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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
Tuesday, May 19, 2009
Another great article to share!
Hi Friends,
Here is yet another great article about the struggles people who have Lyme disease have. It is amazing how much alike the stories of struggles are. This story is courtesy of our friends at MSNBC.
Be well,
Richard
All she lost: My sister's battle with Lyme disease
After a decade of unbearable side effects, she decided to end her life
By John Baiata
NBC News producer
updated 6:14 a.m. MT, Mon., May 18, 2009
The phone had not even finished its first ring before my wife, Anna, snatched it from its cradle. Concern was etched in her face as she handed me the receiver: “It’s the police. It’s about Sue.”
My stomach dropped. My older sister had disappeared the day before and my family feared for her safety. “I’m sorry to have to tell you this,” the police lieutenant said in an even voice, “but we found your sister dead this afternoon. We have reason to believe it was a suicide. We’re here with your mother now.”
I fought the urge to scream as my mind went in a million directions. “Do not leave my mother by herself,” I urged the lieutenant over the phone. “I’ll be there in a little more than an hour.”
I lurched outside and clung tightly to the deck railing, while everything else seemed to spin violently around me. Anna grabbed me with both hands. “What happened?!”
“She really did it this time,“ I said. “She killed herself.”
In the decade or so before Sue took her own life at age 46 on August 21, 2005, my sister Dawn, my mother and I had become all too familiar with advanced Lyme disease, which had slowly, inexorably diminished Sue’s life.
Sometime in the mid 1990s, my sister contracted Lyme disease, likely through being bitten by a deer tick or black-legged tick. The bacterium that had introduced itself to Sue’s bloodstream went undetected, and then was misdiagnosed for the better part of two years.
Identified early, a short course of oral antibiotics will cure the majority of cases of Lyme disease — more than 27,000 cases were reported in the U.S. in 2007 — and wipe out the typical symptoms of headaches, fatigue and a circular rash near the area of the bite. But left untreated, the disease can affect the heart and nervous system, causing joint pain. Sue faced a parade of symptoms including migraines, severe pain in her neck and major joints and staggering exhaustion.
Each one narrowed the prism through which she lived her life. Sue had to leave her job as a facilities manager to go on disability, and lived with my mother in the Long Island home where we were raised. On her good days, she would spend hours in the gardens she had lovingly cultivated in the expanse of the backyard. More than likely it was there too where the tick which bore the disease that would seal her fate attached itself to her.
On her bad days, she would stay in bed with the shades drawn, cuddled with the dog she loved unconditionally, her beloved Chihuahua, Katie. She would emerge only briefly to have some tea and a bite to eat, and a few words with our mom.
Still, she had accepted what her life had become. On those good days she could still fill the room with laughter. She would mine the late-night comedians for material but never really needed to. Making people laugh came naturally to her.
Her life became more attuned to the seasons than ever. She knew instinctively how to grow just about anything. She kept a pair of pruners in her car in case she happened across something that would make its way into one of her many centerpieces. One fall while driving through a rural part of northern New Jersey, she forced me to pull over to the side of the road, disappearing into a thicket of brush and trees. She emerged moments later holding a fistful of exotic-looking flowers over her head, grinning ear to ear like she’d just been handed an Oscar. One Christmas season, in a burst of energy, she decorated the entire house while my mom was at work. The memory of walking through the front door that day still lights up my mother’s face.
The agony of sound
Despite what Lyme disease had already taken, it was not done with her. A crueler, more insidious phase awaited. She began to develop an aversion to noises that had never bothered her before. Everyday sounds like the closing of a door or the cry of a child would cause her to cringe. A passing lawn mower or motorcycle would send her running for her room. The disease’s attack on her central nervous system had brought on hyperacusis, a severe sensitivity to sound. And it became progressively worse.
It was as if a volume dial, set on high, had broken off, and everything in her aural experience was overmodulated. Softer sounds were tolerable. Sharper sounds were not, and painfully so for her.
Hyperacusis, which can be brought on by trauma to the inner ear, is also thought to be a processing problem with the way the brain perceives sound, which seems much more likely in my sister’s case.
Dr. Paul Auwaerter, clinical director of infectious diseases at John Hopkins University School of Medicine and a leading specialist on Lyme disease, describes hyperacusis as “a bit like the old fashioned AM radios. When you turn the “gain” button up you get more stations, but you get a lot more static, too.”
One of the enduring frustrations for my sister, and for those of us who loved her, was the failure of her doctors to recognize what was wrong. She was misdiagnosed twice in the early stages of the disease — once with Chronic Fatigue Syndrome, the second time with Epstein-Barr virus. She was accused of exaggerating her symptoms to avoid work, or inventing them in order to get pain medication. By the time anyone thought to give her a definitive blood test for Lyme, the disease was on the march.
Patients treated in the early stages — within about two to four weeks after the onset of symptoms — usually make a complete recovery. Not everyone is so fortunate.
“It’s hard to put a number on how common misdiagnoses are, but early detection can be difficult," says Auwaerter. "It takes the body some time to generate enough antibodies to show up in testing, and the symptoms are common to many other ailments. There’s a general sense that if you have the infection longer, you’ll have extended symptoms.”
For those who are diagnosed late and have persistent symptoms, some doctors will prescribe an extended antibiotic regimen. That is a controversial approach, however, as several studies have shown it not to be an effective strategy.
There is also considerable debate in the medical community and with advocacy groups over some of the symptoms of “advanced” or “persistent” Lyme disease, like Sue had, and how to treat them. One theory, based on research studies, suggests that people who suffer from post-Lyme disease symptoms “may be genetically predisposed to develop an autoimmune response that contributes to their symptoms.”
'It's like they're screaming'
Sue was determined to deal with the progression of the disease — and especially the hyperacusis — on her own terms. She went on the Internet and did exhaustive research. She kept in contact with another sufferer of advanced Lyme who lived in New Jersey, comparing notes on their progressive symptoms. And she ping-ponged from specialist to specialist, desperate to find someone who could help, someone who believed her. She took to wearing ear-plugs, then sound-proof headphones. But it was akin to spitting in the ocean. It made no discernible difference.
“Sometimes,” she told me, “when people are talking to me, even if they’re whispering ... it’s like they’re screaming.”
My mother found her one day in her room, unresponsive and foam coming from her mouth. A long suicide note was tucked in a dresser drawer. She’d taken a bunch of pain pills from two prescription medications, but would live. When I arrived at the hospital my mother was outside stealing a cigarette, crying and ashen. When Sue came to, she was enraged that my mother had intervened. In the days after, an uncomfortable dynamic followed: Dawn and I were naturally supportive of my mother, and yet entirely empathetic to my sister’s situation. A common enemy soon emerged, however. Her doctors wanted her committed to the psychiatric ward.
We argued vehemently that she was not crazy. She was suffering from the advanced stages of a debilitating disease, and had left behind a reasoned, lucid note explaining her actions.
We eventually got her home and struck a wary truce: we would redouble our efforts to help her navigate the maze of health-care providers in search of some relief, and she would simply not give up. She was sent to a therapist, and placed on medication for depression — something she had struggled with even before contracting Lyme disease.
In search of a quieter neighborhood without the noises that were agony for Sue, my mom reluctantly put the house up for sale — the one that held so many memories for all of us, and Sue tore herself away from the gardens she loved. They moved, and then moved again, finally settling in a 55 and older community that they thought offered the quiet my sister so desperately sought. The first day the landscapers came by with their torturous weed-wackers, it became clear there would be no silent refuge.
Asking to be made deaf
Sue came to a drastic, but, given the circumstances, reasonable conclusion: she wanted to be surgically deafened. My sister — the same one who turned me on to all manner of wonderful music, who liked nothing better than lying on the beach listening to the sounds of the waves and seagulls, for whom peals of laughter were a siren’s song — would rather go deaf than endure any more pain. Now all she had to do was find a doctor who would do it.
No doctor would. They either did not believe the extent of her pain, felt it was too drastic a measure, or cited the “do no harm” tenet of the Hippocratic oath.
The last time I saw my sister alive was on one of her good days, in the summer of 2005. I had driven out to Long Island on a Saturday, and we spent the day together. We took a drive, and she asked me what music I was listening to. She could barely stand listening to music anymore, but she still wanted to know what was out there. I played a few tracks for her at the softest volume possible, and she laid her head back and smiled. Later, we went for a swim and she cracked a few jokes about sharing a pool with a bunch of people 20 and 30 years her senior. Looking back, the day seems impossible. A mirage.
Later that week, I called to see if it was OK to come out that weekend with my family. Sue was godmother to my oldest, Alexa, but had yet to meet my son Luke, who at the time was 3 months old. She wanted desperately to see him — and I to show him off — but she was fearful of the noise a crying baby would make. She urged me to come, and offered to leave the house in order to avoid the noise. I put the visit off again — a decision I regret to this day.
When my sister attempted suicide the second time, she was determined that there would be no intervention. Sue was up and dressed early that day in August, and told my mom she was going to the mall. She called later that day to say she had met a friend and would be home late, not to worry. Instead, she checked herself into a motel along a busy stretch of New York highway, affixed a bunch of morphine patches to her body, and lay down to die in an empty motel room. There was no note. I think, in Sue’s mind, her actions no longer required an explanation.
In the days following her death, my sister Dawn and I did our best to simultaneously deal with our grief and to support my mother, whose own grief had turned her near catatonic. The thought of never seeing Sue again, of never touching her or hearing the sound of her voice, was overwhelming. What was most painful for me was the knowledge that she would not be around to see my children grow. She’d never again get to spoil her goddaughter. And she had never met my son, Luke.
The day of her funeral, the visitation room was closed to all but immediate family just before her body was to be moved to the church. I walked in with Luke in my arms, and closed the door behind me. I placed his tiny hands in mine, and pressed them against my sister’s casket. “Sue, this is my beautiful boy, Luke,” I whispered.
“Luke, meet your wonderful Aunt Sue.”
I have a favorite picture I keep on my dresser of Sue with her arms wrapped around me on my wedding day. Her face is lit with undiluted joy. Joy for me. Joy for the moment. There are times still when my longing to have her back hurts as deeply as the day she left us. But mostly when I think of her now, I think of all the times, and all of the little ways she expressed that same unbridled passion for life.
My sister fought valiantly against a disease that had diminished the quality of that life to a level that was no longer acceptable to her. It never once diminished her spirit. Through it all, all she really wanted was relief to her pain, and for someone to believe her story.
John Baiata is a senior editor with NBC News.
© 2009 MSNBC Interactive. Reprints
URL: http://www.msnbc.msn.com/id/30725967/
MSN Privacy . Legal
© 2009 MSNBC.com
Here is yet another great article about the struggles people who have Lyme disease have. It is amazing how much alike the stories of struggles are. This story is courtesy of our friends at MSNBC.
Be well,
Richard
All she lost: My sister's battle with Lyme disease
After a decade of unbearable side effects, she decided to end her life
By John Baiata
NBC News producer
updated 6:14 a.m. MT, Mon., May 18, 2009
The phone had not even finished its first ring before my wife, Anna, snatched it from its cradle. Concern was etched in her face as she handed me the receiver: “It’s the police. It’s about Sue.”
My stomach dropped. My older sister had disappeared the day before and my family feared for her safety. “I’m sorry to have to tell you this,” the police lieutenant said in an even voice, “but we found your sister dead this afternoon. We have reason to believe it was a suicide. We’re here with your mother now.”
I fought the urge to scream as my mind went in a million directions. “Do not leave my mother by herself,” I urged the lieutenant over the phone. “I’ll be there in a little more than an hour.”
I lurched outside and clung tightly to the deck railing, while everything else seemed to spin violently around me. Anna grabbed me with both hands. “What happened?!”
“She really did it this time,“ I said. “She killed herself.”
In the decade or so before Sue took her own life at age 46 on August 21, 2005, my sister Dawn, my mother and I had become all too familiar with advanced Lyme disease, which had slowly, inexorably diminished Sue’s life.
Sometime in the mid 1990s, my sister contracted Lyme disease, likely through being bitten by a deer tick or black-legged tick. The bacterium that had introduced itself to Sue’s bloodstream went undetected, and then was misdiagnosed for the better part of two years.
Identified early, a short course of oral antibiotics will cure the majority of cases of Lyme disease — more than 27,000 cases were reported in the U.S. in 2007 — and wipe out the typical symptoms of headaches, fatigue and a circular rash near the area of the bite. But left untreated, the disease can affect the heart and nervous system, causing joint pain. Sue faced a parade of symptoms including migraines, severe pain in her neck and major joints and staggering exhaustion.
Each one narrowed the prism through which she lived her life. Sue had to leave her job as a facilities manager to go on disability, and lived with my mother in the Long Island home where we were raised. On her good days, she would spend hours in the gardens she had lovingly cultivated in the expanse of the backyard. More than likely it was there too where the tick which bore the disease that would seal her fate attached itself to her.
On her bad days, she would stay in bed with the shades drawn, cuddled with the dog she loved unconditionally, her beloved Chihuahua, Katie. She would emerge only briefly to have some tea and a bite to eat, and a few words with our mom.
Still, she had accepted what her life had become. On those good days she could still fill the room with laughter. She would mine the late-night comedians for material but never really needed to. Making people laugh came naturally to her.
Her life became more attuned to the seasons than ever. She knew instinctively how to grow just about anything. She kept a pair of pruners in her car in case she happened across something that would make its way into one of her many centerpieces. One fall while driving through a rural part of northern New Jersey, she forced me to pull over to the side of the road, disappearing into a thicket of brush and trees. She emerged moments later holding a fistful of exotic-looking flowers over her head, grinning ear to ear like she’d just been handed an Oscar. One Christmas season, in a burst of energy, she decorated the entire house while my mom was at work. The memory of walking through the front door that day still lights up my mother’s face.
The agony of sound
Despite what Lyme disease had already taken, it was not done with her. A crueler, more insidious phase awaited. She began to develop an aversion to noises that had never bothered her before. Everyday sounds like the closing of a door or the cry of a child would cause her to cringe. A passing lawn mower or motorcycle would send her running for her room. The disease’s attack on her central nervous system had brought on hyperacusis, a severe sensitivity to sound. And it became progressively worse.
It was as if a volume dial, set on high, had broken off, and everything in her aural experience was overmodulated. Softer sounds were tolerable. Sharper sounds were not, and painfully so for her.
Hyperacusis, which can be brought on by trauma to the inner ear, is also thought to be a processing problem with the way the brain perceives sound, which seems much more likely in my sister’s case.
Dr. Paul Auwaerter, clinical director of infectious diseases at John Hopkins University School of Medicine and a leading specialist on Lyme disease, describes hyperacusis as “a bit like the old fashioned AM radios. When you turn the “gain” button up you get more stations, but you get a lot more static, too.”
One of the enduring frustrations for my sister, and for those of us who loved her, was the failure of her doctors to recognize what was wrong. She was misdiagnosed twice in the early stages of the disease — once with Chronic Fatigue Syndrome, the second time with Epstein-Barr virus. She was accused of exaggerating her symptoms to avoid work, or inventing them in order to get pain medication. By the time anyone thought to give her a definitive blood test for Lyme, the disease was on the march.
Patients treated in the early stages — within about two to four weeks after the onset of symptoms — usually make a complete recovery. Not everyone is so fortunate.
“It’s hard to put a number on how common misdiagnoses are, but early detection can be difficult," says Auwaerter. "It takes the body some time to generate enough antibodies to show up in testing, and the symptoms are common to many other ailments. There’s a general sense that if you have the infection longer, you’ll have extended symptoms.”
For those who are diagnosed late and have persistent symptoms, some doctors will prescribe an extended antibiotic regimen. That is a controversial approach, however, as several studies have shown it not to be an effective strategy.
There is also considerable debate in the medical community and with advocacy groups over some of the symptoms of “advanced” or “persistent” Lyme disease, like Sue had, and how to treat them. One theory, based on research studies, suggests that people who suffer from post-Lyme disease symptoms “may be genetically predisposed to develop an autoimmune response that contributes to their symptoms.”
'It's like they're screaming'
Sue was determined to deal with the progression of the disease — and especially the hyperacusis — on her own terms. She went on the Internet and did exhaustive research. She kept in contact with another sufferer of advanced Lyme who lived in New Jersey, comparing notes on their progressive symptoms. And she ping-ponged from specialist to specialist, desperate to find someone who could help, someone who believed her. She took to wearing ear-plugs, then sound-proof headphones. But it was akin to spitting in the ocean. It made no discernible difference.
“Sometimes,” she told me, “when people are talking to me, even if they’re whispering ... it’s like they’re screaming.”
My mother found her one day in her room, unresponsive and foam coming from her mouth. A long suicide note was tucked in a dresser drawer. She’d taken a bunch of pain pills from two prescription medications, but would live. When I arrived at the hospital my mother was outside stealing a cigarette, crying and ashen. When Sue came to, she was enraged that my mother had intervened. In the days after, an uncomfortable dynamic followed: Dawn and I were naturally supportive of my mother, and yet entirely empathetic to my sister’s situation. A common enemy soon emerged, however. Her doctors wanted her committed to the psychiatric ward.
We argued vehemently that she was not crazy. She was suffering from the advanced stages of a debilitating disease, and had left behind a reasoned, lucid note explaining her actions.
We eventually got her home and struck a wary truce: we would redouble our efforts to help her navigate the maze of health-care providers in search of some relief, and she would simply not give up. She was sent to a therapist, and placed on medication for depression — something she had struggled with even before contracting Lyme disease.
In search of a quieter neighborhood without the noises that were agony for Sue, my mom reluctantly put the house up for sale — the one that held so many memories for all of us, and Sue tore herself away from the gardens she loved. They moved, and then moved again, finally settling in a 55 and older community that they thought offered the quiet my sister so desperately sought. The first day the landscapers came by with their torturous weed-wackers, it became clear there would be no silent refuge.
Asking to be made deaf
Sue came to a drastic, but, given the circumstances, reasonable conclusion: she wanted to be surgically deafened. My sister — the same one who turned me on to all manner of wonderful music, who liked nothing better than lying on the beach listening to the sounds of the waves and seagulls, for whom peals of laughter were a siren’s song — would rather go deaf than endure any more pain. Now all she had to do was find a doctor who would do it.
No doctor would. They either did not believe the extent of her pain, felt it was too drastic a measure, or cited the “do no harm” tenet of the Hippocratic oath.
The last time I saw my sister alive was on one of her good days, in the summer of 2005. I had driven out to Long Island on a Saturday, and we spent the day together. We took a drive, and she asked me what music I was listening to. She could barely stand listening to music anymore, but she still wanted to know what was out there. I played a few tracks for her at the softest volume possible, and she laid her head back and smiled. Later, we went for a swim and she cracked a few jokes about sharing a pool with a bunch of people 20 and 30 years her senior. Looking back, the day seems impossible. A mirage.
Later that week, I called to see if it was OK to come out that weekend with my family. Sue was godmother to my oldest, Alexa, but had yet to meet my son Luke, who at the time was 3 months old. She wanted desperately to see him — and I to show him off — but she was fearful of the noise a crying baby would make. She urged me to come, and offered to leave the house in order to avoid the noise. I put the visit off again — a decision I regret to this day.
When my sister attempted suicide the second time, she was determined that there would be no intervention. Sue was up and dressed early that day in August, and told my mom she was going to the mall. She called later that day to say she had met a friend and would be home late, not to worry. Instead, she checked herself into a motel along a busy stretch of New York highway, affixed a bunch of morphine patches to her body, and lay down to die in an empty motel room. There was no note. I think, in Sue’s mind, her actions no longer required an explanation.
In the days following her death, my sister Dawn and I did our best to simultaneously deal with our grief and to support my mother, whose own grief had turned her near catatonic. The thought of never seeing Sue again, of never touching her or hearing the sound of her voice, was overwhelming. What was most painful for me was the knowledge that she would not be around to see my children grow. She’d never again get to spoil her goddaughter. And she had never met my son, Luke.
The day of her funeral, the visitation room was closed to all but immediate family just before her body was to be moved to the church. I walked in with Luke in my arms, and closed the door behind me. I placed his tiny hands in mine, and pressed them against my sister’s casket. “Sue, this is my beautiful boy, Luke,” I whispered.
“Luke, meet your wonderful Aunt Sue.”
I have a favorite picture I keep on my dresser of Sue with her arms wrapped around me on my wedding day. Her face is lit with undiluted joy. Joy for me. Joy for the moment. There are times still when my longing to have her back hurts as deeply as the day she left us. But mostly when I think of her now, I think of all the times, and all of the little ways she expressed that same unbridled passion for life.
My sister fought valiantly against a disease that had diminished the quality of that life to a level that was no longer acceptable to her. It never once diminished her spirit. Through it all, all she really wanted was relief to her pain, and for someone to believe her story.
John Baiata is a senior editor with NBC News.
© 2009 MSNBC Interactive. Reprints
URL: http://www.msnbc.msn.com/id/30725967/
MSN Privacy . Legal
© 2009 MSNBC.com
Sunday, May 10, 2009
A Disease in Debate
Here is a great article sent to me. Please take time to read it. Some great Websites are listed in it.
Be well,
Richard
A disease in debate
A Bend woman has chronic Lyme disease, but her diagnosis and treatment are controversial
By Betsy Q. Cliff / The Bulletin
Published: May 07. 2009 4:00AM PST
• Oregon Division of Public Health, Lyme disease information: www.oregon .gov/DHS/ph/acd/diseases/lyme/lyme.shtml
• Infectious Diseases Society of America: www.idsociety.org
• International Lyme and Associated Diseases Society: www.ilads.org
• Jamie Israel’s Web site: www.jamiesmiracle.com
Comment on this article:
The woman in the YouTube videos is pretty, but thin and pale.
In her first video post, from a year ago, Jamie Israel sits in a bathroom in her house near Summit High School in Bend, describing her symptoms. Pushing hair out of her face, she says she has severe insomnia, a racing heart, pain and fatigue. She’s having a hard time, she says, caring for her then-3-year-old son.
In one short post, she cries, worried she can’t take it anymore. “I’m so sick,” she says to the camera. “I can’t handle it.”
Israel believes she is suffering from chronic Lyme disease caused by a tick bite years ago. Her symptoms have dismantled her life piece by piece.
It started with aches in her jaw, then it became a stiff neck and fatigue. Insomnia set in. Her weight dropped. She became too dizzy to drive. Finally, it culminated in seizures, sending her to the emergency room.
She cannot find a doctor in Central Oregon who will treat chronic Lyme disease. Instead, the 32-year-old now flies to South Carolina every month for treatment.
Many physicians do not believe her disease exists. Instead, they say it’s likely something else, perhaps fibromyalgia, chronic fatigue syndrome or a psychological illness. She has been to at least eight doctors since her illness began.
There are hundreds or perhaps thousands of patients like Israel in the United States. They are often seriously ill, with debilitating symptoms. But they are caught in one of the most heated controversies in medicine.
Some doctors believe that chronic Lyme disease is a serious problem that needs to be treated aggressively with antibiotics. In the other camp, an equally adamant group of physicians believes that Lyme disease is over-diagnosed and over-treated; some doubt the existence of chronic Lyme disease.
Lyme disease, everyone agrees, is the most common infection caused by an animal in the United States. The Centers for Disease Control and Prevention estimate that about 20,000 people each year are infected, primarily through the bite of a tick carrying the bacteria. Though the vast majority of cases occur in the Northeast, the number of cases in Oregon is growing. In 2008, according to the state’s Public Health Division, there were 38 cases, a 21-year high.
Caught early, Lyme disease is easily treated. A two-week course of antibiotics is all it takes to wipe out infection.
Once it gets past the early stages, nearly every aspect of Lyme disease is controversial — from its definition to its diagnosis to its treatment. Meanwhile, patients like Israel end up caught in the middle, living with symptoms for years, trying to get help.
“I think if it had been cancer, maybe, people would understand it more,” said Israel. “People believe in stuff that’s on TV, and if it’s not talked about they don’t know or understand what it is.”
As it is, she has had trouble finding support, not only from physicians, but from friends. She can find few of either, she said, willing to help her.
Israel and others like her did not start the controversy and do not debate the data on treatments or diagnostic tests. They don’t often care whether a test is sensitive or how narrowly the disease is defined. They are just trying to feel better.
A diagnosis without treatment
Israel never saw the tick that she thinks bit her. There are a couple of times that it might have occurred, she wrote in a letter soon after she started feeling sick. She recalled a small scab on the top of her head that she could not get off and, another time, when she had a blistered wound on her ear. At the time, she thought little of either case, and both healed quickly.
Then, one morning several years ago, she awoke with a neck so stiff she couldn’t move, she said. “I woke up and it was like, bam.” She thought she had spinal meningitis; her doctor dismissed that but put her on a week of antibiotics.
Her symptoms disappeared immediately, and Israel stopped taking the antibiotics. A few days later, symptoms began again. Her heart raced, she couldn’t sleep, she had a fever, her lymph glands were swollen, she had hallucinations and her joints hurt.
She began going from doctor to doctor in Bend, trying to figure out what was wrong with her. None of them diagnosed her with Lyme disease; many said they didn’t know what was wrong. At least one, she said, told her she was likely suffering from bipolar disorder, a psychiatric illness, and put her on medications to treat that disease.
As her physical symptoms persisted, her mother took charge. She drove Israel to Oregon Health & Science University in Portland where, Israel said, a doctor told her he thought she had Lyme disease. The Bulletin was not able to reach the doctor she identified.
Defining chronic Lyme
Part of the reason that doctors disagree about who has Lyme disease is that there is no objective way to diagnose the disease and a lack of agreement about its symptoms.
There are no tests that can definitively diagnose Lyme disease. There are blood tests that look for antibodies to the disease, but these tests are not entirely accurate, according to the CDC. Some people will have false positive results and others with Lyme will have negative results, particularly if tested soon after a tick bite.
Even if accurate, the tests look for antibodies made by the body to fight the disease; they cannot look for the bacteria causing Lyme. So, a positive test could show that a person has been exposed to the disease, but not that he or she is still infected.
“If you get exposed and get treated,” said Dr. John Chunn, a Bend pediatrician and specialist in infectious diseases, “you will be positive 10 years later.”
Because of the limited usefulness of the tests, doctors have turned to looking for symptoms. Within days of a tick bite, most people will notice a rash that looks like a bull’s-eye and spreads out from the site of the bite. If untreated, people develop other symptoms.
Some doctors say that there are a few telltale signs of Lyme disease and that all patients will have a few objective findings. Dr. Eugene Shapiro, an infectious disease specialist at Yale University who helped write the Infectious Diseases Society of America guidelines on treating Lyme disease, looks for the telltale rash, swollen joints particularly in the knees, and Bell’s palsy in patients that live in areas where Lyme disease is common.
He said that based on studies on the first people diagnosed with Lyme, from Lyme, Conn., all showed arthritic symptoms and few other complications. “The typical late manifestation is arthritis.”
His definition rules out many patients, even those who come to him saying they have the disease. “People complaining of chronic Lyme are very common,” said Shapiro. “Actual late (stage) Lyme disease is so rare that general practitioners are lucky to see one patient. ~ Every patient that’s been seen with chronic Lyme disease in my practice never had it.”
Many doctors, and even the CDC, employ a wider definition, including other less specific symptoms in the diagnosis. That means that more patients fit the definition, increasing the number of patients who are treated for chronic Lyme disease in those practices.
Because the tests are unreliable, symptoms are crucial, said Dr. Daniel Cameron, an internist in Mount Kisco, N.Y., and member of the International Lyme and Associated Diseases Society, “I got back to, is the person ill?”
Cameron said that a lot of symptoms of chronic Lyme disease are similar to symptoms of other diseases, making it hard to establish a definitive diagnosis. “Where I see the concern is that you should inform the patient that it could be Lyme and it could be fibromyalgia,” he said.
Cameron said defining the disease narrowly, as Shapiro does, could be misleading patients who may want to know they could have Lyme disease. Some “infectious disease doctors out there don’t mention Lyme.”
Crossing the guidelines
Based on a friend’s recommendation, Israel went to see Dr. Joseph Jemsek last December after years of struggling with her symptoms. Jemsek falls clearly in the camp of doctors who define Lyme disease broadly, and he has amassed a sizeable population of Lyme patients as a result.
Israel brought her medical records, which show a diagnosis of Lyme from a doctor in California, Dr. Steven Harris, and a positive blood test for Lyme. Harris’ office said it could not confirm the diagnosis because of federal privacy regulations.
Jemsek said he spent two hours with her in his South Carolina clinic when she first arrived, talking to her and noting her symptoms.
Israel, Jemsek said, was in serious condition when he saw her. “She was failing dramatically in a very serious way in her ability to conduct daily affairs.”
For Israel, Jemsek has been a godsend. He takes her seriously when she felt others did not, and, for the first time in years, she has hope that one day she will feel better.
But Jemsek has been the subject of intense scrutiny for his treatment of Lyme patients. His critics say that he treats patients with no evidence of Lyme disease and that the treatment he employs, long-term antibiotics, is at best ineffective and at worst dangerous.
He practiced in North Carolina until several years ago, when the North Carolina Medical Board brought a complaint against him, alleging that he misdiagnosed Lyme disease patients and prescribed treatment outside the “recognized standards of treating Lyme disease.”
In 2006, his license was suspended for a year. He has since moved his practice to South Carolina where he continues treating Lyme patients.
Though Jemsek and others have been punished by medical boards for going outside the guidelines, those guidelines themselves have come under fire.
Connecticut Attorney General Richard Blumenthal last year investigated the writing of the Lyme disease guidelines by the Infectious Diseases Society of America and found significant conflicts of interest among the members who served on the panel, including conflicts with insurance and pharmaceutical companies.
The society agreed to rewrite the guidelines with independent oversight, a process going on now. The society plans to hold a public hearing in July in Washington, D.C.
Antibiotic treatment
Those who write the guidelines believe that the type of treatment Jemsek gives patients could be harmful.
“There is significant evidence of costs and no evidence of benefit” of long-term antibiotic therapy, said Shapiro, one of the authors of the guidelines.
He discussed an oft-cited study of about 100 patients with Lyme disease published in the New England Journal of Medicine in 2001 that found that the patients who took antibiotics for three months showed no more improvement in symptoms than patients who took a placebo for three months. Shapiro and others in his camp said the study is evidence that long-term antibiotic therapy does not work.
Many infectious disease physicians, including those in Oregon, subscribe to that notion and dismiss those who would prescribe longer courses of antibiotics.
“The arguments to the contrary have not been widely accepted by most of the people in our discipline,” said Dr. Richard Bryant, a Lyme disease specialist at OHSU. “We’re not accusing anybody of being stupid, we just don’t have evidence of being persuaded to their arguments.”
Bend specialist Chunn said long-term antibiotic therapy is not needed because the bacteria are so easy to kill. “This bacteria dies so easily you can’t believe it. It just rolls over and dies.”
Not so, said Jemsek, on the other side of the fence. “Nothing could be further from the truth,” he said. Far from being hard to kill, the bacteria are highly adaptable and can hide in any number of organs in the body.
Jemsek, like Shapiro, cites his own set of studies, also from peer-reviewed medical journals.
As an example, he cites a 1999 study published in the Annals of Medicine, which found that after three months of antibiotic treatment, some of the 165 patients treated still had symptoms. The study concluded it’s possible that the bacteria were not eradicated during the treatment.
Jemsek also relies on laboratory work showing that the bacteria themselves have a number of defense mechanisms that could make them hard to kill with short courses of antibiotics.
Other physicians, too, say it’s unclear that the bacteria are as easy to get rid of as some say. “It’s easy to kill if you do it at the time of the rash,” said Cameron. “It’s more difficult after that.”
Cameron said that one main problem is that, because there are no good blood tests for the bacteria, it’s nearly impossible to tell if the bacteria have been eradicated. “You can’t see it ~ it becomes more difficult to prove there’s (bacteria) present.”
Without tests, physicians must rely on whether symptoms are still present. Not only does the measure become much more subjective, but it can be difficult to tell whether the symptoms are caused by Lyme disease, the side effects of treatment or something else altogether.
Healing
Israel has chosen to fall into Jemsek’s camp. She’s committed, she said, to months of antibiotic therapy, though it has vicious side effects that leave her sick for days at a time.
She knows that her treatment course is controversial and is aware that many doctors think that her therapies now will likely do her more harm than good. Still, she feels it’s her only hope for relief.
She lives in Portland now, temporarily. She is there because some people in her family, she said, don’t believe she has Lyme disease. She moved in with her sister, who has been supportive.
Her days are quiet. She makes breakfast in the morning. She spends a lot of time in her room, on the laptop that often sits on her bed, corresponding with others in the same situation. She watches movies. She sees her son, still living in Bend, once a month.
She recently began a regimen prescribed by Jemsek that includes hooking herself up to an IV line every day. Two days a week, she gets saline solution to help reduce the side effects of her treatment and to keep her blood pressure up, a complication of her disease, Jemsek said. Three days a week, the bags contain antibiotics.
The antibiotics sicken her; some mornings she needs help making breakfast. But she feels she is getting better. Lately, she’s developed a mantra that she uses to get through it. “When I’m really, really sick,” she said, “I’m shaking and puking and in my mind, I’ll just go, ‘I’m healing, I’m healing.’”
Betsy Q.
Cliff
can be reached at 541-383-0375 or bcliff@bendbulletin.com.
Be well,
Richard
A disease in debate
A Bend woman has chronic Lyme disease, but her diagnosis and treatment are controversial
By Betsy Q. Cliff / The Bulletin
Published: May 07. 2009 4:00AM PST
• Oregon Division of Public Health, Lyme disease information: www.oregon .gov/DHS/ph/acd/diseases/lyme/lyme.shtml
• Infectious Diseases Society of America: www.idsociety.org
• International Lyme and Associated Diseases Society: www.ilads.org
• Jamie Israel’s Web site: www.jamiesmiracle.com
Comment on this article:
The woman in the YouTube videos is pretty, but thin and pale.
In her first video post, from a year ago, Jamie Israel sits in a bathroom in her house near Summit High School in Bend, describing her symptoms. Pushing hair out of her face, she says she has severe insomnia, a racing heart, pain and fatigue. She’s having a hard time, she says, caring for her then-3-year-old son.
In one short post, she cries, worried she can’t take it anymore. “I’m so sick,” she says to the camera. “I can’t handle it.”
Israel believes she is suffering from chronic Lyme disease caused by a tick bite years ago. Her symptoms have dismantled her life piece by piece.
It started with aches in her jaw, then it became a stiff neck and fatigue. Insomnia set in. Her weight dropped. She became too dizzy to drive. Finally, it culminated in seizures, sending her to the emergency room.
She cannot find a doctor in Central Oregon who will treat chronic Lyme disease. Instead, the 32-year-old now flies to South Carolina every month for treatment.
Many physicians do not believe her disease exists. Instead, they say it’s likely something else, perhaps fibromyalgia, chronic fatigue syndrome or a psychological illness. She has been to at least eight doctors since her illness began.
There are hundreds or perhaps thousands of patients like Israel in the United States. They are often seriously ill, with debilitating symptoms. But they are caught in one of the most heated controversies in medicine.
Some doctors believe that chronic Lyme disease is a serious problem that needs to be treated aggressively with antibiotics. In the other camp, an equally adamant group of physicians believes that Lyme disease is over-diagnosed and over-treated; some doubt the existence of chronic Lyme disease.
Lyme disease, everyone agrees, is the most common infection caused by an animal in the United States. The Centers for Disease Control and Prevention estimate that about 20,000 people each year are infected, primarily through the bite of a tick carrying the bacteria. Though the vast majority of cases occur in the Northeast, the number of cases in Oregon is growing. In 2008, according to the state’s Public Health Division, there were 38 cases, a 21-year high.
Caught early, Lyme disease is easily treated. A two-week course of antibiotics is all it takes to wipe out infection.
Once it gets past the early stages, nearly every aspect of Lyme disease is controversial — from its definition to its diagnosis to its treatment. Meanwhile, patients like Israel end up caught in the middle, living with symptoms for years, trying to get help.
“I think if it had been cancer, maybe, people would understand it more,” said Israel. “People believe in stuff that’s on TV, and if it’s not talked about they don’t know or understand what it is.”
As it is, she has had trouble finding support, not only from physicians, but from friends. She can find few of either, she said, willing to help her.
Israel and others like her did not start the controversy and do not debate the data on treatments or diagnostic tests. They don’t often care whether a test is sensitive or how narrowly the disease is defined. They are just trying to feel better.
A diagnosis without treatment
Israel never saw the tick that she thinks bit her. There are a couple of times that it might have occurred, she wrote in a letter soon after she started feeling sick. She recalled a small scab on the top of her head that she could not get off and, another time, when she had a blistered wound on her ear. At the time, she thought little of either case, and both healed quickly.
Then, one morning several years ago, she awoke with a neck so stiff she couldn’t move, she said. “I woke up and it was like, bam.” She thought she had spinal meningitis; her doctor dismissed that but put her on a week of antibiotics.
Her symptoms disappeared immediately, and Israel stopped taking the antibiotics. A few days later, symptoms began again. Her heart raced, she couldn’t sleep, she had a fever, her lymph glands were swollen, she had hallucinations and her joints hurt.
She began going from doctor to doctor in Bend, trying to figure out what was wrong with her. None of them diagnosed her with Lyme disease; many said they didn’t know what was wrong. At least one, she said, told her she was likely suffering from bipolar disorder, a psychiatric illness, and put her on medications to treat that disease.
As her physical symptoms persisted, her mother took charge. She drove Israel to Oregon Health & Science University in Portland where, Israel said, a doctor told her he thought she had Lyme disease. The Bulletin was not able to reach the doctor she identified.
Defining chronic Lyme
Part of the reason that doctors disagree about who has Lyme disease is that there is no objective way to diagnose the disease and a lack of agreement about its symptoms.
There are no tests that can definitively diagnose Lyme disease. There are blood tests that look for antibodies to the disease, but these tests are not entirely accurate, according to the CDC. Some people will have false positive results and others with Lyme will have negative results, particularly if tested soon after a tick bite.
Even if accurate, the tests look for antibodies made by the body to fight the disease; they cannot look for the bacteria causing Lyme. So, a positive test could show that a person has been exposed to the disease, but not that he or she is still infected.
“If you get exposed and get treated,” said Dr. John Chunn, a Bend pediatrician and specialist in infectious diseases, “you will be positive 10 years later.”
Because of the limited usefulness of the tests, doctors have turned to looking for symptoms. Within days of a tick bite, most people will notice a rash that looks like a bull’s-eye and spreads out from the site of the bite. If untreated, people develop other symptoms.
Some doctors say that there are a few telltale signs of Lyme disease and that all patients will have a few objective findings. Dr. Eugene Shapiro, an infectious disease specialist at Yale University who helped write the Infectious Diseases Society of America guidelines on treating Lyme disease, looks for the telltale rash, swollen joints particularly in the knees, and Bell’s palsy in patients that live in areas where Lyme disease is common.
He said that based on studies on the first people diagnosed with Lyme, from Lyme, Conn., all showed arthritic symptoms and few other complications. “The typical late manifestation is arthritis.”
His definition rules out many patients, even those who come to him saying they have the disease. “People complaining of chronic Lyme are very common,” said Shapiro. “Actual late (stage) Lyme disease is so rare that general practitioners are lucky to see one patient. ~ Every patient that’s been seen with chronic Lyme disease in my practice never had it.”
Many doctors, and even the CDC, employ a wider definition, including other less specific symptoms in the diagnosis. That means that more patients fit the definition, increasing the number of patients who are treated for chronic Lyme disease in those practices.
Because the tests are unreliable, symptoms are crucial, said Dr. Daniel Cameron, an internist in Mount Kisco, N.Y., and member of the International Lyme and Associated Diseases Society, “I got back to, is the person ill?”
Cameron said that a lot of symptoms of chronic Lyme disease are similar to symptoms of other diseases, making it hard to establish a definitive diagnosis. “Where I see the concern is that you should inform the patient that it could be Lyme and it could be fibromyalgia,” he said.
Cameron said defining the disease narrowly, as Shapiro does, could be misleading patients who may want to know they could have Lyme disease. Some “infectious disease doctors out there don’t mention Lyme.”
Crossing the guidelines
Based on a friend’s recommendation, Israel went to see Dr. Joseph Jemsek last December after years of struggling with her symptoms. Jemsek falls clearly in the camp of doctors who define Lyme disease broadly, and he has amassed a sizeable population of Lyme patients as a result.
Israel brought her medical records, which show a diagnosis of Lyme from a doctor in California, Dr. Steven Harris, and a positive blood test for Lyme. Harris’ office said it could not confirm the diagnosis because of federal privacy regulations.
Jemsek said he spent two hours with her in his South Carolina clinic when she first arrived, talking to her and noting her symptoms.
Israel, Jemsek said, was in serious condition when he saw her. “She was failing dramatically in a very serious way in her ability to conduct daily affairs.”
For Israel, Jemsek has been a godsend. He takes her seriously when she felt others did not, and, for the first time in years, she has hope that one day she will feel better.
But Jemsek has been the subject of intense scrutiny for his treatment of Lyme patients. His critics say that he treats patients with no evidence of Lyme disease and that the treatment he employs, long-term antibiotics, is at best ineffective and at worst dangerous.
He practiced in North Carolina until several years ago, when the North Carolina Medical Board brought a complaint against him, alleging that he misdiagnosed Lyme disease patients and prescribed treatment outside the “recognized standards of treating Lyme disease.”
In 2006, his license was suspended for a year. He has since moved his practice to South Carolina where he continues treating Lyme patients.
Though Jemsek and others have been punished by medical boards for going outside the guidelines, those guidelines themselves have come under fire.
Connecticut Attorney General Richard Blumenthal last year investigated the writing of the Lyme disease guidelines by the Infectious Diseases Society of America and found significant conflicts of interest among the members who served on the panel, including conflicts with insurance and pharmaceutical companies.
The society agreed to rewrite the guidelines with independent oversight, a process going on now. The society plans to hold a public hearing in July in Washington, D.C.
Antibiotic treatment
Those who write the guidelines believe that the type of treatment Jemsek gives patients could be harmful.
“There is significant evidence of costs and no evidence of benefit” of long-term antibiotic therapy, said Shapiro, one of the authors of the guidelines.
He discussed an oft-cited study of about 100 patients with Lyme disease published in the New England Journal of Medicine in 2001 that found that the patients who took antibiotics for three months showed no more improvement in symptoms than patients who took a placebo for three months. Shapiro and others in his camp said the study is evidence that long-term antibiotic therapy does not work.
Many infectious disease physicians, including those in Oregon, subscribe to that notion and dismiss those who would prescribe longer courses of antibiotics.
“The arguments to the contrary have not been widely accepted by most of the people in our discipline,” said Dr. Richard Bryant, a Lyme disease specialist at OHSU. “We’re not accusing anybody of being stupid, we just don’t have evidence of being persuaded to their arguments.”
Bend specialist Chunn said long-term antibiotic therapy is not needed because the bacteria are so easy to kill. “This bacteria dies so easily you can’t believe it. It just rolls over and dies.”
Not so, said Jemsek, on the other side of the fence. “Nothing could be further from the truth,” he said. Far from being hard to kill, the bacteria are highly adaptable and can hide in any number of organs in the body.
Jemsek, like Shapiro, cites his own set of studies, also from peer-reviewed medical journals.
As an example, he cites a 1999 study published in the Annals of Medicine, which found that after three months of antibiotic treatment, some of the 165 patients treated still had symptoms. The study concluded it’s possible that the bacteria were not eradicated during the treatment.
Jemsek also relies on laboratory work showing that the bacteria themselves have a number of defense mechanisms that could make them hard to kill with short courses of antibiotics.
Other physicians, too, say it’s unclear that the bacteria are as easy to get rid of as some say. “It’s easy to kill if you do it at the time of the rash,” said Cameron. “It’s more difficult after that.”
Cameron said that one main problem is that, because there are no good blood tests for the bacteria, it’s nearly impossible to tell if the bacteria have been eradicated. “You can’t see it ~ it becomes more difficult to prove there’s (bacteria) present.”
Without tests, physicians must rely on whether symptoms are still present. Not only does the measure become much more subjective, but it can be difficult to tell whether the symptoms are caused by Lyme disease, the side effects of treatment or something else altogether.
Healing
Israel has chosen to fall into Jemsek’s camp. She’s committed, she said, to months of antibiotic therapy, though it has vicious side effects that leave her sick for days at a time.
She knows that her treatment course is controversial and is aware that many doctors think that her therapies now will likely do her more harm than good. Still, she feels it’s her only hope for relief.
She lives in Portland now, temporarily. She is there because some people in her family, she said, don’t believe she has Lyme disease. She moved in with her sister, who has been supportive.
Her days are quiet. She makes breakfast in the morning. She spends a lot of time in her room, on the laptop that often sits on her bed, corresponding with others in the same situation. She watches movies. She sees her son, still living in Bend, once a month.
She recently began a regimen prescribed by Jemsek that includes hooking herself up to an IV line every day. Two days a week, she gets saline solution to help reduce the side effects of her treatment and to keep her blood pressure up, a complication of her disease, Jemsek said. Three days a week, the bags contain antibiotics.
The antibiotics sicken her; some mornings she needs help making breakfast. But she feels she is getting better. Lately, she’s developed a mantra that she uses to get through it. “When I’m really, really sick,” she said, “I’m shaking and puking and in my mind, I’ll just go, ‘I’m healing, I’m healing.’”
Betsy Q.
Cliff
can be reached at 541-383-0375 or bcliff@bendbulletin.com.
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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!