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Tuesday, August 30, 2005

Rhode Island researcher says more deer ticks this year

PROVIDENCE, R.I. (AP)
Don't be surprised if you've heard more stories about people getting Lyme disease this year.

That's because a University of Rhode Island tick researcher says deer tick numbers are way up in the state. The researcher, Thomas Mather, says his surveys show there were 85 percent more deer ticks this year than last year.

Also, tick abundance this year is 109 percent higher than the average level during the last 13 years.

There's more unsettling news: Mather says the peak of nymphal tick activity was extended into mid-July this year, so he thinks it's likely many people are experiencing Lyme disease symptoms now.

Typical symptoms of Lyme disease include joint pain, fatigue, fever and a bull's-eye rash.

Sunday, August 28, 2005

Misdiagnosis causes months of confusion for Lyme sufferer

Bristol Press - CT, United States
Melissa St. James has spent her fair share of time at hospitals lately, and it’s not only because she works in one.

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

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

"I just started crying," St. James said. "I’ve worked in nursing homes. I’ve seen 40-year-olds with MS."

"I asked him if it could be Lyme disease. He said, ‘Absolutely not.’ I asked if he was ever wrong, if he ever misdiagnosed. His answer was, ‘Not often but occasionally,’" St. James said. "I don’t blame him for not knowing. ... He was an older doctor. ..But no one ever told me that Lyme imitated MS ... (Not even) in nursing school."

"The individual symptoms don’t add up," St. James explained. "They’re vague, so they don’t get put together."

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

"He told me, ‘That’s great, you should be a research nurse -- but you’re wrong. And if you don’t take these shots you’ll be in a wheelchair.’"

St. James was fortunate enough that her church and local organizations such as Price Chopper were able to raise money to help reduce the cost of the medication.

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

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

"I have three kids, I’ve never had a problem with energy," St. James explained. "My mother would have to come over once a week to clean my house, and she would tell me that I needed to nap in the afternoons. I’m 31, who wants to nap?"

Confusion was another aspect of the disease that St. James believes contributed to a car accident she had in January.

"There’s this brain fog, you’re not as sharp. I was having speech difficulty -- my words would get confused. I’d want to say picnic table and I’d say play pen. The way my husband and kids would look at me ... I just couldn’t live like that anymore. One day I just decided I was stopping the injections," St. James said. "They weren’t helping me. Out of the sky, it popped into my head ..Lyme disease ..The Lord just put it on my brain."

St. James weened herself off of pain medication and anti-spasmatic medication as well.

"I was really scared, I had that wheelchair in the back of my mind," St. James said.

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

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

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

Lyme disease can be very difficult to detect.

"Various medical research has reported lyme borrelia as a stealth pathogen that can hide in immune cells," according to the Greater Hartford Lyme Disease Support and Action Group.

Problems with false negatives and false positives with the most commonly used tests, ELISA and the Western Blot, can cause confusion.

According to the commercial lab Quest Diagnostics of Wallingford, "A negative Western Blot interpretation does not exclude the possibility of infection with B. burgdorferi (the Lyme bacteria)."

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

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

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

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

"I’ve never seen someone so happy to have Lyme disease," St. James said. "..But they did four tests on my girlfriend [who had insurance] and they only did one on me."

St. James current doctor treats her the best he can with the resources that are available to him.

"My doctor told me he could treat me so much better with insurance," St. James said.

"Lyme is the easiest and cheapest solution," St. James said. "But these autoimmune diseases are big money makers. And Lyme doesn’t give the money to the drug companies. No one said that for $35 a month in antibiotics instead of $1,500 in daily injections, I’d be getting better."

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

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

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

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

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

Friday, August 26, 2005

Director of URI vector-borne disease center sees up-tick in Lyme disease

Warwick Beacon
Are you experiencing the joint pain, fatigue and bulls eye-like rash that are typical symptoms of Lyme disease? How about persistent spiking fevers and chills and lethargy that are common signs of babesiosis? Or high fevers and excruciating headaches that come from anaplasmosis. If so, you’re not alone.

According to a University of Rhode Island tick researcher, it should come as no surprise that an increasing number of Rhode Islanders were infected with Lyme disease or another tick-borne disease this year, given the high numbers of ticks his research team has found in statewide surveys.

“Our statistics show that tick abundance this year was up 84.5 percent over last year’s levels, and the tick counts for this summer are 109 percent higher than the previous 13 year average,” said Thomas Mather, director of URI’s Center for Vector-Borne Disease.

While data on human Lyme disease cases occurring in Rhode Island is typically recorded by the Department of Health, Mather is convinced that this year will be a record-breaking year for cases of the disease.

“The peak of nymphal blacklegged (deer) tick activity, which typically is in mid-June, extended into mid-July this year — several weeks longer than normal — and the peak of Lyme disease cases occurs usually about two or three weeks after the tick activity peak. So it’s likely that many people are just now beginning to experience symptoms,” he said.

Mather has been monitoring tick abundance in the state since 1993, and with the exception of one year, his annual tick risk data have corresponded with the number of Lyme disease cases reported for that year. “Lyme disease is a product of tick abundance and human exposure to ticks,” Mather explained. “This summer we saw a double whammy—the confluence of more ticks and longer seasonal exposure.”

“The only good news is that the hot, dry conditions have finally taken their toll on the nymphal ticks,” he added, “and people are at much less risk now.”

Public awareness is the key to identifying Lyme disease, says victim

Oakville Beaver
When 39-year-old Rob Manten was finally diagnosed with Lyme disease in June, the Waterdown resident felt like he had won two battles.

Not only had the debilitating disease that had ravaged his body for more than 10 months been identified, but he was now in a position to promote more public awareness about the disease and hopefully convince the Canadian government and some members of the medical community that the presence of Lyme disease in this country shouldn't be downplayed.

The disease is caused by a bacteria called Borrelia burgdorferi, which is left in the human body by deer ticks, often no larger than a poppy seed, that clamp onto the skin and feed on their victim's blood while allowing the bacterium to enter the body. According to the website for the Canadian Centre for Occupational Health & Safety (CCOHS), these bacteria most often cause a mild illness, sometimes accompanied by a peculiar skin rash. But, in some cases, the bacteria can spread to the joints, heart, and brain, causing serious problems. If left untreated, it can cause disability.

Last July, the Mantens were camping near Brantford when they noticed "a whole slew of ticks" around their campsite. Manten was bitten by one and his wife, Janet, recalls pulling ticks off their three children as well.

They weren't concerned about the ticks. After all, they were more than 40 kilometres away from the north shore of Lake Erie and Long Point, which is "the only clearly defined risk area in Canada" for ticks carrying Lyme disease, according to the CCOHS website.

"That's the first misconception we had," Janet said, adding that she and her husband now believe that ticks carrying the disease "could be anywhere," not just along the north shore of Lake Erie. The couple feel that people should be forewarned and they're disappointed by what they see as a cavalier approach to the problem by the Canadian government and much of the medical community.

"It seems they have their heads in the sand where this disease is concerned," Manten lamented.

While Manten acknowledges that he cannot categorically prove that the tick bite he received at the Brantford area park caused his Lyme disease because symptoms can lie dormant for years, he does know that something dramatic happened to his health shortly after being bit by the tick.

Within two months, he began experiencing flu-like symptoms, including fever and nausea. He had migraine headaches every day for two months and he experienced a host of other symptoms, including dizziness, difficulty concentrating, constant ringing in his ears and a pressure sensation in his forehead. He still struggles with fatigue, despite being two months into his antibiotic treatments.

By late October, he was no longer able to function at his job as an environmental engineer for an Oakville/ Mississauga area consulting firm. It was eight months and 13 doctors later before he had a correct diagnosis.

In Ontario, he was tested three times over six months for Lyme disease. All came back negative; the test most widely accepted in Canadian medical circles (the ELISA test) is unreliable, Manten later learned from a local psychologist who he was referred to after doctors in Ontario failed to get to the root of his health problems.

Manten was referred to the psychologist for treatment of depression. After learning about his symptoms, the psychologist promptly told him not to show up for an appointment because, he said, "I think you have Lyme disease."

The Mantens traveled to Long Island, New York, where doctors see many more cases of Lyme disease. There are hundreds of thousands of Lyme disease cases in the United States, most of them near the Canadian border.

Last year, more than 21,000 cases of the disease were reported in the United States, but the Centres for Disease Control believe the number is actually 10 times greater. Health Canada's numbers suggest that Canadians have little to worry about. There have been 310 reported cases of Lyme disease in Canada since 1994, mainly in Ontario and B.C., and more than half of those are attributed to tick bites outside the country.

The U.S. has a better reporting system than Canada when it comes to determining the actual number of Lyme disease cases, Manten charged, adding that statistics are artificially low here because officials require both a positive result on the ELISA blood test, one of two available to check for the disease as well as evidence of a rash that looks like a red bull's eye (something which Manten didn't experience). Because the ELISA test is unreliable and just 50 per cent of Lyme disease victims exhibit the bull's eye rash, Manten suspects the Canadian numbers are greatly understated.

In Long Island in April, Manten saw two doctors, a neurologist and a general practitioner. After looking at various scans, the first doctor concluded Manten didn't have Lyme disease. The other doctor gave him a partial Western blot test, which showed a negative response.

Finally, after looking for information about the disease on the website for the Canadian Lyme Disease Foundation (www.canlyme.com), Manten was advised to see a Toronto doctor who specializes in internal medicine, infectious diseases and medical microbiology. A blood sample was taken in early May and sent to a lab in California for a full Western blot test. The IgM (or early antibody response) to the test came back positive. Ten months after having been bitten by a tick, Manten finally had a correct diagnosis.

"The most frustrating part of all this was, all those months, I had no idea what was wrong and I was gradually getting sicker and sicker," he said. Still, he feels fortunate that it took less than a year for his diagnosis; he's heard of cases that went undiagnosed for 10 to 20 years.

A big part of the problem is that Lyme disease mimics the conditions of many other diseases. Its victims are commonly misdiagnosed with arthritis, fibromyalgia, chronic fatigue syndrome, lupus and multiple sclerosis, Manten said.

Manten is now on the road to recovery. After two months of antibiotic treatment, some of his symptoms have abated. His doctor expects it will take eight months before Manten feels like himself again.

Manten credits his employer, the Hatch consulting firm, for being "incredibly supportive."

But as he fights to extend his short-term leave to long term-disability, his main goal is to get the word out about the dangers of Lyme disease. "It can be encountered anywhere in Canada," he warns. "It's not an epidemic, but it's present."

Thursday, August 25, 2005

Hope to Heal Lyme Conference DVD set

The 5 DVD set and the conference handouts of the keynote presentations from the "Treating Lyme Disease using Integrative Medicine Conference" held in May 2005 in Reston, Virginia are now available.

Physician speakers include Dr. Steve Bock, Dr. Ken Bock, Dr. Joseph Burrascano, Jr., Dr. Bernard Raxlen, Dr. Charles Ray Jones, Dr. Ken Singleton, Dr. Mark Garzon, and Mr. Burton Goldberg.

There is also a survivor panel session to inspire you, a question and answer session with an Integrative Panel, and a very informative session on legislation activities.

Ordering Information

Is it the flu - or Lyme disease?

Amity Observer - Shelton,CT,USA
Imagine being ravaged by headaches, flu-like symptoms, arthritic-like pain and intense fatigue - seemingly overnight.
Carrie Peterson, 32, of Woodbridge has been hit with Lyme disease twice in the past four years. An avid hiker, she said she's sure she picked up the infected tick in the woods somewhere.

Peterson said that she's always very tired and feels like she's sleepwalking all the time.

She said that despite using bug sprays and repellents she hasn't been able to get away from ticks.

The most recent case was caught early. She was bitten by a tick in early spring and immediately recognized the bull's eye pattern.

"I wouldn't wish Lyme disease on my worst enemy," she said. "You don't know how terrible it is until you have it."

Like Peterson, longtime Easton resident, artist Dolly Curtis, 63, said she had been "blessed" with tip-top health before being virtually incapacitated by an insect bite on her foot during the summer of 1991.

Chronic Lyme disease

Over the past few years, basic information about tick-borne diseases, specifically Lyme, has become increasingly available to the public.

While the existence of Lyme disease is irrefutable, controversy has risen over the validity of "Chronic" Lyme disease.

Up-to-the-minute research by leading medical researchers, however, most notably the International Lyme & Associated Diseases Society (ILADS), contend that Chronic Lyme is a widespread and oft-misdiagnosed condition that is only beginning to be legitimized by the medical community.

Part of the contentiousness surrounding Chronic Lyme is that there are still no reliable tests, nor any definitive cure or vaccine.

The ELISA test will not indicate infection if its performed too early (2 to 6 weeks) after the tick bite).

Patients with long-term Lyme rarely have a positive ELISA test because they have ceased to produce the antibodies the test looks for, according to the Lyme Disease Association, a national nonprofit dedicated to providing accurate information on the illness.

"Often, doctors will not make a Lyme diagnosis unless there is physical evidence of symptoms, like a rash," said Curtis. "Then they will wait for the lab tests to come back, and it can take a while until the person actually goes on antibiotics. However, a person should be treated immediately if they know they have been bitten by a tick."

Peterson agrees, "I was lucky to first see the tick and recognize the marks early last spring. I went to the doctor immediately."

However, according to ILADS, fewer than 50 percent of Lyme sufferers recalled a tick bite.

According to Tolland-based nonprofit organization, the Lyme Disease Foundation, only 60 to 70 percent of patients notice a rash.

"One of the many difficulties in accurately treating this disease is that there are so many variables in symptoms, particularly when the person begins feeling symptoms, as well as what those particular symptoms are," explained Curtis.

Curtis called Lyme "the great imitator" because its symptoms are so similar to that of many other illnesses.

An unmistakable sign is the development of a bull's-eye rash around the site of the bite. The rash can vary in size and coloring. It may appear a few days or even a few weeks after the bite. It can spread to other parts of the body, or there may be additional rashes far from the primary one.

Other symptoms appear simultaneously with the rash (or, in many cases, without it). These symptoms are primarily flu-like in nature, including fever, muscle ache, fatigue, tingling or numbness and joint pain.

The Lyme Disease Association warns that while the flu typically occurs during the winter, a summertime bout could be highly suspect.

"You should insist on no less than four weeks of antibiotic treatment," advised Curtis. "If your doctor refuses, see another."

The Lyme Disease Association makes clear that a person suffering from symptoms, such as the rash and flu-like signs, should pursue treatment even if a blood test comes back negative.

"While there are many Lyme symptoms that imitate other diseases, the bulls-eye rash is a really strong indicator," said Curtis. "Don't let a false-negative test fool you."

Curtis is skeptical about the national Center for Disease Control's (CDC) assertion that the likelihood of getting Lyme is "extremely small" if the tick is attached to the skin for less than 24 hours.

"Just this past June, I noticed I had a tick on my hand after gardening for no more than two hours," said Curtis.

Within hours of the bite, Curtis said, her hand swelled and was so painful that she could not move it.

"It was like what happened to me 15 years ago with my foot," said Curtis. "Only this time it was my hand."

A steady dosage of amoxicillan, fortunately, treated the symptoms.

Peterson said the medications she's received in both of her bouts with the disease have made her sick.

"The medications I received for the disease made me violently ill I hope that my doctor can find an alternative medicine that will agree with me," Peterson said. "For now, I put up with the stomach aches and nausea."

ILADS is highly critical of the CDC and other government-directed organizations.

"The CDC surveillance criteria were devised to track a narrow band of cases for epidemiological change and were never set up to be used as a diagnostic criteria nor were they meant to define the entire scope of Lyme," ILADS states, citing a National Institute of Health (NIH) study dated March 25, 1991.

Curtis concurs that Lyme disease is a very comprehensive, potentially devastating illness.

"It is so widespread, so complicated," she said.

According to the Lyme Disease Association, there are well over 100 different symptoms. The disease is often mistaken for other illnesses including Fibromylagia or Chronic Fatigue Immune Dysfunction Syndrome, Multiple Sclerosis, Lupus, Parkinson's, Alzheimer's, Rheumatoid Arthritis, motor neuron diseases (including ALS and Lou Gehrig's disease) as well as psychiatric disorders such as depression and anxiety.

Further, ILADS states that Borrelia burgdoferi is not the only bacterium that causes Lyme. There are many pathogenic borrelia strains, spread by hundreds of different kinds of species of deer and dog ticks.

Tick-Borne illnesses

In addition, ticks can spread many diseases besides Lyme, most commonly Ehrlichiosis, Babesiosis, Bartonella and Rocky Mountain spotted fever.

These illnesses carry symptoms similar to Lyme, and is potentially life threatening with people who have compromised immune systems.

Pregnant women also suffer dire risks. The CDC warns that improperly treated Lyme in pregnant women can result in them carrying the illness to the child. Lyme in pregnant women, according to the CDC, can also lead to stillbirth if the illness is not vigilantly monitored and treated through antibiotics.

Prevention

According to the Lyme Disease Association, ticks are most plentiful in areas where woodlands transition into fields, meadows or yards. Ticks are most often found in tall grass.

There are various insect repellants, such as permethrin spay, that may help. Wearing long-sleeved shirts, long pants and a hat are helpful.

While most active in May, June and July, ticks are still very much out and about well into September.

If bitten by a tick, they should be removed promptly by pulling it slowly straight out with tweezers. Grab the tick near its head. Do not apply rubbing alcohol, petroleum jelly or any other substance (aggravating the tick can cause it to regurgitate in your blood, increasing chances for infection). Cover the site with antiseptic ointment after the tick is removed.

Ticks can be sent to area labs for testing.

$100 million-dollar support

On July 25, Senator Christopher Dodd (D-CT) announced his support of the Lyme and Tick-Borne Disease Prevention, Education and Research Act, a $100 million piece of bipartisan legislation that which would significantly strengthen and coordinate efforts to research, prevent and treat Lyme and other tick-borne illnesses.

The $100 million would be issued over a five-year period.

Connecticut had the highest incidence of Lyme of any state between 1992 and 2002. Lyme was named after Old Lyme, where the disease was first recognized (records of the condition, itself, however, extend back to the 1800s).

There are numerous area support groups in Connecticut for Lyme sufferers.

The Wilton Lyme Disease support group meets the second Wednesday of every month at 7:30 p.m. at the Comstock Community Center off Schoolhouse Road in Wilton.

For more information, call Douglas Bunnell, PhD at (203) 834-1635.

The Greater Danbury Lyme Disease Support Group meets the third Saturday of every month in Redding. For more information, contact Pat Bartlett at (203) 791-0477.

The Greater Hartford Lyme Disease Support and Action Group meets the third Wednesday of every month in the Farmington/Unionville Community Center. For more information, email Randy Sykes at Modelt1918@aol.com.

Wednesday, August 24, 2005

Lyme-like microbes pose health threat

MidHusonCentral.com
Health Department officials are tracking 30 suspected cases of ehrlichiosis, an illness that can be transmitted by the Lyme disease-carrying deer tick or the lone star tick. It is not transmitted person to person.
County Health Department Public Information Officer Pat Abitabile says the illness has been around in New York. The first cases occurred, like Lyme and West Nile virus, in New York City and on Long Island in 1995.
It has crept up the Hudson Valley with 10 cases here last year and a threefold increase here so far this year.
Ironically, as the incidence of ehrlichiosis increases here, Lyme cases continue to drop. In 2002 the county had the highest incidence of Lyme per capita in America, at just over 1,000. In 2004 that number had dropped to 408 and so far this year there have been 260 confirmed cases.
Symptoms of ehrlichiosis are similar to those of Lyme disease. They include fever, muscle aches, weakness and headache. Infected individuals can also experience confusion, nausea, vomiting and joint pain. The infection can range from mild to moderate for most but can be life threatening.
Symptoms appear anywhere from one to three weeks after infection and, as with the bite of Lyme-infected ticks, every exposure does not result in infection. Unlike Lyme disease there is never a rash that comes with ehrlichiosis.
Treatment of the illness is similar to that for Lyme disease with a course of antibiotics, with Tetracycline the medication of choice.
The distribution of the 30 cases now being tracked shows Valatie having the highest incidence with seven, Hudson a close second at five and Ghent third with four. Other towns reporting cases are Hillsdale, Old Chatham, Germantown, Craryville and Copake at two each with Stottville and East Chatham at one apiece.
Asked about the Lone Star tick, a name that implies an insect that has traveled a long way to infect New Yorkers, Ms Abitabile notes that the tick is much more prevalent on Long Island than it is here, with the vast majority of ehrlichiosis cases delivered by the deer tick.
As with Lyme disease, County Health Department Director Nancy Winch says the department is emphasizing prevention.
Individuals who will walk, play or work in wooded and grassy areas are encouraged to wear long pants tucked into their socks and shirts tucked into pants to prevent ticks from gaining access to skin.
Light colored clothing also allows for easy tick discovery. While outside check every two or three hours for ticks and once inside a thorough search of body surfaces should be done. A tick removed within 36 hours of its attachment to the skin minimizes the risk of infection.
If a tick is discovered embedded in skin, tweezers should be used to remove it. Grasping the tick as close as possible to the skin will improve chances that one gets all the tick parts. Mouth parts left in the skin can cause infection. Care should be exercised not to crush the tick as it is removed. This could release infectious fluid.
Residents are warned not to use petroleum jelly or lit cigarettes or other home remedies. After removal of the tick, disinfect the bite site and wash hands.
Persons who want to know what species of tick they have been infected with can send it to the state Department of Health Tick Identification Service. Beyond species identification, one can also learn if all the body parts of the tick are intact, whether it is engorged with blood from feeding, and how long it may have been embedded in the skin. The service will not tell you if the tick is infected with any disease carrying organism, though.
Send the tick immersed in rubbing alcohol in a sealed container to the Tick Identification Service c/o HVCC Central Receiving, 80 Vandenburgh Avenue, Troy 12180.

Tuesday, August 23, 2005

After facing Lyme disease, Hall is ready to rock

Boston Globe
Singer Daryl Hall has endured a potentially life-threatening summer. He was diagnosed with Lyme disease after stumbling offstage with a 102-degree fever in June. He and touring partner John Oates -- one of the most popular soul-pop duos of the past 20 years -- canceled their July shows as Hall sought medical help and retreated to his upstate New York home. Hall & Oates are now launching a national tour (with Todd Rundgren opening) at the Bank of America Pavilion tonight. Hall recently spoke about his ordeal for the first time.

How is your health right now?

I'm not out of the woods, but I'm fine, let's put it that way. With tick-related diseases, it takes a long time to rid yourself of these things -- if you're lucky enough to actually be able to do that. I've become an instant expert on this, having been exposed to it. I actually have four tick-related diseases. Everybody thinks it's just Lyme disease -- and they all have different cures. But I was lucky. I caught it fairly early and my doctor, who is considered to be one of the top experts on this in the world, is using the word ''cure." And that's a rare word to use with Lyme disease.

How did you know you had it?

I had this raging fever, and my bones were aching and my muscles were twitching. And I had an extreme headache. I just felt like I had the worst flu in the world . . . I was tested and what came up was a disease called ehrlichiosis.

Were there any fears that you might not play any dates this summer?


I was seriously scared for a while. I mean, I'm an athlete of sorts. What I do is very physical. If you have this stuff, you can maybe stumble into the office and work if you have a sedentary kind of job. But if you do what I do, you've got to be in peak condition. People are paying money to see me do my best, and that's the only thing I accept is to do my best. And when I was faced with the possibility in the beginning of not knowing where I was at, it was terrifying. It was, 'What am I going to do? Is life over? Can I sing again? Can I get onstage again?' All these things went through my mind.

Is there another album in your future?


Yes, and I'm already writing. I had plenty of chances to write this summer. I wasn't doing anything else. I was just sitting around with my guitar and my keyboards and my sickness, but I've been coming up with a lot of ideas. I hope we can get another album out by the end of '06.

Lyme disease cases spike at local hospital

The Daily News Tribune
MetroWest Medical Center's infectious disease clinic chief says he has seen a huge increase in Lyme disease cases this summer.
"It's unbelievable," said Dr. Thomas Treadwell. "There's been days when I've seen five or six cases a day."
Treadwell has not done a firm count, but said he has treated several dozen cases of the tick-borne infection, about two or three times more than last summer.
The danger areas appear to be in Southborough, Callahan State Park in Framingham, and areas along the Charles River, Treadwell said. The disease's prevalence may be related to infection rates in rodents, since deer ticks contract the disease from rodents, such as field mice, before passing it on to humans, he said.


Statewide, Lyme disease cases appear to be about the same as last year, though some areas are experiencing high infection rates, said Dr. Bela Matyas, medical director of the state Department of Public Health's epidemiology program.
"There are different pockets that have been reporting a little bit more, some reporting a little bit less," Matyas said.
Dr. Rahul Sawant, a Franklin internist who is on staff at Milford Regional Medical Center, said he treats between five and 10 people with Lyme disease per month. But this year is not any worse than last, he said. Marlborough Hospital also has not noticed any sizable increase in Lyme disease this year, a spokesman there said.
"This is the time of year when Lyme disease is very common," Sawant said.
Cape Cod and the islands are usually among the hardest hit by Lyme disease, Matyas said. Health care providers are required to report cases to the DPH, but good statistics will not be available until December, because Lyme disease usually isn't reported immediately, he said.
Reported Lyme disease cases increased dramatically beginning in the late 1990s before stabilizing the last couple years, he said. About 1,500 to 1,700 cases are documented by the DPH in Massachusetts each year, but it is an underreported disease, so the true number is likely much higher, he said.
In suburban areas like Middlesex County, Matyas said, a resurgent population of deer -- which provide an important food source for deer ticks -- over the last decade has helped make Lyme disease more common.
Lyme disease is usually a "fairly trivial" infection that responds well to treatment, Treadwell said. The typical symptoms are a fever, rash and headache, but it is also associated with more serious complications including arthritis and facial paralysis, he said.
"It can be a severe disease, but most of the time it's not," Treadwell said. "There's a lot of misinformation and I think people get frightened by that."
Treadwell recommended using bug spray and keeping feet covered when outdoors, and checking your body for deer ticks after being outside. The ticks, which are very small, like to feed on dark, warm areas like behind the knee or in the groin or armpit, he said.
For more information on Lyme disease, log onto www.mass.gov/dph and search for Lyme disease in the "health topic index."

Doctors see uptick in Lyme diagnoses

MetroWest Daily News
By Jon Brodkin
At one suburban clinic, the increase in the number of Lyme disease infections are ``unbelievable.''
Compared to last summer, nearly three times as many cases of the tick-borne infection is being diagnosed in some regions from the woods to the Cape.
``It's a joke. It's unbelievable,'' said Dr. Thomas Treadwell of Framingham. ``There's been days when I've seen five or six cases a day.''
The danger appears to be in areas along the Charles River, Southboro and Framingham.
Statewide, Lyme disease cases appear to be about the same as last year, though some areas are experiencing high infection rates, said Dr. Bela Matyas, medical director of the state Department of Public Health's epidemiology program.
``There are different pockets that have been reporting a little bit more, some reporting a little bit less,'' Matyas said.
Cape Cod and the islands are usually among the hardest-hit by Lyme disease, Matyas said. Health care providers are required to report cases to the DPH, but good statistics won't be available until December because Lyme disease usually isn't reported immediately, he said.
In suburban areas, a resurgent population of deer has made Lyme disease more common.

Monday, August 22, 2005

Increasing number of ticks means more cases of lyme disease

Westerly Sun - Westerly,RI,USA
KINGSTON - According to a University of Rhode Island tick researcher, it should come as no surprise that an increasing number of Rhode Islanders were infected with Lyme disease or another tick-borne disease this year, given the high numbers of ticks his research team has found in statewide surveys.

"Our statistics show that tick abundance this year was up 84.5 percent over last year's levels, and the tick counts for this summer are 109 percent higher than the previous 13 year average," said Thomas Mather, director of URI's Center for Vector-Borne Disease.

While data on human Lyme disease cases occurring in Rhode Island is typically recorded by the Department of Health, Mather is convinced that this year will be a record-breaking year for cases of the disease.

"The peak of nymphal blacklegged (deer) tick activity, which typically is in mid-June, extended into mid-July this year - several weeks longer than normal - and the peak of Lyme disease cases occurs usually about two or three weeks after the tick activity peak.

So it's likely that many people are just now beginning to experience symptoms," he said.

Mather has been monitoring tick abundance in the state since 1993, and with the exception of one year, his annual tick risk data have corresponded with the number of Lyme disease cases reported for that year.

"Lyme disease is a product of tick abundance and human exposure to ticks," Mather explained.

"This summer we saw a double whammy-the confluence of more ticks and longer seasonal exposure."

"The only good news is that the hot, dry conditions have finally taken their toll on the nymphal ticks," he added, "and people are at much less risk now."

Saturday, August 20, 2005

Thank you for saving my life

Sunderland Echo - United Kingdom
A BLIND and disabled mum today said an emotional thank-you to a Sunderland doctor for saving her life after an 11-year fight for treatment.
Christine Jennings, 43, went on a two-week hunger strike after claiming she could not get proper medical care for life-threatening Lyme Disease, which she caught after being bitten by a tick during a country walk.
The mum-of-four, from Hinckley, Leicestershire, was moved to tears when Professor Terry Daymond, of Sunderland Royal Hospital, stepped in to end her long battle for her treatment by offering his help.
The mum-of-four, who is wheelchair bound, had an operation yesterday after travelling up to Sunderland with her daughter, Rebecca Sabin.
Mrs Jennings said:"If it wasn't for Sunderland Royal Hospital and Professor Daymond, I would have no future.
"I've been fighting for 11-and-a-half years for somebody to help me and had virtually given up, but he has given me hope.
"I'm overwhelmed. I'm so relieved to have started my treatment. I feel like it is the first day of the rest of my life."
She added: "Professor Daymond has been amazing. He's done everything he can. I can't talk to him without crying. I know he's had to fight my corner to get me here.
"The staff have been wonderful. Everybody is so friendly. I've never been in a hospital like it, with the care and time they've got for everybody. I've been really touched by it."
Consultant rheumatologist Professor Daymond is believed to be one of the few doctors in the country who treats Lyme Disease, which is thought to affect about 300 people a year in this country.
Mrs Jennings has been blinded by rare eye diseases caused by her condition and it has left her wheelchair-bound, affecting her joints, organs and central nervous system.
Today, Mrs Jennings is having a tube, known as a Hickman line, put in her chest through which antibiotics and other treatments will be fed.
Daughter Rebecca, 22, has been her mum's full-time carer for the past 11 years and has travelled up to Sunderland with her.
She said: "I'm so grateful they've saved my mum. We want to say thank-you from the bottom of our hearts. Without treatment she would be dead.
"If it wasn't for Professor Daymond and the people at the hospital she wouldn't have any hope at all
"I'm so amazed by how nice everybody is. I can't thank the nurses, doctors and Professor Daymond enough.
"We've been in tears, not because we're upset but because of how good they are. I want the chief executive to know how much it means to us being in Sunderland."
Former interior designer and artist Mrs Jennings, who is also mum to Sebastian, 20, Jemma, 18, and 13-year-old Kelsey, will make regular visits to Sunderland over several years for treatment.

Ticking bomb?

Globe and Mail - Canada
I lay on the emergency table, my left breast prepped for microsurgery. The resident peered at the underside of my bosom to examine the creature clamped in the middle of a dark and angry rash. The spider-like bug had been there for at least three days, having hitched a ride all the way from the grassy marshes of Prince Edward Island, where I had spent an afternoon in hip waders and bulrushes.

"I've seen hundreds of ticks," the doctor assured me, his scalpel flashing under the hospital lights as he slashed into my breast to dislodge the bug. "I've picked them off myself up north.

"It's not a tick," he continued, gluing my skin back together. "So don't worry."

Three years later, I wasn't worried — I was panic-stricken. A strange illness had begun to assault me. My body felt like a powder keg. My skin was on fire. I was dizzy and had chest pains. My muscles twitched, and I had trouble keeping my balance when I walked.

I shuffled from doctor to doctor, desperately trying to convince someone that the symptoms were not something a prescription for anxiety pills would heal. I was tested for HIV, syphilis, West Nile; nothing showed up. I was finally told I most likely had two autoimmune diseases — that I was in the early stages of both multiple sclerosis and lupus.

My own layperson's investigation suggested a more plausible explanation: Lyme disease, tracing back to that bite three years before.

What I could never have imagined as I set out to seek treatment was that I had stepped into the middle of one of medicine's most vengeful clashes — a war that not only pits
patient against doctor, but also physician against physician. Patients' lives are in the balance as U.S. doctors lose their licences, casting a chill over the entire North American medical community.

This war has claimed hundreds of thousands of Americans,
and many more who go undiagnosed and untreated — not only
victims whose lives are diminished, but also many who are
in wheelchairs or bedridden.

Many Canadian doctors and medical institutions are like
conscientious objectors, not only retreating from the
battle but also seemingly denying its existence. I
encountered outright hostility to the possibility that I
could have been infected by a tick bite in Canada.

Lyme disease is an acknowledged epidemic in the United
States. There are hundreds of thousands of Lyme patients,
most of them in states next to the Canadian border. Last
year, there were more than 21,000 reported cases of Lyme
disease in the United States, but the Centers for Disease
Control believes that the number is actually 10 times
greater. The number of Americans infected with Lyme disease
over the past 30 years could be as high as three million.

Daryl Hall of Hall & Oates recently cancelled a tour
because he was too sick with Lyme disease to travel. He is
just one among a star-studded cast of victims that also
includes best-selling authors Rebecca Wells and Amy Tan. By
the time she was diagnosed, several years after she first
became ill, Ms. Tan was hallucinating. She has recently
joined the groundswell of increasingly rancorous
patient-advocate groups south of the border.

The CDC's map shows areas of widespread Lyme infestation
all along the eastern seaboard. But here in Canada, ticks,
which are carried by songbirds and mice, apparently need a
passport.

"It's here in minute cases, confined to a relatively small
number of areas," says Paul Sockett, who heads the Health
Canada department that oversees diseases that pass between
animals and humans. He argues that the endemic areas in the
United States may be located in the middle of those states,
so the ticks wouldn't make it as far as the Canadian
border.

But Ernie Murakami, in Hope, B.C., says his own caseload
shows the official statistics are deeply flawed. Dr.
Murakami, known among advocacy groups as one of a handful
of "Lyme-literate" doctors here, says he has treated 1,000
Canadians for the disease, from Halifax to his home
province. He has counselled another 1,000 patients and
their doctors by telephone.

Dr. Murakami says Canada is on the cusp of its own
epidemic. "It's atrocious just how many cases are being
missed by doctors," he says. "People's lives are being
ruined. They're completely disabled when all they needed
was antibiotics."

Many people go years without a proper diagnosis. They lose
their health, their jobs, their homes and sometimes friends
and family who have trouble comprehending just how
debilitating the disease can be. I was much luckier than
most, because I began antibiotic treatment seven months
after my first symptoms appeared. But even I was already
too ill to work.

In the doctors' defence, Lyme can be a difficult disease to
diagnose. It is dubbed "the great imitator" because it
mimics so many other diseases. People with Lyme disease are
most commonly misdiagnosed with everything from arthritis
to fibromyalgia, chronic fatigue syndrome, arthritis,
multiple sclerosis, Lou Gehrig's disease, Parkinson's,
Alzheimer's and bipolar disorder, to name a few.

While German researchers first recognized the bacterium
more than a century ago, it wasn't until a group of mothers
in Lyme, Conn., noticed that their children had all been
suddenly diagnosed with juvenile arthritis that researchers
began to search for the culprit. Lyme disease has now been
reported in 50 U.S. states, but is also on the upswing in
China, Europe, Japan, Australia and the former Soviet
Union.

The name of the bacterium is Borrelia burgdorferi. It's
spread by deer ticks — often no bigger than a poppy seed —
when they clamp on to the skin, feeding on the host's blood
while allowing the bacterium to invade the body.

The organism moves better through tissue than in blood,
eventually embedding itself in the central nervous system,
heart, brain, liver, spleen and joints, causing everything
from mild pain to dizziness and paralysis. Often the first
sign of Lyme disease is a bull's-eye rash. If recognized
early enough, the disease is easily stopped in its tracks
with a few weeks of low-dose antibiotics.

Health Canada's numbers do make it seem that Canadians have
little reason to worry. There have been 310 reported cases
of Lyme disease in Canada since 1994, mainly in Ontario and
B.C., and more than half reportedly caused by tick bites
outside the country. But those numbers do not include the
growing army of people like myself, who got their positive
tests at specialized U.S. labs.

And Dr. Sockett's view is not shared by everyone at the
federal health agency. Robbin Lindsay, a Health Canada
research scientist, says the organization is aware of
several areas infested with Lyme-carrying ticks, including
Lunenburg, N.S., and Rondeau Park, Presqu'ile, Point Pelee
and Long Point in Ontario. Much of British Columbia, Dr.
Lindsay says, is also rife with Lyme-infected ticks. In
reality, she warns: "You can acquire a tick that is
infected pretty much anywhere in Canada."

Jim Wilson of Westbank, B.C., has witnessed the toll of
Lyme disease within his own family and across the country.
He was infected with the bacteria in Nova Scotia in the
early 1990s, but it wasn't until his own daughter become
ill a decade later in B.C. that he realized the extent of
the problem in this country.

He founded the charitable Canadian Lyme Disease Foundation
two years ago to give a national voice to the disparate
patient groups in various provinces. He says he receives
dozens of e-mail messages a day from people trying to find
help.

"Let's just admit that we're missing something very big
here," Mr. Wilson says, adding that his website gets more
than 40,000 hits a day. "I just got a call from a reporter
up in Gander, Nfld., wanting to know what's going on,
because so many people believe they've got Lyme. It's
everywhere but it's nowhere, according to Health Canada."

Because of the lack of acknowledgment from the government,
Lyme disease isn't even on the radar of most doctors,
contributing to the misdiagnosis and debilitation of
hundreds of Canadians, according to Mr. Wilson's lowest
estimates.

In my own case, by the time I ended up in the office of Jay
Keystone, one of Canada's top infectious-disease doctors, I
had already seen about 20 doctors. It was early spring and
Dr. Keystone carefully reviewed my file before telling me
that he didn't believe it was Lyme disease that was making
me ill — too long between the bite and the manifestation of
the disease, he said.

He agreed that my symptoms were consistent with Lyme
disease, and that it probably had been a tick bite I had
three years ago. But my illness was more likely caused by
stress, he explained. "Lyme disease is the most
overdiagnosed disease in North America," he continued.
"Even if you did test positive on a Lyme disease test, I
would test you again and again and again." He said he
didn't want to treat me for a disease I didn't have, and
tests can produce false positives.

I was stunned. What cancer or heart-disease patient, I
thought to myself, has to prove their illness over and over
and over again to get treatment? I left his office in
tears, believing that no one in Canada was ever going to be
willing to treat me. A few weeks later, however, I found a
doctor — after obtaining a positive test from a California
lab.

"If someone's living in downtown Toronto, the chances of
them having Lyme disease are incredibly low," Dr. Keystone
explains now. "If we tested every patient who comes in with
symptoms like you had, we would have huge numbers of people
with false positive tests. ..... I'm not a Lyme expert, but
as far as we can tell, there's very little Lyme disease in
Ontario."

It may seem astounding that doctors who devote their lives
to healing the sick would willingly turn patients away at
the door. But the medical controversy over both the
diagnosis and treatment of Lyme disease has created a
difficult climate for patients and doctors alike.

Over the past few years, more than 50 physicians in states
such as New York, Connecticut and Michigan have faced
lengthy investigations costing hundreds of thousands of
dollars for administering long-term antibiotics to
Lyme-disease patients. Many have been disciplined and some
have lost their licences, creating a climate in which many
doctors are reluctant to take on Lyme patients.

The most acrimonious debate is over one question: How much
antibiotic therapy is enough?

On one side is a group of scientists and front-line
physicians who believe that the symptoms of Lyme disease
are diverse and defy easy diagnosis and treatment. If not
caught in the initial phase, when both sides agree the
disease is highly curable, patients will require months, if
not years, of antibiotic therapy. If patients are still
symptomatic after six weeks of antibiotics, these doctors
believe they haven't been treated long enough.

On the other side are the majority of infectious-disease
researchers who develop drugs, receive research grants and
often advise insurance companies. They believe that Lyme
disease is easy to diagnose and cure. If the patient
doesn't fully recover after three to six weeks of
antibiotics, the patient is suffering from the aftershocks
of the disease, they maintain, and further antibiotic
therapy is pointless.

They believe that lingering symptoms are caused by an
autoimmune response triggered by the initial infection. And
they warn that long-term antibiotic treatment can cause
side effects such as allergies, colitis, gallstones and
liver damage, and risks creating drug-resistant superbugs.

Both sides have scores of studies supporting their
opinions. As a result, many physicians are either ill
informed or simply unwilling to treat patients, says Pat
Smith, founder of the U.S. National Lyme Disease
Association, based in New Jersey.

"Lyme-disease patients are the lepers of the 21st century,"
Ms. Smith declares. She says she has referred dozens of
Canadians who can't find treatment here to physicians in
the United States. "No one wants to treat them. Sometimes
it is just ignorance, and sometimes it's that doctors are
pleading ignorance because it's just much simpler not to
get involved."

Maureen McShane has been on both sides of the divide. Dr.
McShane lives in Montreal, but practises in Chazy, N.Y. She
was bitten by a tick in the Laurentians two years ago. By
the time she finally figured out for herself what she had,
she had already seen scores of doctors in Montreal — from
neurologists to a rheumatologist, who said her symptoms
were caused by early-stage menopause.

She admits that, before her own diagnosis, she didn't know
much about the disease or the controversy. "Honestly, it's
not that I was a bad doctor, but I didn't recognize the
signs of Lyme disease myself," she says. "When I did hear
about Lyme disease, I thought to myself, 'If only they'd
get regular exercise and eat well, they'd get better.' I
had no idea what these people were going through."

It took two years of antibiotics before she began to feel
well again.

Dr. McShane says she understands that doctors are in a
difficult position. "They know that if they prescribe
long-term antibiotics, they run the risk of losing their
reputations and their licences."

Critics charge that the medical boards in many U.S. states
have taken sides inappropriately in an argument that should
be fought in journals and at medical conferences. It is,
they claim, the insurance companies — which have huge
stakes in the outcome of the battle because they don't want
to pick up the tab for expensive long-term therapy — that
are responsible for driving the Lyme-disease agenda.

New York state assemblyman Joel Miller at first dismissed
such complaints from his constituents. "But when I began to
investigate it for myself, I found that most of the
complaints against doctors were filed by insurance
companies," he says. "It's a travesty that we've fought
years to try to correct."

Mr. Miller is one of a handful of legislators in his state
responsible for helping recently to overhaul the laws,
allowing physicians the freedom to treat Lyme disease in
the manner they feel is most effective, without the threat
of investigation by medical overseers.

Although doctors in Canada have yet to face such scrutiny,
some who are treating Lyme disease with long-term therapy
have expressed concern that they, too, will be hauled
before their medical boards.

The other major concern is that testing is still so
inaccurate. Even the U.S. Centers for Disease Control
advises doctors to use the tests only to support a
diagnosis based on patient symptoms. Health Canada says it
has no idea how precise the tests are. Some doctors believe
that the tests miss 40 to 60 per cent of true Lyme cases.

One of them was Joan McComas, a 56-year-old tenured
professor who lives in Ottawa. Like many Lyme patients, she
does not recall being bitten or developing a rash, but she
had been camping near Thunder Bay in the summer of 2000
before she came down with a flu she couldn't shake. Over
six months, her list of maladies began to multiply —
crushing fatigue, trouble with her balance, odd smells like
mothballs and dishwater detergent. The doctors were
mystified. Maybe it was a brain tumour.

Two years later, she had lost control of her body, her
limbs jerking violently every few seconds. Four years
later, she was falling backward and sideways, and
struggling to walk with two canes. "I could deal with
that," Ms. McComas says. "What I couldn't deal with was
that I was losing my ability to think. ..... I was having
trouble finding the right words. I couldn't even recognize
the faces of people I knew."

Then came a new diagnosis, of an extremely rare,
degenerative disease. The doctor told her that she had a
few years to live, and she prepared herself. A few months
later, her doctor told her that she wasn't going downhill
fast enough. Her illness, he said, was all in her head.

One spring weekend at an Ottawa drugstore, she described
her symptoms to a pharmacist. "Did you consider the
possibility of Lyme disease?" he asked. She had been
tested. A negative test in Ontario didn't mean much, he
told her. The tests produce both false positives and false
negatives.

My own doctor, infectious-disease specialist Hovsep
Baghdadlian, says that of the 125 people he is currently
treating for Lyme disease, only 10 per cent tested positive
on Ontario tests. Like me, many doctors treating Lyme
disease have turned to specialized labs in the U.S. But
some Canadian doctors are loath to recognize foreign tests.

When Ms. McComas received a positive test from a California
lab, her infectious-diseases doctor in Ottawa refused to
recognize her test results or treat her. Feeling she had no
choice, she headed to New York, spending $12,000 on medical
treatment. After a year of both oral and IV antibiotics,
she says she's more than 90 per cent better.

Should doctors prescribe antibiotics when they aren't 100
per cent certain that the patient has Lyme disease? Jim
Wilson, for one, is unequivocal: The devastating
consequences of physical, cognitive and functional
disability associated with Lyme disease far outweigh the
risks of antibiotic therapy.

For its part, Health Canada says it is working hard on Lyme
disease. It is conducting annual surveys to identify
endemic areas, and has recently committed $800,000 in
research funds to the disease. The agency's Paul Sockett
says there is a proposal on the table to meet with the
provinces this year to discuss Lyme disease.

But Mr. Wilson says it's not enough: "We are years behind
in all of this. They have done absolutely nothing in terms
of advising people of the seriousness of what's in their
backyards."

As for me, five months and a truckload of antibiotics
later, the bacterium that invaded my body appears to be
receding. My worst symptoms are now long gone. Still, soap
won't wash away the medicinal smell that permeates my skin.
My teeth are yellow from all the antibiotics. Dr.
Baghdadlian tells me that the stain will go away as soon as
I stop taking the pills.

"When?" I ask him. He shrugs and sighs. Maybe a few more
months. Maybe many more.

Still, I am lucky. I found a doctor willing to do what many
doctors would not. I am getting better. Slowly.

It's horrifying to have a disease wrest control of your
body. It's just as terrifying to struggle in vain to
convince doctors of the seriousness of your condition — or
even its existence. I managed to do both, but the most
frightening thing of all is that many victims of Lyme
disease have failed on both counts.

Lyme disease a hard diagnosis

BendBulletin.com - Central Oregon
By Kayley Mendenhall

Ashley Denham, Tom Norris and Judy Jones all have something in common.

Somewhere in their pasts, all three Central Oregon residents were likely bitten by a disease-carrying tick.

They have each been dealing with pain, neurological problems, joint aches and other symptoms for years. All three have gone through a variety of diagnoses, including multiple sclerosis, fibromyalgia and chronic fatigue syndrome.

Yet, treatments for those ailments have failed to alleviate the problems and the patients now believe they actually suffer from chronic Lyme disease, a bacterial infection transmitted through the bite of an infected tick.

Each has documented lab tests showing antibodies to the bacteria that causes Lyme disease in their blood streams. But each also has run into barriers both for receiving a diagnosis of Lyme disease and obtaining long-term treatment, because of controversies surrounding the disease within the medical community.

"It is a lot of complicated testing. The symptoms aren't very clear, which is why you see some controversy around Lyme disease and problems with physicians diagnosing it," said Shannon Dames, communicable disease coordinator for the Deschutes County Health Department. "The symptoms are not specific. There is debate about whether someone, if the testing is negative, if they could still have it."

While Lyme disease does exist in Oregon and is carried by the deer tick, also known as the black-legged tick, it is more common in the northeastern United States. According to information from the Oregon Department of Human Services, less than 15 cases of Lyme disease were reported in Oregon each year from 1999 to 2002.

In Deschutes County, Dames said, one case of Lyme disease was confirmed in 2004. But, she said, many people who are bitten by infected ticks do not show acute symptoms of Lyme disease.

Those symptoms can take weeks, months and even years to surface. At that point, Dames said, Lyme disease is much more difficult to diagnose and treat than when it is caught early.

Life-altering symptoms

Ashley Denham, 18, remembers being bitten by a tick on the top of her head when she was camping with her family at the age of 6.

She scratched the tick off herself before showing it to her mom.

"I told her, 'If you scratch it off and you don't pull it off properly, you could get Lyme disease,'" Theresa Denham said she remembers telling her young daughter at the time.

Soon after the camping trip, Ashley developed a fever and a rash that covered her body. She became lethargic and complained of severe knee and ankle pain. Her physicians were stumped about the cause. The family was told her problems could be as simple as growing pains, Theresa Denham said.

Ashley went through a period where she experienced heart problems; she also developed neurological disorders and would have seizures. She had nose bleeds, was sensitive to light and to noise.

"It's been a long history of hell," Theresa Denham said. "During this time, Ashley was tested for everything you can imagine."

At the age of 14, Ashley's blood was tested for antibodies to Borrelia burgdorferi, the bacteria known to cause Lyme disease. She has since had six different blood tests confirming the presence of the bacteria and other tick-borne infections in her blood stream.

Although she has been treated with antibiotics - the standard course of treatment for Lyme disease - Ashley still suffers from some of the debilitating symptoms.

"My legs hurt really bad," Ashley said. "It feels like an ice-cold rod shooting up the inside of my leg. It feels like it's right in the middle of the bones."

Because Ashley has already had oral and intravenous antibiotic treatments, her family's health insurance carrier has denied further antibiotic therapies.

"Lyme patients can't get treatment," Theresa Denham said. "What makes me sad is that we've been going through it for 10 years and I don't feel a whole lot has changed."

A network of others

The Denhams founded the Oregon Lyme Disease Network two years ago in an effort to support other families struggling with the disease and to provide a place where information could be shared.

Since then, the family has realized that Ashley is not alone in her fight. The network has more than 100 members, Theresa Denham said, many of whom have left the state seeking Lyme disease treatment from specialists in California and on the East Coast.

Tom Norris, 47, said he has spent the past seven years in a wheelchair and believes he was infected with Lyme disease at least 17 years ago, although he lived with a diagnosis of multiple sclerosis until just a few years ago. He takes muscle relaxers and hopes to start using natural remedies, including herbs, to ease his muscle spasms so he can stop taking the drugs.

"That's basically where I'm at because I've exhausted everything else," Norris said.

After finally receiving his diagnosis of Lyme disease from specialists in New York, Norris said he was treated in Bend for Lyme disease for two months. When the symptoms continued, Norris traveled to California to try experimental hyperbaric treatments, which were not covered by his insurance company.

The treatments, which attempt to purify the body by flushing it with oxygen, worked well for Norris. He was able to stand and walk with a walker for the first time in years, but at more than $100 a day, he couldn't afford to continue hyperbaric therapy.

"It got to the point where we just couldn't afford it anymore," Norris said. "I was so close, so close, it was awesome."

Judy Jones, also 47, lives in Sisters with her parents because her physical problems are so extreme that she can't take care of herself. She first got sick at the age of 25, she said, but believes she could have been infected with Lyme disease as early as the age of 12.

"I have excruciating pain in the joints ... the bottoms of my feet hurt," Jones said. "I have some motor-control problems. I tend to run into things and I drop things a lot. I get fevers. The other big one is the cognitive symptoms. I get confused very easily. I'm forgetful."

Ashley, Norris and Jones all say that antibiotic treatments helped relieve symptoms for a while, but once the treatments ended, the symptoms returned. They all agree that being cured is unlikely.

"I would never give up hope," Jones said. "I do a lot of work, not only with the medications that I take, but also following a healthy diet. Psychologically, I'm doing everything I can to promote my healing. Having Lyme disease as long as I have, my doctor says it's a miracle that I'm alive."

Chronic versus acute

When a person is bitten by a tick and a red rash in the shape of a bull's-eye appears at the site of the bite, it's fairly easy to diagnose an acute Lyme disease infection, said Dr. Philip Parshley, medical director of the Oregon Board of Medical Examiners.

In that case, the patient would be treated with a short course of antibiotics lasting a few weeks and, the Lyme disease would be cured, Parshley said, although he pointed out he is not a Lyme disease expert.

"The signs and symptoms of the acute case are fairly easily identified. They are not always present, but when they are, most people are easily cured by antibiotics," Parshley said. "Some people, with a delayed diagnosis ... will have residual symptoms, even after aggressive treatments."

The trademark bull's-eye rash from a tick bite only appears in roughly 60 percent of Lyme disease cases, according to the Oregon Department of Human Services. The rash is typically located at the site of the bite, although it can show up in other places on the body, and it is usually noticed within a few weeks of a tick bite.

Some patients never develop a bull's-eye rash and they may never know they were bitten by a tick, Dames said. The black-legged tick that is most often responsible for causing Lyme disease spreads the bacteria most easily in its nymph stage, when it is very small.

"Someone might be bit and not realize they were because (the ticks) are actually quite small," Dames said. "Someone can carry Lyme for many years, exhibit mild symptoms and never get treated because they think it's arthritis."

The symptoms of Lyme disease, including fatigue, joint pain, muscle pain and spasms, are similar to symptoms for many other diseases, Dames said. In order for patients to be considered presumptive Lyme disease cases under Centers for Disease Control guidelines, they must either have the bull's-eye lesion or a positive blood test for Lyme, along with a symptom that can be linked to the disease.

But, as Ashley, Norris and Jones have found, even documenting those factors may not be enough to treat and cure chronic Lyme disease.

At that stage, Parshley said, a cure may simply not be possible.

"Some of these residual symptoms are difficult to identify if they came from the Lyme," he said. "That type of a situation is difficult to deal with medically. There may be a question of whether there is any treatment."

2005 UK Conference Transcript

Notes from the 2005 Lyme Disease Action Conference held in Sheffield, U.K. are now available at:

http://www.lymediseaseaction.org.uk/conf2005/transcripts.htm

For transcripts from previous conferences, see:

http://www.lymediseaseaction.org.uk/conference.htm

Thursday, August 18, 2005

Lyme Disease Hits Home

Town Times
By Stacy Troiano

Initially discovered 30 years ago in Lyme, Connecticut, Lyme disease has not only continued to affect lives, but it has become a widespread epidemic in the northeast almost without residents knowing. Stories about West Nile virus and encephalitis are taking over front pages everywhere, while Lyme disease flies under the radar. Doctors and citizens alike need to become more aware of this rampant, debilitating illness.

Lyme disease is reported worldwide and throughout the United States, but the states of New York, Massachusetts and Connecticut account for the majority of the cases. It is a bacterial infection caused by a spirochete form of bacteria known as Borrelia burgdorferi, and it is transmitted to animals and man through the bite of infected ticks. The tick usually responsible for transmitting the disease in northeastern United States is the black leg tTick, also known as the deer tick, however, there is growing evidence that there may be other vectors of transmission besides this isolated type. A tick bite is painless, so most victims do not know they've been bitten, which allows the tick to remain attached long enough to spread its infection.

In about 50 percent of Lyme disease cases, a characteristic bull's eye rash appears around the site of the tick bite after a few days, but it's very important to understand that even if a rash does not appear, it does not mean there is no Lyme infection; the rash is just one symptom. Other common symptoms of the beginning stages of Lyme disease include flu-like symptoms, headache, sore throat, stiff neck, fever, muscle aches, fatigue and general malaise. If left untreated, later stages of Lyme disease can cause complications such as arthritis, meningitis, facial palsy, heart abnormalities and other neurological symptoms. Heart, eye, respiratory and gastrointestinal problems can also develop.

"There is not a person who I've met in Durham that doesn't either have Lyme disease or know someone closely who has it," said Sandra Ulbrich of Durham, who has been infected with Lyme disease for 16 years. I had a chance to talk to Sandra about her journey through the disease, and I was totally taken by her story. In 1989, Sandra began feeling ill, and her records read like a classic Lyme patient with throbbing headaches, fatigue, swollen glands and problems with her right shoulder and right hip. At that point doctors medicated her, but they didn't know what it was.

Two years later, Sandra was not only uncured, but she was feeling progressively worse with severe fever added to her growing list of symptoms. She was put on different medications, but doctors still could not tell what it was. She began to have pain all over her body which kept getting worse until it became diffuse achiness everywhere. Some doctors ventured that she suffered from depression or chronic fatigue, but Sandra was not buying it. In 1992, she tested positive for Lyme disease, but the "specialist" at Yale told her she was not positive enough and insisted she didn't have it.

As time went on for Sandra, the infection continued to bring out more and more symptoms including intestinal problems and intense dizziness. She began feeling what she described as lightning bolt shockwaves going into her brain, and she saw a neurologist who also was stumped.

The late stages of Lyme disease wreak havoc on the brain. Sandra went in for a brain biopsy about one and a half years ago, which found a demyelinating lesion in her right parietal lobe. Doctors still were avoiding a Lyme disease diagnosis. Some doctors thought it was cancer, others said maybe she had a stroke, and still others thought it could be multiple sclerosis because of bacterial similarities. Sandra had done her reading on the subject, and with help from her sister who is a doctor herself, she was nearly certain that the other diagnoses were incorrect, and the cause was actually Lyme disease that had now manifested itself in the brain.

The hyperfusion and encapsulated lesion in her right parietal lobe would require brain surgery for Sandra, and at the time she entered the hospital she could not raise a finger or a toe on her left side; it was completely dead. "This was devastating to me. I'm a trained classical pianist. Music is a very big part of my life, and now I couldn't use my left hand," she said. Sandra's new doctor wanted to see all of her records, including any tests given for Lyme disease, from years ago when the symptoms began. The doctor who had performed the test and had deemed Sandra "not positive enough" claimed that he no longer had records from that long ago. Sandra was not satisfied. She persisted and called the doctor's secretary who informed Sandra that she did indeed find her records, including the positive Lyme test. After about 12 years, Sandra was finally diagnosed correctly.

"I wanted to talk about Lyme disease not for myself because the damage is done, but I want people, especially in this area, to be aware of what an epidemic it's become and what it can do to a person," Sandra said. Connecticut has one of the highest infection rates for Lyme disease in the country, and misdiagnosis and proper treatment are clearly a problem. "Any kind of fever, any kind of aches and pains, any stiff neck or headaches, do not let doctors tell you its depression or chronic fatigue or anything else. Investigate Lyme. Get on some antibiotics." Sandra also stressed that the most important thing to remember if you are possibly infected with Lyme is that the tests are not always reliable. Clinical symptoms are the only way to truly tell whether or not the disease is there.

"I was very lucky to have such amazing support from my family. I just want to use my experience to make people aware. That's the most important thing. Just be aware that it does happen, and in this area almost everything carries it. There's no such thing as being too cautious," Sandra said.

There's no way to be completely impervious to a tick bite, and not all deer ticks carry Lyme, but there are precautions to take that will greatly lessen your chances of being infected. Always inspect yourself for ticks whenever you have been outside. Wearing lightly colored clothing will make it easy to see any ticks that may have attached themselves. Wash and dry clothes to kill any remaining ticks. Clear brush from any yard area and keep grassy areas mown. And most of all, wear insect repellent, preferably with Deet. If a tick is found on the body, immediately remove it. To safely remove a tick, grasp the mouth of the tick with tweezers as close as possible to the attachment site, being careful not to squeeze or puncture the body of the tick, which may contain infectious fluids. More information on Lyme disease can be found through the International Lyme and Associated Diseases Society (ILADS).

After being able to talk extensively with Sandra Ulbrich, I found myself very engrossed in her story. Here is a woman who had suffered from nearly every single symptom of Lyme disease, and is now doing everything she can to inform other people. I started reading many articles, researching anything I could find about Lyme disease, and telling a number of people about what an amazing person I had met in Sandra; I couldn't stop thinking about her story. When I was leaving her house after we had talked, she told me that if she could affect even one person and make them become more conscious of the widespread problem of Lyme disease around here, then she would be happy. I hope I am the first of many.

One last gift

Old Colony Memorial
John Martini died too soon, with too much left to give. At 55, he was an active, enthusiastic citizen of his adopted hometown. He valued Plymouth's woods and wild places, and gave hours of his time to try to preserve and protect them. He believed passionately in the importance of planning to manage growth intelligently.

Ironically, his family suspects he died of complications caused by Lyme disease, probably picked up in the woods or gardens he loved.

They're giving one more gift to the town, a warning to be aware of Lyme disease, and a hope that somehow Martini's untimely death will contribute to greater understanding of the tick-borne disease.

Tiny deer ticks carry the disease, so tiny that it's nearly impossible to spot them. While people generally know about the bull's-eye rash an infected tick's bite can cause, the rash doesn't always appear.

Lyme disease is all too common in this area. Ticks can be picked up on lawns and in gardens, on golf courses as well as in the woods. They're found in grassy, brushy and wooded places, and they're prevalent in Plymouth and other local towns in southeastern Massachusetts.

Insect repellent, preferably one containing DEET, is the first line of prevention. The next is to try to check for ticks daily, but that's not easy since the ticks most likely to be infected are only about the size of a poppy seed. Ticks have to be attached for at least 24 hours to infect anyone.

Be aware of the symptoms. The classic rash is a clear signal, but the rash doesn't always appear in the classic shape, or at all. Some of the other symptoms can mimic flu. They often clear up, even without treatment, but the person remains infected and more serious problems can develop later.

The ticks are most active from late May to early fall.

Plymouth residents can't live their lives in fear of tiny ticks, any more than they can live their lives in fear of mosquitoes because eastern equine encephalitis has been detected in neighboring Kingston. Ticks carrying Lyme disease and mosquitoes carrying EEE are part of our environment.

John Martini knew that growth is part of Plymouth's future, just as surely as there are ticks in its grass. He also knew it just isn't possible to slam the door and stop the clock from ticking. He believed in planning ahead. He believed in managing growth, in steering it to the appropriate places while preserving others. He was on the committee that helped persuade local voters to adopt the Community Preservation Act. He also served on the committee that put together the town's new master plan.

During his life, he reached out enthusiastically for new subjects to learn about, and even brand new occupations. He's the last person who would respond to the threat of Lyme disease by hiding indoors.

Instead, he would probably try to find out everything he could about it, and figure out a plan to deal with it.

That's an example we can all learn from.

Tuesday, August 16, 2005

Gabapentin for the Symptomatic Treatment of Chronic Neuropathic Pain in Patients with Late-Stage Lyme Borreliosis: A Pilot Study

Department of Dermatology and Allergy Biederstein, Technical University of Munich, Munich, Germany
Background: Chronic neuropathic pain occurs in 10-15% of patients with neuroborreliosis and is difficult to treat. Objective: We evaluated the effect of gabapentin monotherapy on residual pain in patients with neuroborreliosis after intravenous ceftriaxone treatment.
full abstract

Saturday, August 13, 2005

He touched everyone he met

Old Colony Memorial - PLYMOUTH
By Daniel Axelrod
MPG Newspapers

Former Plymouth conservation agent John Martini faced his first obstacle at six months old when his parents left him on the doorstep of St. Mary's Home in Binghamton, N.Y.

Raised by nuns until he was 18, Martini moved out and worked as a cab driver in Boston, where he paid his way through UMass-Boston and earned a bachelor's degree in political science and American history.

After two marriages, two children, a career teaching high school, and running a landscaping business, Martini died July 24 at age 55.

Joni, his wife of 19 years, suspects her husband died of Lyme disease.

His death was unexpected and relatively sudden, and the official cause remains unknown pending numerous tests.

Martini left behind his daughter Julie, 30, his son Jeffery, 27, a massive backyard garden of exotic plants and a legacy of being a vibrant, outgoing, sociable, kind, generous, optimistic, and loving man, according to friends and family.

Reaching out to everyone

Joni Martini still has the thank you letters from John's former Falmouth junior/senior high school students tucked away in a folder.

"Students sent letters saying they were sorry to see him go. They liked his sense of humor," Martini said.

"He used to have some students who stayed in touch for years at a time. Even after they'd move to different states they'd call and ask him for advice."

Wherever he worked and whatever he did, Martini made a lasting impression.

"He was a family guy, warm, caring and wonderful, and he made you feel very special," Michelle Turner, administrative assistant for Plymouth's Conservation Commission, said.

Turner worked closely with Martini during his days as a part-time conservation agent for Plymouth.

Turner said staffers knew when the bubbly Martini came in the town offices because he filled the room with a cheerful vibe and chitchat.

Turner is Italian, and Martini used to kid her in Italian, discuss Italian food and talk about Italy.

"You felt like you were a part of him when you spoke with him," Turner said. "Everyone misses his personality. I still have a picture of him on my desk. I look at it all the time."

After graduating among the top 5 percent of his class at UMass in 1972, Martini cultivated his love of cooking by working as a chef for a nursing home in Falmouth.

He married Christine Beaulac, with whom he had his two children.

Martini spent the next 13 years working, mostly as a chef, and raising his children Jeffrey and Julie. He won custody of the children in 1980, after a long divorce.

Now a single parent, he was partly led to teaching by his need to make more money. He went back to school at Southeastern University to earn his teaching certificate and began teaching history for the Falmouth school district in 1985.

Martini again graduated from Southeastern magna cum laude, among the top 5 percent of his class.

At SMU in the mid '80s, John focused on another lifelong passion - learning about New England's Native American clans.

Joni still occupies the couple's Plymouth house, where visitors will see a bookcase, built by John, full of perhaps 400 books on Native Americans - just a sample of what he read.

Back when John was in school, he visited the Falmouth Christmas Tree Shop just to catch a glimpse of Joni, a fellow divorcee "he had the 'hots' for," Joni said.

Coincidentally, Joni's sister, Barbara Beltran, and Martini earned their teaching degrees at the same time.

Barbara liked Martini - who had no idea she was Joni's sister - so she gave him Joni's phone number.

John's random phone call to Joni one day led to a six-hour conversation, a follow-up date to the movies, a six-month courtship and marriage.

"You know how people say they have a soul mate?" Joni said. "There was just something that clicked there. We both were interested in the same things and it wasn't awkward to talk."

Martini got a job at Falmouth schools, where he worked for three years before moving to Cornwall, Vt. in search of a wholesome life and good schools for his beloved children.

John taught for a time in Vermont and the family became self-sufficient farmers.

No flatlanders (except John)

"Usually Vermont natives call newcomers flatlanders and it takes a while to fit in, but John fit right in," Joni said.

Martini fit in so well that Cornwall's 1,000 or so residents voted the newcomer onto the board of selectmen.

When the family arrived, they settled in after buying 25 acres and a three-bedroom contemporary home renovated by John after he studied carpentry on his own.

The family grew crops, tended chickens and heated the house with wood John split and burned in wood stoves.

Joni raised the kids and, while they were in school, worked at a general store where she got to know community members.

One day, residents at the store suggested Joni tell John to run for the board of selectmen. At first he dismissed her suggestion, but soon John delved into campaigning.

He loaded hand-painted signs into his big old white Oldsmobile, drove around town and shook hands and chatted with everyone he met.

The newcomer with no political experience won the local election by a landslide against an incumbent town leader.

Martini's time as a Cornwall selectman was the beginning of a long life of community service as a teacher and member of various boards and committees in the communities where he lived.

Martini also taught from 1987 to 1989 at Otter Valley Union High School in Brandon, Vt., where he established an alternative education program for disadvantaged and disaffected students, just as he'd done at Falmouth.

Martini even helped start a reading program and aided in the development of the state's Educational Reform Act.

All along, though, a love of the earth grew deep within him. No longer content just to foster his student's academic and personal growth, he went to school to become a landscaper.

After Martini learned landscaping, the family moved to Plymouth. He had lived here briefly and loved the town, and Joni wanted to be closer to her family in Falmouth.

Making his mark on Plymouth

Besides his Vermont community service, Martini served on Plymouth's master plan committee, the downtown steering committee and two different economic development committees and as a town meeting member.

He was a long-time Mason, a part-time conservation agent for Plymouth and even a tutor for those who couldn't read.

Speak with those who knew or loved Martini and you'll find a recurring theme - not only did John do everything he could to get to know people, he couldn't stand pat if he saw something in the community needing fixing.

"He meant a lot to many of us for different reasons," friend and planning board member Larry Rosenblum said. "John was concerned about the community and also a great cook, a great gardener and you got the sense he was a shepherd tending to his flock with everything."

Rosenblum was shocked when Martini recruited him to run for the planning board.

"Usually the candidate picks the campaign manager, here the campaign manager picked the candidate," Rosenblum said.

Rosenblum remembers one day when Martini drove past the synagogue on Pleasant Street downtown and noticed the lawn's beat-up appearance.

Martini wasn't Jewish.

"But he said to the Rabbi, 'It looks like the garden needs tending,' and he volunteered to do that," Rosenblum said.

Martini's landscaping business, Alden Court Gardens, is still owned by his wife and operated by 24-year-old Jeff Parsons and his assistant, who serve 40 to 50 clients.

"John was never afraid to learn something new or different, and I think that's what made him so successful," Joni said. "If you spoke Polish he'd go out and try to speak Polish."

The Martinis' house is decorated with Native American artifacts from John's travels.

Outside, John's second passion is quickly evident in the form of the sprawling garden with red pine needle-covered walkways, through which John would walk potential customers to help them plan their gardens.

"His knowledge of plants was amazing, and he knew all the Latin names. Sometimes I had to say 'Speak English, John,' " Turner said. "And as conservation agent his rapport with people in the field was special."

Even Martini's kids are excelling in life. Julie works for the Massachusetts Cultural Council on Arts and Jeffery is doing his graduate work at Georgetown University.

After a stint working for the conservative think-tank Rand Corporation, Jeffery is studying Arabic.

The end: fast and frightening

The end for John Martini was fast and frightening.

Martini contracted the deer tick-transmitted Lyme disease last August and the tell-tale big bull's-eye rash appeared on the upper inside of his right leg complete with a hard egg-like lump.

Two months of antibiotics followed and the disease seemed to go into remission.

Subsequent Lyme disease tests showed up negative.

But by February John felt tired all the time. His face was puffy and his eyes were often half-closed.

The muscular 5-foot, 6-inch 150-pound landscaper became weak and lost muscle strength.

He hired assistants to help with his business and took naps during the day between landscaping jobs.

"The doctors had no clue what was going on, and every part of his body hurt," Joni said. "John seemed to feel it was still the Lyme disease, but the doctors said it wasn't and testing didn't show it."

By June, John was hospitalized at Jordan Hospital for a week with the mysterious ailment.

He seemed to feel better and he came back home, but, by early July, Martini was back in the hospital and sicker than ever.

"On July 3, I took him to the Jordan ER and he could hardly walk, his heart was racing, and we were so very scared," Joni said. "We didn't know if he was having a heart attack."

The hospital admitted him, ran more inconclusive tests and on July 9 sent him to Massachusetts General Hospital in Boston.

He died about two weeks later after a steady stream of inconclusive tests and antibiotics, but not before he got to know all the doctors and nurses on the floor.

He spent his last days sleeping, reading the novel "The Da Vinci Code" and dipping his hands in the soil of a plant a friend brought him.

The hospital is still running tests on his body to confirm whether Lyme disease was the culprit.

Joni suspects Lyme disease killed her husband, who lived a healthy life up until he was diagnosed with the disease last August.

"He was always positive and he thought he'd get better when he got sick," Joni said. "I'm still in shock. It's still hard to believe that he's gone. I just miss his voice and his laughter. He had a very good sense of humor, he joked a lot, he was silly and he used to like to tell and play practical jokes."

Martini hopes the doctors pinpoint what killed John, and most of all she wants the public to somehow learn from John's death. (See sidebar)

She thinks John "would be honored" if his body is used to help fight Lyme disease.

"I told the doctors if there's anything in his body that can help the next person that comes along, so they don't have to suffer like he did, I hope they find it, because I still have to live with the fact that, if they don't find anything, I just won't know what killed him."

Friday, August 12, 2005

Lyme Microbe Forms Convenient Bond With Tick Protein

RedNova
INFECTIOUS DISEASES
Tests in mice indicate that the bacterium that causes Lyme disease can commandeer a gene in its interim host-the deer tick- enabling the bacterium to escape immune detection once inside a mammal.

Researchers at Yale University report in the July 28 Nature that the Lyme microbe, Borrelia burgdorferi, activates a gene in the tick, boosting production of a salivary protein called Salp-15.

Conveniently for the bacterium, it can bind to this protein, Yale microbiologist Nandhini Ramamoorthi and her colleagues note. When a tick bites a person or another mammal, the Salp-15-coated bacteria enter through the skin, she says.

The coating apparently renders B. burgdorferi at least partially invisible to mammalian immune cells, she says. That buys precious time for the microbes to multiply in the skin and then spread to other organs. In persons with advanced Lyme disease, the bacteria cause nervous system and joint damage.

It remains unclear how B. burgdorferi activates the tick gene encoding Salp-15 or why the immune system doesn't detect the microbe once it's coated, Ramamoorthi says.

If scientists can devise antibodies to Salp-15, they might be able to stop B. burgdorferi from inflicting any harm beyond the site of the bite, she says. -N.S.

Lyme Disease Organization Forms Scientific Advisory Board and Invites Grant Applications

WILTON, Conn. - PRNewswire
The National Research Fund for Tick-Borne Diseases, Inc. (NRFTD) announces the formation of a scientific advisory board. Its distinguished researchers will support the organization in its mission to advance scientific understanding of tick-borne infections -- including Lyme disease -- by funding research of the highest caliber. Scientists interested in researching these complex but poorly understood public health threats are invited to submit grant applications.

Estimated to affect as many as 54% of households in some communities, Lyme disease case reports doubled from 1991 to 2000, then rose a dramatic 40% between 2001 and 2002. Now, other tick-borne diseases such as babesia and ehrlichia are emerging as serious risks in many areas. Children, who spend much time outdoors, are especially vulnerable. Lyme disease was only recognized in 1975; several other tick-borne illnesses were acknowledged even later. As a result, scientific understanding is still extremely limited, leading to diagnostic and treatment confusion.

"Patients and physicians alike are often overwhelmed by the uncertainty surrounding these issues, which can lead to significant quality-of-life and financial implications for victims as well as families, schools, employers and society," states Catherine F. Morrissey, NRFTD Research Board Chair. "Recognizing the urgent need to understand and cure tick-borne diseases, the NRFTD and its superb team of scientific advisors will fund the finest investigators and academic centers in the world."

About the NRFTD Scientific Advisory Board

The NRFTD's scientific advisory board (SAB) consists of leading researchers from across the United States. The SAB advises the NRFTD on research objectives while maintaining strict standards in grant selection. In particular, the SAB has established a rigorous application and review process that confirms the NRFTD's commitment to excellence as well as its desire to advance scientific knowledge as quickly as possible. The SAB works to ensure that broad segments of the research community become aware of the NRFTD's activities and goals, opening doors to vast areas of scientific study that must be investigated.

About NRFTD Research Grants

NRFTD grants will be awarded to investigators whose projects demonstrate the potential to attract long-term funding by the National Institutes of Health (NIH), the National Science Foundation (NSF), or other scientific or biomedical agencies. The NRFTD is guided by its desire to transform scientific discoveries into tangible results, such as publication in peer-reviewed medical journals and presentations at scientific conferences.

The current offerings will be funded for either one or two years and carry a maximum direct cost of $50,000. Scientists who wish to perform innovative pilot project research on any aspect of established or emerging tick-borne diseases -- including those caused by Lyme disease and relapsing fever borrelia, anaplasma, babesia, bartonella and ehrlichia species, and their tick vectors -- are invited to apply.

The deadline for applications is 5:00 P.M. EDT on September 1, 2005. The grant application can be found at www.nrftd.org.

About the National Research Fund for Tick-Borne Diseases, Inc.

The NRFTD is a nonprofit organization devoted to funding scientific research in the rapidly expanding field of tick-borne diseases. It is determined to advance scientific understanding of these complicated infections by sponsoring innovative research of the highest quality at premier institutions throughout the world.

The NRFTD was founded in 1999 to address the complex and critical research questions raised by thousands of patients afflicted with emerging tick-borne diseases.

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