Hi everyone,
A new video informs us that the blood supply is being checked for Lyme disease and Babesia. The direct link to this video is http://www.kare11.com/video/default.aspx?bctid=969796885001.
This is an interesting video and certainly is proof positive that Lyme disease and associated diseases are getting more attention. Thanks to KARE 11 television station in Minneapolis-St. Paul for this great piece.
Be well,
Richard
Showing posts with label Lyme disease testing. Show all posts
Showing posts with label Lyme disease testing. Show all posts
Tuesday, May 31, 2011
Wednesday, February 17, 2010
Efforts to educate the Public about Lyme disease
Hi my friends,
Below is a great article about how one couple's experience with Lyme disease is being used to educate people in their community about Lyme disease. A piece of legislation has been created to promote awareness of Lyme disease. I think you will enjoy this article!
Be well,
Rick
Begin quotation:
By Laura Dolce
ldolce@seacoastonline.com
February 11, 2010 2:00 AM
KENNEBUNK — The number of Lyme disease cases in Maine tells a story of its own: the reported cases in York County jumped 62 percent between 2007 and 2008, with the increase statewide climbing an astounding 645 percent between 2000 and 2007.
Those numbers prompted state Rep. Ed Legg, D-Kennebunk to sponsor LD 1709, a bill created to foster better awareness of the disease that has already garnered bipartisan support.
What is Lyme disease?
• Lyme disease is transmitted by the bite of a tick, and the disease is prevalent across the United States and throughout the world. Ticks know no borders and respect no boundaries. A patient's county of residence does not accurately reflect his or her Lyme disease risk because people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure to Lyme disease for each individual.
• Lyme disease is a clinical diagnosis. The disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia burgdorferi. The Lyme spirochete can cause infection of multiple organs and produce a wide range of symptoms. Case reports in the medical literature document the protean manifestations of Lyme disease, and familiarity with its varied presentations is key to recognizing disseminated disease.
• Fewer than 50 percent of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15 percent in culture-proven infection with the Lyme spirochete.
• Fewer than 50 percent of patients with Lyme disease recall any rash. Although the erythema migrans (EM) or "bull's-eye" rash is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the EM rash is pathognomonic of Lyme disease and requires no further verification prior to starting an appropriate course of antibiotic therapy.
Source: The International Lyme and Associated Diseases Society
Tips for preventing tick bites, courtesy of Joanne and Barry Tibbetts:
• Wear light clothing when outdoors, which will make it easier to spot a tick.
• Don't assume a trip to the mailbox is safe - ticks can be found almost anywhere.
• Be vigilant when working with purchased mulch, or when doing other yard work.
• Don't assume since the tick hasn't been attached long that you can't get Lyme. You can.
• Protect yourself with DEET-based sprays and your pets with products such as Frontline.
• Keep your yard well mowed to avoid high grasses where ticks like to hide.
• Educate yourself about Lyme disease and its symptoms.
Video:
But the numbers only tell part of the Lyme disease story. It's the people affected by the disease who bring those numbers to life, one story at a time.
Joanne Tibbetts is one of those people. The Scarborough mother of three daughters and wife to Kennebunk Town Manager Barry Tibbetts first got bitten by a tick 15 years ago when looking at houses in Alfred.
"I had no bulls-eye rash," she said. "I looked on the CDC site and I was told I had nothing to worry about."
As time went by, though, Tibbetts started to experience what she described as migrating arthritis and joint pain. Then, 10 years ago, after the family moved to Scarborough, things began to change.
"I had tremendous back pain," she said.
And worse yet was the fatigue.
"I was sleeping most of the day," she said.
As the mother to three active daughters, Tibbetts tried to find ways to work around the exhaustion. If she had to drive the girls somewhere, she would bring a pillow and a blanket and nap in the car once she got there. But as much as she tried to work around her health problems, it was clear she was struggling.
"Just being out in the garden was a big deal," her husband said. "We would try to walk a third of the way around the house and I would have to almost carry her back."
Tibbetts could barely make it to the end of the driveway without collapsing. For nine months, her husband said, she wasn't strong enough to walk to the end of their street. And the problems weren't only physical.
"I had a lot of difficulty with word retrieval," she said. "Cognitive problems."
Her doctor told her she was pre-menopausal, she said, that these things were natural as a woman got older. But Tibbetts knew better. A 2006 Lyme test showed some evidence of the tick-borne disease, but was still considered negative by Centers for Disease Control and Prevention standards. Still, it was enough to give Tibbetts some idea of what she was battling.
The Tibbetts searched for a Lyme specialist and eventually found one who was a clinical assistant research professor at Yale and a board certified neurologist. It cost them $900 for a two-hour visit and testing. But at the end of the visit, Tibbetts' tests were sent to Stony Brook University in New York and the results gave her the answer she was looking for: Lyme disease.
Today, Tibbetts is back to being able to take hikes and lead an active life, though vestiges of the disease remain. To reach this point, though, the family has spent tens of thousands of dollars of their own money to pay for extended antibiotic therapy, additional testing and homeopathic herbal remedies that Tibbetts has administered by a practitioner here in Maine.
They've educated themselves so thoroughly on the disease that when Barry Tibbetts was bitten by a tick in 2006 and began to exhibit symptoms over the next few years — despite a negative Lyme test — they knew they had to look beyond that initial test for an answer.
Barry Tibbetts had a Western blot test, which measures your body's response to certain antigens in the bloodstream. While the CDC mandates that a patient has to have five out of six particular bands on the test for a diagnosis of Lyme, his doctor saw enough in the results to conclude that he, too, had the disease.
The Tibbetts' story is all too familiar to Kennebunk's Linda Pearson. She, too, had a tick bite 17 years ago on Martha's Vineyard and was vigilant in watching for a bulls-eye rash that never came. Months later she was talking to a woman at a party about the extreme pain in her knees when the woman asked, "Have you ever been checked for Lyme?"
Pearson was, and after a positive test, went on antibiotics for a month. But once she stopped the medicine, her symptoms came back. She would repeat this pattern of treatment followed by a re-emergence of symptoms over the next several years, through a move to Maine and raising her sons. The pain — in her neck, in her legs — was bad, but she said the "brain fog" she experienced was even worse. And worse yet, she saw the same symptoms in her kids.
Today, Pearson said the family is working with an osteopath and taking Chinese herbal remedies and focusing heavily on their nutrition.
"We're doing a lot of immune-building things," she said, adding that while antibiotics fight the bacteria, it often goes dormant, only to strike again a few months later. Building the immune system, she said, gives you one more layer of protection of the disease.
Joanne Tibbetts said she, too, has discovered the same thing. She said everything from probiotics, thyroid medication and hormone therapy can be used to treat Lyme — if it's properly diagnosed.
Between the recurring nature of long-term Lyme and its ability to mimic other illnesses, from Chronic Fatigue Syndrome to fibromyalgia, it can be a hard disease to diagnose and treat.
That's why both Tibbetts have spent time in Augusta recently, speaking out on behalf of Legg's bill. Legg himself said he feels the bill, which will name May as Lyme disease awareness month in Maine and change some local protocols for reporting and detection, will be a good first step in bringing more Lyme awareness to Maine.
"It's a big step forward," he said, "but it doesn't settle the issue of how to treat long-term Lyme."
The scientific community is still divided on that, Barry Tibbetts said, both inside Maine and around the country. But while that debate rages on, the Tibbetts said they at least feel like they're doing their part to educate others that Lyme has come to Maine to stay. It's a lesson they had to learn the hard way.
"This is not the world we lived in 15 years ago," Joanne Tibbetts said. "Don't assume you're safe."
End quotation
Below is a great article about how one couple's experience with Lyme disease is being used to educate people in their community about Lyme disease. A piece of legislation has been created to promote awareness of Lyme disease. I think you will enjoy this article!
Be well,
Rick
Begin quotation:
By Laura Dolce
ldolce@seacoastonline.com
February 11, 2010 2:00 AM
KENNEBUNK — The number of Lyme disease cases in Maine tells a story of its own: the reported cases in York County jumped 62 percent between 2007 and 2008, with the increase statewide climbing an astounding 645 percent between 2000 and 2007.
Those numbers prompted state Rep. Ed Legg, D-Kennebunk to sponsor LD 1709, a bill created to foster better awareness of the disease that has already garnered bipartisan support.
What is Lyme disease?
• Lyme disease is transmitted by the bite of a tick, and the disease is prevalent across the United States and throughout the world. Ticks know no borders and respect no boundaries. A patient's county of residence does not accurately reflect his or her Lyme disease risk because people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure to Lyme disease for each individual.
• Lyme disease is a clinical diagnosis. The disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia burgdorferi. The Lyme spirochete can cause infection of multiple organs and produce a wide range of symptoms. Case reports in the medical literature document the protean manifestations of Lyme disease, and familiarity with its varied presentations is key to recognizing disseminated disease.
• Fewer than 50 percent of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15 percent in culture-proven infection with the Lyme spirochete.
• Fewer than 50 percent of patients with Lyme disease recall any rash. Although the erythema migrans (EM) or "bull's-eye" rash is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the EM rash is pathognomonic of Lyme disease and requires no further verification prior to starting an appropriate course of antibiotic therapy.
Source: The International Lyme and Associated Diseases Society
Tips for preventing tick bites, courtesy of Joanne and Barry Tibbetts:
• Wear light clothing when outdoors, which will make it easier to spot a tick.
• Don't assume a trip to the mailbox is safe - ticks can be found almost anywhere.
• Be vigilant when working with purchased mulch, or when doing other yard work.
• Don't assume since the tick hasn't been attached long that you can't get Lyme. You can.
• Protect yourself with DEET-based sprays and your pets with products such as Frontline.
• Keep your yard well mowed to avoid high grasses where ticks like to hide.
• Educate yourself about Lyme disease and its symptoms.
Video:
But the numbers only tell part of the Lyme disease story. It's the people affected by the disease who bring those numbers to life, one story at a time.
Joanne Tibbetts is one of those people. The Scarborough mother of three daughters and wife to Kennebunk Town Manager Barry Tibbetts first got bitten by a tick 15 years ago when looking at houses in Alfred.
"I had no bulls-eye rash," she said. "I looked on the CDC site and I was told I had nothing to worry about."
As time went by, though, Tibbetts started to experience what she described as migrating arthritis and joint pain. Then, 10 years ago, after the family moved to Scarborough, things began to change.
"I had tremendous back pain," she said.
And worse yet was the fatigue.
"I was sleeping most of the day," she said.
As the mother to three active daughters, Tibbetts tried to find ways to work around the exhaustion. If she had to drive the girls somewhere, she would bring a pillow and a blanket and nap in the car once she got there. But as much as she tried to work around her health problems, it was clear she was struggling.
"Just being out in the garden was a big deal," her husband said. "We would try to walk a third of the way around the house and I would have to almost carry her back."
Tibbetts could barely make it to the end of the driveway without collapsing. For nine months, her husband said, she wasn't strong enough to walk to the end of their street. And the problems weren't only physical.
"I had a lot of difficulty with word retrieval," she said. "Cognitive problems."
Her doctor told her she was pre-menopausal, she said, that these things were natural as a woman got older. But Tibbetts knew better. A 2006 Lyme test showed some evidence of the tick-borne disease, but was still considered negative by Centers for Disease Control and Prevention standards. Still, it was enough to give Tibbetts some idea of what she was battling.
The Tibbetts searched for a Lyme specialist and eventually found one who was a clinical assistant research professor at Yale and a board certified neurologist. It cost them $900 for a two-hour visit and testing. But at the end of the visit, Tibbetts' tests were sent to Stony Brook University in New York and the results gave her the answer she was looking for: Lyme disease.
Today, Tibbetts is back to being able to take hikes and lead an active life, though vestiges of the disease remain. To reach this point, though, the family has spent tens of thousands of dollars of their own money to pay for extended antibiotic therapy, additional testing and homeopathic herbal remedies that Tibbetts has administered by a practitioner here in Maine.
They've educated themselves so thoroughly on the disease that when Barry Tibbetts was bitten by a tick in 2006 and began to exhibit symptoms over the next few years — despite a negative Lyme test — they knew they had to look beyond that initial test for an answer.
Barry Tibbetts had a Western blot test, which measures your body's response to certain antigens in the bloodstream. While the CDC mandates that a patient has to have five out of six particular bands on the test for a diagnosis of Lyme, his doctor saw enough in the results to conclude that he, too, had the disease.
The Tibbetts' story is all too familiar to Kennebunk's Linda Pearson. She, too, had a tick bite 17 years ago on Martha's Vineyard and was vigilant in watching for a bulls-eye rash that never came. Months later she was talking to a woman at a party about the extreme pain in her knees when the woman asked, "Have you ever been checked for Lyme?"
Pearson was, and after a positive test, went on antibiotics for a month. But once she stopped the medicine, her symptoms came back. She would repeat this pattern of treatment followed by a re-emergence of symptoms over the next several years, through a move to Maine and raising her sons. The pain — in her neck, in her legs — was bad, but she said the "brain fog" she experienced was even worse. And worse yet, she saw the same symptoms in her kids.
Today, Pearson said the family is working with an osteopath and taking Chinese herbal remedies and focusing heavily on their nutrition.
"We're doing a lot of immune-building things," she said, adding that while antibiotics fight the bacteria, it often goes dormant, only to strike again a few months later. Building the immune system, she said, gives you one more layer of protection of the disease.
Joanne Tibbetts said she, too, has discovered the same thing. She said everything from probiotics, thyroid medication and hormone therapy can be used to treat Lyme — if it's properly diagnosed.
Between the recurring nature of long-term Lyme and its ability to mimic other illnesses, from Chronic Fatigue Syndrome to fibromyalgia, it can be a hard disease to diagnose and treat.
That's why both Tibbetts have spent time in Augusta recently, speaking out on behalf of Legg's bill. Legg himself said he feels the bill, which will name May as Lyme disease awareness month in Maine and change some local protocols for reporting and detection, will be a good first step in bringing more Lyme awareness to Maine.
"It's a big step forward," he said, "but it doesn't settle the issue of how to treat long-term Lyme."
The scientific community is still divided on that, Barry Tibbetts said, both inside Maine and around the country. But while that debate rages on, the Tibbetts said they at least feel like they're doing their part to educate others that Lyme has come to Maine to stay. It's a lesson they had to learn the hard way.
"This is not the world we lived in 15 years ago," Joanne Tibbetts said. "Don't assume you're safe."
End quotation
Thursday, May 21, 2009
What We don't know about Lyme.
Hello again,
This is a great article from Pamela Weintraub. It is quite long, but well worth taking the time to read. There is a lot of great information. This last week, I had a couple of appointments with my regular doctors and I was again disheartened at their lack of knowledge of Lyme disease. It was as though they didn't care that I was still suffering from Lyme disease, but that because they didn't know anything about it, it excused them from trying to treat me. They would address my diabetes(brought on by the Lyme disease)but that was all they could do for me. They made the comment that they would let whoever is working with me on Lyme, if anyone, treat me for that. It was infuriating and I resolved again to work harder on being a Lyme disease activist. The work that Pamela Weintraub has done for Lyme disease patients is second to none. For those of you who haven't read any of her books, I encourage to do so.
More resolved than ever,
Richard
What We Don't Know About Lyme
When a mysterious and debilitating illness overtook her and her family, the author struggled to find some answers. What she discovered about Lyme disease - and how little is actually known or agreed upon by the medical experts - is something everyone who goes outdoors should learn.
What We Don't Know About Lyme
By Pamela Weintraub
Features,
June 2009
Lume 101
Slipping Through the Cracks
Lyme on the Brain
The Treatment Controversy
Tick Menagerie
A New Lyme Science
Last Dance With Lyme
How to Protect Yourself Against Lyme Disease
Finding a Provider
Web Resources
After we moved from the city to a wooded property in the suburban hamlet of Chappaqua, N.Y., in 1993, our family began to get sick. At first, the vague headaches, joint pains and bone weariness were so subtle they barely merited note. But as years passed, these symptoms intensified into frank signs of disease.
My arms and legs buzzed so palpably I felt like I was wired to a power grid. A relentless migraine became so intense I spent hours each day in a darkened room, in bed. My husband, Mark, an avid tennis player, began stumbling and bumping into walls. He was an award-winning journalist, but slowly he began struggling with memory and groping for words. Our youngest son, David, began to sleep — first, so long that he could not do his homework or see his friends; eventually, so much (15 or more hours a day) that he could not get to class.
Hardest hit was Jason, our oldest, who suffered fatigue and shooting pains starting at age 9, the year we moved to our little house in the woods. The doctors called these “growing pains” normal, but by February 2000, Jason, then 16, was essentially disabled. An honor student, he now had trouble reading even simple paragraphs. His joints and muscles hurt so much it was difficult for him to walk. And he couldn’t tolerate sound and light. On medical leave from high school, he spent his days in the tub in our darkened main-floor bathroom as hot water and steam eased his pain.
As his condition worsened, and as all sorts of lab tests came back negative, a raft of specialists at New York City’s top teaching hospitals suggested diagnoses ranging from migraine aura (migraine without the pain) to Fifth’s disease (caused by parvovirus). Each diagnosis elicited a treatment, but none of them worked.
“What about Lyme disease?” I asked from time to time, since we lived in an area where the infection was endemic; our backyard was a haven for deer, and Jason spent summers playing in a fort in the woods behind our house.
“There are too many symptoms here, and he’s way too sick for Lyme disease,” replied the pediatrician, who declined to even test for it. But with answers still eluding us, the pediatrician finally drew blood for a Western blot, a diagnostic test that matched antibodies produced by the patient against the proteins of the invading organism — in this case the bacterium known to cause Lyme.
When the labs came back, Jason had so many “bands” — with each band considered an antibody-protein match — that the result was off-the-charts positive. By the summer of that year, the rest of us had been diagnosed as well.
The news was a relief. With a solid diagnosis, we were told by doctors, we could get treated for this easily curable infection, and move on. We felt a flush of optimism, but it turned out that our struggle had just begun. I would spend the next nine years trying to make sense of our misdiagnoses and seeking effective treatment for my children.
Lyme 101 (Back to Top)
What I didn’t know about Lyme disease back then could have filled a book — one that, as a longtime science and medical journalist, I eventually wrote. My book, Cure Unknown: Inside the Lyme Epidemic (St. Martin’s Press, 2008), explores the complex science and disturbing political war over the illness. But a few facts can be served up straight: Lyme disease is caused by the spirochete Borrelia burgdorferi, a spiral-shaped bacterium, and is generally transmitted to people through the bite of a deer tick.
The disease arrived in the Northeast United States, northwest California and the Great Lakes region in force in the 1970s, as the continent was being reforested and new suburban housing was increasingly built adjacent to woods. The spirochete lived in the blood of rodents and other small mammals inhabiting those woods. When ticks bit these mammals they became infected. When those same ticks bit human hosts, they transmitted Lyme disease to them.
Pushing the disease to epidemic proportions, however, required something else: large mammals, like deer, are each able to provide nourishment for hundreds of large adult ticks, enabling them to reproduce en masse. As the deer population exploded across the forested regions of the country, the Lyme epidemic followed suit. Ultimately, infected ticks traversed the continental flyways on the backs of migrating birds, bringing Lyme to every state. Today, 12 to 40 percent of deer ticks are infected in the most endemic areas of the Northeast, and between 3 and 40 percent in endemic areas of the West Coast. With more than 200,000 CDC-acknowledged cases a year in the United States (the tip of the iceberg, many believe), Lyme has become one of country’s fastest-spreading diseases.
Slipping Through the Cracks (Back to Top)
When diagnosed with a Lyme rash and treated early, most infected patients are easily cured. But this upbeat message has little meaning for those diagnosed late. Show up at the doctor without a rash, and diagnosing Lyme disease becomes an elaborate, labyrinthine affair.
The standard guidelines, published by the Infectious Diseases Society of America (IDSA), call for early diagnosis exclusively through the presence of that telltale rash — mistakenly thought of by many practitioners as a classic “bull’s-eye” shape. Yet the spreading red rash with areas of white clearing, called an erythema migrans, might not be round or oval — let alone a bull’s eye. (Jason’s rash, which I later recognized in a medical textbook, was dismissed by our medical group because it covered his torso in a swath.) According to some studies and estimates, fewer than 60 percent of Lyme patients ever exhibit or notice a rash of any sort.
Those without this early sign may roam the diagnostic desert for years seeking answers. Yet, IDSA guidelines require that, to qualify for diagnosis, patients without the rash must present with one of a small group of quantifiable disease signs, from measurable nerve damage to grossly swollen knees. Though many experts say a significant percentage of Lyme patients experience only “symptoms” — headache, memory loss or fatigue — IDSA calls these problems just too vague to consider a diagnosis of Lyme. But, even with objective signs like swollen knees, patients must pass a series of tests before a diagnosis can be made.
And that’s the other part of the problem. Should the patient present those frank signs of disease and qualify for the test, the bar for passing is set perilously high for some. According to the peer-reviewed journal Mayo Clinic Proceedings, “The tests are prone to false-negative and false-positive results and can be misleading, especially early in the course of the disease. . . . Because serologic [blood] testing is not 100 percent sensitive or specific, some people with Lyme disease will not have confirmatory laboratory results.”
The most comprehensive review of the standard Lyme tests comes from Johns Hopkins University. Working with patients from Pennsylvania and Maryland, the Hopkins scientists studied state-of-the-art serology and DNA tests for Lyme and found serious flaws: Most tellingly, when the standard two-step method recommended by the CDC was used on patients with other laboratory evidence of Lyme disease, it was positive between 45 percent and 77 percent of the time. As for DNA tests, the Hopkins researchers reported these rarely pick up otherwise-confirmed Lyme disease at all.
It is made all the more complicated because there are hundreds of strains of the Lyme disease spirochete throughout the world, says Benjamin Luft, MD, chief of the Division of Infectious Diseases at the State University of New York at Stony Brook. Each strain has its own combination of proteins, evoking a variety of bands on diagnostic tests; some will match the pattern the CDC has approved for a positive on the Western blot (the second of two tests in the series), but others may not. Each Lyme strain evokes a unique antibody pattern and its own flavor of disease.
In short, Mayo Clinic researchers note, diagnosis should be clinical — based not on the tests but on the patient and the patient’s situation as a whole. With so many strains of Lyme disease and a unique immune system for each new patient, this only makes sense. Yet with Lyme disease so controversial, most primary-care doctors end up deferring to the tests, leaving those who fail them out in the cold.
“I’ve been scraping Lyme patients off the sidewalk for years,” says Kenneth Liegner, MD, who practices in Armonk, N.Y., not far from where my family got sick. “By the time some of these people get to me, they are so disabled they can barely think or walk.”
Lyme on the Brain (Back to Top)
Given the barriers to diagnosis, many patients slide ever deeper into illness, where disability can be profound. Lyme invades not just our skin and our joints, but our hearts, nervous systems and eyes. Lyme is commonly considered a knee disease, an impediment in tennis, but the Lyme spirochete, like the syphilis spirochete, also invades the brain.
Testing hundreds of such patients, New York University neuropsychologist Leo J. Shea III, PhD, found specific deficits in concentration, short-term memory and processing speed. Patients can be so impaired they have trouble driving around their neighborhoods and can no longer perform their jobs.
Psychiatrist Brian Fallon, MD, director of the Lyme and Tick Borne Diseases Research Center at Columbia University Medical Center, found that brain infection could trigger a host of psychiatric problems, ranging from bipolar disorder and depression to panic and obsessive-compulsive disorder (OCD).
Time and again, Fallon has seen Lyme disease “misdiagnosed as a primary psychiatric problem,” while the root issue — infection with the spirochete B. burgdorferi — was never addressed. This is especially damaging, he says, since a delay in treatment could turn an acute and easily curable infection into a chronic disease highly resistant to treatment.
The Treatment Controversy (Back to Top)
Patients diagnosed in the earliest stage of the disease through a classic rash can usually look forward to full recovery after a monthlong regimen of the oral antibiotics doxycycline or amoxicillin. Those with neurological or arthritic symptoms may be offered intravenous ceftriaxone for a month or two. But experts like Luft and Liegner have found that some 20 percent of those infected for over a year before the start of treatment will fail these protocols and stay sick.
Without further options from the IDSA team, these late-diagnosed patients have sought help from controversial doctors known as Lyme-Literate MDs (LLMDs), who argue that longer courses, higher doses and multidrug antibiotic regimens provide a viable option for many of the “incurable” 20 percent. As ever more patients flock to LLMDs like Liegner, the controversy has mounted, with IDSA pitted against another, newer group: the International Lyme and Associated Diseases Society (ILADS). IDSA says the short-term treatment always stamps out infection and argues that overexposure to antibiotics can generate treatment-resistant bugs. Competing guidelines from ILADS hold that patients already have a hard-to-treat infection (chronic, persistent Lyme disease) and that more aggressive treatment is thus warranted.
The debate has recently come closer to resolution with surprising research from veterinary scientist Stephen Barthold, DVM, PhD, who spent 25 years investigating Lyme disease at Yale before setting up shop as director of the Center for Comparative Medicine at the University of California at Davis. Barthold reports that if he allows the infection to remain untreated for months across a range of mammal species in the lab, he can always recover living spirochetes, generally sequestered in tissues that are rich in collagen. When laboratory mice infected with these spirochetes are treated with what should be effective doses of various antibiotics, the spirochetes cannot be cultured from tissues by conventional means, but they are alive and can be transmitted by ticks to other mice.
The finding resonates with what late-diagnosed patients report: If surviving spirochetes are so sluggish they cannot replicate, they may be impervious to antibiotics that work by targeting bacterial cells as they divide. The persisting spirochetes could be the presumptive source of the constitutional symptoms like pain and fatigue that often follow treatment; they may be provoking the production of symptom-causing cytokines (immune molecules), yet still be too low in number to cause the gross inflammation or provoke the antibody response that many mainstream experts call the sine qua non of the disease. Infection might be suppressed but not eradicated by treatment, as so many relapsing patients report.
Spurred by the findings, university-based researchers are attacking the infection on several fronts. Scientists like Luft and Barthold are actively testing antibiotics designed to purge these dormant, resistant spirochetes. Some researchers are trying to destroy them with nanotechnology and heat. And a California company called Viral Genetics, with research headed by M. Karen Newell, PhD, and aided by Nobel laureate Luc Montagnier, discoverer of the HIV virus, is trying to modulate the immune system so it can clean out infection on its own. Still others suggest that the low-level infection might be benign if the immune response could be contained.
Tick Menagerie (Back to Top)
Improved treatments for Lyme disease alone may not solve the problem. There are other infections inhabiting the ticks that spread Lyme, and they are factors as well. The malaria-like parasite Babesia infects our red blood cells and results in fever, exhaustion and drenching sweats. Babesiosis combined with Lyme disease can be especially protracted and difficult to treat. Tick-borne bacteria like Anaplasma and Ehrlichia, which live in human cells, are rife throughout regions where Lyme has reared its head. These organisms don’t necessarily respond to all common treatment for Lyme disease and may cause serious illness even when Lyme is not involved.
Added to this are other microbes as well; though still controversial, these, too, are now considered possible agents of the disease complex broadly referred to as “Lyme.” One of the most notable is the rod-shaped bacterium Bartonella henselae, known as a cause of “cat scratch” disease and commonly transmitted by cats. More recently, forms of bartonella have been discovered in abundance in deer ticks. Some doctors cite Bartonella as a culprit when symptoms are particularly neuropsychiatric, and when treatment for Lyme does not work.
Another tick-borne suspect, Mycoplasma, has been discovered in deer ticks in Connecticut and New Jersey. “This could be the missing link,” says Eva Sapi, PhD, associate professor of biology at the University of New Haven, who also hypothesizes that nematodes play a role in tick-borne disease. It would explain why some patients don’t get well when treated for Lyme disease alone. Other researchers have found Tularemia, often an agent of bio-terrorism, in Lyme ticks.
A host of other spirochetes, some not yet identified, complete the scene. Yale researchers found that 20 percent of the spirochetes thought to be Borrelia burgdorferi in the Northeast are really another species, a relapsing fever spirochete never seen in North America before. There’s a still-unidentified spirochete in Montana, this time transmitted by the wood tick. And then there’s the lonestar tick, which has recently spread from the South throughout the Midwest and up the East Coast, as far north as Maine. The lonestar carries an unidentified spirochete, the cause of a Lymelike disease that the CDC has recently recognized.
“We are just starting to understand the full range of infections that we might get,” says David H. Persing, MD, PhD, chief medical and technology officer for Cepheid, a California biotech firm and a world expert in molecular diagnostics. “I don’t think we know half of the agents that are potentially transmissible by ticks.”
Add to this the morphing quality of the various microbes implicated in these Lymelike diseases. Through constant shifting of plasmid DNA among the microbes, ticks facilitate a rapid form of evolution and drive the creation of novel strains and microbes, virtually nonstop. Indeed, in the universe of emerging infectious disease, the tick is the final frontier. The ultimate germ generator, it is the ideal wet lab for microorganisms to mix and remix in infinite formats, spewing a kaleidoscopic oeuvre of novel bacteria and viruses, some of them pathogens the world has never seen.
A New Lyme Science (Back to Top)
I wish I had understood Lyme as an emerging infectious disease and political hot potato when my family first got sick. Exposed to the noxious debate, the naive patient sees two polarized factions and feels pressured to choose one. But interview the workbench researchers and you will find a complex, nuanced reality emerging from the science itself. Sadly, the vicious political fight over Lyme disease has dumbed down the dialogue and prevented the best science from being heard.
In 2009, the pace of scientific progress is great. Instead of testing for a mere 10 antibodies to a limited number of spirochetal proteins — the procedure still being used in most of today’s commercial labs — new diagnostics that Luft and his Stony Brook colleagues have developed will use proteomics (study of proteins) to tap 1,800 B. burgdorferi proteins found across the range of strains. “We want to test against the entire array of borrelia proteins in all their variability,” says Luft. “So if I look at a patient over time, over the course of their disease I can see whether new proteins, ones we’ve never noticed, might emerge.”
The work on strains could alter how we diagnose and treat the disease in the years to come, says Alan Barbour, director of the Pacific-Southwest Regional Center of Excellence for Biodefense and Emerging Infectious Diseases at the University of California Irvine and one of the world’s foremost spirochete experts. “If some strains are more likely than others to spread in the blood, and by that route to other tissues, then identification of the strain a person is infected with could help guide therapy,” Barbour explains. “Some strains may call for a longer course of antibiotics. The problem is isolating the microbe out of the patient to see what strain it is. This could be done by a Polymerase Chain Reaction (PCR) test of the blood or a skin biopsy, when there is a rash. Isolating the microbe is harder when the illness has been going on for longer than a few weeks, but any isolate of Borrelia burgdorferi from a patient would mean a diagnosis of Lyme disease.”
Also shedding light on treatment is genomics (the study of genes). The Luft team has recently found that Lyme spirochetes have genes for pumping out the first-line antibiotic doxycycline. This means that even as doxycycline enters the Lyme bacterium, it is being ejected, much like a sump pump might eject water from a basement floor. As a result, the dose might not climb high enough to kill the infection, and the patient won’t get well.
Based on this finding, Luft is now studying another drug — tigecycline, an intravenous antibiotic currently used for infections of the abdominal organs and skin. Its mechanism is much like that of doxycycline — except that its chemical structure inhibits the spirochetes’ “pump,” keeping the antibiotic from being ejected by the cells. “It’s a hundred times more active against the spirochete than doxycycline. Instead of just inhibiting the spirochetes, like doxy, it kills them dead,” says Luft.
“We’re at a critical point,” he adds. “We have powerful new tools and a fundamental understanding of the biology of the Borrelia. We know every gene in that organism. We know all the variations of those genes. We know what’s in the human genome. So, when someone gets sick, we’ve got to put this together, in context, and ask what’s going on.”
Indeed, work like this will explain why prognosis varies so widely from one patient to the next. With so many strains, so many co-infections and so many immune systems, Lyme — in the broad sense of the word — will never be one-size-fits-all.
“Some researchers have thrown down their gloves and retreated to their corners, leaving patients out in the cold,” says Luft. “But despite what they say, the patients are still sick. It’s a question of doing right by them — it’s not a question of whether you might have to eat crow. We’ve got to go in and do the right experiments, and then we can look truth in the eye.”
Last Dance With Lyme (Back to Top)
My family has come a long way since our Lyme diagnoses almost a decade ago. We’ve left the Lymelands for safer ground — the concrete expanse of Brooklyn. I’ve been off antibiotics since 2004 and am back at a full-time job. Mark continues to relapse when he stops his antibiotic, but with it, he works his day job, plays tennis and seems fine. Jason has recovered. He graduated from Brown University in spring 2008 and leaves for film school in the fall.
But Lyme still clouds our lives because our younger son, David, was re-infected in Westchester County a couple of years back and remains ill.
In all my years of research, I never doubted that IDSA was right about early Lyme: Treat the rash and a cure would be guaranteed. So in the summer of 2007, when David called to tell me that friends in his college dorm had recognized a classic bull’s-eye rash on his arm, I was actually relieved: For once, we’d caught it early. A month of antibiotics, I told myself, and David would be cured.
We took a 40-minute drive to Dr. Daniel Cameron’s office in downtown Mount Kisco, N.Y., and his physician assistant easily diagnosed a bull’s-eye-shaped erythema migrans that was an archetype of the form. She prescribed a few weeks of amoxicillin and sent us home.
“When you get a rash so classic that everyone at college tells you it’s Lyme disease, it’s a beautiful thing,” Dan Cameron, now president of ILADS, said at the time.
But by spring 2008, David’s fatigue was so profound, his memory and focus so poor, that he had to drop his classes at Vassar College and come home. Back in New York, doctors discovered gross damage to David’s cranial nerves — irrefutable, IDSA-style proof of inflammatory disease and hardcore evidence of Lyme. Ordering more tests, Cameron found not just Lyme disease but a co-infection — babesiosis — known to complicate the picture and make Lyme harder to treat.
I completed work on my book about this mysterious disease more than a year ago, but I know now that our journey is far from over. Our family, along with many others, continues to deal with the fallout at the frontlines of an epidemic, in that unforgiving land called Lyme.
Pamela Weintraub is a senior editor at Discover Magazine and author of Cure Unknown: Inside the Lyme Epidemic (St. Martin’s Press, 2008). She writes a blog on emerging disease for Psychology Today.
How to Protect Yourself Against Lyme Disease (Back to Top)
For those who live and work in Lyme endemic areas, a little protection goes a long way. You can enjoy nature, according to Pat Smith, president of the Lyme Disease Association, as long as you take some precautions:
* Walk in the middle of trails. Avoid sitting on logs or leaning on trees.
* Wear a hat. Tuck your hair in, if possible.
* Wear a long-sleeved shirt, fitted at the waist.
* Wear boots or shoes, not sandals. No bare feet.
* Wear long pants tucked into high socks, or duct tape around pant bottoms.
* Consider applying Deet for skin and permethrin for clothes (use your own best judgment in weighing exposure to these toxins against risk of tick bites).
* Wear white or light-colored clothing so ticks stand out.
* Check yourself and your children for ticks immediately after outdoor exposure. Repeat the tick check again, three days later. Remember that nymphal (adolescent) ticks can look like freckles. They are the size of poppy seeds.
* If you find an attached tick, remove it carefully with tweezers placed as close to the skin as possible. Pull the tick upward with steady, even pressure, making sure that mouth parts are cleanly removed. Apply antiseptic and call a doctor. Save the tick in a sealed container with a moist cotton ball. Call your state health department to inquire about testing. (Ticks do fall off on their own eventually, so even if you don’t see a tick, it is possible that you may have been exposed to disease.)
* Consult your doctor about treating the tick bite with oral antibiotics. Though the number of days required for this treatment remains controversial, new findings from CDC research suggest that the single dose of treatment generally recommended for this scenario may be inadequate and that a doxycycline sustained release protocol (19 days) the CDC is developing might be more effective.
Finding a Provider (Back to Top)
How to find a doctor to treat your tick-borne disease.
Lyme disease is never pleasant, but if you are exposed in endemic areas of the Northeast, the Midwest or the West Coast and develop the spreading red Lyme rash known as erythema migrans, the best person to consult is your family doctor. The classic Lyme disease rash is considered diagnostic for the disease in these areas, according to the standard guidelines from the Infectious Diseases Society of America (IDSA). Physicians following these widely accepted guidelines will not even have to order a blood test to make a bulletproof diagnosis. For most people without other complications, including other infections from the same tick bite, a month of treatment with oral antibiotics like doxycycline or amoxicillin should cure the disease.
Finding a doctor able to make the diagnosis and treat you adequately becomes far more challenging if you do not see or develop a rash, or if you live outside areas considered most endemic for the disease. Given the debate in the medical community over the classic signs and symptoms for Lyme, the inaccuracy of the tests, and the presence of complicating co-infections, patients in this circumstance can advance into later, harder-to-treat disease before they are ever diagnosed.
In this instance, it may be appropriate to consult a neurologist, rheumatologist or infectious disease doctor in your community for specialized but mainstream care. Following the IDSA guidelines, these physicians will treat these sicker patients with specialized antimicrobials aimed at co-infections, or with a month or two of intravenous Rocephin, which crosses the blood brain barrier and better penetrates the joints, often resolving Lyme disease.
But about 20 percent of patients diagnosed with late-stage Lyme disease report that they fail even this more aggressive treatment; others report that their co-infections are missed. Still sick, they find themselves navigating the tortuous backroads of the Lyme wars. Those seeking clinical evaluation of the range of tick-borne infections or continued treatment for Lyme disease itself — as I did with my own family — may decide to cross the line, leaving the restrictions of the mainstream viewpoint for the alternative world of Lyme doctors, referred to by patients as Lyme-Literate Medical Doctors, or LLMDs. These physicians will test patients for a range of co-infections and treat Lyme disease longer, using antibiotics in combination (as is done with tuberculosis cases) for months and sometimes years.
Many patients report recovery on such protocols — but many do not, and for them, the search for treatment goes on. Some patients consult trained naturopaths, who help them boost their immune systems. One new trend used by neurologists at New York University and Yale involves treatment with IVIG (intravenous immunoglobulin), a blood product rich in immune molecules that can heal damaged nerves.
For reference to a doctor skilled in mainstream protocols, contact the Infectious Diseases Society of America. For reference to a doctor willing to treat tick-borne infection beyond the standard guidelines, contact the Lyme Disease Association or the International Lyme and Associated Diseases Society. (See Web Resources, below.)
Web Resources (Back to Top)
* Infectious Diseases Society of America: www.idsociety.org
* Lyme Disease Association: www.lymediseaseassociation.org
* International Lyme and Associated Diseases Society: www.ilads.or
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Behind the Scenes With Alexandra Coustea
This is a great article from Pamela Weintraub. It is quite long, but well worth taking the time to read. There is a lot of great information. This last week, I had a couple of appointments with my regular doctors and I was again disheartened at their lack of knowledge of Lyme disease. It was as though they didn't care that I was still suffering from Lyme disease, but that because they didn't know anything about it, it excused them from trying to treat me. They would address my diabetes(brought on by the Lyme disease)but that was all they could do for me. They made the comment that they would let whoever is working with me on Lyme, if anyone, treat me for that. It was infuriating and I resolved again to work harder on being a Lyme disease activist. The work that Pamela Weintraub has done for Lyme disease patients is second to none. For those of you who haven't read any of her books, I encourage to do so.
More resolved than ever,
Richard
What We Don't Know About Lyme
When a mysterious and debilitating illness overtook her and her family, the author struggled to find some answers. What she discovered about Lyme disease - and how little is actually known or agreed upon by the medical experts - is something everyone who goes outdoors should learn.
What We Don't Know About Lyme
By Pamela Weintraub
Features,
June 2009
Lume 101
Slipping Through the Cracks
Lyme on the Brain
The Treatment Controversy
Tick Menagerie
A New Lyme Science
Last Dance With Lyme
How to Protect Yourself Against Lyme Disease
Finding a Provider
Web Resources
After we moved from the city to a wooded property in the suburban hamlet of Chappaqua, N.Y., in 1993, our family began to get sick. At first, the vague headaches, joint pains and bone weariness were so subtle they barely merited note. But as years passed, these symptoms intensified into frank signs of disease.
My arms and legs buzzed so palpably I felt like I was wired to a power grid. A relentless migraine became so intense I spent hours each day in a darkened room, in bed. My husband, Mark, an avid tennis player, began stumbling and bumping into walls. He was an award-winning journalist, but slowly he began struggling with memory and groping for words. Our youngest son, David, began to sleep — first, so long that he could not do his homework or see his friends; eventually, so much (15 or more hours a day) that he could not get to class.
Hardest hit was Jason, our oldest, who suffered fatigue and shooting pains starting at age 9, the year we moved to our little house in the woods. The doctors called these “growing pains” normal, but by February 2000, Jason, then 16, was essentially disabled. An honor student, he now had trouble reading even simple paragraphs. His joints and muscles hurt so much it was difficult for him to walk. And he couldn’t tolerate sound and light. On medical leave from high school, he spent his days in the tub in our darkened main-floor bathroom as hot water and steam eased his pain.
As his condition worsened, and as all sorts of lab tests came back negative, a raft of specialists at New York City’s top teaching hospitals suggested diagnoses ranging from migraine aura (migraine without the pain) to Fifth’s disease (caused by parvovirus). Each diagnosis elicited a treatment, but none of them worked.
“What about Lyme disease?” I asked from time to time, since we lived in an area where the infection was endemic; our backyard was a haven for deer, and Jason spent summers playing in a fort in the woods behind our house.
“There are too many symptoms here, and he’s way too sick for Lyme disease,” replied the pediatrician, who declined to even test for it. But with answers still eluding us, the pediatrician finally drew blood for a Western blot, a diagnostic test that matched antibodies produced by the patient against the proteins of the invading organism — in this case the bacterium known to cause Lyme.
When the labs came back, Jason had so many “bands” — with each band considered an antibody-protein match — that the result was off-the-charts positive. By the summer of that year, the rest of us had been diagnosed as well.
The news was a relief. With a solid diagnosis, we were told by doctors, we could get treated for this easily curable infection, and move on. We felt a flush of optimism, but it turned out that our struggle had just begun. I would spend the next nine years trying to make sense of our misdiagnoses and seeking effective treatment for my children.
Lyme 101 (Back to Top)
What I didn’t know about Lyme disease back then could have filled a book — one that, as a longtime science and medical journalist, I eventually wrote. My book, Cure Unknown: Inside the Lyme Epidemic (St. Martin’s Press, 2008), explores the complex science and disturbing political war over the illness. But a few facts can be served up straight: Lyme disease is caused by the spirochete Borrelia burgdorferi, a spiral-shaped bacterium, and is generally transmitted to people through the bite of a deer tick.
The disease arrived in the Northeast United States, northwest California and the Great Lakes region in force in the 1970s, as the continent was being reforested and new suburban housing was increasingly built adjacent to woods. The spirochete lived in the blood of rodents and other small mammals inhabiting those woods. When ticks bit these mammals they became infected. When those same ticks bit human hosts, they transmitted Lyme disease to them.
Pushing the disease to epidemic proportions, however, required something else: large mammals, like deer, are each able to provide nourishment for hundreds of large adult ticks, enabling them to reproduce en masse. As the deer population exploded across the forested regions of the country, the Lyme epidemic followed suit. Ultimately, infected ticks traversed the continental flyways on the backs of migrating birds, bringing Lyme to every state. Today, 12 to 40 percent of deer ticks are infected in the most endemic areas of the Northeast, and between 3 and 40 percent in endemic areas of the West Coast. With more than 200,000 CDC-acknowledged cases a year in the United States (the tip of the iceberg, many believe), Lyme has become one of country’s fastest-spreading diseases.
Slipping Through the Cracks (Back to Top)
When diagnosed with a Lyme rash and treated early, most infected patients are easily cured. But this upbeat message has little meaning for those diagnosed late. Show up at the doctor without a rash, and diagnosing Lyme disease becomes an elaborate, labyrinthine affair.
The standard guidelines, published by the Infectious Diseases Society of America (IDSA), call for early diagnosis exclusively through the presence of that telltale rash — mistakenly thought of by many practitioners as a classic “bull’s-eye” shape. Yet the spreading red rash with areas of white clearing, called an erythema migrans, might not be round or oval — let alone a bull’s eye. (Jason’s rash, which I later recognized in a medical textbook, was dismissed by our medical group because it covered his torso in a swath.) According to some studies and estimates, fewer than 60 percent of Lyme patients ever exhibit or notice a rash of any sort.
Those without this early sign may roam the diagnostic desert for years seeking answers. Yet, IDSA guidelines require that, to qualify for diagnosis, patients without the rash must present with one of a small group of quantifiable disease signs, from measurable nerve damage to grossly swollen knees. Though many experts say a significant percentage of Lyme patients experience only “symptoms” — headache, memory loss or fatigue — IDSA calls these problems just too vague to consider a diagnosis of Lyme. But, even with objective signs like swollen knees, patients must pass a series of tests before a diagnosis can be made.
And that’s the other part of the problem. Should the patient present those frank signs of disease and qualify for the test, the bar for passing is set perilously high for some. According to the peer-reviewed journal Mayo Clinic Proceedings, “The tests are prone to false-negative and false-positive results and can be misleading, especially early in the course of the disease. . . . Because serologic [blood] testing is not 100 percent sensitive or specific, some people with Lyme disease will not have confirmatory laboratory results.”
The most comprehensive review of the standard Lyme tests comes from Johns Hopkins University. Working with patients from Pennsylvania and Maryland, the Hopkins scientists studied state-of-the-art serology and DNA tests for Lyme and found serious flaws: Most tellingly, when the standard two-step method recommended by the CDC was used on patients with other laboratory evidence of Lyme disease, it was positive between 45 percent and 77 percent of the time. As for DNA tests, the Hopkins researchers reported these rarely pick up otherwise-confirmed Lyme disease at all.
It is made all the more complicated because there are hundreds of strains of the Lyme disease spirochete throughout the world, says Benjamin Luft, MD, chief of the Division of Infectious Diseases at the State University of New York at Stony Brook. Each strain has its own combination of proteins, evoking a variety of bands on diagnostic tests; some will match the pattern the CDC has approved for a positive on the Western blot (the second of two tests in the series), but others may not. Each Lyme strain evokes a unique antibody pattern and its own flavor of disease.
In short, Mayo Clinic researchers note, diagnosis should be clinical — based not on the tests but on the patient and the patient’s situation as a whole. With so many strains of Lyme disease and a unique immune system for each new patient, this only makes sense. Yet with Lyme disease so controversial, most primary-care doctors end up deferring to the tests, leaving those who fail them out in the cold.
“I’ve been scraping Lyme patients off the sidewalk for years,” says Kenneth Liegner, MD, who practices in Armonk, N.Y., not far from where my family got sick. “By the time some of these people get to me, they are so disabled they can barely think or walk.”
Lyme on the Brain (Back to Top)
Given the barriers to diagnosis, many patients slide ever deeper into illness, where disability can be profound. Lyme invades not just our skin and our joints, but our hearts, nervous systems and eyes. Lyme is commonly considered a knee disease, an impediment in tennis, but the Lyme spirochete, like the syphilis spirochete, also invades the brain.
Testing hundreds of such patients, New York University neuropsychologist Leo J. Shea III, PhD, found specific deficits in concentration, short-term memory and processing speed. Patients can be so impaired they have trouble driving around their neighborhoods and can no longer perform their jobs.
Psychiatrist Brian Fallon, MD, director of the Lyme and Tick Borne Diseases Research Center at Columbia University Medical Center, found that brain infection could trigger a host of psychiatric problems, ranging from bipolar disorder and depression to panic and obsessive-compulsive disorder (OCD).
Time and again, Fallon has seen Lyme disease “misdiagnosed as a primary psychiatric problem,” while the root issue — infection with the spirochete B. burgdorferi — was never addressed. This is especially damaging, he says, since a delay in treatment could turn an acute and easily curable infection into a chronic disease highly resistant to treatment.
The Treatment Controversy (Back to Top)
Patients diagnosed in the earliest stage of the disease through a classic rash can usually look forward to full recovery after a monthlong regimen of the oral antibiotics doxycycline or amoxicillin. Those with neurological or arthritic symptoms may be offered intravenous ceftriaxone for a month or two. But experts like Luft and Liegner have found that some 20 percent of those infected for over a year before the start of treatment will fail these protocols and stay sick.
Without further options from the IDSA team, these late-diagnosed patients have sought help from controversial doctors known as Lyme-Literate MDs (LLMDs), who argue that longer courses, higher doses and multidrug antibiotic regimens provide a viable option for many of the “incurable” 20 percent. As ever more patients flock to LLMDs like Liegner, the controversy has mounted, with IDSA pitted against another, newer group: the International Lyme and Associated Diseases Society (ILADS). IDSA says the short-term treatment always stamps out infection and argues that overexposure to antibiotics can generate treatment-resistant bugs. Competing guidelines from ILADS hold that patients already have a hard-to-treat infection (chronic, persistent Lyme disease) and that more aggressive treatment is thus warranted.
The debate has recently come closer to resolution with surprising research from veterinary scientist Stephen Barthold, DVM, PhD, who spent 25 years investigating Lyme disease at Yale before setting up shop as director of the Center for Comparative Medicine at the University of California at Davis. Barthold reports that if he allows the infection to remain untreated for months across a range of mammal species in the lab, he can always recover living spirochetes, generally sequestered in tissues that are rich in collagen. When laboratory mice infected with these spirochetes are treated with what should be effective doses of various antibiotics, the spirochetes cannot be cultured from tissues by conventional means, but they are alive and can be transmitted by ticks to other mice.
The finding resonates with what late-diagnosed patients report: If surviving spirochetes are so sluggish they cannot replicate, they may be impervious to antibiotics that work by targeting bacterial cells as they divide. The persisting spirochetes could be the presumptive source of the constitutional symptoms like pain and fatigue that often follow treatment; they may be provoking the production of symptom-causing cytokines (immune molecules), yet still be too low in number to cause the gross inflammation or provoke the antibody response that many mainstream experts call the sine qua non of the disease. Infection might be suppressed but not eradicated by treatment, as so many relapsing patients report.
Spurred by the findings, university-based researchers are attacking the infection on several fronts. Scientists like Luft and Barthold are actively testing antibiotics designed to purge these dormant, resistant spirochetes. Some researchers are trying to destroy them with nanotechnology and heat. And a California company called Viral Genetics, with research headed by M. Karen Newell, PhD, and aided by Nobel laureate Luc Montagnier, discoverer of the HIV virus, is trying to modulate the immune system so it can clean out infection on its own. Still others suggest that the low-level infection might be benign if the immune response could be contained.
Tick Menagerie (Back to Top)
Improved treatments for Lyme disease alone may not solve the problem. There are other infections inhabiting the ticks that spread Lyme, and they are factors as well. The malaria-like parasite Babesia infects our red blood cells and results in fever, exhaustion and drenching sweats. Babesiosis combined with Lyme disease can be especially protracted and difficult to treat. Tick-borne bacteria like Anaplasma and Ehrlichia, which live in human cells, are rife throughout regions where Lyme has reared its head. These organisms don’t necessarily respond to all common treatment for Lyme disease and may cause serious illness even when Lyme is not involved.
Added to this are other microbes as well; though still controversial, these, too, are now considered possible agents of the disease complex broadly referred to as “Lyme.” One of the most notable is the rod-shaped bacterium Bartonella henselae, known as a cause of “cat scratch” disease and commonly transmitted by cats. More recently, forms of bartonella have been discovered in abundance in deer ticks. Some doctors cite Bartonella as a culprit when symptoms are particularly neuropsychiatric, and when treatment for Lyme does not work.
Another tick-borne suspect, Mycoplasma, has been discovered in deer ticks in Connecticut and New Jersey. “This could be the missing link,” says Eva Sapi, PhD, associate professor of biology at the University of New Haven, who also hypothesizes that nematodes play a role in tick-borne disease. It would explain why some patients don’t get well when treated for Lyme disease alone. Other researchers have found Tularemia, often an agent of bio-terrorism, in Lyme ticks.
A host of other spirochetes, some not yet identified, complete the scene. Yale researchers found that 20 percent of the spirochetes thought to be Borrelia burgdorferi in the Northeast are really another species, a relapsing fever spirochete never seen in North America before. There’s a still-unidentified spirochete in Montana, this time transmitted by the wood tick. And then there’s the lonestar tick, which has recently spread from the South throughout the Midwest and up the East Coast, as far north as Maine. The lonestar carries an unidentified spirochete, the cause of a Lymelike disease that the CDC has recently recognized.
“We are just starting to understand the full range of infections that we might get,” says David H. Persing, MD, PhD, chief medical and technology officer for Cepheid, a California biotech firm and a world expert in molecular diagnostics. “I don’t think we know half of the agents that are potentially transmissible by ticks.”
Add to this the morphing quality of the various microbes implicated in these Lymelike diseases. Through constant shifting of plasmid DNA among the microbes, ticks facilitate a rapid form of evolution and drive the creation of novel strains and microbes, virtually nonstop. Indeed, in the universe of emerging infectious disease, the tick is the final frontier. The ultimate germ generator, it is the ideal wet lab for microorganisms to mix and remix in infinite formats, spewing a kaleidoscopic oeuvre of novel bacteria and viruses, some of them pathogens the world has never seen.
A New Lyme Science (Back to Top)
I wish I had understood Lyme as an emerging infectious disease and political hot potato when my family first got sick. Exposed to the noxious debate, the naive patient sees two polarized factions and feels pressured to choose one. But interview the workbench researchers and you will find a complex, nuanced reality emerging from the science itself. Sadly, the vicious political fight over Lyme disease has dumbed down the dialogue and prevented the best science from being heard.
In 2009, the pace of scientific progress is great. Instead of testing for a mere 10 antibodies to a limited number of spirochetal proteins — the procedure still being used in most of today’s commercial labs — new diagnostics that Luft and his Stony Brook colleagues have developed will use proteomics (study of proteins) to tap 1,800 B. burgdorferi proteins found across the range of strains. “We want to test against the entire array of borrelia proteins in all their variability,” says Luft. “So if I look at a patient over time, over the course of their disease I can see whether new proteins, ones we’ve never noticed, might emerge.”
The work on strains could alter how we diagnose and treat the disease in the years to come, says Alan Barbour, director of the Pacific-Southwest Regional Center of Excellence for Biodefense and Emerging Infectious Diseases at the University of California Irvine and one of the world’s foremost spirochete experts. “If some strains are more likely than others to spread in the blood, and by that route to other tissues, then identification of the strain a person is infected with could help guide therapy,” Barbour explains. “Some strains may call for a longer course of antibiotics. The problem is isolating the microbe out of the patient to see what strain it is. This could be done by a Polymerase Chain Reaction (PCR) test of the blood or a skin biopsy, when there is a rash. Isolating the microbe is harder when the illness has been going on for longer than a few weeks, but any isolate of Borrelia burgdorferi from a patient would mean a diagnosis of Lyme disease.”
Also shedding light on treatment is genomics (the study of genes). The Luft team has recently found that Lyme spirochetes have genes for pumping out the first-line antibiotic doxycycline. This means that even as doxycycline enters the Lyme bacterium, it is being ejected, much like a sump pump might eject water from a basement floor. As a result, the dose might not climb high enough to kill the infection, and the patient won’t get well.
Based on this finding, Luft is now studying another drug — tigecycline, an intravenous antibiotic currently used for infections of the abdominal organs and skin. Its mechanism is much like that of doxycycline — except that its chemical structure inhibits the spirochetes’ “pump,” keeping the antibiotic from being ejected by the cells. “It’s a hundred times more active against the spirochete than doxycycline. Instead of just inhibiting the spirochetes, like doxy, it kills them dead,” says Luft.
“We’re at a critical point,” he adds. “We have powerful new tools and a fundamental understanding of the biology of the Borrelia. We know every gene in that organism. We know all the variations of those genes. We know what’s in the human genome. So, when someone gets sick, we’ve got to put this together, in context, and ask what’s going on.”
Indeed, work like this will explain why prognosis varies so widely from one patient to the next. With so many strains, so many co-infections and so many immune systems, Lyme — in the broad sense of the word — will never be one-size-fits-all.
“Some researchers have thrown down their gloves and retreated to their corners, leaving patients out in the cold,” says Luft. “But despite what they say, the patients are still sick. It’s a question of doing right by them — it’s not a question of whether you might have to eat crow. We’ve got to go in and do the right experiments, and then we can look truth in the eye.”
Last Dance With Lyme (Back to Top)
My family has come a long way since our Lyme diagnoses almost a decade ago. We’ve left the Lymelands for safer ground — the concrete expanse of Brooklyn. I’ve been off antibiotics since 2004 and am back at a full-time job. Mark continues to relapse when he stops his antibiotic, but with it, he works his day job, plays tennis and seems fine. Jason has recovered. He graduated from Brown University in spring 2008 and leaves for film school in the fall.
But Lyme still clouds our lives because our younger son, David, was re-infected in Westchester County a couple of years back and remains ill.
In all my years of research, I never doubted that IDSA was right about early Lyme: Treat the rash and a cure would be guaranteed. So in the summer of 2007, when David called to tell me that friends in his college dorm had recognized a classic bull’s-eye rash on his arm, I was actually relieved: For once, we’d caught it early. A month of antibiotics, I told myself, and David would be cured.
We took a 40-minute drive to Dr. Daniel Cameron’s office in downtown Mount Kisco, N.Y., and his physician assistant easily diagnosed a bull’s-eye-shaped erythema migrans that was an archetype of the form. She prescribed a few weeks of amoxicillin and sent us home.
“When you get a rash so classic that everyone at college tells you it’s Lyme disease, it’s a beautiful thing,” Dan Cameron, now president of ILADS, said at the time.
But by spring 2008, David’s fatigue was so profound, his memory and focus so poor, that he had to drop his classes at Vassar College and come home. Back in New York, doctors discovered gross damage to David’s cranial nerves — irrefutable, IDSA-style proof of inflammatory disease and hardcore evidence of Lyme. Ordering more tests, Cameron found not just Lyme disease but a co-infection — babesiosis — known to complicate the picture and make Lyme harder to treat.
I completed work on my book about this mysterious disease more than a year ago, but I know now that our journey is far from over. Our family, along with many others, continues to deal with the fallout at the frontlines of an epidemic, in that unforgiving land called Lyme.
Pamela Weintraub is a senior editor at Discover Magazine and author of Cure Unknown: Inside the Lyme Epidemic (St. Martin’s Press, 2008). She writes a blog on emerging disease for Psychology Today.
How to Protect Yourself Against Lyme Disease (Back to Top)
For those who live and work in Lyme endemic areas, a little protection goes a long way. You can enjoy nature, according to Pat Smith, president of the Lyme Disease Association, as long as you take some precautions:
* Walk in the middle of trails. Avoid sitting on logs or leaning on trees.
* Wear a hat. Tuck your hair in, if possible.
* Wear a long-sleeved shirt, fitted at the waist.
* Wear boots or shoes, not sandals. No bare feet.
* Wear long pants tucked into high socks, or duct tape around pant bottoms.
* Consider applying Deet for skin and permethrin for clothes (use your own best judgment in weighing exposure to these toxins against risk of tick bites).
* Wear white or light-colored clothing so ticks stand out.
* Check yourself and your children for ticks immediately after outdoor exposure. Repeat the tick check again, three days later. Remember that nymphal (adolescent) ticks can look like freckles. They are the size of poppy seeds.
* If you find an attached tick, remove it carefully with tweezers placed as close to the skin as possible. Pull the tick upward with steady, even pressure, making sure that mouth parts are cleanly removed. Apply antiseptic and call a doctor. Save the tick in a sealed container with a moist cotton ball. Call your state health department to inquire about testing. (Ticks do fall off on their own eventually, so even if you don’t see a tick, it is possible that you may have been exposed to disease.)
* Consult your doctor about treating the tick bite with oral antibiotics. Though the number of days required for this treatment remains controversial, new findings from CDC research suggest that the single dose of treatment generally recommended for this scenario may be inadequate and that a doxycycline sustained release protocol (19 days) the CDC is developing might be more effective.
Finding a Provider (Back to Top)
How to find a doctor to treat your tick-borne disease.
Lyme disease is never pleasant, but if you are exposed in endemic areas of the Northeast, the Midwest or the West Coast and develop the spreading red Lyme rash known as erythema migrans, the best person to consult is your family doctor. The classic Lyme disease rash is considered diagnostic for the disease in these areas, according to the standard guidelines from the Infectious Diseases Society of America (IDSA). Physicians following these widely accepted guidelines will not even have to order a blood test to make a bulletproof diagnosis. For most people without other complications, including other infections from the same tick bite, a month of treatment with oral antibiotics like doxycycline or amoxicillin should cure the disease.
Finding a doctor able to make the diagnosis and treat you adequately becomes far more challenging if you do not see or develop a rash, or if you live outside areas considered most endemic for the disease. Given the debate in the medical community over the classic signs and symptoms for Lyme, the inaccuracy of the tests, and the presence of complicating co-infections, patients in this circumstance can advance into later, harder-to-treat disease before they are ever diagnosed.
In this instance, it may be appropriate to consult a neurologist, rheumatologist or infectious disease doctor in your community for specialized but mainstream care. Following the IDSA guidelines, these physicians will treat these sicker patients with specialized antimicrobials aimed at co-infections, or with a month or two of intravenous Rocephin, which crosses the blood brain barrier and better penetrates the joints, often resolving Lyme disease.
But about 20 percent of patients diagnosed with late-stage Lyme disease report that they fail even this more aggressive treatment; others report that their co-infections are missed. Still sick, they find themselves navigating the tortuous backroads of the Lyme wars. Those seeking clinical evaluation of the range of tick-borne infections or continued treatment for Lyme disease itself — as I did with my own family — may decide to cross the line, leaving the restrictions of the mainstream viewpoint for the alternative world of Lyme doctors, referred to by patients as Lyme-Literate Medical Doctors, or LLMDs. These physicians will test patients for a range of co-infections and treat Lyme disease longer, using antibiotics in combination (as is done with tuberculosis cases) for months and sometimes years.
Many patients report recovery on such protocols — but many do not, and for them, the search for treatment goes on. Some patients consult trained naturopaths, who help them boost their immune systems. One new trend used by neurologists at New York University and Yale involves treatment with IVIG (intravenous immunoglobulin), a blood product rich in immune molecules that can heal damaged nerves.
For reference to a doctor skilled in mainstream protocols, contact the Infectious Diseases Society of America. For reference to a doctor willing to treat tick-borne infection beyond the standard guidelines, contact the Lyme Disease Association or the International Lyme and Associated Diseases Society. (See Web Resources, below.)
Web Resources (Back to Top)
* Infectious Diseases Society of America: www.idsociety.org
* Lyme Disease Association: www.lymediseaseassociation.org
* International Lyme and Associated Diseases Society: www.ilads.or
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Behind the Scenes With Alexandra Coustea
Saturday, February 16, 2008
New test for Lyme disease not being used?
Published: Friday, February 15, 2008,theledger.com
Local Lab's Discovery Waits for Buyers
LAKE ALFRED | A struggling laboratory here is learning it may require more than building a better mousetrap to get the world beating a path to its door.
After developing an improved diagnostic test for Lyme disease, Central Florida Research Inc. in Lake Alfred is still waiting for a crowd at its doorstep.
"These last seven months, nobody in this business has gotten paid," said Tom Long, 55, the lab's executive director. "The revenue has been just enough to cover our expenses."
The staff has shrunk from eight people to three in the past year, Long said. He hopes the new diagnostic tool, called a "Lyme Antigen Test," will make Central Florida Research profitable.
The lab staff developed the antigen test under the direction of its medical director, Clifford Threlkeld, a pathologist and also lab director for the Heart of Florida Regional Medical Center in Davenport. Central Florida Research has applied for a patent, which it hopes to get in 2009.
"I do think it will be successful," Threlkeld said. "It's not the be-all-to-end-all, but it definitely adds to what's out there."
Lyme is a bacterial disease most commonly spread through the bite of a deer tick. In its early stages, the disease causes flu-like symptoms, including fever, fatigue and muscle or joint pain.
Left untreated, the bacteria can cause chronic problems in the heart and nervous system, including cardiac inflammation and paralysis. It can be fatal.
Because Lyme disease shares symptoms with other illnesses, it's very difficult to diagnose.
Even when doctors suspect a patient might have Lyme, the most widely used diagnostic tool, a blood test called a "Western blot," is accurate less than half the time, said Nick Harris, the owner of IGeneX Labs in Palo Alto, Calif., the leading U.S. lab for Western blot screening.
That high rate of "false negatives" - people who test negative despite having the disease - also causes problems for Lyme sufferers, said Lori Hoerl of the Florida Lyme Advocacy Group in Jacksonville, who has the disease.
If a doctor later diagnoses Lyme disease, insurance companies will use a negative Western blot to deny paying for treatment, she said.
The Central Florida Research test represents an improvement because it detects the actual presence of the Lyme bacteria, said Pat Phillips, its lab director. The Western blot detects only antibodies, or substances the body produces in reaction to the bacteria.
The Lyme Antigen Test has proven to be about 90 percent accurate, Long said.
The lab finished development of the test a year ago, he said, but it took seven months to get state and federal licensing to perform it. Since then, Central Florida Research has been trying to spread the word among front-line doctors who treat the disease.
Besides word of mouth, the lab team has an information booth it has taken to medical conferences and seminars, such as a Jan. 19 event in St. Peterburg, he said.
Central Florida Research does about 10 to 20 tests a day, but it has the capacity to do 100 tests, Long said. It charges $250 per test, slightly higher than a typical lab fee.
The lab's Web site, www.centralfloridaresearch.com, also has helped market the test, he added. It's gotten referrals worldwide, including Chile, England, France and Germany.
From a personal standpoint, the results have been satisfying. A Winter Haven woman in her 30s had led an active, vibrant life until last year, when chronic fatigue forced her to drop out of graduate school, Long said. Previous tests were negative, but the antigen test showed she did have the Lyme bacteria.
"She's gotten her life back. She's back in graduate school," he said.
A 60-year-old woman from Chile also had been battling pain and fatigue for years but tested negative for Lyme, Long said. She's undergoing successful treatment after the antigen test proved positive.
Despite the state and federal certifications and the clinical results, Long, Hoerl and Threlkeld agreed Central Florida Research needs to gain the trust of the medical community before the test becomes widely accepted.
Long said he believes the small Lake Alfred lab can develop the same high regard enjoyed by Harris' IGeneX Labs.
"He's developed a reputation," Long added. "There's room in the marketplace for another company."
[ Kevin Bouffard can be reached at kevin.bouffard@theledger.com or at 863-802-7591. ]
Local Lab's Discovery Waits for Buyers
LAKE ALFRED | A struggling laboratory here is learning it may require more than building a better mousetrap to get the world beating a path to its door.
After developing an improved diagnostic test for Lyme disease, Central Florida Research Inc. in Lake Alfred is still waiting for a crowd at its doorstep.
"These last seven months, nobody in this business has gotten paid," said Tom Long, 55, the lab's executive director. "The revenue has been just enough to cover our expenses."
The staff has shrunk from eight people to three in the past year, Long said. He hopes the new diagnostic tool, called a "Lyme Antigen Test," will make Central Florida Research profitable.
The lab staff developed the antigen test under the direction of its medical director, Clifford Threlkeld, a pathologist and also lab director for the Heart of Florida Regional Medical Center in Davenport. Central Florida Research has applied for a patent, which it hopes to get in 2009.
"I do think it will be successful," Threlkeld said. "It's not the be-all-to-end-all, but it definitely adds to what's out there."
Lyme is a bacterial disease most commonly spread through the bite of a deer tick. In its early stages, the disease causes flu-like symptoms, including fever, fatigue and muscle or joint pain.
Left untreated, the bacteria can cause chronic problems in the heart and nervous system, including cardiac inflammation and paralysis. It can be fatal.
Because Lyme disease shares symptoms with other illnesses, it's very difficult to diagnose.
Even when doctors suspect a patient might have Lyme, the most widely used diagnostic tool, a blood test called a "Western blot," is accurate less than half the time, said Nick Harris, the owner of IGeneX Labs in Palo Alto, Calif., the leading U.S. lab for Western blot screening.
That high rate of "false negatives" - people who test negative despite having the disease - also causes problems for Lyme sufferers, said Lori Hoerl of the Florida Lyme Advocacy Group in Jacksonville, who has the disease.
If a doctor later diagnoses Lyme disease, insurance companies will use a negative Western blot to deny paying for treatment, she said.
The Central Florida Research test represents an improvement because it detects the actual presence of the Lyme bacteria, said Pat Phillips, its lab director. The Western blot detects only antibodies, or substances the body produces in reaction to the bacteria.
The Lyme Antigen Test has proven to be about 90 percent accurate, Long said.
The lab finished development of the test a year ago, he said, but it took seven months to get state and federal licensing to perform it. Since then, Central Florida Research has been trying to spread the word among front-line doctors who treat the disease.
Besides word of mouth, the lab team has an information booth it has taken to medical conferences and seminars, such as a Jan. 19 event in St. Peterburg, he said.
Central Florida Research does about 10 to 20 tests a day, but it has the capacity to do 100 tests, Long said. It charges $250 per test, slightly higher than a typical lab fee.
The lab's Web site, www.centralfloridaresearch.com, also has helped market the test, he added. It's gotten referrals worldwide, including Chile, England, France and Germany.
From a personal standpoint, the results have been satisfying. A Winter Haven woman in her 30s had led an active, vibrant life until last year, when chronic fatigue forced her to drop out of graduate school, Long said. Previous tests were negative, but the antigen test showed she did have the Lyme bacteria.
"She's gotten her life back. She's back in graduate school," he said.
A 60-year-old woman from Chile also had been battling pain and fatigue for years but tested negative for Lyme, Long said. She's undergoing successful treatment after the antigen test proved positive.
Despite the state and federal certifications and the clinical results, Long, Hoerl and Threlkeld agreed Central Florida Research needs to gain the trust of the medical community before the test becomes widely accepted.
Long said he believes the small Lake Alfred lab can develop the same high regard enjoyed by Harris' IGeneX Labs.
"He's developed a reputation," Long added. "There's room in the marketplace for another company."
[ Kevin Bouffard can be reached at kevin.bouffard@theledger.com or at 863-802-7591. ]
Tuesday, February 12, 2008
Great Article about Chronic Lyme Disease
Woe to those with chronic Lyme disease
Legislation needed to protect doctors who treat stricken patients
Nov 21, 2007 - 10:04:11 CST.
by Debra Neutkens
Staff Writer
FOREST LAKE — An insidious, chronic disease is creeping into the Forest Lake area and those suffering its debilitating effects are hard-pressed to find treatment.
A "fear factor" exists among doctors who prescribe long-term treatment for patients with Lyme disease. They worry the state medical board (the official name is the Minnesota Board of Medical Practice) will pull their license or slap sanctions against them if antibiotics are given longer than usual.
So sufferers of the bacterium-infected tick bite are rallying support to fight what the president of the Lyme Disease Association calls "a social injustice."
Advocate Pat Smith is a national expert on tick-borne disease. She spoke to politicians and community members recently on behalf of the Minnesota Lyme Action Group, a small, but determined local support group founded by Forest Lake resident Ann Myre.
Their message is simple: Lyme disease is on the rise. Awareness is not.
According to Smith, the nemesis residing in the tiny deer tick that causes Lyme, Borrelia burgdorferi, is becoming established in areas of the state not previously considered high-risk.
And the bad news: the disease is endemic in Forest Lake, meaning highly prevalent.
But Lyme often goes undiagnosed and untreated. Tests are inaccurate, leaving some unlucky victims to fend for themselves because their blood test was negative.
Even those with positive results continue to live with chronic joint pain, heart trouble or neurological damage because most physicians in the state refuse to prescribe long-term antibiotics - about the only remedy to treat chronic Lyme.
City Administrator Chip Robinson can relate to the issue. An avid outdoorsman, Robinson has long suffered neck pain, muscle pain, headaches and an inability to concentrate — all classic signs of Lyme disease.
"I've never found answers to why I have these symptoms. They were just always there and I've learned to live with it," said Robinson. Like 30 to 50 percent of cases, he never had a rash. Only a small number of patients have the telltale "bullseye" rash.
Results from Robinson's Western blot test, a popular blood test that detects Lyme antibodies, was inconclusive, he said. "I was told CDC (Centers for Disease Control) guidelines indicate I don't have Lyme."
Unfortunately, the blot test is complex. The CDC set arbitrary criteria for considering the test positive and it misses many people, said Smith.
Not to be dissuaded, Robinson's strong symptoms keep him on a quest to find a physician willing to treat him long term.
There are less than a handful of doctors in Minnesota who treat Lyme patients. Most Lyme-literate physicians practice in the northeast. The Forest Lake activist group says there are a few doctors in Missouri and California and one in Louisiana, as well.
Robinson made an appointment with a physician knowledgeable about the disease, but his appointment was canceled when his test came back negative. That doctor will take patients only if they have a positive reading using the strict CDC criteria for Western blots.
And there's the rub. The Western blot tests for antibodies against the Lyme bacterium. Yet, during the first year after a tick bite, less than 65 percent of patients produce antibodies and they may not last. By year two, less than 50 percent will have a response.
People suffering from unsuspected Lyme disease are often misdiagnosed as having MS, Parkinson's disease, ALS, Alzheimer's, chronic fatigue, fibromyalgia, Crohn's disease, lupus, autism or a wide variety of psychiatric disorders.
The common treatment for Lyme disease is a two-to-four week course of an oral antibiotic like doxycycline. However, it is not known if this permanently cures the disease. Some patients require IV administration of antibiotics through lines implanted in their chest.
At the special forum held by the support group Nov. 13, Forest Lake Mayor Stev Stegner agreed the issue demands increased awareness.
But more than that, the Minnesota group is looking for state legislation that will allow doctors to treat Lyme disease appropriately and on an individualized basis.
Specifically, they're asking representatives to consider adopting a bill similar to one passed in Rhode Island that protects doctors who treat patients long term for Lyme and other tick-borne diseases against medical board investigations based solely on the use of prolonged courses of antibiotics.
"We need local politicians to take action," said Dr. Betty Maloney, a family practitioner from the Forest Lake area who has late Lyme. "This problem is real. The medical board is very powerful in Minnesota and this forum needs to flex some political muscle. We need a bill."
State Representative Bob Dettmer, Senator Ray Vandeveer and Sean Nienow, district director for Congresswoman Michele Bachmann, attended Smith's presentation. Members of the action group hope to work with the legislators to push a bill through, not an easy task, said Vandeveer, who promised to "assess the climate."
Maloney is a precious resource for the area when it comes to Lyme. She left her practice at the Allina Clinic in 2005 due to Lyme's debilitating effects, but is on the road to recovery and now advocates for Lyme patients. She helps them find resources and get tested, and is willing to talk to their personal physician. "It is encouraging to me that physicians who once could not believe Lyme had so many manifestations now are looking at illnesses they could never identify and finding patients are positive for Lyme."
Treating physicians have their hands tied, she added.
The doctor Robinson wanted to see, for example, is a "Lyme friendly" who is under pressure to not treat infected patients with long-term antibiotics, Maloney told the group.
"He'll only take people with a CDC positive test. And a negative test does not mean you don't have Lyme disease."
According to the Forest Lake doctor, late Lyme cases in the area are mostly neurologic. The screening test for Lyme is very good at picking up patients with Lyme-induced arthritis, but not those with neurologic problems, which may explain why some test results prove false.
Is resistance a factor in the hesitance to use antibiotics long term? "That has been used as an excuse not to prescribe long-term antibiotics," Maloney replied, "but physicians are misinformed. They will prescribe the same long-term antibiotics for acne in teenagers. And there has been no resistance found in this Borrelia species."
Smith calls the Lyme dilemma "a war. There is no way to stop ticks. We need a nationwide effort and people are not sitting at the same table. We need to communicate. Patients aren't able to get treatment.
"There is a society of physicians opposed to treating Lyme," she said. "I travel all over the U.S. talking to groups. People suffering from Lyme are not making this up. They all have the same stories and they are sick. No one is advocating for them and it's a huge social injustice."
Anyone wishing more information can visit the Minnesota Lyme Action Group Web site at www.minnesotalymeactiongroup.com. President Jill Kuschel can be reached at 651-213-1200. Smith's Web site is www.LymeDiseaseAssociation.org.
Press Publications, White Bear Lake, Minnesota
by Debra Neutkens Staff Writer
Legislation needed to protect doctors who treat stricken patients
Nov 21, 2007 - 10:04:11 CST.
by Debra Neutkens
Staff Writer
FOREST LAKE — An insidious, chronic disease is creeping into the Forest Lake area and those suffering its debilitating effects are hard-pressed to find treatment.
A "fear factor" exists among doctors who prescribe long-term treatment for patients with Lyme disease. They worry the state medical board (the official name is the Minnesota Board of Medical Practice) will pull their license or slap sanctions against them if antibiotics are given longer than usual.
So sufferers of the bacterium-infected tick bite are rallying support to fight what the president of the Lyme Disease Association calls "a social injustice."
Advocate Pat Smith is a national expert on tick-borne disease. She spoke to politicians and community members recently on behalf of the Minnesota Lyme Action Group, a small, but determined local support group founded by Forest Lake resident Ann Myre.
Their message is simple: Lyme disease is on the rise. Awareness is not.
According to Smith, the nemesis residing in the tiny deer tick that causes Lyme, Borrelia burgdorferi, is becoming established in areas of the state not previously considered high-risk.
And the bad news: the disease is endemic in Forest Lake, meaning highly prevalent.
But Lyme often goes undiagnosed and untreated. Tests are inaccurate, leaving some unlucky victims to fend for themselves because their blood test was negative.
Even those with positive results continue to live with chronic joint pain, heart trouble or neurological damage because most physicians in the state refuse to prescribe long-term antibiotics - about the only remedy to treat chronic Lyme.
City Administrator Chip Robinson can relate to the issue. An avid outdoorsman, Robinson has long suffered neck pain, muscle pain, headaches and an inability to concentrate — all classic signs of Lyme disease.
"I've never found answers to why I have these symptoms. They were just always there and I've learned to live with it," said Robinson. Like 30 to 50 percent of cases, he never had a rash. Only a small number of patients have the telltale "bullseye" rash.
Results from Robinson's Western blot test, a popular blood test that detects Lyme antibodies, was inconclusive, he said. "I was told CDC (Centers for Disease Control) guidelines indicate I don't have Lyme."
Unfortunately, the blot test is complex. The CDC set arbitrary criteria for considering the test positive and it misses many people, said Smith.
Not to be dissuaded, Robinson's strong symptoms keep him on a quest to find a physician willing to treat him long term.
There are less than a handful of doctors in Minnesota who treat Lyme patients. Most Lyme-literate physicians practice in the northeast. The Forest Lake activist group says there are a few doctors in Missouri and California and one in Louisiana, as well.
Robinson made an appointment with a physician knowledgeable about the disease, but his appointment was canceled when his test came back negative. That doctor will take patients only if they have a positive reading using the strict CDC criteria for Western blots.
And there's the rub. The Western blot tests for antibodies against the Lyme bacterium. Yet, during the first year after a tick bite, less than 65 percent of patients produce antibodies and they may not last. By year two, less than 50 percent will have a response.
People suffering from unsuspected Lyme disease are often misdiagnosed as having MS, Parkinson's disease, ALS, Alzheimer's, chronic fatigue, fibromyalgia, Crohn's disease, lupus, autism or a wide variety of psychiatric disorders.
The common treatment for Lyme disease is a two-to-four week course of an oral antibiotic like doxycycline. However, it is not known if this permanently cures the disease. Some patients require IV administration of antibiotics through lines implanted in their chest.
At the special forum held by the support group Nov. 13, Forest Lake Mayor Stev Stegner agreed the issue demands increased awareness.
But more than that, the Minnesota group is looking for state legislation that will allow doctors to treat Lyme disease appropriately and on an individualized basis.
Specifically, they're asking representatives to consider adopting a bill similar to one passed in Rhode Island that protects doctors who treat patients long term for Lyme and other tick-borne diseases against medical board investigations based solely on the use of prolonged courses of antibiotics.
"We need local politicians to take action," said Dr. Betty Maloney, a family practitioner from the Forest Lake area who has late Lyme. "This problem is real. The medical board is very powerful in Minnesota and this forum needs to flex some political muscle. We need a bill."
State Representative Bob Dettmer, Senator Ray Vandeveer and Sean Nienow, district director for Congresswoman Michele Bachmann, attended Smith's presentation. Members of the action group hope to work with the legislators to push a bill through, not an easy task, said Vandeveer, who promised to "assess the climate."
Maloney is a precious resource for the area when it comes to Lyme. She left her practice at the Allina Clinic in 2005 due to Lyme's debilitating effects, but is on the road to recovery and now advocates for Lyme patients. She helps them find resources and get tested, and is willing to talk to their personal physician. "It is encouraging to me that physicians who once could not believe Lyme had so many manifestations now are looking at illnesses they could never identify and finding patients are positive for Lyme."
Treating physicians have their hands tied, she added.
The doctor Robinson wanted to see, for example, is a "Lyme friendly" who is under pressure to not treat infected patients with long-term antibiotics, Maloney told the group.
"He'll only take people with a CDC positive test. And a negative test does not mean you don't have Lyme disease."
According to the Forest Lake doctor, late Lyme cases in the area are mostly neurologic. The screening test for Lyme is very good at picking up patients with Lyme-induced arthritis, but not those with neurologic problems, which may explain why some test results prove false.
Is resistance a factor in the hesitance to use antibiotics long term? "That has been used as an excuse not to prescribe long-term antibiotics," Maloney replied, "but physicians are misinformed. They will prescribe the same long-term antibiotics for acne in teenagers. And there has been no resistance found in this Borrelia species."
Smith calls the Lyme dilemma "a war. There is no way to stop ticks. We need a nationwide effort and people are not sitting at the same table. We need to communicate. Patients aren't able to get treatment.
"There is a society of physicians opposed to treating Lyme," she said. "I travel all over the U.S. talking to groups. People suffering from Lyme are not making this up. They all have the same stories and they are sick. No one is advocating for them and it's a huge social injustice."
Anyone wishing more information can visit the Minnesota Lyme Action Group Web site at www.minnesotalymeactiongroup.com. President Jill Kuschel can be reached at 651-213-1200. Smith's Web site is www.LymeDiseaseAssociation.org.
Press Publications, White Bear Lake, Minnesota
by Debra Neutkens Staff Writer
Saturday, February 2, 2008
Great Article from The Pennsyvania Gazette about Lyme Disease
Tick Doc
Class of ’87 | After suffering for 30 years from what doctors repeatedly identified as a cardiac disease of unknown origin, Robert Phillips developed heart failure severe enough to bring him to the verge of a heart transplant. Fortunately, the procedure was not needed.
Phillips was diagnosed and treated for advanced Lyme disease—one of the fastest spreading epidemics in the world, and one of the most debilitating. Since his treatment a decade ago, Phillips has enjoyed the benefits of normal cardiac function.
If Lyme is detected and treated properly at the onset of infection, there are usually no long-term medical repercussions. Left untreated or under-treated, however, it becomes an insidious illness, often inducing a myriad of acute and chronic neurological, musculoskeletal, rheumatologic, cardiac, and neuropsychiatric symptoms. Lyme has been identified in medical journals as a probable cause of multiple sclerosis, rheumatoid arthritis, lupus, fibromyalgia, Alzheimer’s, and Lou Gehrig’s disease, to name a few.
For saving his life (and making it worth living again), Phillips can thank Dr. Steven Phillips W’87—his son, who happens to be a leader in the fight against Lyme and other tick-borne diseases. After graduating from Wharton in 1987, the younger Phillips was preparing to enter the business world when a friend who had recently finished medical school dared him to pursue a career in medicine.
That dare would end up saving—and improving—a lot of lives. Phillips has focused his efforts on combating Lyme ever since he began his residency at the Yale University School of Medicine in 1993.
“I knew a lot of people with Lyme from home,” the New York state native says. “Lyme has its fingers in so many disease states of ‘unknown etiology.’ Even if [it] contributes to only a small percent, the implications are staggering.”
A significant percentage of the medical community still resists accepting Lyme and related tick-borne diseases as such severe threats. “Medical dogma changes slowly, over decades,” says Phillips, who remains confident that his work will ultimately enlighten his colleagues.
In 1996, he stepped away from his research on the microbiology and immunology of B. Burgdorferi (the Lyme bacteria) and established a private practice. Today, operating from his cozy clapboard base camp in Wilton, Connecticut, Phillips wears a casual button-down shirt and blue jeans. The perpetually ringing telephones and fax machines are manned by three women—one of them his mother, Gladys. Despite his laidback demeanor and arid sense of humor, Phillips has a reputation for caring intensely for each patient.
By the time they arrive at his door, most of his patients have already sought the aid of other doctors in every medical field. Phillips is not committed to commonplace Lyme protocol, and he does whatever it takes to alleviate his patients’ suffering and improve the quality of their lives. As a result, he’s in high demand.
“There’s a wait of a few months, two to six depending on the time of the year,” he says. His patients come from all 50 states and many Western European countries.
Lyme patients are not the only people seeking his expertise. Network television and syndicated radio programs have sought his commentary. The governments of Connecticut, Rhode Island, and New York—all in the epicenter of tick-borne diseases—have invited him to provide testimony. His presentations have prompted legislation to fight Lyme and increase education efforts.
In his critique of “Lyme Disease Testing” (Lancet Infectious Disease, March 2006), Phillips makes clear that Lyme disease is taking on epidemic proportions because of the nonexistent efforts to improve an atrocious testing and reporting system—and he implicates government agencies, like the Centers for Disease Control and Prevention.
Having served as president of the International Lyme and Associated Diseases Society (ILADS), Phillips is now a member of the professional advisory board for the Turn The Corner Foundation—a group more focused on funding research and treatments.
With the lay population still mostly ignorant about Lyme, Phillips wishes he could go on a speaking tour, in order to “educate so patients may have more access to medical care,” on a broader scale. In the meantime, he enjoys being a jock in his spare time. As a former instructor, the doctor has a particular soft spot for tennis, but there are other games he enjoys, too:
“Any sports that don’t involve tick exposure.”
—Eric Karlan C’09
Profiles : Events : Notes : Obituaries
Alumnae partner in Nurse-Family Partnership
Wire actor John Doman C’66
Slightly-too-slow bull runner Michael Lenahan C’05
Lyme fighter Steven Phillips W’87
Waste wrapper David Stoller C’72
Sept|Oct 07 Contents
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Class of ’87 | After suffering for 30 years from what doctors repeatedly identified as a cardiac disease of unknown origin, Robert Phillips developed heart failure severe enough to bring him to the verge of a heart transplant. Fortunately, the procedure was not needed.
Phillips was diagnosed and treated for advanced Lyme disease—one of the fastest spreading epidemics in the world, and one of the most debilitating. Since his treatment a decade ago, Phillips has enjoyed the benefits of normal cardiac function.
If Lyme is detected and treated properly at the onset of infection, there are usually no long-term medical repercussions. Left untreated or under-treated, however, it becomes an insidious illness, often inducing a myriad of acute and chronic neurological, musculoskeletal, rheumatologic, cardiac, and neuropsychiatric symptoms. Lyme has been identified in medical journals as a probable cause of multiple sclerosis, rheumatoid arthritis, lupus, fibromyalgia, Alzheimer’s, and Lou Gehrig’s disease, to name a few.
For saving his life (and making it worth living again), Phillips can thank Dr. Steven Phillips W’87—his son, who happens to be a leader in the fight against Lyme and other tick-borne diseases. After graduating from Wharton in 1987, the younger Phillips was preparing to enter the business world when a friend who had recently finished medical school dared him to pursue a career in medicine.
That dare would end up saving—and improving—a lot of lives. Phillips has focused his efforts on combating Lyme ever since he began his residency at the Yale University School of Medicine in 1993.
“I knew a lot of people with Lyme from home,” the New York state native says. “Lyme has its fingers in so many disease states of ‘unknown etiology.’ Even if [it] contributes to only a small percent, the implications are staggering.”
A significant percentage of the medical community still resists accepting Lyme and related tick-borne diseases as such severe threats. “Medical dogma changes slowly, over decades,” says Phillips, who remains confident that his work will ultimately enlighten his colleagues.
In 1996, he stepped away from his research on the microbiology and immunology of B. Burgdorferi (the Lyme bacteria) and established a private practice. Today, operating from his cozy clapboard base camp in Wilton, Connecticut, Phillips wears a casual button-down shirt and blue jeans. The perpetually ringing telephones and fax machines are manned by three women—one of them his mother, Gladys. Despite his laidback demeanor and arid sense of humor, Phillips has a reputation for caring intensely for each patient.
By the time they arrive at his door, most of his patients have already sought the aid of other doctors in every medical field. Phillips is not committed to commonplace Lyme protocol, and he does whatever it takes to alleviate his patients’ suffering and improve the quality of their lives. As a result, he’s in high demand.
“There’s a wait of a few months, two to six depending on the time of the year,” he says. His patients come from all 50 states and many Western European countries.
Lyme patients are not the only people seeking his expertise. Network television and syndicated radio programs have sought his commentary. The governments of Connecticut, Rhode Island, and New York—all in the epicenter of tick-borne diseases—have invited him to provide testimony. His presentations have prompted legislation to fight Lyme and increase education efforts.
In his critique of “Lyme Disease Testing” (Lancet Infectious Disease, March 2006), Phillips makes clear that Lyme disease is taking on epidemic proportions because of the nonexistent efforts to improve an atrocious testing and reporting system—and he implicates government agencies, like the Centers for Disease Control and Prevention.
Having served as president of the International Lyme and Associated Diseases Society (ILADS), Phillips is now a member of the professional advisory board for the Turn The Corner Foundation—a group more focused on funding research and treatments.
With the lay population still mostly ignorant about Lyme, Phillips wishes he could go on a speaking tour, in order to “educate so patients may have more access to medical care,” on a broader scale. In the meantime, he enjoys being a jock in his spare time. As a former instructor, the doctor has a particular soft spot for tennis, but there are other games he enjoys, too:
“Any sports that don’t involve tick exposure.”
—Eric Karlan C’09
Profiles : Events : Notes : Obituaries
Alumnae partner in Nurse-Family Partnership
Wire actor John Doman C’66
Slightly-too-slow bull runner Michael Lenahan C’05
Lyme fighter Steven Phillips W’87
Waste wrapper David Stoller C’72
Sept|Oct 07 Contents
Gazette Home
Previous issue’s section
--------------------------------------------------------------------------------
©2007 The Pennsylvania Gazette
Last modified 08/30/07
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About Me
- rbowman838
- Pueblo, Colorado, United States
- I am a Chronic Lyme disease patient. I was bitten by a tick in 2001 and have been very sick ever since. Subsequently, you could say I am a Lyme disease junkie.I thirst for any information about it,any treatments, research etc. It has been a life altering experience, which has kept me away from our business and at home most of the time. I use to own A-1 Barricade and Sign Inc. here in Pueblo, Co, but because of the Lyme disease, my sons are running the business for the most part with my wife. I have been married for 48 years to a wonderful woman who is also my best friend. We have five children, all grown. Four boys live here in Pueblo and my only daughter lives in Bonney Lake, Washington. We miss her a lot. I have 7 grandchildren, which are the greatest of all. They are all exceptionally beautiful! The last thing you need to know about me is that I am proud to be a member of The Church of Jesus Christ of Latter-Day Saints. Because of this I have the knowledge that life is eternal and that it does not end here, but it will go on after death because of the Atonement of Jesus Christ. This truth I bear witness of!