hacked by p@3t_b@y for turks

February 24, 2009 09:04 PM Eastern Time  

Under Our Skin Documentary Reveals Impact of Lyme Disease on Patients and Physicians

CHARLOTTE, N.C.–(BUSINESS WIRE)–An ongoing battle over the diagnosis and treatment of Lyme disease, a tick-borne illness, is pitting doctors against doctors, prompting health insurance companies to deny medical claims at an alarming rate, and leaving suffering patients stuck in the middle.

Transmitted through the bite of a tick, the number of Lyme disease cases in the United States has doubled since 1991—with at least 27,000 new cases reported each year. But because of inaccurate tests and under-reporting the actual numbers may be up to 12 times higher, according to the CDC, making Lyme disease an epidemic larger than AIDS, West Nile Virus and Avian Flu combined.

Tens of thousands of people suffer from what they say are the debilitating effects of chronic Lyme disease, which can lead to lifelong disabilities or even death. Yet many doctors deny that such a disease even exists, and doctors willing to treat it using long-term antibiotic therapy have faced losing their medical licenses.

The award-winning documentary Under Our Skin takes an unflinching look at the controversy surrounding Lyme disease and its impact on the national healthcare system, with billions of dollars of insurance claims, doctors’ medical licenses and patients’ lives hanging in the balance.

The implications are staggering. Irwin Vanderhoof, PhD professor at the New York University Stern School of Business, in 1993 estimated that Lyme disease cost society nearly $1billion per year. That estimate has since skyrocketed to about $2billion per year, including diagnosis, treatment, and lost wages, according to Contingencies, an actuarial trade publication for the insurance industry.

“Given the CDC’s admitted underreporting bias, the ultimate cost to society may prove to be even more alarming,” said Dr. Joseph Jemsek, a Charlotte-area physician featured in Under Our Skin. “The cost in lives unfulfilled by an illness that today’s medical profession refuses to acknowledge is incalculable.”

In a landmark prosecution announced last year, Connecticut Attorney General Richard Blumenthal brought charges against the Infectious Diseases Society of America (IDSA) for abuse of Lyme disease treatment guidelines and conflicts of interest for guideline committee members. In response, the IDSA agreed to restructure its committee and revise its controversial Lyme Disease Guidelines. Meanwhile, as shown in Under Our Skin, patients continue to suffer through misdiagnosis while seeking treatment for a disease they’re often told is just in their heads.

“The most important documentary to come out this year.”—Molly Bedham, XM Radio

“Well-researched, suspenseful, artfully shot.”—Alissa Simon, Variety.

Under Our Skin makes its southeastern US theatrical premiere as part of the Into the Light Gala on March 20 at Ballantyne Village Theatre in Charlotte, N.C. The Gala aims to raise Lyme disease awareness.

http://www.businesswire.com/portal/site/google/?ndmViewId=news_view&newsId=20090224006600&newsLang=en

By Simon Lobdell
Posted Tuesday, February 24, 2009

Pittsboro, NC - I had Lyme’s disease recently and found it to be one of the most pernicious and difficult experiences of my life.

At first it was a flu, then it was a slow degradation of my energy level and I just thought I was getting slow, old a little over done. Next I felt sleepy all the time and there was a fog around my mind, almost like you had just woken up all the time, then the shakes and finally after all this time, I knew something was wrong.

I found a little bite mark, so small I had just ignored it and it must have been there for months. But there is was a little teensy bullseye. My first doctor said it was a bruise but ran the tests. I had a case that tested positive for every marker of Lyme disease there is and the doctor said three weeks of doxy would be fine and that al the neurological symptoms were just made up.

Lesson is, three weeks later I hadn’t even begun to improve. After six months of medication, I can run again, I can enjoy life and think clearly, my hands have stopped shaking and I have hope that I have this licked. Unfortunately though, I am never sure.

Lyme and many of the tick borne illnesses that thrive like a plague in Chatham county are incredibly pernicious and resist long term cures. I recommend seeing the doctors at the Carolina Centers for Integrative medicine in Raleigh. They are recommended by the International Lyme Disease Association and they have a deep understanding of Lyme’s and its myriad symptoms.

Please don’t take this plague lightly if you are feeling sick, it gets worse and worse until it becomes a quiet disability. I am sure there are hundreds of people on this list serve who have had similar experiences, I just hope you have also found a cure.

I would also like to start a discussion about the massive overpopulation of deer in this county and the ecological imbalance that this represents. I think we should really think about cutting the deer population in this county by as much as we possibly can. They are part of the life cycle of the ticks which are dominating our beautiful county.
http://www.chathamjournal.com/weekly/opinion/chatlist/tick-borne-diseases-are-no-laughing-matter-90224.shtml

February 24, 2009
They are borne by ticks and can cause acute and chronic symptoms in joints, muscles and the nervous system – the bacteria that cause Lyme borreliosis, which 80,000 people in Germany contract every year. Heidelberg researchers have now succeeded in identifying their structure more accurately.

Using a cryo-tomography microscope, the previously unknown detailed structure of the spirochete bacteria can be shown in three dimensions. One finding – that borrelia types in North America more often affect the joints and in Europe the skin and nervous system as well – seems to stem from the characteristics of their motility system.

The research group headed by Professor Reinhard Wallich, Institute of Immunology, and Dr. Friedrich Frischknecht, Department of Parasitology at the Hygiene Institute of Heidelberg University Hospital has published its findings in cooperation with colleagues from Munich and Freiburg in Molecular Microbiology. Among other things, the researchers hope to gain new insights into the various clinical symptoms of the disease.

Shock freezing maintains original condition / Resolution up to 5 nanometers

In cryo-electron tomography the organism is shock frozen so that its original condition is retained. Chemical pretreatment, which is often associated with modifying structures and properties, is no longer necessary. Resolution of five to seven nm allows tiniest structures to be viewed. “The new technology is a quantum leap for research, comparable with the step from simple x-ray images to three-dimensional computer tomography in clinical diagnostics,” stated Dr. Frischknecht.

The bacteria have developed many strategies to avoid the immune response of humans. Borrelias, like the syphilis pathogens, are spirochetes bacteria. The spiral-shaped, actively motile bacteria have flexible, pliable bodies that are moved with the aid of complex organs, flagella. A correlation between the motility and infectiousness of the pathogen has long been presumed.

The Heidelberg researchers have now for the first time compared the characteristics of the three human pathogenic species that cause Lyme borreliosis that occur in Europe and cause varying symptoms. While in North America, the major symptom is joint inflammation, in Europe, the skin or nervous system may also be affected. With the aid of cryo-tomographic microscopy, they have successfully shown that the three pathogen types have varying numbers of flagella. In addition, structures were identified for the first time that could play an important role in the reproduction of the bacteria.

SOURCE: University Hospital Heidelberg

http://www.bioresearchonline.com/article.mvc/Structure-Of-Bacteria-That-Causes-Lyme-0001?VNETCOOKIE=NO

Feb 22 2009 by Coreena Ford, Sunday Sun

A WOMAN has slammed NHS medics, claiming they refused to treat her for a rare, life-threatening illness

Ellie Marshall, 48, suffers from Lyme disease, a tick-borne illness that can cause paralysis, blindness and, in extreme cases, even death.

Yet the mum-of-two claims doctors are denying she has the killer infection and have instead prescribed her anti-depressants.

She also said they have performed a hysterectomy in a bid to cure her catalogue of unexplained symptoms.

She said: “They are claiming that Lyme disease is such a rare thing that it’s impossible for me to have it.

It was only when Ellie saw a discussion on Lyme disease on the ITV show This Morning that she realised her symptoms matched up.

And, at the beginning of last year, she was diagnosed by a private specialist who ran a blood test and discovered she had the disease.

But Ellie is furious with NHS GPs, who she says are still denying she has the illness.

Out of desperation, Ellie went to see private specialist Dr Terence Daymond at the Nuffield Hospital, in Jesmond, Newcastle.

He recommended a Hickman line — an intravenous catheter that is inserted into the chest — which she wore for 12 weeks.

Following the treatment — which Ellie claims her own doctors refused to take part in, claiming it was unnecessary and dangerous — she was forced to fork out £900 for a three-month course of antibiotics.

She said: “My specialist gave me the prescription but the pharmacy wanted £900 for it.

“I asked my doctors to write one out on the NHS but they wouldn’t, even though the drugs are available.

“I just want some closure now. I’m so angry about what I have been through. My whole family have all suffered from this. It’s just so frustrating.”

Ellie, who first started having symptoms, including excruciating chest pains, dizziness and severe headaches, in 2002, is desperately trying to raise awareness of the illness.

She said: “When the chest pains started, they were so bad I thought I was having a heart attack. I felt like I was in a bubble and couldn’t breath.

“I couldn’t plan to do anything with my children because it would depend on how I was feeling each day. But there are hundreds of other people just like me out there with this disease that all need help and recognition.”

A spokeswoman for the Health Protection Agency said she could not comment on Ellie’s case. She said:

For more information on Lyme disease visit http://health.groups.yahoo.com/group/ EuroLyme

http://www.sundaysun.co.uk/news/north-east-news/2009/02/22/mum-s-fury-at-docs-lyme-disease-denial-79310-22979791/

MARIANNE ENGLISH
Issue date: 2/19/09 Section: News

If a bird in the hand is worth two in the bush - then what is the worth of a bird with a blood-sucking tick on its head?

Apparently, it’s worth a lot to scientists like University entomology professor Nancy Hinkle.

Hinkle, along with entomology professor Gary Mullen of Auburn University, studies ticks that produce paralyzing effects in birds.

These bird ticks - arachnids belonging to the species Ixodes brunneus - are extremely difficult to find alive in nature and affect a wide range of Southeastern bird species.

Because of the ticks’ elusiveness, Hinkle and Mullen have called upon the Georgia community to report and even collect the ticks and birds for research purposes. Even more bizarre, Mullen said data from the last 15 years supports that cases of paralyzing bird ticks have only appeared during the winter months of every third year.

Winter 2009 marks the reemergence of the tick species last seen in 2006 in Georgia.

“It’s a very unusual situation because we only get to study the ticks one-third of the time,” Hinkle said in humorous reference to the triennial trend.

This winter, a few birds have been found paralyzed by ticks in Colquitt and Spalding counties, she said. Mullen was notified of Alabama’s first two cases this year Tuesday.

If a bird tick case is encountered, she said to use gloves, wrap the bird in a towel, pick off the ticks and carefully place them in a container with a damp paper towel.

It may be hard to imagine picking engorged ticks off of birds, but Hinkle said it could save birds’ lives and provide invaluable information to researchers.

“At this point, anything we discover is something useful and new,” she said in a telephone interview Monday. “We know so little about the ticks’ behavior, biology and ecology.”

Birdwatchers often mistake the tick for tumors on birds’ necks and heads, Hinkle said.

Though the majority of reported cases occur around bird feeders, sightings are still rare because birds - like most animals - seclude themselves when they feel ill, she said.

Birds who spend most of their time feeding on insects, seeds or plant material near the ground are more likely to attract bird ticks.

Mullen said an unknown substance in the saliva of female ticks is responsible for paralyzing the birds. The substance interrupts nerve impulse transmissions, resulting in flaccid paralysis, or extreme relaxation of muscles. In addition, Mullen said that not all females of Ixodes brunneus produce the paralyzing saliva.

Paralysis first affects the feet and legs of the bird’s body, then the upper body and wings, rendering the bird immobile. The paralyzing agent also affects the muscles surrounding the bird’s air sacs, causing death from respiratory failure.

Fortunately, there is still hope for birds with ticks.

“Remove the tick and the bird usually recovers and flies away within 15 minutes,” Mullen said in a telephone interview Monday. Since this speedy recovery rate is unusual, biomedical researchers are interested to pinpoint the composition of the paralyzing substance in order to develop safer anesthetic practices, he said.

Much is still unknown about this mysterious phenomenon that emerges every three years in the Southeast, Mullen said.

“Anyone who is feeding or loves birds should be aware of what’s happening,” he said. “It’s important for people to appreciate or understand what they are seeing in their own back yards.”

Mail It
With the tick or bird, attach a note providing where the bird was found, the species of bird, whether bird is juvenile or adult, and phone number.
Mail to: Dr. N.C. Hinkle Department of Entomology 413 Biological Sciences Building Athens, GA 30602

http://media.www.redandblack.com/media/storage/paper871/news/2009/02/19/News/Research.Looks.At.Elusive.Ticks.Paralyzed.Birds-3637044.shtml

Archive Number 20090201.0450
Published Date 01-FEB-2009
Subject PRO/AH/EDR> Tick-borne encephalitis - Austria

TICK-BORNE ENCEPHALITIS - AUSTRIA
********************************************

Experts of the International Scientific Working Group on Tick-Borne Encephalitis (ISW-TBE) have been warning of the dangers of tick-borne encephalitis (TBE). Now, hikers are among those in danger, because tick [numbers] have been climbing higher.

The year 2008 marked the 1st time that ticks infected with the TBE virus were detected at more than 1500 meters above sea level, one of the consequences of global warming. The ISW-TBE has been calling for vaccination against TBE to become a standard preventive measure for everybody traveling to endemic regions.

For travelers, failing to undergo preventive vaccination may have far-reaching consequences. TBE, a viral disease transmitted by ticks, affects the central nervous system. Its diverse forms of expression range from minor neurological dysfunction to impaired concentration,depression, severe paralysis, or even death.

“Since 1990, more than 157 500 cases of TBE have been registered in Europe, corresponding to 8755 cases annually. Its climatic conditions make Austria a high-risk country for TBE. Because vaccination coverage in Austria is exceptionally high, the number of TBE cases has come down from 677 in 1979 to 86 in 2008,” explains Professor Jochen Suss, Friedrich-Loffler-Institute, Jena. “At a European level,” says Professor Pier Luigi Lopalco from the European Centre for Disease Prevention and Control (ECDC), “TBE is not yet a notifiable disease. However, we have been working to raise awareness of the dangers of TBE to motivate people to get vaccinated.” Once infected, there is no [specific] treatment available.

Further information can be obtained at:
<http://www.ISW-TBE.info>,
<http://www.TBE-prevention.info>, and
<http://www.tick-victims.info>.

[Byline: Michael Leitner, Public Health PR-Projektgesellschaft mbH
<michael.leitner@publichealth.at>]

Date: Thu 29 Jan 2009
Source: PR Newswire on behalf of ISW-TBE (International Scientific
Working Group on Tick-Borne Encephalitis) [edited]
<http://www.prnewswire.co.uk/cgi/news/release?id=247573>

A ProMED-mail post
<http://www.promedmail.org>
ProMED-mail is a program of the
International Society for Infectious Diseases
<http://www.isid.org>

February 17, 2009

“The Lyme community really rallied behind this Bill. We were overwhelmed by the support and intense passion so many residents brought to the discussion.” – CT Rep. Kim Fawcett

Representative Kim Fawcett (D-Fairfield, Westport) has introduced a bill in the Connecticut General Assembly (House Bill 5625, An Act Concerning the Use of Long-Term Antibiotics for the Treatment of Lyme Disease) that will extend protections to doctors needed to allow them to freely diagnose and treat patients with Lyme disease.

The bill will allow doctors treating Lyme disease patients to diagnose the disease clinically and consider all treatment options, including long-term antibiotic therapy.

“After experiencing first hand last summer, through my husband’s illness, the devastating health consequences and frustrations related to seeking treatment for Lyme Disease, I started reaching out to activists and fellow legislators to determine what the state could do to help,” Rep. Fawcett said.

“Patients and their families often suffer unnecessarily because treatment options are controversial and doctor’s opinions are diverse. This Bill aims to establish rights and protections to all doctors who diagnose and treat patients with Lyme Disease.”

Representative Fawcett’s efforts to build momentum for the proposal have already earned the bill 12 co-introducers from around the region.

All of Fairfield’s legislative delegation is supporting the legislation, including Republican Minority Leader Sen. John McKinney (R-Easton, Fairfield, Newtown and Weston) and Rep. Tom Drew (D-Fairfield). Other legislators supporting the legislation include Rep. Chris Lyddy, Rep. Peggy Reeves and Rep. Tony Hwang and representatives from Danbury, Westport, Norwalk, Ridgefield, and Stamford.

“At a time when the legislature faces tough financial deficits and cuts in spending statewide, legislators can still support legislation that does not cost the state tax payers but improves quality of life. The Lyme Bill is a proactive way to make Connecticut a better place to live without adding to the financial burdens of our residents,” Rep. Fawcett said.

“The bill changes public health policy and clarifies a doctor’s right to diagnose and treat this disease; it does not cost the state any money or create any type of new program,” Rep. Fawcett added.

A public hearing before the Public Health Committee was held Friday, Feb 6. “The Lyme community really rallied behind this Bill, we were overwhelmed by the support and intense passion so many residents brought to the discussion.” Fawcett said.

• More the 100 people submitted written testimony on behalf of the Bill sharing their personal stories and struggles in fighting the disease and in achieving a diagnosis and proper treatment.

• The State Medical Society and the Lyme Disease Association of America also sent representatives to testify on behalf of the Bill.

The Bill will face a committee vote in the Public Health Committee and in the coming weeks make its way to the House Floor for consideration. Concerned citizens are encouraged to call their State Representatives and State Senators to urge passage.

Source: CT State Rep. Kim Fawcett press release, Feb 9, 2009

http://www.prohealth.com/library/showarticle.cfm?libid=14325

By ANDY NEWMAN and ANAHAD O’CONNOR
Published: February 17, 2009

A 55-year-old woman who was mauled by a 200-pound pet chimpanzee in Connecticut remained listed in critical condition on Tuesday, as police officials investigated whether illness might have changed the animal’s behavior.

Charla Nash, a friend of the chimpanzee’s owner, was viciously attacked in Stamford on Monday — with much of her face torn away — when she stepped out of her car at her friend’s house. The male chimpanzee, Travis, was eventually shot dead by officers, and Ms. Nash was taken to Stamford Hospital, where she remained on Tuesday.

In an interview, Capt. Richard Conklin of the Stamford Police said that Travis, 14, was believed to have Lyme disease, a tick-borne bacterial infection that in rare cases has been linked to psychosis, severe anxiety and delusional behavior. Travis had been in an agitated state most of the day Monday, and at one point his owner took the unusual step of giving him tea laced with Xanax in an attempt to calm him down, Capt. Conklin said.

“We’re trying to see if that factored into this,” he said of the Lyme disease.

Other than medication he might have been taking for the disease, Travis was not on any drugs and was not usually given Xanax, he added.

Despite their appearances, chimpanzees are known to possess astonishing power, with the average adult male having four to five times the upper-body strength of an adult human. As pets, they can be extremely difficult. They typically act aggressively toward their owners when they reach adulthood, and once reared by humans, they cannot be re-introduced into the wild because other chimpanzees will reject them, experts say.

The injuries Travis inflicted on Ms. Nash, whom he had known for years, were called horrendous.

“I’ve been doing this a long time and have never seen anything this dramatic on a living patient,” said Capt. Bill Ackley of Stamford Emergency Medical Service and the head of the paramedic crew that treated Ms. Nash..

The attack, in the driveway of a sprawling home in a densely wooded neighborhood on the north side of Stamford, marked a brutal end for Travis, a popular figure in town who had appeared in television commercials and often posed for photographs at the towing shop operated by his owners. He had escaped before, and in 2003 playfully held up traffic at a busy intersection for several hours, But he had no history of violence, the authorities said. Travis’s social skills included drinking wine from a stemmed glass, dressing and bathing himself and using a computer.

Travis’s owner, Sandra Herold, 70, had raised him almost as one of her own children, but found herself lunging at him with a butcher knife on Monday to protect Ms. Nash, said Capt. Conklin, who gave the following account.

Ms. Herold told detectives that Travis was in a rambunctious mood Monday afternoon. He took her keys from the kitchen table, unlocked a door and let himself out into the yard at 241 Rock Rimmon Road.

“He’s going to different cars and tapping on them, trying the doors, a clear indication he wanted to go for a ride,” Captain Conklin said.

Travis would not be lured back into the house, even after Ms. Herold gave him the Xanax-laced tea. Ms. Herold called Ms. Nash, who drove over, but when she stepped out of her car at around 3:40 p.m., Travis went at her full force. While it was not clear what prompted the assault, Ms. Nash had markedly changed her hairstyle since the last time Travis had seen her, possibly leading him to mistake her for an intruder.

Ms. Herold tried to pull Travis off her friend, but, Captain Conklin noted, “Sandra is 70 years old, and a 200-pound chimpanzee is much, much stronger than a 200-pound human being.”

Ms. Herold called 911, grabbed a knife and stabbed Travis several times, to little avail. When emergency service vehicles pulled up, Travis fled, leaving Ms. Nash face down in the driveway.

One team of officers combed the woods for Travis, while another formed a protective cordon around the paramedics ministering to Ms. Nash, who Captain Ackley said also suffered multiple broken bones.

After a while, Captain Conklin said, Travis returned and “went after the officers.” He knocked a mirror off the passenger’s side of a police cruiser with one swing of his arm, then ran around to the driver’s side, opened the door and attacked the officer in the driver’s seat.

“He’s trapped in his car,” Captain Conklin said. “He has nowhere to go. So he pulls his sidearm and shoots the chimp several times in close proximity.” Travis then disappeared into the woods.

The officer, whose name was not released, was treated for trauma. Ms. Herold was not seriously injured but was hospitalized.

Eventually officers picked up a blood trail, which they followed back to the house. There they found Travis in his living quarters, a caged-in area with a bed and other furnishings of comfortable captivity. He was dead.

Captain Conklin said that charges against Ms. Herold were unlikely.

“We’ll certainly speak to the experts and the prosecutors,” he said, “but we truly hope that there are no charges. It’s a modern-day tragedy.”

http://www.nytimes.com/2009/02/18/nyregion/18chimp.html?_r=1

Published: February 17, 2009 7:00 PM

West Kelowna, BC – An Ontario family recently donated $500,000 to the Canadian Lyme Disease Foundation (CanLyme.com) towards funding an independent research facility in Canada after two members of the family fell seriously ill with Lyme disease.

The family members, who wish to remain anonymous, became ill and were left with no answers after extensive Canadian testing. The pair subsequently went to the United States where with more aggressive investigation doctors promptly diagnosed them with Lyme disease and began treatment. They continue to improve.

CanLyme president Jim Wilson said, “This family struggled within the Canadian health care system, as are thousands of Canadians, and were let down by poor testing and a false confidence within the medical community that Lyme disease is rare in Canada. The medical leadership in Canada, including the federal and provincial governments are letting us down. Doctors and patients are not told of the serious limitations of the tests used - limitations acknowledged by the global science community.”

Lyme disease is a bacterial infection carried by ticks. Ticks are brought into Canada in the hundreds of millions each season on migratory birds and are spread randomly across Canada following migratory bird flyways. You do not need to live in or have visited a known endemic area to become infected as some government agencies and medical organizations suggest.

Inadequate testing, inconsistent reporting criteria, limited surveillance and poor clinical diagnostic knowledge have resulted in less than 50 cases of Lyme disease being reported yearly in Canada. On the other hand, the United States reports over 25,000 cases of Lyme disease annually – mainly in states adjacent to the Canadian border. Due to under-reporting the US Center for Disease Control estimates that annual cases in the US could actually be 200,000. The European Union confirms in excess of 85,000 cases annually.

Lyme disease, the fastest growing infectious disease in the northern hemisphere, is known as the “Great Imitator.” It is a multi-system, multi-organ infection and can cause numerous symptoms including extreme fatigue, arthritis, heart abnormalities, bowel and digestive problems, abnormal skin sensations, muscle weakness or jerking, eyesight or hearing abnormalities, cognitive and memory difficulties, dementia, and in some cases paralysis.

Lyme disease is commonly misdiagnosed as rheumatoid arthritis, Multiple Sclerosis, Lupus, Parkinson’s disease, irritable bowel, fibromyalgia, and chronic fatigue. CanLyme says research, including post-mortem study, is required utilizing all of today’s technology to determine how frequently these other diagnoses are in fact caused by Lyme disease. We know a percentage are in fact Lyme disease, what we don’t know is what that percentage is.

http://www.bclocalnews.com/okanagan_similkameen/keremeosreview/news/39747698.html

By CECELIA GOODNOW
P-I REPORTER

It started with a bull’s-eye rash. Spider bite, his doctor thought. But as the weeks passed, Keith Schorsch endured a cascade of progressively severe symptoms: Facial paralysis. Mental confusion. Extreme fatigue. Back and muscle pain that jolted him, screaming, from sleep.

Ten doctors in three months examined him and scratched their heads. One, convinced Schorsch had Bell’s palsy, recommended a craniotomy within 48 hours to relieve pressure on the facial nerves.

When Schorsch declined, the surgeon said, “I guess we’re just going to have to hope for a miracle.”

The miracle, when it came, took the form of a phone call from a friend, who recognized his symptoms from her own painful experience.

Her advice: “Get yourself checked for Lyme disease.”

Today Schorsch and his wife, Jennifer, say that phone call saved him from a life of chronic pain and debilitation. While grueling months of recovery lay ahead, naming the illness — acquired from a tick bite on a hiking trip back East — was the turning point.

That his salvation came from a savvy friend who had trumped the experts wasn’t lost on the Seattle couple.

Ultimately, it propelled them into the phenomenon known as Health 2.0, a revolution in online interactivity that promises to change the face of health care.

“Lyme was the dragon we had to slay,” said Jennifer Schorsch, 43, a former Starbucks marketing executive who bore the brunt of caring for her ailing husband, “but it revealed to us the power of shared experience.”

Determined to harness that power, the Seattle couple has launched Trusera, a free online community whose users can network, a la Facebook, to share health experiences, questions and hard-won wisdom.

For Keith Schorsch, 44, it’s a chance to apply the customer-service lessons he learned during five years as an Amazon executive.

“I wanted to make finding health information as easy as buying a book,” he said.

Although the Internet has thousands of health sites, he wanted to go beyond Web M.D.-style entries of symptoms and treatments.

“You wind up thinking, ‘That’s great, but how does that apply to me?’ ” Schorsch said. “What I really wanted to find was someone who’d been through it.”

Trusera launched last summer with a focus on breast-cancer patients and families affected by autism. New communities are continually being formed.

The site uses personalization technology to direct users to pages that fit their stated interests and “click history,” similar to Amazon’s ability to suggest books based on what you’ve bought previously.

Last week the Schorsches learned Trusera is a finalist for a prestigious techie honor, the 2009 South by Southwest Conference Interactive Web Award, given for new and revamped sites in various categories. Other finalists include such big names as Flickr, Hulu, Delicious 2.0 and Picnik.

Though he won’t disclose precise numbers, Schorsch said Trusera has “thousands” of members and has logged “tens of thousands” of visitors from 119 countries.

Whether the start-up survives an increasingly crowded health-networking marketplace remains to be seen.

That Schorsch survived to launch it is a miracle in its own right. At one point, Lyme disease left him so frail, Jennifer had to give him daily injections of a high-dose, intravenous antibiotic.

“I got the dosage for six weeks that a meningitis patient gets for one week,” Schorsch said. “That tells you how sick I was.”

Despite some lingering facial paralysis, he eventually overcame the illness, only to face another medical crisis a few months later, when he herniated two discs playing tennis on vacation in Hawaii.

Back in Seattle, his doctor urged him to undergo surgery within 24 hours to fuse his seriously damaged spine.

“Be careful stepping off the curb,” the doctor warned. “You could become paralyzed.”

It was deja vu all over again as the anxious couple said thanks but no thanks.

“Because of my background in technology,” Schorsch said, “I wasn’t ready to accept that a surgery invented 40 years ago was still the best option available.”

Instead, he flew to Germany in June 2005 for disc-replacement surgery, performed by a surgeon he found through — what else? — his social network.

“I was out of pain the moment I woke up from anesthesia,” Schorsch said.

Today he works out several times a week and can roughhouse once again with his two sons, ages 6 and 8. He has shed 50 pounds and relies on a blend of Western and complementary medicine — including continued acupuncture for his facial paralysis — to maintain his health.

Traumatic as it was, the Schorsches’ two-year ordeal opened them to the generosity of friends and neighbors, who brought groceries and shared advice. They’ve tried to re-create that flavor in Trusera while supplying what Schorsch calls a “missing piece in the consumer’s health journey online.” “There’s an element of humanity about our site,” Schorsch said. “We’re a warm community of practical support.”
THE VIRTUAL GESUNDHEIT
Some of the health networking sites that are springing up:
trusera.com: Seattle-based network that connects patients through personal stories, videos and shared wisdom.
medhelp.org: Pioneering online community that lets users pose questions to doctors and other patients.
patientslikeme.com: Founded in 2004 by two brothers of a man with Lou Gehrig’s disease. Focuses on neurological and mood disorders and HIV-AIDS.
wegohealth.com: Boston-based community of health activists and “social media opinion leaders.” In beta.
healia.com: Bellevue-based health search engine that offers 240 online communities. Acquired in 2007 by Meredith Corp., which owns Better Homes & Gardens and Ladies Home Journal.
wellsphere.com: Network of writers and bloggers that includes patients and medical experts.

THE LOCAL APPROACH
Despite its global reach, Trusera.com focuses heavily on connecting users with doctors, patients, clinics and events in the Seattle area. It recently partnered with Children’s Hospital & Regional Medical Center to share local autism resources and has forged similar affiliations with Families for Early Autism Treatment and the nonprofit Autism Spectrum Treatment and Research Center.

“We just felt it was a great way of connecting the community,” said David Perry, vice president of marketing and communications at Children’s and father of a 10-year-old son with autism. “They seem to be very credible and focused with the approach they’re taking.”

Elaine Powell of Renton, a single parent, said the online network has become her lifeline. Her 9-year-old son, Maxfield, has Asperger’s syndrome and daughter Jade, 15, is undergoing diagnosis for the same condition. Powell said online networking is helpful because, with time at a premium and her son prone to tantrums, she doesn’t get out much.

“It’s amazing, having that community with other moms,” Powell said.

When Carrie Fannin of Redmond joined Trusera last month she already was an energetic networker on behalf of her 14-year-old daughter, Hayley, who has a sensory processing disorder. Fannin networks through MySpace, Facebook and a Yahoo! listserv she oversees that includes 190 Washington families and 1,400 families nationally. She considers Trusera one more tool to expand her reach.

“When my daughter was diagnosed seven years ago, ” she said, “I really felt very, very alone. The first place I found a family that knew what I was going through was online.”

– Cecelia Goodnow

ceceliagoodnow@seattlepi.com, 206-448-8353

http://seattlepi.nwsource.com/health/400101_healthweb16.html