. VI No. 6 2007
The Rhinoceros Times Charlotte,
North Carolina
February 8, 2007


Fifteen-year-old Kalyn Faggart can feel her world growing dark. It starts with a throbbing pain near the back of her head, the pressure from fluid accumulating in her cranial cavity building and pressing against her sensitive optic nerve with a blinding intensity. Kalyn’s world goes dark one slow frame at a time, the result of a debilitating disease that attacks the central nervous system. Her field of vision narrows as the swelling around her brain becomes more severe, progressively stealing her sight by the hour, day and week.

Kalyn’s mother, Denise Faggart, knows that time is precious and that it is running out. “If left untreated, Kalyn’s ophthalmologist says she’ll go blind,” Denise Faggart said flatly of her daughter’s deteriorating condition. “Right now, we’re looking at about a four-week window and it’s terrifying.” Denise Faggart has been in a race against the clock for nearly a month now, petitioning the N.C.

Medical Board to allow her daughter to continue receiving medical care from Dr. Joseph Jemsek, a Charlotte-area infectious disease specialist who is at the center of a national controversy over Lyme disease that nearly cost him his medical license and, advocates contend, has left hundreds of his patients in dire straits. Patients like Kalyn Faggart. Three years ago, Kalyn was sideswiped by a mysterious onslaught of ailments – chronic joint pain, crippling headaches, an alarming loss of cognitive abilities and a measured loss of vision.

She had gone from a straight-A student who loved hiking and playing the piano, Denise Faggart said, to a girl who was stumped by simple math problems and was often left bedridden for days. After months of doctor visits and batteries of exams, Kalyn’s pediatric neurologist, Dr. Robert Nahouraii of Mecklenburg Neurological Associates in Charlotte, suggested she get tested for Lyme disease.

The Faggarts went to see Jemsek, who had drawn national acclaim during the late 1980s for his pioneering work in the field of HIV/AIDS. Six years ago, Jemsek began expanding his medical practice to include the treatment of Lyme.
By the time Kalyn was referred to him in 2004, Jemsek had gained a reputation as one of the forerunners of so-called Lyme literate doctors, with patients from across the country seeking him out for treatment.
“We had the best neurologist; we had the best ophthalmologist and we wanted the best infectious disease specialist,” Denise Faggart said. Kalyn tested positive for Lyme and, under Jemsek’s care with consultation from Nahouraii and Kalyn’s pediatric ophthalmologist, Dr. Sandra Brown of Cabarrus Eye Center, she began a regimen of oral antibiotics.

[artur737]

After more than a year, Kalyn showed only limited progress and her doctors decided to pursue a more rigorous intravenous treatment. “It wasn’t an easy decision to make, but everybody had come to the conclusion it was what would work best,” Denise Faggart said.

Everybody, it seemed, had been right. Over the course of the ensuing months, Denise Faggart said, the IV treatments worked wonders. “Kalyn was Kalyn again,” she said. “I know it sounds melodramatic, but it was a miracle.” The miracle turned into a nightmare last summer, she said, when the N.C. Medical Board suspended Jemsek’s license to practice medicine for one year. The board ruled that Jemsek’s treatment of Lyme disease using long-term courses of antibiotics fell outside the prevailing standard of care, even though the guidelines on which the standards were based – which advocate antibiotic treatments of no longer than 28 days – are stated to be optional. The accepted guidelines, which were written by the Infectious Diseases Society of America, state that there is no proven evidence that the bacteria that causes Lyme persists past the first few weeks of treatment. Additionally, while consent for treatment was obtained from every patient Jemsek treated, the board ruled that Jemsek failed to adequately inform patients that his treatment significantly differed from the accepted norm. The board immediately “stayed,” or lifted, the suspension, allowing Jemsek to continue practicing medicine but with a number of restrictions for a period of one year. One of the restrictions was a prohibition from administering antibiotics for more than 60 consecutive days to treat Lyme patients. Last September, Kalyn’s cycle of IV antibiotics hit the 60-day mark. When the treatment was stopped, Denise Faggart said, Kalyn’s symptoms returned with a vengeance.

Mass doses of diuretics to relieve the fluid swelling in her cranial cavity proved futile, as did a combination treatment of other medication. Last month, Kalyn underwent multiple lumbar punctures – painful procedures where a needle is inserted into the spinal cord to drain excess fluid – all without success.

“It’s not that we haven’t tried every route possible,” Denise Faggart said. “It’s that nothing else has worked.” Kalyn was put on restrictive bed rest following the failed lumbar punctures; her eyesight gradually diminishing as the pressure on her optic nerve increases and her mother continues to petition the N.C. Medical Board for a waiver of the 60-day treatment restriction placed on Jemsek. Nahouraii and Brown have also both encouraged the Medical Board to allow her treatment under Jemsek to continue.

Last week, Denise Faggart learned that the Medical Board’s director and its attorney had initially indicated they want the Faggarts to explore options of seeking treatment from other physicians in North Carolina, or traveling to the northeastern US for care, before considering her request for a waiver to the restrictions placed on Jemsek. Denise Faggart was devastated. “It’s insanity,” she said. “We’re begging our own state’s Medical Board to allow Kalyn to get healthy. We’ve already searched for other doctors in and out of North Carolina, and they either deny chronic Lyme disease exists or refuse to help.

“I don’t think the Medical Board set out to harm children when they took their action against Dr. Jemsek,” Denise Faggart said. “But they are. They’re harming my child.”

And she’s not alone. The parents of another of Jemsek’s Lyme patients – 15-yearold David Jacks – are also petitioning the Medical Board to allow Jemsek to continue administrating IV antibiotics to their son.

[artur737]

David’s two other treating physicians have also written the Medical Board, encouraging the board to allow Jemsek to continue treating David. “It’s been incredibly frustrating,” said David’s mother, Katie Jacks. “David’s in a tremendous amount of pain and the longer this drags out, the worse it gets.” David’s medical history is remarkably similar to Kalyn’s: Nearly three years ago, he went to bed one night feeling fine and woke up the next morning with chills, a fever and severe body aches. “We thought it was a bad cold,” Katie Jacks said, “but it kept getting worse and it didn’t stop.”

The Jacks sought treatment from a variety of doctors and David underwent myriad tests, until a psychologist recognized his symptoms as possibly being Lyme-related and recommended Jemsek. David, similar to Kalyn Faggart, was started on a regimen of oral antibiotics but failed to respond. After nearly a year, the Jacks opted for a more aggressive IV treatment. The first few weeks, Katie Jacks said, were horrifying. The potent antibiotics were actually making her son physically sicker.

“It’s almost like chemotherapy,” Katie Jacks said. “The treatment is difficult; it makes you sick while it’s making you better.” After the initial sickness that accompanied the first IV cycle passed, David showed remarkable progress. But, like Kalyn, he became progressively worse as he was weaned off the IV. When the treatments resumed, so did his health. “It’s like night and day,” Katie Jacks said.

In that respect, it’s been a long and dark night since David’s IV treatments were halted by the Medical Board’s 60-day restriction, Katie Jacks said. Her son has been receiving oral antibiotics from another doctor, but the doses are either too low to prove effective, or too strong for David to keep down. Over the last six weeks, Katie Jacks said, her son has lost about 10 pounds, the result of a severe digestive disorder; he runs a constant fever, while recurring migraines and swollen joints bring him at times near tears. His eyes, while not immediately in danger of losing sight like Kalyn’s, are incredibly sensitive to light. He can’t venture outside, even on cloudy days, without wearing two pairs of thickly tinted sunglasses. “He says it’s like living in a constant blur of pain,” Katie Jacks said.

When Katie Jacks learned last week that the Medical Board was expressing reservations about granting a waiver for Jemsek to continue treating her son, she was crushed. “We’re at the end of our rope,” she said. “We’ve looked for other doctors, but nobody will deal with it here because they’re terrified by what happened to Dr. Jemsek. “All we want is for our son to be able to be home and get well,” Katie Jacks said. “Dr. Jemsek did that for us. He gave us back our son’s life.”
Other former patients, however, say that Jemsek destroyed theirs, that he’s a reckless maverick more concerned with making a fast buck than with delivering quality medical care. The N.C. Medical Board brought charges against Jemsek based on his treatment of 10 patients. During a two-day hearing last June in Raleigh, the Medical Board’s attorneys – who act as prosecutors for cases brought before the 12-member board – argued that Jemsek’s treatment violated accepted standards of care, and did more harm than good.

[artur737]

While more than 200 of Jemsek’s patients turned out at the hearing to provide support, and hundreds more had sent letters offering the same, several former patients testified before the Medical Board that Jemsek had used them as a “guinea pig,” pumping them full of expensive antibiotics for months, sometimes years at a stretch, even if they had not been tested or had not tested positive for Lyme disease.

Heather Jenkins, who went to Jemsek in April 2002 with chronic fatigue and flulike symptoms, told the Medical Board that Care Jemsek kept her on daily IV antibiotics for nearly a year-and-a-half, during which time she developed multiple infections around the IV port in her arm. The last infection, she said, put her in a hospital intensive-care unit for five days. “He almost killed me,” Jenkins said of Jemsek.
A blood test showed that she did not have Lyme, although lab testing often proves unreliable in detecting the bacteria that causes the disease. Joseph Jabkiewicz testified that his wife, Kathy, died after receiving treatment from Jemsek. Jabkiewicz said that Jemsek misdiagnosed his wife with chronic Lyme disease and subjected her to two years of needless antibiotic treatments, despite numerous lab tests that did not present positive for Lyme.

Over the course of her treatments, Jabkiewicz told the Medical Board, his wife became increasingly ill and was hospitalized numerous times. Jabkiewicz is currently suing Jemsek in civil court. According to the lawsuit, Kathy Jabkiewicz obtained a prescription for morphine from Jemsek to help ease her pain and died after one dose. Jenkins is also pursuing a lawsuit against Jemsek. Through his attorney, Jim Cooney of Womble Carlyle Sandridge & Rice, PLLC, Jemsek issued the following statement:

“While applicable federal and state law prohibits us from discussing the specifics of any patient care, I can assure you that there is another side to the story.”
Jemsek told the Medical Board that his treatment of Lyme patients has evolved with time and that most patients now receive breaks between active, long-term therapy.

He said that only the sickest 20 percent of his hundreds of Lyme patients receive IV treatment, and that he has changed some of the language in the consent forms patients sign to emphasize that such treatment differs from the accepted norm. Ironically, five of the patients who the Medical Board built its case against Jemsek around are still his patients and had written letters in support of Jemsek. One patient, James Bowes, told the Medical Board that Jemsek had explained the risks of long-term treatment and that those treatments had helped him regain his health.

And in a Charlotte Observer article, one Medical Board member, Dr. Art McCulloch, conceded that long-term antibiotic treatment like Jemsek provides might one day be the norm. The article, which was published after the board had disciplined Jemsek, reads, “McCulloch, the Charlotte anesthesiologist, said Jemsek’s approach could become the standard in five years, but for now patients need to know ‘his practice is out of the ordinary.’”

[artur737]

Dr. Beth Jordan, president of the North Carolina Lyme Disease Foundation in Raleigh, said she empathizes with the patients who testified against Jemsek, but maintains they represent only a small handful of the ones he treats, including herself. Jordan received successful treatment from Jemsek for chronic Lyme disease, she said, after being shuffled for years from doctor to doctor.
“He helped me get my life back,” Jordan said. “By the time most of his patients get to him, they’ve suffered and been desperately ill for years, seen countless specialists and many of them had nearly given up hope for help. “I’m glad the Medical Board allowed Jemsek to continue practicing,” Jordan said. “I think they recognized he’s serving the community in a good way.” Katie Jacks agreed, but worries about the fate of her son resting in the hands of the Medical Board.
“I feel that in many ways Dr. Jemsek has gone well beyond the call of duty and
literally sacrificed his reputation in the eyes of many to help very ill people like my son,” Katie Jacks said. “I credit Dr. Jemsek with saving my son’s life,” she said. “But will he be allowed to continue?”

[artur737]

Battle Lines Drawn
In Bitter Lyme Wars
BY M.E. PELLIN
EDITOR

Kalyn Faggart and David Jacks, profiled in this week’s Rhinoceros Times, have become front-line casualties in what has come to be known nationally as the Lyme Wars. To a varying degree, so has their doctor, Joseph Jemsek.
Last summer, the N.C. Medical Board disciplined Jemsek for his treatment of Lyme disease, which included long-term courses of antibiotics contrary to prevailing guidelines of care. Additionally, while all of Jemsek’s patients consented to treatment, the board ruled that he failed to adequately inform them that his treatment differed from the norm.
The board allowed Jemsek to continue practicing medicine, but with a number of restrictions for a period of one year. Whether he’ll be able to continue doing Lyme disease is a bacterial infection caused by a corkscrewed-shaped bacterium called a spirochete, which is spread by the bite of infected deerticks.
Once the spirochete enters the bloodstream after a tick bite, it spreads through the body and can cause a wide range of musculoskeletal and neurological symptoms; some of the more common include persistent headaches, fever, fatigue, muscle and joint pain and a reddish, bull’s-eye skin rash, although not all patients develop the rash.
Lyme disease is named after the town – Lyme, Connecticut – where it was first diagnosed in the United States in 1976.
Lyme disease has been reported in 48 states, including North Carolina. so, at least in North Carolina, is uncertain: In January 2006, Jemsek said, Blue Cross and Blue Shield of North Carolina (BCBSNC) began denying claims on a majority of his Lyme treatments, just as his practice was moving into a new $8 million medical clinic he had built in Huntersville. Last September, BCBSNC filed a lawsuit against Jemsek, alleging that he fraudulently and deceptively misrepresented the services and treatments he provided and failed to sufficiently disclose the nature of those services and treatments. BCBSNC alleges that Jemsek owes the insurance company $14 million, and is suing him for up to $100 million.

[artur737]

Jemsek, through his attorney, Michael F. Ruggio of the Washington, D.C.-based office of Polsinelli Shalton Flannigan Suelthaus LLP, denied the complaints. “I have a real problem with what the Blues are doing here,” Ruggio said. “There’s no basis for what they did. It had to be something driving this other than his treatment of patients and that he didn’t disclose stuff, because he did disclose stuff.” Ruggio said that from 2000 through 2006, BCBSNC paid for the treatment Jemsek provided, while being given full access and conducting audits of his patient files, with no complaints.
Jemsek has filed a counter lawsuit against BCBSNC, Ruggio said, alleging that the insurance titan is in breach of contract, has failed to pay for services rendered and has engaged in unfair and deceptive trade practices. In the wake of the Medical Board’s ruling and BCBSNC’s lawsuit, Jemsek has filed for personal and professional bankruptcy. He said he’s currently in the process of selling the Charlotte home he built 20 years ago to pay attorney fees. Jemsek’s clinic owes more than $2 million to its top 20 creditors, according to court documents, and this week was served notice of foreclosure. The clinic, he said, has already had to layoff 45 employees.
Jemsek’s HIV/AIDS practice, which he built over 23 years, has been forced to go to a fee-based system for patients because insurance carriers will no longer cover his treatment, effectively shutting down the state’s largest, private HIV/AIDS facility.
Jemsek, who in the early 1980s diagnosed the first case of AIDS in Mecklenburg County, said that his 1,000 HIV patients have had to find care elsewhere, many with limited success.
Before the Medical Board and BCBSNC storm hit, Jemsek said, his clinic had been providing care for about 200 new HIV/AIDS patients a year. Jemsek has twice been recognized by the state for his HIV/AIDS work, receiving the Certificate of Appreciation and World AIDS Day Volunteer Service awards from govenors Jim Hunt and Mike Easley.

Jemsek currently treats about 1,200 Lyme patients. But like his HIV/AIDS patients, many have been forced to look elsewhere for treatment because BCBSNC, along with other insurance carriers, no longer covers his. “It’s been difficult for my patients, who are very worried about their future medical care, ” Jemsek said. “We draw tremendous strength from the support they’ve given us and continue to provide us on a daily basis. “We believe that we’ve restored health to thousands,” Jemsek said. “We’re not going to give that up. We owe it to our patients to fight for their care, in spite of the adversity.” It will likely be a long, costly and bitter battle, and one that could have national implications. “This will be a very, very important case that could set precedent for any and all Lyme treatment and any and all insurance coverage nationwide,” Ruggio said of Jemsek’s legal battle with BCBSNC.
Jemsek, 57, isn’t the only doctor that has been disciplined by medical licensing boards, or faced insurance problems, for the treatment of Lyme disease. Nationwide, about 30 doctors have faced similar charges for treating Lyme patients contrary to accepted guidelines of care. Those guidelines were created by the Infectious Diseases Society of America (IDSA) – an 8,000-member organization comprised largely of doctors that specialize in the treatment of infectious diseases – which believes Lyme can be cured with a limited treatment of oral antibiotics, typically not more than 28 days. The IDSA guidelines state that the long-term use of antibiotics is not only ineffective, but can be harmful to patients.

[artur737]

The IDSA does not acknowledge the existence of chronic Lyme disease, where Lyme-like symptoms last for more than a few months and sometimes years. The IDSA guidelines state there is no solid diagnostic evidence that infection with Borrelia burgdorferi – the bacteria that causes Lyme – persists past the first few weeks of treatment.

“I keep hearing about people complaining about these long-term symptoms,” said Dr. Jeff Engel, the state’s chief epidemiologist, who testified against Jemsek in last summer’s Medical Board hearing. “I feel for them,” he said. “I know their pain is real. I know they’ve gone from doctor to doctor. I want them to get better. But there’s no evidence they have Lyme.” By contrast, the International Lyme and Associated Disease Society (ILADS) believes that Lyme should be treated with antibiotics until all of a patient’s symptoms are resolved, and that diagnosis of the disease should depend as heavily on hands-on, clinical observation of patients as lab tests. The Centers for Disease Control and Prevention (CDC), they note, even recommends against relying solely on diagnostic tests.
The ILADS, with about 300 members of physicians and infectious disease specialists, recognizes chronic Lyme as a legitimate disease, pointing to thousands of patients that have exhibited long-term symptoms consistent with Lyme.
The differences between the two, competing philosophies of care for Lyme disease have ignited a firestorm of controversy and frequently pitted doctor against doctor.

The Lyme War battle lines have been drawn, and it’s often patients who get caught in the crossfire. The CDC endorses the IDSA guidelines, but there is no rule that stipulates doctors must follow them. In fact, the guidelines carry an important disclaimer – a note that the recommendations “are not intended to supplant physician judgment in respect to particular patients in special clinical situations.” “The people who say that this is a set of rules that can’t be broken and everybody has to follow absolutely, or a bolt of lighting’s going to come down and smite them, clearly it’s not that,” said Dr. Eugene Shapiro, one of the authors of the IDSA guidelines and a professor of pediatrics and epidemiology at Yale University School of Medicine. “The guidelines,” Shapiro said, “are meant to provide an unbiased guide by experts of the best scientific evidence to try to help patients.” Critics of the guidelines, however, argue that too often they have become the default standard when medical licensing boards and insurance companies make decisions regarding Lyme disease treatments.
Dr. Raphael Stricker, president of the ILADS and an oncology specialist with Union Square Medical Associates in San Francisco, said that he routinely treats Lyme patients with long-term therapy, but only because California is one of the few states with legislation that protects doctors from being disciplined for doing so. Rhode Island offers similar protection, as does New York. Last December, after the IDSA released its updated guidelines, hundreds of protestors from around the country took to the streets outside Valhalla, New York’s Westchester Medical Clinic, home base of Dr. Gary Wormser, the lead author of the IDSA guidelines.
According to an article in The Journal News, protestors waved signs with messages like “Wormser lies … Patients Dies” and “Dr.Wormser – You Make Me Sick!” Wormser declined comment through a spokesperson this week about his involvement with the IDSA guidelines and the criticism they’ve spawned, referring all questions to the society.
IDSA spokesperson Diana Olson said, “It’s heartbreaking when you hear stories like that.
Our hearts go out to patients who are seeking other long-term treatment options. But, to be quite honest, I think that a lot of the folks who believe that they have chronic Lyme disease may, in fact, have other conditions.”

[artur737]

That’s small consolation for Katie Jacks. Her son, David, is one of Jemsek’s patients that had insurance coverage revoked for longterm Lyme therapy. “I actually believed their commercials about how they’d always be there for you,” Katie Jacks said of BCBSNC. “They haven’t paid a penny, even after David had tested positive for Lyme, and long-term treatment is the only thing that has worked.
“It’s insulting to have somebody tell you your son isn’t sick,” she said, “when he’s curled up in a ball of pain.” Pat Smith, president of the New Jerseybased Lyme Disease Association, which represents 24 patient-advocacy groups across the country, said a growing number of insurance companies are refusing to cover long-term Lyme treatment because of the IDSA guidelines.
“Patients are constantly telling us about their inability to receive long-term treatment,” said Smith, who has two daughters with Lyme disease. “What are they supposed to do, just continue suffering?” Shapiro said the IDSA guidelines weren’t crafted to insult or deny treatment to any patients, although they’re often wrongly judged to that end. “I think part of the problem is that some patients have taken the guidelines as a bunch of people in white lab coats saying, ‘You’re not sick,’ or ‘You don’t have a problem,’” said Shapiro,. “In fact, there’s a lot of evidence that many of these patients have significant problems,” Shapiro said. “Part of the problem is, if their problem isn’t Lyme disease, not only are they getting unnecessary treatment that will provide no benefit, but they aren’t getting treatment for what they may have that actually would help them.” Shapiro said there’s a reason insurance companies deny certain coverage. The IDSA guidelines are based on scientific fact, he said, backed by years of research and volumes of clinical studies. Long-term antibiotic treatment for Lyme disease, he said, doesn’t work and carries substantial risk, which the guidelines reflect. “What you’re doing is you’re weighing benefit versus risk,” Shapiro said. “And if there’s no benefit and substantial risk, I don’t think insurance companies should be paying for that.”
The IDSA guidelines, though, are coming under renewed scrutiny. Connecticut Attorney General Richard Blumenthal filed a Civil Investigative Demand inquiry last December into the IDSA based on the contention that the group’s updated guidelines might harm Lyme patients by restricting care. The inquiry is also exploring possible anti-trust violations by the IDSA concerning the development of its guidelines and how they are administered.
Blumenthal could not be reached for comment. An article by the Associated Press, posted last December on The Boston Globe’s Web site, quotes Blumenthal as saying of the IDSA guidelines, “These rules diminish the options available to doctors and their patients in ways that can sanction insurance company decisions to deny coverage, so they can have an economic impact that could be very serious.” Olson said the IDSA is cooperating fully with the Connecticut attorney general’s subpoena regarding the society’s guidelines, and that it “stands behind its method of developing and issuing guidelines for diseases, including Lyme disease.” Lorraine Johnson, an attorney and the executive director of the California Lyme Disease Association, said the IDSA guidelines are too restrictive.

“They list more things that you can’t do than descriptions of what you can do,” Johnson said. “And their list of what you cannot do appear to be the practices of their competitors.” Also, several of the authors who wrote the guidelines have conflicting interests with companies that develop vaccines or other Lyme-related interests, she said.
“These conflicts helped drive the viewpoint of the physicians sitting on the IDSA panel,” Johnson said. “Things that become good for the commercial interests get in the way of what’s best for the patient.” A disclosure statement attached to the bottom of the IDSA guidelines shows that five of the 14-member panel that created the guidelines listed potential conflicts of interest, including Wormser, the guidelines lead author, who has received consulting fees from Baxter Healthcare Corporation and research support from Immunetics, a biotechnology company that develops Lyme tests.

[artur737]

Another IDSA panel member has also received consulting fees from Baxter, while another is part owner of Biopeptides, a biotech company that develops vaccines and laboratory diagnostics, including products for Lyme disease. Still another panel member has served as an expert witness for pharmaceutical giant GlaxoSmithKline; another has a patent pending with a university on a Lyme diagnostic procedure that is not yet on the market.
Olson, the IDSA spokesperson, said the guidelines were based on scientific evidence and proven research, not the influence of commercial interests or insurance companies.
The guidelines, she reiterated, aren’t used to deny coverage or exclude certain doctors. Jemsek, ironically, is a member of IDSA and offered praise for the society; but not on the issue of Lyme “I think the IDSA is a wonderful and very talented group of professionals,” Jemsek said. “They’re just dead wrong on this Lyme issue.”

Zespol przewleklego zmeczenia a borelioza

[artur737]

24 July 2006

DR. ANDREW WRIGHT - THE TERRIBLE TRIO
From Lara.
THE TERRIRLE TRIO

(Infection, Inflammation and Mitochondrial dysfunction)

Dr Andrew Wright

This short document is just to briefly outline the role of the three processes of infection, inflammation and mitochondrial dysfunction in patients with CFS/ME.

When one looks at the total number of symptoms of CFS/ME, as described by patients and best outlined by the Canadian Consensus Criteria for this illness, one finds that the symptoms of this illness most closely match the illness called Chronic Lyme disease. This is where a patient with clinical Lyme disease develops a multi-system illness even despite antibiotic therapies.

One physician who has had a particular interest in this is Dr William Harvey, in Texas. He himself became ill with CFS/ME and after making a partial recovery, he started to work in a CFS/ME clinic in Texas. He found that if he repeatedly tested his patients, using Western Blot and PCR, he invariably found the majority of patients positive for Borrelia Burgdorferi sensu lato (that is the genus species and not necessarily the same bacteria as Borrelia Burgdorferi sensu stricto which is the Lyme agent).

However, he realised that there were not many ticks or vectors in Texas that were known to carry this bacteria. He then spent the next two years researching everything that was ever written about Borrelia, both in medical and veterinary literature. He realised, following this very careful analysis of the literature that Borrelia has been around as a bacterial infection for many years. The DNA of Borrelia Burgdorferi can be found in museum specimens of ticks collected in the late 1800's.

The first written description of Lyme disease appeared in the 1920's. Further reports occurred early in the 1970's and 1980's before the causative agent for the illness, known as Lyme disease, was elucidated.
Indeed, it was shown that Borrelia as an infection has been linked to not only Lyme disease but many other illnesses such as Motor Neurone disease, Multiple Sclerosis, Thyroid autoimmune disease and Rheumatoid Arthritis in both the past and recent literature.

[One Click Note: See Dr William Harvey's paper: Lyme disease:ancient engine of an unrecognised borreliosis pandemic]

One of the stumbling blocks is that the standard two-tiered assay is not probably applicable in chronic illness. Even in acute Lyme disease, a two year study recently undertaken by John Hopkins University, has shown that using the combination of culture, ELISA testing, skin biopsy and PCR and blood PCR they could only detect somewhere in the region of 55% of patients with clinical Lyme disease.

In chronic illness, studies have shown that the ELISA is variable negative. My own experience is that it turns out to be positive in around 2% of patients. I myself use a dark-field microscope looking for certain diagnostic morphological appearances of spirochetes that have been validated as being Borrelia Burgdorferi sensu lato by Dr Bella Bozsik, a Lyme disease clinician and a National Institute of Health scientist from Hungary.

I have been able to identify spirochetes in the vast majority of my own patients. The bacteria are extremely clever genetically. It seems that the only logical explanation for our current confusion is one of semantics. Lyme disease is only one part of the much bigger human infection with Borrelia species, of which we know very little. The total human infection burden has been called 'Epidemic Human Borreliosis'.

The main difference is that ticks are very efficient at transmitting the bacteria, even after a single inoculation. Obviously, though as we know the majority of CFS/ME patients have not been bitten by ticks.

There is evidence however that Borrelia may be present in populations at a much greater prevalence than we conventionally think of.
A study in 1991 looking at seropositivity in asymptomatic adults in Ireland, performed by Dr Smith at the Department of Bacteriology in Glasgow. showed that using samples from the blood transfusion service in Ireland, prevalence figures of between 5 and 15% were found in random samples tested.

This can be explained by the presence of ticks, but the figures were surprisingly high. An even more interesting study was performed by Burkot in 1997 where a large proportion of serum sample (57%) were positive by the Dressler criteria for IgG positivity, despite the fact that in Papua New Guinea all know arthropod and other vectors of the Lyme disease spirochete are absent.

These studies show that the Borrelia bacteria are indeed probably present in larger numbers than we have anticipated.
Because these Human Epidemic Borreliosis type patterns have not yet been fully researched, it is impossible to present a full picture of the possible patho-physiological consequences, but I do believe the evidence is accumulating as per Dr William Harvey's excellent work, that this bacteria may be an important aetiological agent in not only CFS/ME and also in many other illnesses.

It seems likely that people pick up smaller amounts of infection through multiple means as they go through life before becoming unwell. For example studies have shown the bacteria to be present in mosquitoes and mites.

Congenital and sexual spread has been documented in the medical and vetinary literature. Borrelia has been isolated from many body fluids, including blood, breast milk and sperm.
In the first case, i.e. tick vectored illness a brisk antibody response is usual, but in the second cases, it seems that the infections are completely different in their patho-physiological features.

[artur737]

It is suggested that many exist as 'L-forms'. This is a cell wall deficient form inside cells. Here they exist quietly and for the majority of people carrying the bacteria asymptomatically. Similar situations are found in asymptomatic carriage of e.g. Meningococcal bacteria and MRSA. This is the ideal situation for the bacteria.
Only stupid microbes make themselves known!

This results in a brisk immune response and even death eventually limiting the spread of the microbe according to Evolutional Biology principles. Even in acute Lyme disease the symptomatic to asymptomatic ratio is thought to be around 1:1.

If the immune system does recognise the presence of the bacteria due to other factors such as further exposure, prolonged stress, trauma or co-infections, all altering immune responses, then bacteria have a secondary survival strategy.

This is to drive inflammation. Dr Trevor Marshall has elucidated the mechanism of this inflammation recently.
It involves the coupling of the human hormone, produced by the kidneys, Angiotensin II, to receptors on diseased macrophages and Angiotensin II ‘like’ receptors on Borrelia and other bacterial membranes.

This drives the conversion on the inactive seco-steroid 25 (OH)2D, stored in the liver, by the kidneys to be active 1, 25, (OH)D. This eventually leads to a TH I cytokine response and inflammation.
During this the immune system is simply unable to deal with the intracellular infections and persistent illness results.

Vitamin D is in fact not a vitamin in the accepted sense of the word, but a seco-steroid molecule, acts as a hormone or chemical messenger, having influence on over 60 genes concerned with hormone regulation, immunity and cell-death. All these are known to be affected in CFS/ME.

Following on from this you then also see mitochondrial dysfunction in the vast majority of patients. Clinically this is manifested as a lack of energy in many systems of the body.

This may be cognitive or brain functioning problems and / or physical problems such as myalgia, postural orthostatic tachycardia syndrome, irritable guts and the severe post exertional malaise that people exhibit. Fortunately, there is now a test to measure this.

Dr. John McClaren-Howard at Biolab in London has developed an ADP/ATP assay, which will measure the efficiency of ADP/ATP conversion. It will look for blockages in the pathway leading to the release of sustainable unusable energy and also if there are any blockages in protein such as Translocator proteins, which have an impact on mitochondrial ATP production. Most importantly it does enable some therapeutic interventions to overcome this.

As regards other evidence for the role of chronic infections causing illness, recent work from the Vascular Biology Unit at Dundee has shown that CFS/ME patients have a marked degree of inflammation and oxidative stress, compared to the other groups.

This is using high sensitive C-reactive proteins, plasma Isoprostanes and other oxidised products as a measure of the inflammation and oxidative stress that occurs in chronic infection. This was compared to controls and other fatigued groups i.e. organophosphate poisoned persons and Gulf War Syndrome sufferers, showing the pathogenesis of these Fatigue disorders is almost certainly different.

Following on from this work Professor John Gow at the University of Glasgow, has shown that the gene expression profile in carefully selected CFS/ME patients is identical to that seen in Lyme disease.

Obviously this is a very important finding with regards to the suggestion that CFS/ME is similar but not the same to Chronic Lyme.

To summarise-

CFS/ME and Chronic Lyme have virtually the same symptoms.

CFS/ME is a 'Pro-Inflammatory' and 'Pro-Oxidant disorder' typical of chronic infection.

Transmission is by different routes and vectors, with a different response to this by both the bacteria and the immune system.

High prevalence of the genospecies has been found in studies, not always related to tick exposure.

The gene expression profile is identical.

Other work that I have been involved in suggests that other bacteria’s such as coagulese negative staphylococcus and gram negative endotoxin producing bacteria may be important.
Other workers have noted high levels of other bacteria's such as Chlamydia pneumonia, Mycoplasma and Rickettsia.

What characterises all of these bacteria is their intracellular habitat and their ability to produce inflammation. Dr. Marshall has shown that many do carry an Angiotensin II like receptor on their membranes, by the use of the molecular modelling techniques.

Hopefully as scientific and medical interest in this novel and as yet under-researched field we will find many more answers to the many questions about chronic illness which, so far, defy explanation.

A full and exhaustive list of references is available on request, including microscopic pictures and proof of the nature of them as Borrelia burgdorferi sensu lato from Dr Bozsik.

Dr. Andrew Wright
April 2006

Ustawa w parlamencie zagrozona

[artur737]

Wieloletnia praca amerykanskiego stowarzyszenia chorych z borelioza na temat
edukacji o tej chorobie zostala zagrozona.
Z chwila gdy ustawa przeszla przez szereg komisji i zostala zatwierdzona na
szeregu szczeblach, IDSA uzyla swoim wplywow i zmienila tresc projektu ustawy w
taki sposob, ze siebie uczynila glowna odskocznie merytoryczna.
W zwiazku z tym obecnie powstala potrzeba zatrzymania calego procesu bo w
obecnej formie ustawa przyniosla by pacjentom wiecej szkody niz pozytku.
Wynika, ze sama dzialalnosc woluntariuszy jest niewystarczajaca i byc moze
konieczna jest pomoc zawodowych lobbystow dobrze znajacych zasady funkcjonowania
panstwa.


Lyme disease education bill passes House, headed for Senate


By STEVE NERY
Staff Writer
March 31, 2007


ANNAPOLIS — A bill providing money to educate the public about Lyme disease has
unanimously passed the Maryland House of Delegates and is now headed for the
Senate, but Lyme disease advocacy groups worry the bill will do more harm than
good if approved.

Lyme disease is caused by the bacteria Borrelia burgdorferi, which is
transmitted through tick bites. Through mid-March, more cases (324) have been
reported to the Centers for Disease Control from Maryland than from any other
state, according to the Lyme Disease Foundation.

House Bill 836, which would provide nearly half a million dollars in funding
over the next two years to disseminate brochures about Lyme disease, passed
through the House Monday and is scheduled for a hearing by the Senate Education,
Health and Environmental Affairs Committee Wednesday.

While advocacy groups asked the House to amend the bill so that it doesn’t only
support the controversial Infectious Diseases Society of America (IDSA)
diagnostic and treatment guidelines, legislators did not do so.

Lyme disease groups, which often include people who have suffered from the
disease for years, tend to support more lenient guidelines which permit more
doctor discretion when it comes to diagnosing the disease and prescribing
antibiotics.

Organizations including the Lyme Disease Association asked the Maryland
legislature to amend the bill so that information from both sets of guidelines
available on the National Guidelines Clearinghouse — the IDSA and the
International Lyme and Associated Diseases Society (ILADS) guidelines — would be
made available through the educational campaign.

In its current form, however, the bill only promotes the IDSA version,
much-criticized for being drawn up by doctors who don’t actually treat Lyme
disease patients and under investigation by the Connecticut Attorney General for
possibly violating antitrust laws.

Lucy Barnes, director of the Lyme Disease Education and Support Groups of
Maryland, accused the House of Delegates of “flip-flopping” after promising to
include their amendment if advocate groups supported the bill.

Del. Karen Montgomery, D-14-Montgomery County, left Barnes a telephone message
Monday saying the bill would include the language referencing the National
Guidelines Clearinghouse.

Barnes was also concerned that Lyme disease advocates will not be allowed to
testify at the Senate committee hearing Wednesday unless Chairman Sen. Joan
Carter Conway, D-43-Baltimore City, approves a special request.

Lyme Disease Association President Pat Smith said she was pleased the Maryland
General Assembly was trying to raise awareness about the disease, but added that
“unfortunately, what they did was something that could actually turn out to be
detrimental as opposed to helpful.”

“I don’t see how this protects the residents of Maryland at all,” Smith said.
“It’s not good medicine for Lyme disease patients.”

The IDSA guidelines essentially deny treatment for chronic sufferers and suggest
28 days of antibiotic treatment for initial diagnosis, Smith said. Because of
the complexity of the bacteria, however, antibiotics are only effective at
certain times, Smith said, so the limited window doesn’t always work.

The IDSA guidelines also don’t allow for doctor discretion in diagnosing the
disease, Smith said, and delayed diagnosis can lead to the chronic form.

Various studies, including one at Johns Hopkins University, have concluded that
Lyme disease tests are extremely unreliable.

“Our feeling is the bill is not only dangerous to the people who have Lyme
disease but to those who will get it in the future as well,” Barnes said.

Aside from that concern, Barnes questioned the use of taxpayer money. The bill
would provide $484,000 for literature and posters; a television and radio
campaign was cut from the bill.

When support groups sent alternative information to 800 Maryland doctors, it
ended up costing about $200, Barnes said.

Smith said pieces of legislation concerning the disease have popped up in
several places in the last several years, especially in the northeast part of
the country.

Nowhere else has a state government explicitly given its support to the IDSA
guidelines, she said. Smith worried that the move might affect other states to
act in a similar manner.

“We can’t afford to have that happen,” she said.

Del. Addie Eckardt, R-37B-Dorchester, said she viewed the bill as a “first step”
in Lyme disease education, although it’s a bit of a smaller step than she would
like. She said she may work with the Maryland Department of Health and Mental
Hygiene to get them to use the alternative guidelines as well.

Eckardt noted that antibiotics are available for longer than four weeks for
other ailments, and hoped the opposing sides in the Lyme disease debate could
come to some sort of consensus.

She tends to agree with the advocates, she said, and plans to meet with doctors
experienced in treating the disease.

Past efforts between the opposing camps have not fared well in Maryland. In
October of last year, four patient advocates, including Barnes, resigned from
the Department of Health and Mental Hygiene Lyme Disease Advisory Subcommittee.

The other members of the group weren’t interested in what the patient advocates
had to say, Barnes said.

“We went in there with big hopes that we could educate and make a difference for
people with Lyme, but right from the beginning, it didn’t look promising,”
Barnes said of the subcommittee.

Eckardt also pointed to House Bill 119, which she sponsored along with Del.
Jeannie Haddaway, R-37B-Talbot, and which passed the House unanimously on March 9.

The bill adds to the number of infectious diseases that medical laboratory
directors are required to report to county health departments and requires the
state health department to report to the legislature on the continued need for
specific monitoring and reporting by Jan. 1, 2010.

The state needs better data on tick diseases, which are often co-occurring,
Eckardt said.


`````````````````````````````````````````````````````````````````````````````````````````````````


To contact paper with your comments...
Star Democrat- email [e-mail]

Phone- 410-822-1500

[artur737]

Amerykanskie stowarzyszenie pacjentow z borelioza podkresla, ze smierc Billa
Chinnocka przypomina, ze borelioza jest ciezka i niekiedy smiertelna choroba,
podczas gdy medycyna ciagla probuje te chorobe ignorowac a ubezpieczalnie
odmiwiaja pokrycia za leki.


www.app.com/apps/pbcs.dll/article?AID=/20070401/OPINION/704010308/1032
Stop ignoring Lyme disease
Posted by the Asbury Park Press on 04/1/07
Story Chat Post Comment

Music legend Bill Chinnock's suicide was attributed to his battle with Lyme
disease. Another human life is lost, another talent cut short due to a disease
many say is easy to diagnose and cure. ("Ill singer waged war against sickness,"
March 19.)

On the contrary, as this story illustrates, Lyme disease is serious,
debilitating and painful. It can attack the heart, muscles, joints and brain —
physically crippling the patient and causing numerous psychiatric manifestations.

Chinnock's native New Jersey, which ranks third in reported cases nationally,
has done virtually nothing to combat the disease. Little attention is paid by
the media, although more than 33,000 new cases of Lyme occurred here in 2005.
Lyme patients have limited options, since scientific controversy swirls. Doctors
are harassed for treating it and patients are denied coverage.

Perhaps the deaths of Chinnock and others due to Lyme could have been prevented
if the Centers for Disease Control and Prevention and the National Institutes of
Health placed more emphasis on the disease, and if government promoted awareness
instead of limiting cases that can be reported, leading to vast underreporting.
Patient advocacy organizations are almost singularly educating and "legislating"
changes to stop the spread and devastation of Lyme.

We ask everyone to support HR-741 sponsored by Rep. Christopher H. Smith,
R-N.J., to provide $100 million over five years for prevention, research,
education and patient support.

The first endowed chronic Lyme disease research center at New York's Columbia
University opens this spring. Research may prevent other families from suffering
a needless tragedy like this one.

Pat Smith

PRESIDENT

LYME DISEASE ASSOCIATION

WALL

Nie nalezy nadmiernie polegac na testach

[artur737]

Dr Donhue przypomina w tym artykule, ze testy w boreliozie sa zdradliwe i
wychodza zarowno falszywie dodatnio jak i falszywie ujemnie. Takze przypomina,
ze rumien po kleszczu wcale nie jest obowiazkowy w boreliozie.

www.heraldtribune.com/apps/pbcs.dll/article?AID=/20070328/COLUMNIST82/703280496
Dr. Paul Donohue
Interpret Lyme test cautiously

Dear Donohue: Last July, I found some ticks on me, along with chiggers. In
September, I had a rash

[artur737]

www.columbiacitypaper.com/
Bardzo dobra przegladowka, w sumie nic nowego dla uzytkownikow forum, ale
wsadzam z uwagi na ciekawa forme.

March 28 10:50 AM
A Human Feast

Published in Cover Story

By Todd Morehead

A couple of years ago Tallahassee, Florida police responded to reports of a
disoriented man wandering half naked in front of an apartment complex who was
clambering atop parked cars and menacing traffic. When they arrived on the scene
they found the man, Wyatt Sexton, star quarterback at Florida State University,
talking aloud to himself and doing push ups on the sidewalk. As officers
approached Sexton he reportedly seemed dazed, declaring, “I am God,” before he
became violent and ultimately had to be subdued with pepper spray. In the weeks
that followed it was discovered that drugs, alcohol or a preexisting mental
condition didn’t cause Sexton’s incident. He was suffering—unbeknownst to
himself or his regular physician—the effects of late-stage Lyme disease.

According the Centers for Disease Control (CDC) the number of reported cases of
Lyme disease, also called Lyme borreliosis, doubles in South Carolina every
decade. The disease is often difficult to diagnose, symptoms vary wildly among
patients and the medical community is split on effective means of treatment
despite the rigid treatment protocols set forth by the CDC. As the number of
cases continues to rise so too do the number of published scientific research
reports about the nature of the disease and specifically the seemingly
indestructible bacterium behind it all. Yet, these reports are largely left to
languish in obscure medical research journals and seem, to many in the medical
field, to be brushed aside by the CDC. Meanwhile, patient advocates say,
thousands of people continue to suffer ineffective treatment while thousands
more may be suffering from the disease without having been properly diagnosed.

tick

Borrelia burgdorferi, the bacterium responsible for Lyme disease, is a nasty
little corkscrew-shaped microorganism called a spirochete, which is transferred
to humans primarily through tick bites. Many believe that the bacterium is
transferred through other insects as well though so far the CDC has been
hesitant to conclude that for certain. Like its cousin, Treponema pallidum,
which is spread through sexual contact and causes syphilis, B. burgdorferi uses
a twisting motion, like a screw, to bore through viscous tissue and attack
virtually any part of the human body.

In 2001, according to The Journal of Clinical Microbiology, professors from
Georgia Southern University, the University of North Florida, and researchers
from the U.S. Army isolated 56 different strains of B. burgdorferi in the
southern United States. They concluded that B. burgdorferi is actually part of a
complex genospecies of similar spirochetes that can interbreed. According to the
report, seven different strains were cultured from ticks, cotton mice, cotton
rats and wood rats in South Carolina and Florida alone. A strain similar to the
B. bissettii genospecies found in South Carolina has been isolated from ill
patients in Europe.

For starters, Lyme borreliosis can attack the brain, nervous system, joints, the
heart, the G.I. system, or the urinary tract and the strain on the immune system
can cause other sicknesses to manifest more easily. It can entrench itself
deeply within tissue, often beyond the reach of antibiotics, can migrate with
impunity and cause multi-system illness that is often baffling to physicians. As
a result, many sufferers of Lyme disease are often misdiagnosed with other
diseases such as multiple sclerosis, lupus, rheumatoid arthritis, or psychiatric
disorders.

According to some doctors, if it’s not caught early, it can be almost impossible
to eradicate. According to others in the medical field, a simple round of
antibiotics will clear it right up. But more on that debate later.

[artur737]

Regardless of the debate over the chronicity of the disease and its methods of
treatment, recent data shows that the number of Americans infected by B.
burgdorferi is on the rise.

Thomas Parkman, president of the Lyme Disease Network of South Carolina, worries
that many in South Carolina’s medical establishment may be unwittingly
downplaying the severity of what many would consider a Lyme disease epidemic in
South Carolina due to inefficiencies in reporting cases of the disease, tracking
the spread of disease vectors such as black-legged ticks and policies of
following what he believes to be outdated scientific data.

“We have a systematic policy of denying its existence in the state,” says
Parkman. “We have people dying in this state from Lyme disease and the whole
thing is being ignored.”

The CDC Web site states that, “a county in which Lyme disease is endemic is one
in which at least two confirmed cases have been previously acquired or in which
established populations of a known tick vector are infected with B. burgdorferi.”

According to the CDC, there were 130 cases of Lyme disease reported in South
Carolina between 2000 and 2006, more than the number of cases reported in the
1980s and 1990s combined. And the number of reported cases appears to be
doubling each decade, the key phrase being reported cases.

“Surveillance for LD [Lyme disease] is subject to several limitations,” stated a
recent CDC study. “Studies from the early 1990s suggested that LD cases were
underreported by six to 12-fold in some areas where LD is endemic.”

If the cases in South Carolina are underreported 12-fold, as suggested by the
CDC, then the total number of actual infections could be closer 1,560.

Public misconceptions about the transfer of Lyme disease

As borreliosis infections continue to rise in the state, many public
misconceptions about the disease still linger. For instance, deer are often
associated with the disease because the main B. burgdorferi vector, the
black-legged tick, is commonly called the “deer tick.” It is still labeled “deer
tick” on the S.C. Department of Health and Environmental Control’s Lyme disease
fact sheet. Yet, deer are rarely infected with the Lyme spirochete. The only
role they play is in the transportation of the tick.

In 1991, the Southeastern Cooperative Wildlife Disease Study (SCWDS) at the
University of Georgia attempted to infect five whitetail deer with B.
burgdorferi by injecting them with a dose of “approximately 20 million”
spirochetes per animal. While only one of the deer showed a minor infection of
the bacterium in its ear, they easily recovered the spirochete from various
tissues in the hamsters they used as a control group.

“The possibility that deer are important in passing infection to feeding ticks
appears unlikely,” a transcript of the study states.

A SCWDS study from 1993 states, “Research has shown that deer are only
indirectly important in Lyme disease by serving as hosts for adult ticks … Many
wild mammals, birds, and even reptiles also are involved in the tick’s life
cycle, and wild mammals other than deer, especially rodents, are vertebrate
reservoirs of B. burgdorferi.”

The ratio of Lyme borreliosis infection in relation to deer population in South
Carolina quantifies the SCWDS findings. In stark contrast to the increase in
reported cases of Lyme disease, the S.C. Department of Natural Resources (DNR)
reports a decline in the deer population in recent years.

[artur737]

“The deer population maxed out in the 1990s,” says Charles Ruth with the SC DNR
Deer and Turkey Project. “Since that time there has been a 20 to 25 percent
decline in deer numbers statewide.”

With birds and most other mammals considered primary hosts for the black-legged
tick and with urban sprawl placing more people into newly developed rural
habitats, many are misinformed by the notion that Lyme disease primarily
afflicts hunters and outdoorsmen.

The hotly contested Lyme disease treatment guidelines from the Infectious
Diseases Society of America (IDSA) so far only implicate ticks as transmitters
of the disease, though some researchers in the field now disagree that ticks are
the sole vectors.

Data now exists that implicates other possible carriers like fleas and mites. In
1998 a study in the Czech Republic claims to have isolated a genospecies of the
burgdorferi spirochete, B. afzelii, from a mosquito. B. afzelii, like other
burgdorferi offshoots, is a human pathogen and also causes the infamous bulls
eye rash typically associated with Lyme disease.

A few researchers believe that B. burgdorferi may also be both congenitally and
sexually transmitted. Tessa D. Gardner, M.D., of Washington University School of
Medicine conducted extensive research and found evidence that B. burgdorferi was
transmitted from mother to fetus. Neonates often showed symptoms of Lyme
disease, though she found that cases of congenital borreliosis transfer are
relatively rare, estimated at around 40 cases per year in the United States.

The Lyme spirochete has also been found in human sperm, though no viable
research has yet been done to prove that Lyme disease is sexually transmitted.
However, there has also been no viable research to prove that it is not.

The CDC disregards congenital, gestational, or sexual transfer cases.

Are they sick or crazy? What the new science indicates

Two camps have formed in the medical community over Lyme disease. On one side
are the self-proclaimed “Lyme literate” doctors, who disagree with the IDSA
treatment guidelines and believe that long-term treatment is needed to fight the
disease. On the other side are those who follow the prescribed methods put forth
by the IDSA and the American Medical Association, who disbelieve in the
existence of a long-term, chronic form of Lyme borreliosis.

Yale University professor, Stephen Malawista, M.D., and research fellow Allen C.
Steere, M.D., identified the disease in 1975 after mothers in Lyme, Connecticut,
insisting that an infectious agent was responsible for the arthritic swelling of
their children’s joints, spurred their research. Yale maintains that Dr.
Malawista proved a brief dose of antibiotics will almost always cure the disease
in its early stages and are usually effective in later stages as well.

Six years later, in 1981, Dr. Willy Burgdorfer discovered the spirochete
associated with the disease. But, the scientific community’s treatment
guidelines remained the same.

Many sufferers of the disease, like Thomas Parkman, worry that a few in the
medical industry have managed to dictate policy to the majority of health care
organizations through a closed process that rejects dissenting views and
theories. As a result, say sufferers, the majority of the medical industry
follows the lead of the seemingly one-sided process, often at the cost of their
patients.

“Here you have an explanation of Lyme that came out in 1975 that is completely
erroneous,” Parkman says. “There is a whole body of research which refutes it
and these people have ignored it.”

Mainstream doctors, on the other hand, are concerned that a few “quacks” are
misleading the general public.

In 2000, the Journal of the American Medical Association published the results
of a study of the long-term outcomes of patients with Lyme disease, which was
conducted by a group of researchers from the Yale University School of Medicine.
Studying 678 patients from a random sample of reported cases in Connecticut
between 1984 and 1991 against 212 age-matched persons without the disease, the
researchers claim to have found that even though the Lyme patients reported
increased symptoms (fatigue, arthritis, etc) years after diagnosis, the
frequencies of these reports “were similar to the frequencies of such reports
among age-matched controls without Lyme disease.”

[artur737]

Could some people who believe they are suffering the prolonged effects of Lyme
disease actually be suffering from other more common ailments? Leonard Sigal, a
researcher in the Lyme Disease Center at Robert Wood Johnson Medical School,
chalked up chronic Lyme disease symptoms to simple hysteria and media hype in a
2002 issue of Environmental Health Perspectives.

“Because of confusion over conflicting reports, anxiety related to vulnerability
to disease, and sensationalized and inaccurate lay media coverage, a new
syndrome, ‘chronic Lyme disease,’ has become established,” Sigal writes.
“Chronic Lyme disease is the most recent in a continuing series of ‘medically
unexplained symptoms’ syndromes. These syndromes… meet the need for a societally
and morally acceptable explanation for ill-defined symptoms in the absence of
objective physical and laboratory findings.”

Another research team from the Long Island Jewish Medical Center took it one
step further by claiming those who believe they suffer prolonged Lyme disease
symptoms must instead be suffering from a mental disorder. “…[T]raumatic
psychological experiences predating onset of Lyme disease symptoms may play an
important etiologic role in the chronicity of these symptoms,” they concluded.
But not all scientific researchers believe that people who claim to suffer
chronic Lyme disease have a preexisting mental disorder or have fallen victim to
media hype.

In 2002, researchers from the Department of Parasitology at Tulane University
found that the spirochete B. burgdorferi uses an immune system evasion
mechanism. After they inoculated Lyme-infected lab rats, an antibody developed
to attack the spirochetes’ OspC transcript (the outer-surface protein C gene).
In response, some of the spirochetes simply “turned off” the OspC gene and thus
became invisible to the antibodies. When those spirochetes were isolated and
injected back into healthy non-inoculated rats, the OspC genes reappeared. They
postulate that what they witnessed is “an immune evasion mechanism that
contributes to spirochetal persistence.”

In effect, antibiotics might not be curing the disease after all.

There are other evasion mechanisms, as well. In response to penicillin
researchers have documented B. burgdorferi spirochetes coiling themselves into
balls, coating themselves with an outer mucous membrane, and forming cyst-like
encasement structures that were impenetrable by the antibiotics. Once the threat
passed, the spirochetes reconverted to their spiral forms. Some have been
observed making the transformation from spirochete to cyst in as little as 15
fifteen minutes.

B. burgdorferi can also break itself apart into separate spore-like “granules”
in adverse conditions. When conditions improve for the spirochete, the granules,
like individual beads on a necklace, reattach themselves to reform the full
spirochete.

The highly esteemed medical journal, The Lancet, published a report that stated,
“…the immune evasion strategy used by B. burgdorferi is similar to strategies
used by the mycobacterial agents that cause chronic infections such as
tuberculosis or leprosy.”

In fact the Lyme spirochete is so vexing and seemingly indestructible, the U.S.
government considers it a possible bioterrorism agent.

According to the CBS News affiliate, KWTX, in Waco, Texas, the University of
Texas at San Antonio recently opened a new research lab for bioterrorism.

“There,” according to the report, “researchers will study such diseases as
anthrax, tularemia, cholera, Lyme disease, desert valley fever and other
parasitic and fungal diseases. The U.S. Centers for Disease Control and
Prevention identified these diseases as potential bioterrorism agents.”

Though the U.S. Centers for Disease Control possibly consider the Lyme
spirochete a potential bioterrorism agent, the CDC Web site states, “Most cases
of Lyme disease can be treated successfully with a few weeks of antibiotics.”

[artur737]

Questionable diagnosis and treatment

It should be clarified that a clinical diagnosis is made for the purpose of
treating an individual patient and attending doctors consider the many details
associated with that particular patient’s illness. By contrast, surveillance
case definitions are created for the purpose of standardization, not patient
care; they exist so that health officials can reasonably compare the number and
distribution of cases over space and time.

Paul Mead, an epidemiologist with the CDC, addressing the Connecticut Department
of Public Health and the Connecticut Attorney General’s Office in January 2004
warned, “no surveillance case definition is 100 percent accurate. There will
always be some patients with Lyme disease whose illness does not meet the
national surveillance case definition … Given other compelling evidence, a
physician may choose to treat a patient for Lyme disease when their condition
does not meet the case definition.”

The CDC case definition for Lyme disease also warns, “This surveillance case
definition was developed for national reporting of Lyme disease; it is not
intended to be used in clinical diagnosis.”

Many Lyme literate supporters are baffled that with one hand the CDC urges
physicians to use their own clinical judgment when diagnosing potential Lyme
cases, yet on the other it gives specific, some say “dogmatic,” directions on
how to treat it.

So far, according to the CDC, the most reliable way to isolate B. borgdorferi,
is to perform an Enzyme-Linked Immuno Sorbent Assay (ELISA), which is also often
used to isolate HIV, followed by a Western Blot test.

In May 2001, the FDA approved an updated ELISA test called C6, which uses a
synthetic hybrid molecule derived from the surface of the Lyme spirochete. A
positive C6 test appears to correlate well with acute cases of Lyme disease,
they say, and it does not appear to cross-react with a related tick-borne pathogen.

Yet in 2005, researchers from Johns Hopkins University released findings from a
2-year study which showed that the CDC’s two-tiered testing method misses up to
75 percent of Lyme cases.

The Journal of Clinical Microbiology and The Lancet have published reports
indicating that as the Lyme spirochete traffics between tick and mammalian hosts
it expresses proteins differently and changes its outer surface proteins in
order to adapt to the drastic biological differences in the two environments.
According to the reports, it also appears to express proteins differently in
living tissue than it does in lab cultures. In theory, the same strain of
spirochete cultivated in a petri dish—which is used to provide the antigen base
for the Western Blot test—may express proteins differently in the living patient
and thus may not even appear on the test though the patient is actually positive
for the disease.

As a result of such conflicting science, many who suspect they have Lyme disease
often pay out of pocket for second opinion tests at Lyme literate labs that
usually don’t or can’t take health insurance as their tests aren’t sanctioned by
the CDC and state medical boards.

In 2005, the CDC and FDA issued a warning about “commercial laboratories that
conduct testing for Lyme disease… whose accuracy and clinical usefulness have
not been adequately established.”

Indeed Lyme suffers should use caution when investigating alternative testing
and especially treatment. A new breed of snake oil salesman has emerged to prey
on sufferers of ill-defined symptoms, often misdiagnosing them with Lyme disease
and subjecting them to all manner of alternative treatment techniques.

In 2005, James Shortt, a South Carolina doctor specializing in alternative
therapy for Lyme disease (in the form of hydrogen peroxide fed intravenously)
was initially charged with homicide after the widow of a man who died of
prostate cancer filed suit following his death. According to the negligence and
reckless conduct suit that followed, Shortt misdiagnosed Michael Bate with Lyme
disease, began intravenous hydrogen peroxide therapy—a practice that has never
been approved by the FDA or any credible science—and also prescribed
testosterone, which caused Bates’ cancer to rapidly advance, resulting in his
death about six weeks later.

As the disease and its Internet exposure continues to spread, some in the
medical industry are concerned that what they consider disinformation about
chronic Lyme disease will attract scores more desperate patients to unqualified
for-profit physicians each year.

According to some research journals, the Internet has become a powerful
mechanism for organizing patients and presenting poorly documented information
to the public. The owner of one private Lyme diagnostic lab recently told
Forbes, “Patients, because of the Internet, have become my best salesmen.”

Because of the varying standards of care and conflicting science surrounding the
Lyme disease issue it remains unclear if the standard 28 days of antibiotics
actually eradicate the disease. And the effectiveness of many popular
alternative treatments is spotty at best.

[artur737]

One popular alternative treatment method is the use of high-pressure
(hyperbaric) oxygen (HBO) chambers. HBO therapy is legitimately used to treat
deep-sea divers suffering from decompression sickness (“the bends” and smoke
inhalation. According to Dr. Joseph Jemsek, a NC based Lyme literate doctor, one
scientific study of HBO therapy, conducted by William Fife, Ph.D. at Texas A&M
Hyperbaric Laboratory, indicates that Lyme bacteria are debilitated in high
oxygen environments. Despite the fact that HBO therapy has not been proven to
effectively cure Lyme symptoms in humans, patients across the U.S. continue to
pay up to $4,000 for each 90-minute session.

Another controversial alternative treatment method, outpatient intravenous
therapy, is a multi-billion dollar per year business. Many Lyme sufferers claim
to experience positive results from the treatment, though the practice still
remains largely unregulated and subject to malpractice and fraud.

During the 1990s, the CDC documented 25 cases of antibiotic-associated biliary
complications among persons with suspected Lyme disease who had undergone the
treatment. In 2000, physicians reported the death of a 30-year-old woman who
died from an infected intravenous set-up that had been left in place for more
than two years. She was being treated for a case of “chronic Lyme disease,”
which could not unsubstantiated.

Yet, malpractice charges are filed every year in a number of medical fields.

Parkman readily concedes that there are quacks out there who are hurting the
already beleaguered Lyme literate cause and giving legitimate scientists a bad
name. As president of the Lyme Disease Network of South Carolina, he believes
that the primary goal of Lyme literate support groups like his should be to warn
and educate patients and to provide accurate information and documented research
so they can make informed decisions.

“We don’t tell people what to do and we don’t diagnose,” he says.

The state of California, recognizing the apparent benefit of long term
antibiotic treatment, recently amended sections of its Health and Safety Code to
formally recognize the treatment: “Recent cogent scientific and clinical
experience reviews of Lyme disease have documented that long-term antibiotic
therapy, varied by clinical symptoms has, in general, substantially improved
patient health and that discontinuation of such therapy while clinical symptoms
remain commonly results in relapse and further disability.”

As research universities and state governments are beginning to explore
alternate approaches to the diagnosis and treatment of Lyme borreliosis, Parkman
hopes that the medical insurance industry will follow suit. So far, insurance
companies have placed their economic clout behind the less expensive, short-
term treatment protocols. Parkman believes that insurance should also cover
credible alternative treatments like long-term antibiotics if those treatments
appear to work for the patient.

“Over the long term, I believe it’s far more costly not to treat people with
Lyme disease,” Parkman says. “Because these people are sick, they’re not
inventing things. They’re not imagining things. But they’re going to the
doctors, the hospitals, the emergency rooms, they’re not working, are on
disability. It seems that it would be more cost effective from the bottom line
point of view to properly diagnose the disease and treat it.”

“These insurance companies are being very short-sighted,” he says. “In addition
to the enormous amount of human suffering, there’s an enormous economic cost as
well.”

In the meantime, the medical battle rages on. In November 2006, Connecticut
Attorney General, Richard Blumenthal filed a Civil Investigative Demand (CID) to
look into possible anti-trust violations by the IDSA during the drafting of the
treatment guidelines concerning Lyme disease. A few weeks later, Congressional
Representative Chris Smith (R-NJ) wrote a letter to the CDC questioning their
support of the IDSA guidelines and suggesting that they show support for
alternative guidelines developed by other research.

So far, the CDC has declined to do so.

[wroteknowynick]

Ciekawe też są wypowiedzi pacjentów pod tym artykułem
www.columbiacitypaper.com/2007/3/28/a-human-feast

[artur737]

Rzeczywiscie ciekawe

Pierwszy list tez tu zamieszcze by zostal na forum od kogos komu nie pomagaly
doustne antybiotyki a w koncu roczna dozylna terapia rocephinem postawila go na
nogi.

#

S Olson said,

April 3rd, 2007 at 02:42 PM

THANK YOU FOR THE LYME ARTICLE!!! I had to pay $50,000 cash for 9 months of IV
Rocephin to get my life back- thank goodness- it was worth every penny!!! I was
going into dementia at the age of 29 and my experience and that of others like
Wyatt Sextons has convinced me that a lot of Alzheimers is Lyme disease. I was
29 years old and could no longer remember the name of my two year old. But
insurance companies are running the Lyme wars- they didn't have to pay for my IV
even though I had a tick bite, rash at bite site and subsequent positive tests.
They got away with diagnosing me with Post Lyme Syndrome after paying for a
month of antibiotics- and THEN when it was clear that I was still sick my
insurance company guideline RULED doctors diagnosed me with "a multi-system
progressive neurological disease TRIGGERED by post-Lyme Syndrome". MAy THEY ROT
IN HELL WHERE THEY BELONG! Being bedbound, incontinent and going into dementia
is not a life I wanted any more at the age of 29= and in agony around the clock.
Oral antibiotics did nothing for me- I was on them a year and kept declining.
Then IV- and if I had not *known* I had Lyme I would never have believed it-
because nothing happeend for 6 whole months- and then- one day- for one minute-
this tiny part of my hand was NOT in agony- it was so strange- and then the next
day- and the next- I was betetr every day- and I stopped choking on food-
stopped getting weaker- and soon I wa able to KEEP MY BALANCE and WALK AGAIN
(although it took a full year before I could walk a full block and months before
I could falter to the mailbod up the driveway). And for the last 3 months of IV
brought me bnback to life. I have no pain today and have lived normally for the
past 6 years. I was able to go back to work full-time. THAKN GOD for longterm
antibiotics- and my angel LLMD! May the IDSA and insurance affiliates ROT IN
HELL! Sincerely, S Olson

[wroteknowynick]

Nie mogę znaleźć wątku, ktoś pytał czy można brać sterydy anaboliczne LOL w
boreliozie , pomijając fakt że są one nielegalne tutaj jest odpowiedź

#

Laurie said,

April 5th, 2007 at 11:13 AM

at age 38 my husband began suffering first with shoulder problems which soon
after led to numbness in his hands. He said he hadnt "felt" right in 2 years
prior to that. Once he began to suffle in his step we got very worried. Upon
doing someonline searching i found a support group and began talking with a
woman within driving distance to us that turned us onto her husbands dr and sure
enough, when tested it was lyme . Unfortuantly my husband , being an advide gym
goer also used steroids with in case happened to MULIPLY the lyme bacteria to
apoint that even though he had stopped and was under a drs care on antibiotcs/iv
did not make it. He fought the battle hard but in the end the bacteria had
spread too far into his nervouse system and he passed at age 40. I at the time
was also tested and took 5 months worth of antibiotics and now feel fine. Thank
God and the Dr for that. Just a note,,,if you are taking steroids for any reason
and have been DX with Lyme please please talk to you Dr about it. Hopefully one
day everyone will be as lucky as i was to recover.

[artur737]

Opis ostatnich wojen boreliozowych na poziomie parlamentu w USA. Tym razem punkt
dla boreliozowiczow.

Star Democrat
Easton, MD

Lyme bill opposed by patient advocate group dies in Md. Senate

By STEVE NERY
Staff Writer
April 12, 2007


ANNAPOLIS — After a grassroots campaign protesting proposed Lyme disease
legislation, the Maryland legislative session ended Monday night without the
approval of House Bill 836.

The bill, which would have provided nearly $500,000 over the next two years to
disseminate literature about the tick-borne disease, passed the House of
Delegates 138-0, but died in the Senate Health, Education and Environmental
Affairs Committee. Lyme disease patient advocate groups spoke out against the
bill, concerned that it would support only a set of diagnostic and treatment
guidelines which limits doctor discretion.

Groups including the Lyme Disease Association (LDA) called and wrote members of
the Senate committee. Lyme disease advocates from all across the country spoke
out against the bill, concerned about the precedent it might set, said Lucy
Barnes, director of the Lyme Disease Education and Support Groups of Maryland.

The Infectious Disease Society of America’s guidelines have been criticized by
such groups on the basis that the document doesn’t allow for discretion in
diagnosing the disease or for the course of antibiotics prescribed. The
guidelines also don’t allow for the treatment of chronic Lyme disease, which
develops in between 10 to 15 percent of all cases, according to the LDA. Chronic
Lyme disease has been a contentious issue, as some doctors say they don’t
believe it is an actual medical condition.

Advocacy groups had asked the legislature to add language that would also
educate people about the International Lyme and Associated Diseases Society’s
(ILADS) guidelines, but the House did not do so.

The groups then asked the Senate committee to kill the bill.

Because many mainstream hospitals and doctors adhere to the IDSA guidelines,
people who believe they have been misdiagnosed or believe they have the chronic
form often seek out help through patient advocate groups.

Through mid-March, more cases (324) were reported to the Centers for Disease
Control from Maryland than from any other state, according to the Lyme Disease
Foundation. Barnes said she has received a proclamation from Gov. Martin
O’Malley designating May as Lyme Disease Awareness Month. The rate of infection
is greatest during the warmer months.

While legislation aiding their cause was not passed by the Maryland General
Assembly this session, Barnes noted that all eight Maryland members of the U.S.
House of Representatives have signed onto HB 741, which would provide $100
million in research money over the next five years.

To contact Star Democrat with your comments about Steve Nery and his continuing
Lyme coverage:

[e-mail]
[e-mail]

[artur737]

Ticks present a growing concern
www.southcoasttoday.com/apps/pbcs.dll/article?AID=/20070415/NEWS/70415001
By DON CUDDY
SouthCoastToday.com
April 15, 2007 6:00 AM
Scientists and medical experts have a springtime warning for anyone who loves
the great outdoors: Beware of ticks.
Deer ticks, which transmit the potentially crippling Lyme disease, are expected
to be present in large numbers this spring, increasing the risk for anyone who
works or plays outside.
The rising deer population and a series of warmer-than-normal winters — capped
by an especially mild winter this year — are combining to create favorable
conditions for ticks, experts said.
“As the tick population grows, an increasing number of people have become
exposed over the past decade,” said Dr. Thomas Mather, a professor of entomology
at the University of Rhode Island who has been leading an intensive study of the
tick-borne diseases since 1993.
“In the last five years we have seen three of the worst years in terms of risk,
and 2006 was the second-highest since we began our study 14 years ago,” he said.
While Dr. Mather’s research has focused on Rhode Island, the figures in
Massachusetts are similar.
The incidence rate of Lyme disease in Massachusetts in 2005 was 36.4 cases per
100,000, which is almost 4½ times higher than the national rate of 7.9 cases per
100,000 according to the Department of Public Health.
And even if it’s pretty clear that the deer tick population has been rising, “we
don’t like to make predictions,” about what it will be like this year, said
Donna Rheaume, spokesperson for the DPH.
“With Lyme disease, from the public health standpoint, we really want to stress
prevention.”
With each passing year, however, scientists are learning more about the danger
posed by deer ticks.
“Tick density is closely related to a number of environmental factors,” John
Jahoda, a professor of biology at Bridgewater State told the Standard Times.
“Climate warming over the past 12 years has been a significant factor, and we
just broke the record for warm temperatures again this winter,” he said, noting
that it does not take very warm conditions for ticks to thrive. “Frost or
near-frost conditions keeps them down, but at anything above 38 degrees they
will soon come out and with deer traveling long distances it has helped to
spread the ticks. If you are an active outdoors person in Massachusetts you’re
bound to pick them up.”
With vector borne diseases such as Lyme and Eastern equine encephalitis focusing
more attention on Southeastern Massachusetts, the state has devoted more
resources to combating the danger.
“The DPH is doing spot sampling in small mammals and they also collect ticks to
measure their rate of infection,” Mr. Jahoda said.
deer are hosts
Deer serve as the reproductive hosts for ticks, which then drop off to lay their
eggs. When the larvae hatch they move into the rodent population, with
white-footed mice being the preferred hosts. Backyard bird feeders, log piles
and leaf litter attract rodents. This brings ticks into close proximity with
people, children and pets.
“Outdoor cats, of course, tend to frequent places where rodents are found and
with their thick fur they can easily bring ticks indoors,” said Dr. Mather, who
advised checking pets every time they enter the home.
“The evidence shows that 75 percent of people who contract tick-borne disease
get it from their home environment. People may think that you only get ticks out
in the deep woods, but that’s not the case.”
Deer ticks cling to plants near the ground in brushy, wooded or grassy areas and
climb onto animals and people who pass, Dr. Mather said. He suggested that
homeowners take active measures to suppress ticks around their property.
The ‘mast crop’ is also a factor in tick abundance. “Basically, that’s the
amount of acorns available to small mammals like squirrels, chipmunks and mice.
Last year caterpillars were a problem and that sapped a lot of energy from the
oaks as they replenished the leaves eaten by the caterpillars. That means fewer
acorns this year, which might limit the rodent population, which might help.”
Tick numbers are greatly affected by moisture, with higher amounts of
precipitation swelling their number.
Deprived of all moisture in a vial in his laboratory, Dr. Mather found that
ticks are near death after only eight hours.
Deer ticks, especially when young, can be nearly invisible. “Deer ticks ... when
they emerge as nymphs, they are only about the size of a poppy seed,” said David
Simser, an entomologist with the Cape Cod Cooperative Extension and coordinator
of the Deer Tick Project, a public health program to prevent the spread of
tick-borne illness. “Fully grown they are the size of a sesame seed.”
When it comes to spreading Lyme disease, however, the size of the tick does not
matter. “Half of adult ticks and about 20 percent of nymphs carry Lyme disease
and if you get bit by a nymph you may not even realize it,” he said.
The tell-tale bulls-eye rash that people are advised to look for is not a
dependable indicator of Lyme disease, he said, as not all people get it. “If you
get the rash you’re lucky,” he said.
Antibiotics are very effective against Lyme if it is detected in its early
stages. But when the disease goes untreated, the long-term effects — such as
short- and long-term memory loss, blurred vision, heart palpitations and
exhaustion — can be serious.
a growing problem
Lyme disease is now considered endemic in Massachusetts. According to the DPH
Web site, there were 2,341 confirmed cases of Lyme disease statewide in 2005,
the last year for which statistics are available. This represents a 46 percent
increase over 2004. More than half of those occurred in June, July and August.
“We know it’s out there. We get cases all year round now,” said Carol Metro,
nursing supervisor with the New Bedford Health Department. “It’s a reportable
disease, which means we get confirmations from the labs that do the blood work.”
Bristol and Plymouth counties have experienced some of the highest incidence
ratios in Massachusetts. There were 320 cases in Plymouth County in 2005, while
Bristol County reported 148 cases, up from 56 in 1998.
“Lyme disease is spreading along with the ticks,” Mr. Simser said. “They have it
on the West Coast now. The ticks are somewhat different, same genus but a
different species. “ Any place where you have a small-rodent population you will
find ticks. Same with rabbits. Humans are just an incidental host.”
With the number of confirmed cases on the rise each year, Mr. Simser sees no
letup in sight.
“There is no indication that this year will be any different,” he said.
Dr. Mather strongly recommend using repellent on clothing. Permethrin, which
kills ticks on contact, can survive several cycles in the wash.
“If everyone treated their clothes, nobody would get bit,” he said.
More information on tick-borne disease is available on Dr. Mather’s Web site:
www.tickencounter.org.

[artur737]

blogcritics.org/archives/2007/04/17/102846.php
Tlumaczenie:
forum.gazeta.pl/forum/72,2.html?f=26140&w=60935912
The State of Connecticut vs. Dr. Charles Ray Jones - A Hangin' In Hartford
Written by Rick Vassar
April 17, 2007


Lyme Disease Doctor Risks Career to Treat Chronically Ill Kids

You hand in your ticket, to go see the geek, who walks up to you, when he hears
you speak, Says ‘How does it feel to be such a freak’, you say ‘impossible’ as
he hands you a bone. And something is happening and you don’t know what it is,
do you Mister Jones… Bob Dylan – "Ballad of the Thin Man"

Dr. Charles Ray Jones is a physician in Connecticut. He treats kids. Sick kids.
Really sick kids. These kids have chronic Lyme disease. The Lyme bug,
transmitted by tick bite, is quite treatable if it’s caught and diagnosed
quickly, and can be cleared up with a relatively short course of oral antibiotics.

If the bug sets up shop in the body, though, the resulting maladies can be quite
severe. Rheumatoid arthritis, cardiovascular problems, migraines, and
diminishing cognitive ability are just a few of this disease’s debilitating
results. The problem with Lyme disease is that these symptoms have varying forms
of severity, and this makes it hard to diagnose and difficult to treat.

The good news – Lyme disease will rarely kill you. The bad news – treating a
Lyme patient can go on for years, and can be very expensive.

In my experience, there are two things health insurers really hate:

1. Diseases that go on indefinitely
2. Diseases that are expensive to treat

Since Lyme disease fits into both categories, it’s not surprising that health
insurers are reluctant to pay for ongoing treatment. It just doesn’t fit their
vision of the bottom line. This is where it gets interesting.

The Case of Dr. Charles Ray Jones

Dr. Jones has been advocating aggressive treatment of chronic Lyme disease for
years. He has treated thousands of kids with great success. One day, he receives
a call from a parent who ostensibly wants antibiotics for their child due to the
effects of Lyme. Dr. Jones allegedly prescribes antibiotics over the phone.
Well, it turns out that the child was central to a custody battle, and it
appears Dr. Jones got caught up in this. A complaint was made to the medical
board, and Dr. Jones has spent the past few years defending himself.

Late last year, the Infectious Disease Society of America (IDSA), stated in no
uncertain terms that long term chronic Lyme does not exist, meaning that in
their opinion, Dr. Jones is practicing voodoo medicine and he must be stopped at
all costs.

Dr. Jones is 77 years old. He really doesn’t need this. He could just walk away.
In fact, the State of Connecticut told him just that: retire, give up your
license, and we will drop the charges. Dr. Jones has decided to fight, for the
kids, incurring the wrath of his licensing state and the loss of his reputation.
He goes back before the board this Thursday, April 19, 2007.

[artur737]

The Infectious Disease Society of American (IDSA)

The State of Connecticut intends to call Dr. Eugene Shapiro of the Yale
University School of Medicine. Dr. Shapiro helped shape the research that led
the IDSA to say unequivocally that chronic Lyme disease does not exist.

They say the science is good. They say their guidelines are voluntary. They also
state that members of the panel who wrote the guidelines have ties to Lyme
product producers who will benefit from the findings. Some even have ties to
Baxter vaccines, a pharmaceutical company developing a Lyme vaccine. It seems a
Lyme vaccine is more valuable to the manufacturer when the effects of the
disease are short term and can be cured in a majority of patients.

Connecticut Attorney General Richard Blumenthal thinks the IDSA’s science is
good. He also believes that the science is incomplete, and that the IDSA may
have held back the science that did not enhance its conclusion. If so,
Blumenthal contends, the IDSA may have violated state antitrust laws.

The reason?

Although the guidelines are voluntary, health insurers are using the IDSA’s
findings in their evidence of insurance to deny an ailment categorized as
chronic Lyme disease. If the IDSA held back information that challenges their
findings, patients in Connecticut have limited access to covered treatments, and
that could be an antitrust violation.

The Big Picture

So then there’s Dr. Jones. He tells the IDSA they are wrong. He continues to
treat patients with chronic Lyme disease. Nobody really cares all that much,
except his patients, who see him as their last hope. Then these patients submit
their bills to their insurance company. Sorry, they’re told, it’s not covered. Why?

Well, it’s not a disease.

So the patient sues. And the insurers gets ticked (no pun intended), and very
conveniently, someone comes forward with a complaint, and the licensing
authority comes in with its full force of law. Why do you think most doctors
won’t treat chronic Lyme disease?

They’re afraid. They’re afraid of losing everything, like Dr. Jones.

And if you think this is an isolated incident, think again. Dr. Zackrison in
Virginia, Dr. Jemsek in North Carolina, among others, have been intimidated and
threatened in incidents similar to Dr. Jones. An innocuous complaint turns into
a career threatening event. Many more doctors turn away patients at the door
because they can’t afford the risk.

The IDSA says that they are concerned that a long course of antibiotics may be
counterproductive to the healing process. They believe their findings are
protecting the patient from needless long-term therapy. They do this by telling
folks that the illness doesn’t exist long term and recovery from the short term
effects of Lyme disease can be cleared up with a mild and short course of
antibiotics.

I have two questions for the IDSA:

1. If Lyme disease is so easy to clear up, why in the world would we need a vaccine?
2. If chronic Lyme disease does not exist, what the heck do all these people
have? They’re pretty good at telling us what it isn’t. I’m guessing if you
diagnose another cause, the health insurers would be obligated to pay for
treatment for a seriously ill patient who won’t die. And that’s not good.

There is a coordinated effort to control the outflow of funds from the insurers,
using the medical community to fight for the greater good of the bottom line.
Dr. Jones is merely collateral damage. It’s good business. It’s bad medicine.

And don’t believe for a minute that this strategy is reserved for this one
chronic illness. Your illness may be next. In fact, if I had to make a
prediction as to a disease that is being primed for this, the answer to me is
obvious: autism.

Email this • Subscribe to this feed
Rick Vassar CPCU, ARM, AIS, ARM-P writes primarily on the insurance industry.
His book Hide! Here Comes the Insurance Guy uses humor to explain insurance
strategies in language everyone can understand

[artur737]

Artykul sugerujacy, ze wiele chorob psychicznych ma zrodlo w infekcji.
(borelioza nie jest wymieniona choc powinna)

psychologytoday.com/articles/index.php?term=pto-19990701-000031&page=1
Psychology Today
The Infection Connection
Examines the possible connection of microorganism with psychological problems.
Cause of poor parenting; Technology that helps in revealing damage to the brain.
By:Harriet Washington
PSYCHOLOGY HAS LONG HELD THAT MENTAL ILLNESS IS BORN OF ADVERSE EXPERIENCES.MORE
RECENTLY, RESEARCH HAS POINTED THE FINGER AT FLAWED GENES. NOW A THIRD CULPRIT
MAY BE EMERGING: INVASION BY BACTERIA AND VIRUSES.
Eight-year-old Seth broke from the grasp of Jane, his harried mother, for the
third time in 10 minutes. Tearing across the emergency room, he stopped short,
transfixed by a piece of paper lying on the floor. His red-rimmed eyes seemed to
bulge from their sockets and his mouth twitched violently, as if he were in
pain. Indifferent to Jane's pleas to stop, he proceeded to pick up from the
floor every piece of paper, no matter how filthy, with hands that were reddened
and raw. It was the state of his hands that had precipitated the trip to the
hospital: Seth had spent most of the night in the bathroom, washing them over
and over.
With his head jerking spasmodically and his fingers pecking at pieces of paper
and cigarette butts, the boy resembled some strange overgrown bird. Then,
suddenly terrified, he flew back to Jane and began pulling on her arm. "Mommy,
Mommy, let's leave!" he whimpered. "They're going to kill us. They're coming!"
Jane tried her best to calm him, but she too was beginning to panic. Two days
before, Seth had been a perfectly normal little boy whose most serious health
problems were the occasional cold or sore throat. He had become mentally ill
overnight.
What caused Seth's anxiety, his tics, his obsessive-compulsive behavior?
Astonishingly, it was probably that minor sore throat, his doctors concluded.
Today, scientists are increasingly coming to recognize that the bacteria and
viruses that frequently invade our bodies and cause sore throats and other minor
ailments may also unleash a host of major mental and emotional illnesses,
including anorexia, schizophrenia and obsessive-compulsive disorder.
It is a theory sharply at odds with earlier views of the genesis of
psychological illness. Followers of Freud long held that mental and emotional
trouble is primarily the result of poor parenting, especially by mothers.
Indeed, until about 30 years ago, psychoanalysts frequently placed the blame for
schizophrenia on "schizophrenogenic" mothers. Obsessive-compulsive disorder,
also, was put at Mom's door. "It was thought to be the result of harsh toilet
training," observes Susan Swedo, M.D., chief of pediatrics and developmental
neuropsychiatry at the National Institutes of Mental Health. But such theories,
which added immeasurable guilt to the burdens of parents with mentally ill
offspring, have turned out to have little evidence to back them up, most experts
now agree.
Instead, in recent years, the focus has shifted to genes as the main source of
mental illness. Faulty DNA is thought to be at least partly responsible for,
among other problems, anxiety and panic disorders, schizophrenia, manic
depression and antisocial personality disorder, which is characterized by
impulsive, excessively emotional and erratic patterns of interpersonal behavior.

[artur737]

Yet genetics doesn't appear to wholly account for the occurrence of major
psychiatric ailments. If heredity alone were to blame, identical twins would
develop schizophrenia with a high degree of concordance, but in fact in only 40%
of cases in which one identical twin has the disease does the other twin have it
as well. Autism, though it has been observed to run in families, also strikes
five of every 10,000 children apparently arbitrarily. Nor can depression and
other affective disorders be completely explained by damaged DNA. Says Ian
Lipkin, Ph.D., a neuroscientist and microbiologist at the University of
California at Irvine: "Genetics doesn't hold the key to understanding how to fit
these square pegs into round holes."
Bacteria and viruses may be that key, but scientists have been slow to grasp the
idea. Consider the case of syphilis, which is caused by the bacterium Treponema
pallidum. In its final, or tertiary, stage, the disease can precipitate
psychiatric problems like dementia, mania, depression, delusions and Tourette's
like tics. Though some scientists suspected a connection between infection with
the bacterium and the mental disturbances that may take three to five decades to
emerge, the link became widely accepted only in the 1940s after the introduction
of the antibiotic penicillin as a treatment for syphilis. In the interim,
patients with syphilis who later developed psychiatric problems were often
institutionalized as crazy. But even with the link established, Freud's theories
were in ascendance and few scientists were willing to consider that microbes
might be a common source of other mental illness.
Now, decades later, infection has emerged as a prime suspect in psychological
illnesses. The inadequacy of genetic and experiential explanations has prompted
scientists to look elsewhere--and their gaze has come to rest on physical
ailments, such as heart disease, cancers and ulcers, that in some cases have an
infectious origin. Could the same be true, they wonder, for mental and emotional
ills?
Improved technology has made it easier to find out. Since active only when
inside other living creatures, microbes are notoriously hard to grow, and
therefore study, in the lab, but scientists' ability to do so has increased
steadily over the last few decades. Other tools have allowed researchers to see
their quarry more clearly. For about a decade, microbiologists have used a
technique called polymerase chain reaction, or PCR, to replicate a small piece
of genetic material over and over until it forms a quantity large enough to
study--and large enough to show the lingering traces of an infection. A new
variant of PCR, called representational difference analysis, introduced in 1994,
allows scientists to go one step further and compare the differences between two
separate pieces of DNA (including healthy and diseased segments, for instance).
And the refinement of electron microscopes has permitted researchers to follow
the "footprints" left by infection in patients' cerebrospinal fluid.
The introduction of CAT scans in the early 1970s has been another leap forward.
Before then, only an X-ray--or an autopsy--could reveal damage to the brain, and
then only in its grossest form. CAT scans show subtle changes that can be
tracked over time, giving researchers a more accurate sense of a microbe's
impact. MRI, developed in the early 1980s, has added three-dimensionality to
pictures of the brain, and PET scans, invented soon after, have added motion.
Now bacteria and viruses can be caught red-handed.
Still, teasing out the tie between microbes and psychological problems has
proved a difficult task, in no small part because of the cunning and guile of
the pathogens themselves, which have many ways of attacking our bodies and brains.
T. pallidum, syphilis' causative bacterium, proceeds in straightforward fashion:
it attacks and kills brain cells. After entering the body--usually through
sexual intercourse, or through the mother's placenta into her fetus--the
bacterium travels along the lymph system until it arrives at the brain. Once it
lodges there, it spares few structures, inflaming some neurons and stripping the
myelin, or insulation, from others. (Without myelin, nerve impulses are slowed
or stopped altogether.)
Other microbes are more devious. The human immunodeficiency virus, for example,
which can cause anxiety, delirium, psychosis and suicidal impulses, uses a
Trojan horse strategy. Instead of directly attacking brain cells, it infects
macrophages, the immune-system enforcers that roam the bloodstream, engulfing
foreign cells that may pose a threat to the body. After hitching a macrophage
ride into the brain, HIV cranks out cytokines, protein peptides that kill off
neurons. The virus Chlamydia pneumoniae may use a similar trick--slipping into
the brain and manufacturing cytokines--to cause Alzheimer's disease.

[artur737]

Streptococcal bacteria, like those that cause strep throat, take yet a different
tack. As they invade the body, they automatically trip the body's defense alarm,
calling up the immune system's antibody soldiers. But once the skirmish begins,
the bacteria camouflage themselves within that very immune system. Like a wolf
in sheep's clothing, they disguise themselves through molecular mimicry,
cloaking themselves in proteins that imitate the body's own proteins, and
thereby elude attack. For reasons scientists don't yet understand, the
antibodies of some people--perhaps those with a genetic predisposition--then
turn on their bodies' own tissues, assailing neurons the basal ganglia. These
structures, located between the more primitive lower brain and the higher
cortical centers, help interpret information from the senses and are key to
healthy emotions and behavior.
The self-destruction instigated by streptococcal bacteria can be particularly
dangerous to young children. Because their immune systems are "naive," or
underdeveloped, "their bodies mount a vigorous response to streptococci, but it
is not terribly effective, and their antibodies wind up injuring their own
neurons instead of the bacteria," explains Swedo. She believes that such
self-induced damage leads some children to develop obsessive-compulsive disorder.
In an experiment conducted earlier this year, Swedo replaced the blood plasma of
28 children who suffered from OCD (and who had elevated levels of streptococcus
antibodies) with healthy donor plasma, reasoning that such a switch would remove
the trouble-making antibodies. Within a month, the incidence of ties declined by
half, and their other OCD symptoms were reduced by 60%. "That was really
gratifying," says Swedo. "It means that OCD is a medical illness, and if you
catch it before there is scarring in the brain, you can cure it."
OCD isn't the only mental illness associated with streptococcus. Though anorexia
nervosa has been tied to a distorted body image, societal pressure to be thin,
discomfort with developing sexuality, and other emotional and cultural factors,
doctors have also noted that the eating disorder sometimes appears or worsens
after a case of strep throat. Streptococcus has been implicated as well in
Tourette's syndrome and in Sydenhams chorea, which makes the arms and legs of
those afflicted jerk in a manner often likened to dancing.
Researchers think that the seeds of yet other mental illnesses may be planted
while a fetus is still in the womb, when the pregnant mother-to-be becomes
infected. Flu epidemics have been followed a generation later by waves of
schizophrenia in England, Wales, Denmark, Finland and other countries, and a
recent study published in the New England Journal of Medicine reports higher
rates of schizophrenia among children born in crowded areas in cold
weather--conditions hospitable to respiratory ailments.
Scientists suspect that in such cases a virus, such as the one that causes
influenza or a newer candidate, the Borna virus, may insinuate itself into the
fetal brain at a crucial stage of development. The microbe then subtly deranges
the brain's neural connections in a process that becomes apparent only as the
brain reaches full maturity, in early adulthood. In people with schizophrenia,
parts of the brain--the cortex, thalamus, limbic system and basal
ganglia--shrink, while crevices and fluid-filled spaces enlarge by as much as
half, and the brain's chemical balance shifts. Such changes might well be the
terrible legacy of a prenatal virus.
Microbes that cause mental illness can also enter the body another way--on one's
fork. In the mid-1990s, an outbreak of Creutzfeldt-Jakob disease struck fear
into meat-eaters, especially in England, where 35 people died after eating
infected beef. While alive, the victims of what was dubbed "mad cow disease"
exhibited bizarre symptoms such as continual screaming, inappropriate laughter,
failure to bathe and compulsive walking.

[artur737]

Scientists theorized that the "mad cows" became infected because they were fed
on sheep afflicted with the disease known as scrapie, but a similar infection
endemic to cows may be to blame. (Scrapie in sheep, bovine spongiform
encephalitis in cows and Creutzfeldt-Jakob disease in humans are all believed to
be caused by what's known as a prion, or infectious protein, which acts in a
manner similar to a virus.) Contaminated human growth hormone, corneal
transplants and surgical instruments have also been suspected of communicating
the disease to humans. Earlier this year, the British medical journal The Lancet
reported that multiple surgeries and living on a farm are risk factors for CJD.
Though the disease is considered rare, Yale neuropathologist Laura Manueldis,
M.D., who thinks that the causative agent is actually a small virus rather than
a prion, suspects that CJD is more common than we believe, and is often
misdiagnosed as Alzheimer's.
Why doesn't every child with a strep throat develop an anxiety disorder? Or
dementia strike every adult with syphilis? Our bodies protect us from most
invasions by unfriendly microbes, but the vulnerable-those with poor health,
weakened immune systems or, perhaps, genetic susceptibility--are less equipped
to fend off the viruses and bacteria that may eventually cause mental illness.
Continuing research is likely to bring more effective vaccines and antibiotics,
but prevention and treatment will have to be every bit as shrewd as the
infectious agents themselves, which spread and reproduce in seemingly countless
ways. More worrisome is the fact that illness-causing organisms may be
outwitting our antimicrobial strategies. With the development of antibiotics and
antivirals, researchers had hoped to vanquish viruses and bacteria once and for
all. But they underestimated the wily ingenuity of these microbes, which soon
produced strains resistant to the new miracle medicines.
Likewise, scientists at one time believed that infectious agents evolved to
become less potent, if only to ensure their own survival: the longer an infected
host stays alive, after all, the greater the number of people who can be exposed
to the pathogen, and the more likely the microbe is to reproduce itself. But
recent research has turned up a less reassuring reality: under some conditions,
microbes can flourish with increased virulence in crowded modern cities. These
densely populated areas can maintain dangerous pathogens that otherwise might
whip through a community and then have nowhere else to go.
To fight these pathogens successfully, doctors will have to tailor the
treatments to the specific disease. Sometimes, for example, they may want to
relieve an infected patient's fever and inflammation; at other times, fever must
be left alone to kill off heat-sensitive viruses. Syphilis can be cured with
penicillin, and doctors have had some success in prescribing antibiotics to
people with anorexia. Other illnesses require more involved treatment, such as
Swedo's plasma replacement for children with OCD, and some ailments cannot be
helped much at all. The only way to treat HIV dementia, for example, is to try
to slow the replication of the virus itself. No current therapy does this
permanently, and many HIV-positive patients still suffer psychiatric symptoms.
(In fact, suicide is a leading cause of death among the HIV-infected.) There's
no treatment for Creutzfeldt-Jakob disease beyond palliative care, and by the
time influenza-induced schizophrenia becomes apparent, the neurological damage
is already done.
Still, science continues to offer hope that one day such infectious agents will
be controlled or even eliminated. That day can't come too soon for Swedo, a
pediatrician by training. "When I practiced medicine at Memorial Hospital in
Chicago, I saw parents suffer horribly when they lost their children to
leukemia," she says. "When I came to the NIMH, I began to see parents lose their
children to OCD and schizophrenia. These parents' grief is so much more
profound. The fact that their children's illnesses are socially unacceptable
makes their pain almost unbearable." Now that we know many psychiatric ills
begin with a microbe, rather than a suffocating mother or remote father, "we can
start treating mentally ill people without the shame and blame. We can treat
them medically."

[artur737]

WHAT YOU CAN DO
Since we know so little about the viruses and bacteria that cause some types of
mental illness, it makes sense to avoid them when you can. Here, advice on
preventing infection from leading scientists (much of which sounds uncannily
like Mom's):
o Eat a healthy diet.
o Get plenty of sleep.
o Reduce stress.
o Get a flu shot each fall.
o Be aware that sex with multiple partners raises your risk of infection.
o Wash your hands frequently. (Though you might be tempted to use one of the
many antibacterial soaps on the market, such cleansers may promote the growth of
drug-resistant "superbugs.")
o Don't eat meat that isn't well-cooked, or if you have any questions about how
it was stored or prepared.
o Find out whether you have any physical conditions that increase your risk of
infection, and discuss preventive steps with your doctor. If, for example, you
have a prolapsed mitral valve (a valve in the heart that doesn't close properly,
increasing risk of infection), your doctor may recommend that you take
antibiotics before having dental work done.
o Pay attention to your body. Even minor symptoms--fever, chills, a sore
neck--can mean you're doing battle with an infection, and you should discuss
them with your doctor. Pay special attention to your children's symptoms.
o If you are prescribed antibiotics, finish the entire course of therapy.
o If you work in a medical setting--even as a technician or clerk--be sure to
seek vaccinations against hepatitis and other pathogens you may acquire from
patients.
o If you're pregnant, take special care to avoid respiratory ailments such as
influenza. Avoid contact with cat litter, which can harbor Toxoplasma, a microbe
that can cause birth defects or even spontaneous abortion.