artur737 Centralia teen dies from tick-borne disease 01.09.07, 16:34 tinyurl.com/2dq6xv Friday, Aug 31, 2007 Centralia teen dies from tick-borne disease CENTRALIA, Mo. (AP) - A 15-year-old girl has died from a rare but treatable tick-borne disease, officials said Thursday. The Boone County Medical Examiner's Office identified the victim as Emily Powell, a Centralia High School freshman. The cause of death was ehrlichiosis, a bacterial illness. She died Wednesday, two days after being admitted to University Hospital in Columbia. Symptoms of ehrlichiosis include fever, headache, fatigue and muscle aches, according to the federal Centers for Disease Control. Other signs and symptoms can include nausea, vomiting, diarrhea, cough, joint pains, confusion and rashes. Symptoms generally appear after an incubation period of five to 10 days following a tick bite. The disease, if detected early, can be treated with antibiotics. State officials reported 117 cases of ehrlichiosis through mid-August, nearly three times the annual average. Higher-than-usual rates of Rocky Mountain spotted fever, tularemia and Lyme disease are also being reported. Odpowiedz Link
artur737 Small insect carries debilitating disease 02.09.07, 22:47 Prezydent ILADS Dr Stricker przyznaje w tym artykule, ze jego rowniez konsultowano w sprawie boreliozy prezydenta Busha. tinyurl.com/2j5gfl Small insect carries debilitating disease They might be only tiny insects, but ticks have the power to turn your life into a gigantic nightmare By Dana M. Nichols September 02, 2007 Record Staff Writer GLENCOE - When Dr. Raphael Stricker, a San Francisco physician known for treating patients with Lyme disease, received a call from a Washington, D.C., doctor last summer, he became nervous. Stricker said the caller, whom he did not know personally and whom Stricker did not identify, asked him lots of questions about treating Lyme disease, a potentially debilitating bacterial infection transmitted by tick bites. "It was such an odd phone call," Stricker said. "I was actually a little paranoid." Stricker is president of the International Lyme and Associated Diseases Society, which believes Lyme patients sometimes need longer, more expensive treatments with antibiotics than are called for by the guidelines that most U.S. medical organizations follow. Some doctors have been disciplined by state medical boards for giving the longer treatments. Stricker said the call made sense a year later, when news broke that President Bush in summer 2006 had been treated for Lyme disease and that his physicians deemed him cured when Bush got his annual physical last month. Stricker said he finds it suspicious that the president's physicians released fairly detailed accounts of the growths in the president's colon but did not say exactly how he was treated for Lyme disease, sidestepping what has become a medical battlefield. On one side of the Lyme debate is the vast majority of the medical establishment, including major providers such as Kaiser Permanente and the Infectious Diseases Society of America, which sets the guidelines most doctors follow. They say Lyme disease infections can be treated with a few weeks of antibiotics. On the other side are the International Lyme and Associated Diseases Society and thousands of Lyme patients who say the infection persists in their bodies and they need antibiotic treatments that can last months, years or even a lifetime. That includes park naturalists Steve and Stephanie Diers of Glencoe, who say they've suffered the debilitating effects of Lyme disease for decades. Odpowiedz Link
artur737 Re: Small insect carries debilitating disease 02.09.07, 22:49 "The bottom line is money," Steve Diers said. He and his wife say they spend about $11,000 per year on antibiotic medications that Kaiser Permanente, their insurer through Steve's job, refuses to cover. From 20,000 to 24,000 cases of Lyme disease are reported nationwide every year, making it the most common insect-bite-transmitted disease in America, according to the federal Centers for Disease Control and Prevention. That includes 50 to 150 reported cases per year in California. But authorities say that because of the nature of the disease and inadequate testing, there could be 10 cases of the disease for every one that is reported. The Infectious Diseases Society of America says there are solid scientific reasons for recommending a course of antibiotics of no more than three or four weeks to treat Lyme disease. "The problem is there are significant adverse long-term effects from these antibiotics," said Dr. Eugene Shapiro of Yale Medical School, who helped write the Infectious Diseases Society of America guidelines for Lyme disease. Doctors say patients recover best if they are treated soon after they are bitten by an infected tick. Often that does not happen because some of those who contract Lyme disease don't know they've been bitten. The spiral-shaped Borrelia burgdorferi bacteria can travel around the body causing a wide array of symptoms from heart palpitations and joint pain to dizziness and mental impairment. The ailment is often misdiagnosed - sometimes for years. That's what happened to Noelle Sweeney, 19, of Lodi. Sweeney's mother, Patty Sweeney, said she never knew her daughter had a tick bite. But the symptoms began with migraine-intensity headaches when Noelle was in kindergarten. Then Noelle got stomach ulcers, and later her muscles started to weaken. "All the leading universities we've brought her to," Patty Sweeney said. Finally, last year, when Noelle was 18, a naturopath in Reno suggested testing her for Lyme disease. Now, she's been on intravenous and oral antibiotics for nine months - and she's still waiting to get better. "I am only 19, and I have hot flashes and mood swings and headaches. I am a mess to be around," Noelle Sweeney said. The Diers, both park naturalists who have had many tick bites over the years, tell a similar story. Stephanie Diers, 51, came from an active, outdoorsy family. She said she developed Lyme disease symptoms in the 1960s, long before the ailment even got its name. It wasn't until 1989 that a doctor diagnosed her with Lyme disease. Stephanie Diers says she believes the bacteria are deeply entrenched in her body and that they survived the long initial treatment she received. She said that when she goes off the drugs, she begins suffering symptoms again. Odpowiedz Link
artur737 Re: Small insect carries debilitating disease 02.09.07, 22:50 Now, she's disabled, unable to work because of the joint pain and concentration problems. Steve Diers, 54, says he probably contracted the disease in 1995 when he was crawling through leaf litter while flagging routes for hiking trails, one of his duties as a park ranger. Leaf litter is where the small larval form of ticks, called nymphs, hang out, waiting for a blood meal. Steve Diers, too, has tried to go off of the antibiotics, but he finds his condition deteriorates and he is unable to work without the drugs. Experts with the Infectious Diseases Society of America say careful studies of long-term antibiotic use for Lyme disease patients have compared the effects of the drugs with placebos and found no difference. White House staff have not made public whether President Bush received the short-term antibiotic treatment or a more expensive long-term treatment. A White House media representative on Aug. 15 said she would find a spokesman to answer questions about the president's treatment. But as of Wednesday, the White House had not responded. The White House media office also did not respond to a voice message left again last week. All staff will say is the president is cured. Contact reporter Dana M. Nichols at (209) 754-9534 or dnichols@recordnet.com. Visit his blog at recordnet.com/blogs. Odpowiedz Link
artur737 List publiczny CanLyme do wladz amerykanskich 03.09.07, 22:28 August 26th, 2007 The Honorable Jon S. Corzine Chairman Health and Human Services Committee National Governors Association 444 North Capitol Street, NW, Suite 267 Washington, DC 20001 Dear Governor Corzine, This is further to the Infectious Disease Society of America (IDSA) president, Dr. Henry Masur’s letter to you dated August 7th, 2007. We do not normally involve ourselves outside of Canada on the political front, but the issue of Lyme disease is borderless so please indulge us for our imposition. The IDSA guidelines have done more harm to people throughout North America than any other medical guidelines we are aware of. Because the infectious disease community in Canada are so closely tied with the IDSA, this Canadian group adopted the guidelines (Canada has done no research of it’s own) and these guidelines have now become entrenched in our closed socialized system. This is one massive flaw in our medical system, it allows outside lobby groups such as the IDSA who for the most part represent business interests, to easily dominate our medical care. We’ve become too comfortable in avoiding the cost of doing research here in Canada by simply adopting research of others, no matter how poorly executed the research is. We attach a copy of our letter to the IDSA medical journal in response to their published guidelines. Until proper post mortem, and multiple live tissue studies per victim, employing all testing technology available is done on victims of those several diseases linked to Borrelia burgdorferi, the bacteria that causes Lyme disease, very little can be said about present testing accuracy, prevalence, what symptoms can be attributed to chronic Lyme disease, and what treatment methods are effective. This makes the entire IDSA document premature and not worthy of a health care guideline. We are attaching copies of research abstracts showing just a fraction of the research that has been done relative to other diseases and Lyme. We are also attaching research showing transmission of this disease via a mother’s placenta to her unborn child. If the IDSA is that confident in their recommended testing protocol, how possibly could Lyme bacteria be showing up in the numbers it is in these other diseases (Alzheimer’s, Multiple Sclerosis, Colitis, Crohn’s disease and many many others). Where along the line is it being missed? Only now that victims’ associations are becoming strong enough to fund the necessary research that government has been reluctant to fund in both our countries for over two decades will the evidence flow forth to even begin to look at creating guidelines. 2) It is this reason that laws must be put in place, to tell insurers it is not okay to deny longer term treatment for Lyme disease, and to protect those doctors who are doing their very best to keep their patients’ quality of life manageable. Premature guidelines are being pushed upon doctors who know they will only cause harm to their patients. The IDSA has stated concerns about the dangers of antibiotics, and this is a good example of how poorly they support their position. Antibiotic harm pales in comparison to the heavy narcotics, anti-psychotics and other medications used to treat the many individual symptoms Lyme disease is responsible for. Some Lyme victims have to wean themselves off these dangerous drugs before they can start antibiotic therapy. Antibiotic resistance is a non-issue so long as we pump antibiotics into our food farm industry by the ton as we do now. The IDSA boasts about the 400 references they cite in their guidelines as though it somehow gives evidence as to their expertise. The majority of these references are the author’s themselves and their cohorts citing each other’s work after carefully pruning out any contradictory research from the in excess of 20,000 research papers on Lyme disease from around the world. Doctors who dare look at the entire global databank of research are quickly put in place by their medical professional licensing bodies. Professional witch-hunts occur using tactics that would not be allowed in a public court setting. What never ceases to amaze us is how few people actually run the medical professional organizations who then also author guidelines, set testing criteria, and then police their members to enforce members do only what they tell them they can do. We all need to take a hard look at how often the leaders of one organization are also in the leader group of another, and who then also sit on policing panels. Why are the tens of thousands of good medical minds who do not own patents or represent medical insurance or other for profit interests not making the decisions? Have a look at who sat on the Association of State and Territorial Public Health Laboratory Directors panel in 1994 that set the harmful two-tier testing protocol and then look at who authored or provided the research papers for the 2006 IDSA Lyme guidelines. Why do this group of researchers control every aspect of the disease? It doesn’t equate, other than for control. Odpowiedz Link
artur737 cd: List publiczny CanLyme do wladz amerykanskich 03.09.07, 22:28 Why is it that so few people control so much in this field (health care) where even a hint of bias or conflict should be alarming (because life and death or somewhere horribly in between are at stake)? Who are they and what is their interest? Why are they allowed to dominate every aspect of a disease for so many years? How did rules get put in place so this small group, relatively speaking, are able to operate almost with impunity and no public oversight? You will need to find out how many of these of people are also those who sit as reviewers to select which research gets the funding nod from federal and state taxpayer dollars through the many funding bodies. Only like-minded researchers get funded. We have the same problem in Canada. How has this domination affected the quality and direction of research? Could it be that the medical financial crisis in North America is in part fabricated because of missed research opportunities? Why is so little common sense basic ‘find the root cause’ research not funded anymore? Post mortem and live tissue study are the foundation of medicine. These are the same hard questions we are asking our government now. We refer to the present system as one of ‘farming sickness’. In some cases doctors are used as pawns in the farming process requiring legislation to offer them protection from a very powerful, well funded, and carefully positioned group of sickness farmers spread across several continents. 3) In order for there to truly be experts in a particular disease, they must have studied all aspects of the illness. With there being such an apparent avoidance of ‘no strings attached’ research into how many of the millions of people (1.5 million in Canada alone) who are left with diagnoses of diseases with no known cause, may actually have Lyme disease, there are no true experts. Until the IDSA can present verifiable research showing that Lyme bacteria plays no role in other disease processes that other research has indicated Lyme in fact does play a role in, how can they refer to themselves as experts? The IDSA, in regards to Lyme disease, are experts at creating algorithms backed by their own narrowly focused research creating data that no one else has validated except from within their own network of well-connected, well-funded cohorts. It should be no surprise that they want you ask them to provide ‘experts’. Please put legislation in place to help patients get the treatment those of us who suffer know very well works regardless of what a contrived document says. Protect the doctors, who treat their very sick patients, from witch-hunts. After the protections and treatments are in place for the sick, and the doctors who treat them, go ahead and hold hearings and commissions to look into the entire matter of Lyme as the IDSA suggests. That process will go on for years if history is any indicator and those who have created the mess will have retired before any change comes about, which is their likely goal. Victims’ lives are being destroyed now, so the legislation must be put in place now. If you do this, Canada will no doubt follow so therefore we have a very real and selfish interest in what unfolds. Instead of spending millions on hearings as the IDSA suggests …. funding multiple Lyme disease research facilities to do the necessary post-mortem and live tissue study of all those diseases linked to Lyme (and the coinfections) may be a better use of money, especially if Lyme disease victims associations and ‘no-strings attached’ researchers are given a role in research and oversight. Again, that is a selfish wish but one that would be good for all. We’ve been telephoned and emailed by many Americans asking if we have such a facility where they could donate their bodies or organs, or those of their loved ones. We do not yet but we are in the process and it will have the necessary oversight. Rather than enclosing sensational media reports as did the IDSA, we enclose research abstracts indicating Lyme disease is linked to other serious, life altering diagnoses that are collectively bankrupting our various governments’ health care coffers. Thank-you for your time and we apologize for our uninvited input but this is such a serious matter for so many people now and in the future, we thought we must point out that the IDSA guidelines’ harm is not limited to the United States. Yours truly, Jim M. Wilson AIIC President, Canadian Lyme Disease Foundation (on behalf of our board of directors www.canlyme.com/directors.html) cc. Matt Salo, HHS Committee Director, NGA Kathleen Nolan, Health Division Director, NGA Center for Best Practices Odpowiedz Link
artur737 List publiczny Dr Strickera z ILADS do rzadu USA 05.09.07, 06:24 Press Room By Raphael Stricker, MD President, ILADS August 28, 2007 The Honorable Jon S. Corzine Chairman Health and Human Services Committee National Governors Association 444 North Capitol Street, NW, Suite 267 Washington, DC 20001 Dear Governor Corzine, I am writing in response to the letter of August 7 from Dr. Henry Masur, President of the Infectious Diseases Society of America (IDSA). That letter urged you and other governors to turn your backs on patients with Lyme disease. I would like to offer a more positive approach from my organization, the International Lyme and Associated Diseases Society (ILADS). First, however, I would like to extend ILADS' support in the battle against Lyme disease to your state of New Jersey, which as you know has one of the highest rates of Lyme disease in the country. Lyme disease affects as many as 250,000 people per year in the United States, based on under-reporting statistics from the Centers for Disease Control and Prevention (CDC) and data from state health departments. I hope that the former governor of New Jersey is doing well in her fight against this insidious tick-borne illness. Dr. Masur states correctly that he represents a group of 8,000 doctors who specialize in infectious diseases. However, only a small fraction of that group knows anything about the diagnosis and treatment of tick-borne diseases, including Lyme disease. Unfortunately that small faction has hijacked the IDSA policy on Lyme disease and created treatment guidelines that are so restrictive that the Attorney General of Connecticut is currently investigating potential antitrust violations and restraint of trade arising from the exclusionary process that led to the IDSA guidelines formulation. In contrast, ILADS is an international organization of healthcare providers who specialize in the treatment of Lyme disease and associated tick-borne disorders. The members of our multidisciplinary society care for some 50,000-100,000 patients with tick-borne diseases, and we have published evidence-based guidelines for the diagnosis and treatment of Lyme disease (available at www.ilads.org). Our guidelines are flexible and inclusive. They allow practitioners to treat patients in a more pragmatic fashion, especially if those patients are suffering from chronic Lyme disease. A major problem is that Dr. Masur and IDSA refuse to acknowledge the existence of chronic Lyme disease, stating that there is "no convincing published data" to support the existence of this serious chronic illness. IDSA has repeated this mantra despite evidence from more than 19,000 peer-reviewed scientific articles that chronic Lyme disease does in fact exist. The problem is that IDSA does not accept this evidence and buries its head in the sand every time the evidence is brought up. In fact, IDSA refused to meet with ILADS to discuss our concerns before the IDSA guidelines were adopted. It is certainly hard to convince an organization that doesn’t want to listen to the opposite argument. Dr. Masur employs two lines of reasoning to discredit treatment with longer courses of antibiotics for patients with chronic Lyme disease: First he states that "carefully designed and conducted studies of Lyme disease treatments have failed to demonstrate benefit from prolonged antibiotic therapy". This statement ignores the fact that there have been only two published studies that fit this description, and the results were mixed. A third study from Columbia University sponsored by the National Institutes of Health is currently in press, and it shows benefit of longer treatment for patients with persistent neurologic symptoms due to chronic Lyme disease. Thus Dr. Masur's statement is both inaccurate and out of date. Dr. Masur also makes the point in bold letters that "long-term antibiotic therapy may be dangerous, leading to potentially fatal infections in the bloodstream as a result of intravenous treatment". What he fails to tell you is that long-term antibiotic treatment is used routinely in patients with serious infectious diseases, such as the case of Andrew Speaker, the attorney with resistant tuberculosis who led the CDC on a global chase before he was quarantined and treated for his disease. Nobody would argue that Mr. Speaker should not receive the full course of antibiotic treatment necessary to eradicate his infection (up to two years of therapy). However when it comes to Lyme disease, such treatment is branded as "dangerous", despite the fact that antibiotics are generally well tolerated by patients and regarded as safe by the Food and Drug Administration. And why does IDSA consider this treatment dangerous? Because they refuse to look at the facts. For example, a homecare company with extensive experience in treating patients with intravenous antibiotics for chronic Lyme disease submitted a study to IDSA for presentation at their annual meeting. The study showed that in patients who received intravenous antibiotic treatment for an average of four months, the mortality rate was zero, and the rate of side effects was less than 1%. The IDSA response to this report? They rejected the study for presentation and refused to look at the data. Once again, there is no convincing an organization that refuses to listen to the opposite argument. It is particularly sad to see that the sources cited at the end of Dr. Masur's letter in support of his views are not articles from the peer-reviewed medical literature but rather misleading reports from Forbes Magazine, the Washington Post and Newsday. ILADS urges the governors of all states to support federal and state legislation intended to protect doctors who specialize in treating Lyme disease against the misleading and uninformed views of IDSA. ILADS urges you to support adequate treatment for patients suffering from chronic Lyme disease, and we urge you to consider the research information that has been suppressed and ignored by IDSA. If we continue to ignore this information, the Lyme epidemic will continue to spread with no end in sight. Governor Corzine, August 28, 2007, marks the 44th aniversary of the famous "I have a dream" speech by Rev. Martin Luther King, Jr. The members of ILADS and the Lyme community have a dream, and it is not very different from Dr. King's. Our dream is to see patients with chronic Lyme disease treated with dignity and respect by the entire medical community, so that informed physicians can treat those patients in a caring and compassionate manner without fear of discrimination, derision and figurative shotgun blasts from medical boards and medical societies. This is our simple dream, and I urge the governors of our nation to help us make this dream come true. Sincerely, Raphael Stricker, MD President, ILADS cc: President George W. Bush Governor Arnold Schwartzenegger Governor Mitt Romney Senator John McCain Mayor Rudolph Giuliani Senator Hillary Rodham Clinton Senator Barack Obama Senator John Edwards Secretary Mike Leavitt Matt Salo, HHS Committee Director, NGA Kathleen Nolan, Health Division Director, NGA Odpowiedz Link
artur737 Lekarz ILADS leczy swojego ojca chorego na Bb 05.09.07, 19:17 www.upenn.edu/gazette/0907/pro04.html Issue Sep/oct 2007 Class of ’87 | After suffering for 30 years from what doctors repeatedly identified as a cardiac disease of unknown origin, Robert Phillips developed heart failure severe enough to bring him to the verge of a heart transplant. Fortunately, the procedure was not needed. Phillips was diagnosed and treated for advanced Lyme disease—one of the fastest spreading epidemics in the world, and one of the most debilitating. Since his treatment a decade ago, Phillips has enjoyed the benefits of normal cardiac function. If Lyme is detected and treated properly at the onset of infection, there are usually no long-term medical repercussions. Left untreated or under-treated, however, it becomes an insidious illness, often inducing a myriad of acute and chronic neurological, musculoskeletal, rheumatologic, cardiac, and neuropsychiatric symptoms. Lyme has been identified in medical journals as a probable cause of multiple sclerosis, rheumatoid arthritis, lupus, fibromyalgia, Alzheimer’s, and Lou Gehrig’s disease, to name a few. For saving his life (and making it worth living again), Phillips can thank Dr. Steven Phillips W’87—his son, who happens to be a leader in the fight against Lyme and other tick-borne diseases. After graduating from Wharton in 1987, the younger Phillips was preparing to enter the business world when a friend who had recently finished medical school dared him to pursue a career in medicine. That dare would end up saving—and improving—a lot of lives. Phillips has focused his efforts on combating Lyme ever since he began his residency at the Yale University School of Medicine in 1993. “I knew a lot of people with Lyme from home,” the New York state native says. “Lyme has its fingers in so many disease states of ‘unknown etiology.’ Even if [it] contributes to only a small percent, the implications are staggering.” A significant percentage of the medical community still resists accepting Lyme and related tick-borne diseases as such severe threats. “Medical dogma changes slowly, over decades,” says Phillips, who remains confident that his work will ultimately enlighten his colleagues. In 1996, he stepped away from his research on the microbiology and immunology of B. Burgdorferi (the Lyme bacteria) and established a private practice. Today, operating from his cozy clapboard base camp in Wilton, Connecticut, Phillips wears a casual button-down shirt and blue jeans. The perpetually ringing telephones and fax machines are manned by three women—one of them his mother, Gladys. Despite his laidback demeanor and arid sense of humor, Phillips has a reputation for caring intensely for each patient. By the time they arrive at his door, most of his patients have already sought the aid of other doctors in every medical field. Phillips is not committed to commonplace Lyme protocol, and he does whatever it takes to alleviate his patients’ suffering and improve the quality of their lives. As a result, he’s in high demand. “There’s a wait of a few months, two to six depending on the time of the year,” he says. His patients come from all 50 states and many Western European countries. Lyme patients are not the only people seeking his expertise. Network television and syndicated radio programs have sought his commentary. The governments of Connecticut, Rhode Island, and New York—all in the epicenter of tick-borne diseases—have invited him to provide testimony. His presentations have prompted legislation to fight Lyme and increase education efforts. In his critique of “Lyme Disease Testing” (Lancet Infectious Disease, March 2006), Phillips makes clear that Lyme disease is taking on epidemic proportions because of the nonexistent efforts to improve an atrocious testing and reporting system—and he implicates government agencies, like the Centers for Disease Control and Prevention. Having served as president of the International Lyme and Associated Diseases Society (ILADS), Phillips is now a member of the professional advisory board for the Turn The Corner Foundation—a group more focused on funding research and treatments. With the lay population still mostly ignorant about Lyme, Phillips wishes he could go on a speaking tour, in order to “educate so patients may have more access to medical care,” on a broader scale. In the meantime, he enjoys being a jock in his spare time. As a former instructor, the doctor has a particular soft spot for tennis, but there are other games he enjoys, too: “Any sports that don’t involve tick exposure.” —Eric Karlan C’09 Odpowiedz Link
franiolek1 Re: "Sezon na Kleszcza" cz druga 07.09.07, 14:43 health.discovery.com/convergence/mystery-diagnosis/doug.html health.discovery.com/convergence/mystery-diagnosis/fein.html Odpowiedz Link
artur737 Failures tracking Lyme disease makes a difference 13.09.07, 10:45 Failures tracking Lyme disease makes a difference tinyurl.com/ynjqoy By Yvonne Bokhour and Peter S. Arno 09/12/2007 email this storyEmail to a friendprinter friendlyPrinter-friendly MANY wonder why the White House delayed revealing President Bush's bout with Lyme disease. There's a bigger issue: Was his case submitted to the Centers for Disease Control and Prevention for tracking or did it vanish, like tens of thousands of others? Although Lyme disease is the most common vector-borne disease in the United States, it's hard to be sure how many people have been infected. The CDC recently announced Lyme cases have doubled since 1991, with 20,000 new cases reported each year. But experts acknowledge Lyme surveillance is limited. The CDC relies on states to report, and each state has its own methods. Advertisement Without a comprehensive, consistent system, we cannot know Lyme's true reach. Lyme is likely to be under-reported. Research suggests official reports represent only 10 percent to 20 percent of diagnosed cases. Recently, reporting methods have come under particular scrutiny in Connecticut, a state with the second highest rate of Lyme disease in the nation. Unfortunately, Lyme is controversial: nearly every aspect, from diagnosis to treatment, sparks heated debate. Now, apparently, counting cases is also a hot-button issue. If we know Lyme is here, causing problems, why bother tracking every case? What difference does it make? Economically, at least, quite a lot - about $300 million in Connecticut alone. Scientific and humanitarian concerns should drive any discussion of reporting. But sometimes, money talks. Many families are stressed by the financial burden imposed by Lyme disease. What do case reports reveal about patient struggles, in dollars and cents? Connecticut's reporting system changed drastically in 2003 and with it, our ability to assess Lyme's economic impact. Until then, both doctors and labs were required to notify the state Department of Public Health when patients tested positive for Lyme. That year, 4,631 cases were reported. But in 2003, cases fell to 1,403. Why? The state stopped requiring labs to report them. Trends would still be discernible, officials said, and the state would soon install a computerized system to capture laboratory numbers. Five years later, this system has yet to be fully implemented. The state asserts technological challenges have prevented its completion - a delay many find unacceptable. State Attorney General Richard Blumenthal noted: "We have been demanding that the Department of Public Health do more accurate reporting. Awareness of Lyme disease helps people prevent it. If people think that Lyme disease is going away because of under-reporting, it could give them a false sense of security." In addition, accurate case numbers might improve diagnosis, since doctors would know how probable Lyme is in their communities. In 2006, the CDC published a study of the economic impact of Lyme disease. It concluded the average case generates $8,172 in costs using year 2000 dollars. Adjusting for inflation, current costs would run $10,256. If we apply this amount to Connecticut's case numbers, it's clear accurate reporting provides vital data regarding the epidemic's toll. Connecticut reported 1,788 cases in 2006, mainly from doctors. Using the estimate of $10,256, these cases would have generated costs of over $18 million. But what if labs were still reporting? By assuming that labs report in the same proportion as 2002, we're looking at 5,902 cases, generating costs of more than $60 million. Finally, consider this eye-opener: Assuming conservatively that case reports represent 20 percent of diagnosed cases, Connecticut's 2006 case numbers jump to 29,509, generating costs of more than $300 million. In a nutshell, here's the difference reporting methods can make: the difference between 1,788 cases and 29,509 cases. The difference between $18 million and $300 million. All in one year. All in one state. Poor reporting methods effectively hide Lyme's health, economic and political impact. Whether visible or not, however, these costs are real to patients and their families. If even half the 29,509 cases were misdiagnosed or overestimated, these calculations offer a truer picture of Lyme's magnitude than official numbers. Moreover, incomplete Connecticut reporting distorts national trends, skewing our understanding of this growing public health threat. Until researchers resolve numerous dilemmas, patients will fight symptoms affecting not only their personal welfare, but the financial security of their families and the economic fabric of their communities. The entire country needs a comprehensive, accurate and consistent method of reporting to reduce Lyme's serious personal, public health and economic burden. It would seem counting cases makes a very big difference indeed. Yvonne Bokhour of New Canaan is a master's degree candidate in the Health Advocacy Program at Sarah Lawrence College. E-mail: Yvonne@Bokhour.com. Peter S. Arno is a professor in the Department of Health Policy and Management, School of Public Health, New York Medical College, Valhalla, N.Y. 10595. E-mail: Peter_Arno@nymc.edu. Odpowiedz Link
artur737 People with Lyme: Those most in need victimized 18.09.07, 02:07 People with Lyme: Those most in need victimized by U.S. system - CA People with LymeThose most in need victimized by U.S. system Edmonton Sun, Onterio, CA By DONNA MARIE ARTUSO WASHINGTON Odpowiedz Link
artur737 Rash judgment? 18.09.07, 03:05 Columbia Magazine Summer 2007 tinyurl.com/yrzf5c Rash judgment? Brian Fallon '85PH, '85PS says the medical establishment underestimates the devastating effects of Lyme disease. by David J. Craig and Amy Sara Clark When Lia McCabe was 25 and working as a financial-planning assistant in Manhattan, she started having excruciating headaches and joint pain so intense that she couldn’t walk or even hold a pen. She was making stupid mistakes, like slamming drawers on her hand and opening cabinets on her head. And then there were the memory problems: She knew she had to stop working the day she showed up and couldn’t find her desk. By the time she was tested for Lyme disease two years later, McCabe was bedridden and severely mentally impaired. “I couldn’t add two plus two,” she says. “At my worst, I didn’t recognize my parents.” McCabe tested positive for Lyme disease, a tick-borne bacterial illness that’s difficult to diagnose, in 1994. She’s since learned to walk again and to manage her pain by taking lots of powerful intravenous antibiotics. Her cognitive ability has improved, too, although she still can’t hold a job. While running errands in her own neighborhood, in fact, she carries a map in case she gets lost. “I begin every morning with a game of solitaire to see how I’m doing,” she says. “I don’t want to pay bills or make a big decision on one of my bad days.” Like McCabe, thousands of Americans today suffer serious physical and neurological problems despite having been treated for Lyme disease. Scientists can’t agree on what makes them sick. Is the Lyme bug still in their systems? Did the initial illness simply wreck their bodies? Or do they actually have some other condition with similar symptoms? Debate about whether to give them more antibiotics is contentious among scientists and confusing to patients; the Infectious Diseases Society of America (IDSA) weighed in on the matter last October, publishing strict new diagnostic guidelines that essentially deny that chronic forms of Lyme disease exist. But a group of Columbia professors led by Brian Fallon, a clinical psychiatrist whose own research cuts across the boundaries of medicine and neurology, won’t concede that point. In April, Columbia University Medical Center (CUMC) launched the first research center in the world to focus on chronic health problems associated with Lyme disease. Supported in part by $3 million in gifts from the patient-advocacy groups Time for Lyme and the Lyme Disease Association, Columbia’s new Lyme and Tick-Borne Diseases Research Center is investigating the basic science of chronic Lyme disease in hopes of developing new diagnostic tools and more effective treatments. “I’ve seen too many healthy people get Lyme disease and then never be the same again,” says Fallon ’85PH, ’85PS, who directs the new center. “I know that chronic Lyme disease is real. But what exactly is it, and how do you treat it? Nobody knows because few researchers have asked these questions.” Doctors Divided Lyme is one of the fastest-spreading infectious diseases in the United States, according to the Centers for Disease Control and Prevention, with roughly 23,300 new cases reported in 2005, up 22 percent from 2001. The illness is carried by deer ticks in the Northeast, where 90 percent of all U.S. cases are reported, and by Western black-legged ticks on the West Coast. Lyme has become more prevalent since its discovery in 1975, scientists say, partly because suburban neighborhoods have expanded into wooded areas where the ticks thrive. “In parts of East Suffolk, Long Island, and Fairfield County, Connecticut, it’s a tick haven,” says Rafal Tokarz, a Columbia microbiologist and postdoctoral researcher who studies ticks. “People walk out in the backyard with their dogs, and they come back in with literally four or five ticks on them.” A person with an infected tick burrowed in her skin for longer than 24 hours is at high risk for contracting Lyme. If she gets the disease, a large red rash typically appears, accompanied by flulike symptoms within a couple of weeks. The telltale bull’s eye–shaped rash doesn’t show up in about 40 percent of all Lyme cases, however, and early symptoms such as fatigue, fever, headaches, and achy joints can mean just about anything. To further befuddle doctors, there’s this: Blood tests cannot rule out Lyme because the bacterium that causes it, Borrelia burgdorferi, enters the body in such small amounts. Odpowiedz Link
artur737 Re: Rash judgment? 18.09.07, 03:06 Physicians may mistake the disease for everything from chronic fatigue to the ordinary flu, according to Fallon. And that’s when the real trouble starts, because if treatment is delayed by even a few days, B. burgdorferi can spread throughout the body, causing inflammation in the joints, the spinal column, and major organs. The corkscrew-shaped bug is especially adept at invading the nervous system, Fallon says, leading to mood disorders and memory problems in 10 to 30 percent of patients who aren’t treated promptly, and in 5 percent who are. In more rare cases, he says, Lyme causes manic depression, seizures, numbness in the hands and feet, speech problems, and even dementia. How effective is treatment? That’s another question that divides the medical community. Most Lyme experts insist that a single four-week course of antibiotics cures the disease, even when it was detected late. Citing two major studies in 2004 that didn’t find any B. burgdorferi in people once treated for Lyme, these experts say that if health problems persist it’s likely that the patient contracted a new, unrelated illness. The majority of Lyme researchers therefore oppose administering more antibiotics, which carry a risk of allergic reaction or life-threatening staph infection when delivered by catheter. The IDSA’s new guidelines for diagnosing Lyme disease reflect this perspective, calling for antibiotic treatment only when a rash appears or when blood tests reveal an active infection. The American Academy of Neurology (AAN) published similar standards this spring. “We don’t deny that people who say they have chronic Lyme disease are suffering,” says IDSA spokesman Steven Baragona. “But it’s not clear that what they’re suffering from is Lyme disease.” Fallon, on the other hand, is among a smaller number of scientists who believe that B. burgdorferi, like the syphilis bacterium it closely resembles, lies dormant within human cells, where medications have trouble attacking it. “That’s been demonstrated in vitro,” he says, “but not yet in the human body.” Fallon is about to publish a study suggesting that repeated courses of antibiotics relieve certain symptoms of chronic Lyme; the research provides a counterpoint to previous studies that found no such benefit. It’s also possible, Fallon says, that the initial B. burgdorferi infection triggers an autoimmune response, prompting the body to continually attack itself, and that the bug causes permanent tissue damage. “There’s probably a complex combination of factors at work,” says Fallon, 51, who is an associate professor. “We want to learn how these mechanisms operate in different patients, so we can tell who’ll benefit from more antibiotics and who should be treated instead for individual symptoms like pain or depression. Right now, doctors and patients are frustrated because everything about Lyme disease seems so ambiguous.” Advocating Caution In 1994, when Fallon launched Columbia’s first Lyme research unit, little was known about the psychiatric effects of the disease. Fallon was among the first to describe them. In one study, he found that Lyme patients are two to three times more likely to develop depression than people with similarly debilitating conditions, such as lupus and rheumatoid arthritis. Then, in 2001, Columbia psychologist Felice Tager showed that children with a history of Lyme are prone to cognitive problems. These Columbia studies had a profound impact. Physicians previously knew that Lyme causes arthritis and a handful of neurological conditions like meningitis and cranial nerve palsies, but thanks to Fallon and his colleagues they gradually came to recognize that the disease can bring about a wide range of psychiatric problems. As a result, many infectious disease experts actually worry that doctors are now overdiagnosing Lyme and needlessly prescribing antibiotics. “There’s been so much publicity around Lyme disease, I think that clinicians today are more likely to accept the possibility that Lyme patients have a persistent infection than is warranted by the research,” says Eugene Shapiro, a Yale professor of pediatrics who coauthored the IDSA guidelines. Fallon, who agrees that diagnostics must be made more precise, advocates a cautious approach to clinical work. Doctors should consider a diagnosis of chronic Lyme most seriously, he says, when clusters of symptoms appear and only after patients have tried standard treatments for their individual symptoms. Yet he insists that doctors still aren’t sensitive enough to Lyme’s broad symptomatology. Surveys have shown, for instance, that many physicians mistakenly believe that patients cannot have middle- or late-stage Lyme if they don’t have arthritis. In fact, arthritic symptoms are typically supplanted by cognitive problems one to two years after a patient contracts Lyme disease, Fallon says. To make diagnosis more scientific, researchers at Columbia’s new Lyme center are trying to identify biomarkers, bodily characteristics that signal the disease’s presence. In a forthcoming paper coauthored with Fallon, Columbia brain imaging experts led by radiologist Ronald Van Heertum, neuropsychologist Harold Sackeim ’72CC, and mathematician James Moeller identify a specific region of the brain in which blood flow appears to be altered by B. burgdorferi. “This research eventually might tell us whether the Lyme bacteria have invaded the central nervous system,” Fallon says, “and therefore whether to risk giving patients the powerful IV antibiotics that are designed to reach nerve cells.” Fallon and his colleagues recently completed another study that suggests repeated courses of the IV antibiotic Ceftriaxone provide long-term benefits in physical functioning but only short-term cognitive improvement to chronic Lyme patients. The researchers also are investigating the genetic basis of Lyme disease. If they can explain why some people are less effective at fighting the Lyme infection or why their immune systems produce an overly intense inflammatory response, Fallon says, it could open up new treatment possibilities. Faulty Guidelines? The neurologist Andrew Pachner once called Lyme disease the “new great imitator,” updating an old epithet for syphilis, which mimics other illnesses when left untreated and was difficult to diagnose prior to the 1930s. Like syphilis back then, Lyme disease today is often derided as a “wastebasket diagnosis,” a too-easy explanation for otherwise mysterious ailments. Amongst physicians, the Lyme debate can get personal: Doctors who specialize in treating chronic Lyme have even been accused of exploiting desperate patients. In order to discourage careless Lyme diagnoses, the Maryland state legislature considered a bill this spring that would have written into law the IDSA’s and AAN’s new diagnosis and treatment guidelines, which are nonlegally binding ethics standards. The proposed legislation died in the state Senate. Around the same time, several state medical boards disciplined doctors who give chronic Lyme patients repeated courses of IV antibiotics. Time for Lyme and the Lyme Disease Association, the influential patient-advocacy groups that funded Columbia’s new center, are lobbying hard against the new IDSA and AAN guidelines, which, they say, leave chronic Lyme patients without any realistic treatment options. Their case is being heard in some quarters: Connecticut Attorney General Richard Blumenthal now is investigating whether scientists who wrote the new guidelines ignored evidence they didn’t like. Among Blumenthal’s Odpowiedz Link
artur737 Re: Rash judgment? 18.09.07, 03:08 Among Blumenthal’s stated concerns is that insurance companies will use the guidelines to deny coverage of doctor-prescribed treatments. Physicians at Columbia’s Lyme center don’t have to worry about being censured because they administer antibiotics only as part of approved research studies. But Fallon still refers chronic Lyme patients to doctors who prescribe IV antibiotics. “I’m not fixated on using repeated courses of antibiotics,” he says, “but I do believe the option should be left open for doctors to consider.” As to the underlying scientific debate, Fallon takes a philosophical view: Both the physicians who treat chronic Lyme with additional antibiotics and the doctors who oppose that approach, he says, are practicing medicine “in a reasonable fashion” based on a clear set of diagnostic principles. It’s just that they can’t agree on what the principles ought to be. Do the health consequences of chronic Lyme disease outweigh the risks of antibiotic therapy? Or should doctors adhere to narrow clinical criteria of Lyme, and therefore risk leaving some patients untreated? “Part of what makes Lyme disease devastating is that there’s so much confusion in the medical community,” Fallon says. “Now we have two prominent medical organizations saying that the question about antibiotics is closed, but I don’t think it’s closed. We still don’t know what causes chronic Lyme, and evidence suggests that more antibiotics might help some people. At Columbia, we’re trying to keep these questions open.” Odpowiedz Link
artur737 Bezczelny list z IDSA do rzadu USA 18.09.07, 03:13 To jest ten bezczelny list z IDSA do rzadu USA. Wsadzam go tu nie dlatego, ze taki dobry tylko aby byl zapis ich chamstwa. IDSA Infectious Disease Society of America August 7, 2007 The Honorable Jon S. Corzine Chairman Health and Human Services Committee National Governors Association 444 North Capitol Street, NW, Suite 267 Washington, DC 20001 (Letter also sent to the National Conference of State Legislatures) Dear Governor Corzine: I write on behalf of the Infectious Diseases Society of America (IDSA) to bring to the National Governors Association's (NGA) attention problematic Lyme disease legislation that has been introduced in several states. In making the NGA aware of these legislative efforts, many of which are well-intentioned but therapeutically dangerous, our primary concern is to ensure the best quality in patient care and to protect the public's health and safety. To this end, we believe it is critically important that you be fully apprised of the widespread consensus within the medical and scientific community about the appropriate treatment of Lyme disease, as well as the medical community's concerns about unproven, potentially harmful treatments for so called "chronic" Lyme disease that are advocated by a small group of physicians. IDSA represents more than 8,000 physicians and scientists and is widely recognized as the pre-eminent authority on infectious diseases (ID) in the United States. The Society's members focus on the epidemiology, diagnosis, investigation, prevention, and treatment of infectious diseases in the U.S. and abroad. Our members care for patients of all ages with serious infections, including Lyme disease. In 2006, IDSA published revised practice guidelines for the clinical assessment, treatment, and prevention of Lyme disease. The development of guidelines requires the review of scientific and medical literature. IDSA's guidelines were developed by a 14-member panel of infectious diseases clinicians and researchers, including physicians with many years of clinical experience treating patients with Lyme disease. Nearly 400 references of papers and studies are cited in the IDSA guidelines and many, many more were reviewed that did not meet rigorous scientific standards. As you may know, Lyme disease is a tick-transmitted infection that can cause non-specific symptoms such as muscle and joint pain, fevers, chills, and fatigue. Some patients may continue to experience these symptoms even after a course of antibiotic therapy has killed the Lyme disease bacterium. A small group of physicians have diagnosed such patients as having "chronic" Lyme disease and advocate treating them with repeated or prolonged courses of oral or intravenous ... Odpowiedz Link
artur737 Re: Bezczelny list z IDSA do rzadu USA 18.09.07, 03:14 antibiotics. Such diagnoses and treatments are not supported by the IDSA’s practice guidelines, nor are they supported by new Lyme disease guidelines published by the American Academy of Neurology, nor by the vast majority of experts in the field. Of greatest concern are some states’ misguided attempts to legislate the prolonged use of antibiotic therapy for Lyme disease. There are no convincing published scientific data that support the existence of chronic Lyme disease. Carefully designed and conducted studies of Lyme disease treatments have failed to demonstrate benefit from prolonged antibiotic therapy. Rather, these studies have demonstrated that there is no difference in the measured improvement between patients receiving placebo and patients treated with long term antibiotics. Furthermore, long-term antibiotic therapy may be dangerous, leading to potentially fatal infections in the bloodstream as a result of intravenous treatment. Also, although the bacteria that causes Lyme disease does not acquire resistance to antibiotics, long-term antibiotic exposure can lead to drug-resistance among other microorganisms, creating "superbugs" that cannot be treated with currently available drugs. In summary, far from improving the patient’s quality of life, prolonged antibiotic therapy may actually increase the patient’s suffering. While IDSA opposes enactment of legislation that sanctions the use of prolonged antibiotic therapy, we support efforts to hold public hearings on Lyme disease as well as the establishment of legislative commissions to study all aspects of Lyme disease. Such hearings or commissions could play an important role in educating both state legislatures and the general public about the controversy surrounding treatment for Lyme disease. In order to ensure that these educational efforts are science-based, IDSA strongly urges the inclusion of board-certified ID physicians who represent a balanced perspective on Lyme disease. For more information on Lyme disease and the recommendations by the vast majority of experts in the field, please visit websites for IDSA (www.idsociety.org), the Centers for Disease Control and Prevention (www.cdc.gov), the National Institute of Allergy and Infectious Diseases (www.niaid.gov), the American Academy of Neurology (www.aan.com), or the American College of Physicians (www.acponline.org). I hope you will contact Mark Leasure at IDSA if you have questions or would like the names of board-certified ID physicians who may be willing to provide further guidance on appropriate treatments for Lyme disease. Mr. Leasure may be reached at (703) 299-0200 or via e-mail at mleasure@idsociety.org. Best Regards, Henry Masur, MD, FIDSA IDSA President cc: : Matt Salo, HHS Committee Director, NGA Kathleen Nolan, Health Division Director, NGA Center for Best Practices Page Three – Chairman Corzine Enclosures: : IDSA’s Practice Guidelines for the Treatment of Lyme Disease IDSA’s Odpowiedz Link
nataszkam Re: Bezczelny list z IDSA do rzadu USA 18.09.07, 10:17 To zupełnie dla mnie niezrozumiałe- w czerwcu ukazał się artykuł ILADS w piśmie IDSA, a 2 miesiące później mamy kolejne ataki na ILADS. czyżby szykowano jakieś ciężkie działo na re? Odpowiedz Link
artur737 Re: Bezczelny list z IDSA do rzadu USA 18.09.07, 15:21 Artykul ILADS opublikowali bo im kazano. Natomiast ten list napisali 'z potrzeby serca'. Odpowiedz Link
artur737 Climate change ticks ever closer 18.09.07, 03:22 Climate change ticks ever closer TheStar.com - Environment - Climate change ticks ever closer tinyurl.com/ytpwfo On the Leslie St. spit, signs of global warming are being picked right from the feathers of migratory birds. And the ticks now spreading north carry with them the spectre of Lyme disease September 01, 2007 Hannah Hoag Special to the Star At the foot of Leslie St., a spit of land fans out into Lake Ontario. Over the years, the man-made peninsula, built with rubble from Toronto construction sites, has grown into an urban wilderness, home to butterflies, birds, rabbits and the occasional coyote. The cottonwoods, birches, grasslands and bugs make the park popular with migratory birds that stop in to refuel on their flights – many coming from as far away as South America. But lurking among the feathers of these international travellers are blood-sucking stowaway ticks that can carry Lyme disease. Every morning before dawn during the spring and fall bird migration, Dan Derbyshire, co-ordinator of the Bird Research Station in Tommy Thompson Park, organizes a small group of volunteers who track the birds winging through the region. The station is part of the Canadian Migration Monitoring Network, a string of sites across southern Canada and the northern United States that monitor the population trends of northern breeding birds. From March to June, in 2005 and 2006, Derbyshire and his team of volunteer birders plucked ticks from the heads of the migrating birds. Then they mailed the ticks to scientists who are trying to gain a better understanding of how birds and climate change might increase the spread of Lyme disease through Canada. "The number of cases of Lyme disease have been fairly low in Canada, until recently," says Nicholas Ogden, an expert in tick-borne diseases at the Université de Montréal in Quebec and a researcher at the Public Health Agency of Canada. Since the 1970s, parts of the United States have suffered an epidemic of Lyme disease, mostly within the northeastern, mid-Atlantic, and north-central states. In the United States, approximately 20,000 new cases are reported each year. The disease – which causes fever, headaches and can spread to the heart and nervous system if untreated – is rarely reported in Canada, but ranks among the top bug-borne diseases in the United States. Ten years ago, eastern Canada had only two known populations of Ixodes scapularis, commonly known as the eastern blacklegged tick. Today, there are 13 or 14, says Ogden. "It's not that those two have spread out, but that there are new ones bobbling up," he says. They tend to settle in migratory bird landfalls, resource-rich chunks of land near large bodies of water. Point Pelee National Park is one of the better-known migratory bird landfalls in southern Ontario. Each year millions of migratory birds funnel through this small spit of land that juts into Lake Erie. But the Leslie St. Spit, the Toronto Islands and the Toronto lakeshore are also popular resting spots for migrants. Like Point Pelee, the region lies within the crossroads of two major migration flyways. It provides weary-winged travellers a chance to rest during their migration over the Great Lakes and stock up on energy for the next leg of their travels. "Toronto has always been on the migration highways," says Derbyshire. "There are lots of green spaces where the birds can drop in and rest, and the creation of the spit has really added to that." Ogden says the migratory birds may be bringing ticks into Canada after passing through the northeastern and north-central states, where they're abundant. The birds may also be carrying ticks from established Canadian populations farther north. Other researchers have previously found blacklegged ticks on migratory birds. "We just wanted to know if it was rare or a common thing," says Ogden. Although Ogden won't reveal details of the study until they have been published in a scientific journal, he says all the stations from western Ontario to Nova Scotia captured migratory birds with ticks on them. "We think migratory birds are quite efficient at spreading the tick around," he says. But once the ticks are here, will they survive? Canada's cooler climate once offered protection from the diseases of warmer regions. But as climate change brings milder winters, scientists worry that the ticks – formerly limited by the cold – may move farther north. "Insects are cold-blooded – air temperature determines body temperature," says Jonathan Patz, Director of the Center for Sustainability and the Global Environment at the University of Wisconsin in Madison. The warmer air temperature can make it easier for the insect to survive the Canadian winter. It can also speed up the rate at which it develops. According to the Ministry of Natural Resources, should greenhouse gas emissions remain high, average summer temperatures in southern Ontario are expected to be 4 to 5 degrees Celsius warmer and average winter temperatures about 6 degrees Celsius warmer before the end of the century. "All the biological processes that are going on require a certain amount of heat," says Ogden. "If it is very cold, those processes are very slow or will stop altogether." "When people say why should we worry about a half-degree of warming, it means everything to a mosquito carrying dengue or West Nile virus. It means do you have infectious mosquitoes after 10 days or three weeks?" says Patz. Odpowiedz Link
artur737 Residents raise the stakes in Lyme war 18.09.07, 05:26 Angry residents raise the stakes in Lyme disease war September 16, 2007 BY CAROL ANN CAMPBELL Star-Ledger Staff tinyurl.com/yw6e27 In Warren Township, fearless deer stride across front lawns to nibble on grass and shrubs. They waltz up to front porches of million-dollar homes to sample the potted plants. Sometimes only repeated blasts of the car horn will clear the driveway. Along with these four-legged symbols of bucolic suburban life comes a dreaded illness: Lyme disease. In some cases, entire families are being diagnosed with tick-borne ailments, and residents are demanding that their towns and counties do something. In many towns, Lyme disease is becoming not just a medical issue but a potent political one. About 20 neighbors in a section of Warren near Route 78 joined together to pressure local officials at a recent town council meeting. They called for the town to reduce the deer population Odpowiedz Link
artur737 Re: Residents raise the stakes in Lyme war 18.09.07, 05:27 The anger and activism Odpowiedz Link
artur737 Re: Residents raise the stakes in Lyme war 18.09.07, 05:28 Some residents want towns to consider using devices, such as bait boxes and special feeders, that kill ticks on deer and mice. Others say habitat modification Odpowiedz Link
artur737 Dr Jemsek bankrutuje i opuszcza NC 18.09.07, 17:13 Kolejna ofiara IDSA. Mamy nadzieje, ze dobry doktor sie nie podda i otworzy nowa klinike gdzies indziej. Bezposrednio przyczyna bankructwa byla rewidnykacja leczenia za ubiegle lata przez ubezpieczalnie na podstawie werdyktu lokalnej izby lekarskiej, ze terapie Dr Jemseka przekraczaly ogolnie przyjete standardy. tinyurl.com/2uo8zc Sep. 17, 2007 HEALTH Doctor who fought for his beliefs pays a high price KAREN GARLOCH Jemsek Specialty Clinic in Huntersville is closing Wednesday. That sort of news wouldn't normally make headlines. But Dr. Joseph Jemsek, the clinic's founder, is not just any doctor. He has been a pioneer in AIDS treatment during nearly 30 years in the Charlotte area. But in summer 2006, he went before the N.C. Medical Board to defend himself against allegations of unprofessional conduct in connection with diagnosing and treating patients with Lyme disease. Jemsek is one of a small group of infectious disease specialists who believe there is a condition called "chronic Lyme disease" that can be debilitating for years after a deer tick bite. He and like-minded doctors believe such patients need antibiotics for months or years, much longer than the standard few weeks. Establishment doctors in the Infectious Diseases Society of America and on the state medical board see things differently. That's why Jemsek lost his fight in July 2006. During a public hearing in Raleigh, witnesses testified that Jemsek misdiagnosed them with the tick-borne illness and treated them with intravenous antibiotics for many months without telling them the treatment exceeded the standard. Many devoted patients said Jemsek was the only doctor who helped them. The board concluded he had violated state law. Board members allowed Jemsek to continue practicing but required Lyme disease patients to sign consent forms explaining they understood his treatment differs from that of most N.C. doctors. That ruined his practice. Insurance companies stopped reimbursing Jemsek for treatment of Lyme disease. Blue Cross and Blue Shield of North Carolina filed suit, asking him to repay hundreds of claims for Lyme disease treatments that were "not medically necessary." Since then, Jemsek and his clinic have filed for bankruptcy. His five-bedroom house in Foxcroft is on the market for $2.5 million. Now his Web site Odpowiedz Link
artur737 Prezydent IDSA wygraża pięscia 18.09.07, 17:40 Jeszcze jeden wrogi dokument z IDSA opublikowany niedawno w ich czasopismie. Parafrazujac tresc dokumentu ma takie znaczenie "Znacie nas dobrze, zawsze dotrzymujemy danego slowa i teraz piszemy, ze jezeli przyjdzie nam kiedys bronic naszych restrykcyjnych zalecen leczenia borelizy to ta ręka nie zadrży". Prokurator generalny zażyczył sobie szeregu dokumentow od IDSA dotyczacych nieslawnych zalecen i je otrzymal. Potem kiedy rozszerzyl sledztwo aby szukac powiazan czlonkow nieslawnego komietetu od boreliozy z ubezpieczalniami napotkal na wsciekly opor. Czlonkowie komisji odmowili przekazania zamowionych dokumentow lub robia wszytko by ich nie przekazac. M.in. dlatego sledztwo sie przeciaga. Ten artykul jawnie popiera dzialalnosc tychze czlonkow komisji odmawiajacych wspolpracy z wladzami karnymi kraju. Prezydent IDSA żądania prokuratora generalnego nazywa frywolnymi piszac: "We will vigorously resist requests that are intrusive and time-consuming for members if these requests seem frivolous." Artykul mozna ocenic wchodzac na ponizszy link. Jedynka oznacza najnizsza mozliwa ocene. www.idsociety.org/newsArticle.aspx?id=4262 Dotychczasowe pinie na temat tego manifestu jak widac sa dosc niskie i srednia ocena to odrobine wyzej niz jeden. Volume 17 | Number 2 | Summer 2007 IDSA News heading image From the President: IDSA Stands Up For Lyme Disease Guidelines IDSA produces its practice guidelines with one goal in mind: to provide our members with the best possible advice about how to best take care of patients. We achieve that goal through a rigorous, transparent, evidence-based process. Once written by an expert panel, our guidelines are carefully reviewed for content, readability, and objectivity by the Standards and Practice Guidelines Committee, by subject matter experts, and by the Board of Directors. Thus, the conclusions are carefully developed, although we are always prepared to consider new evidence or new perspectives and initiate revisions if needed. The Connecticut attorney general has notified IDSA that he is investigating possible antitrust violations in connection with the development of our 2000 and 2006 Lyme disease guidelines. This unprecedented move against a professional society and its practice guidelines appears to have been initiated on behalf of health care professionals and patient care advocates who disagree with IDSA recommendations. These individuals maintain that Lyme disease exists in a chronic form, and that long-term intravenous ceftriaxone provides clinical benefit. The guidelines committee had carefully considered clinical evidence on these topics, and concluded that there is no evidence Borrelia burgdorferi persists chronically following 10 to 28 days of antibiotic therapy. Moreover, clinical trials have demonstrated that long-term ceftriaxone provides no objective benefit, and can cause obvious harm in terms of adverse effects of ceftriaxone and vascular access complications. At IDSA’s 2006 Annual Meeting, guideline committee representatives debated a spokesman from the International Lyme and Associated Diseases Society (ILADS) about these issues. ILADS produced no convincing data to indicate that our guidelines should be altered. Nothing Replaces Clinician’s Judgement Why is the Connecticut attorney general investigating IDSA? ILADS and others are unhappy that IDSA guidelines are used by the insurance industry as a basis for denying payment for chronic antibiotic therapy, thus depriving health care providers of income and depriving patients of therapy. IDSA is proud that its guidelines are considered authoritative and are widely used. However, IDSA recognizes that every patient is different, and nothing can replace a clinician’s judgment. Guidelines are intended to help them reach decisions about the best course of treatment. They are suggestions based on the best available science—but they are by no means mandatory. IDSA cannot and would not dictate an individual physician’s actions. Furthermore, the Society has no role in insurance company policy, and no insurance company has any role in the development of our guidelines. There is no legal precedent for charging a professional society with antitrust violations for developing clinical practice guidelines, and legal experts tell us that an antitrust claim, if brought, would have little chance of success. Even if no claim is ever brought, this investigation will have an impact on IDSA. IDSA has already spent tens of thousands of dollars in attorney fees and many hours of staff time providing documents requested by the Connecticut attorney general. Thus far, IDSA has cooperated fully with the attorney general. We have nothing to hide: Our process is rigorous and transparent. We are concerned, however, that IDSA volunteers who serve on committees not be harassed, and not be hurt financially. We will vigorously resist requests that are intrusive and time-consuming for members if these requests seem frivolous. The debate on how best to treat Lyme disease is a scientific one, and we believe it is best resolved scientifically. Unfortunately, those who are unhappy with our scientific conclusions have made it political. In some states, advocates have pressured the legislature to endorse long-term antibiotic therapy despite the evidence. In Connecticut, they have found a sympathetic ally in the attorney general, who has initiated this investigation. We are immensely sympathetic to frustrated patients who have diverse symptoms, and who are frustrated that we cannot identify a cause for their symptoms. However, our Society is committed to management strategies that rely on data, interpreted by experienced clinicians and researchers, to formulate recommendations for what approaches are effective and safe. If therapies are used which have been demonstrated to be ineffective or unsafe, we cannot shy away from discouraging the use of such practices. IDSA is facing an unprecedented challenge from the attorney general of Connecticut that threatens the role of all professional societies to educate their members and the public about best medical practices. We will do our best to educate the attorney general and his advisors, and other lawmakers and policymakers, about the merits of evidence-based practice guidelines. We also are working to educate the media and the public about Lyme disease and its proper treatment. However, we will resist any efforts to prevent the dissemination of objective, science-based recommendations. Odpowiedz Link
artur737 Real Source of Antibiotic Resistance 18.09.07, 19:04 Nastala moda dla zarzadcow Sluzby Zdrowia by motywowac odmowe leczenia u pacjentow z borelioza mozliwoscia wytworzenia opornych szczepow bakteryjnych. Ciekawe, ze nikt jakos nie ma obaw o szczepy oporne kiedy idzie o produkcje miesa. Tu uzywa sie abx nie jako srodek do leczenia chorob ale jako profilaktyke. Wlasnie na produkcje miesa idzie zdecydowana wiekszosc antybiotykow a nie do leczenia ludzi. Wiekszosc abx uzytych przy produkcji w koncu konczy sie ich obecnosci w pokarmie dla ludzi i w srodowisku naturalnym. Artykul z Kanady Antibiotic resistance...do we stop treating? It has become fashionable for medical/public health officials to use the issue of the overuse of antibiotics causing antibiotic resistant bacteria as a factor to keep treatment of Lyme disease at an unsafe insufficient level. Those same medical/public health officials' concerns become muted and virtually non-existent when it comes to the mega food producers of the world contaminating our food supply with antibiotics. By Health Canadas' own statement it is food producers using antibiotics / antimicrobials in farmed food products who are a cause of antibiotic resistance. On the same Health Canada webpage when discussing safe use of antibiotics the only issue addressed is improper use in humans yet when comparing the volume of antibiotics used in our farmed food production to human medicinal consumption one realizes human use is minuscule in comparison. Antibiotics are a commodity put in feed of animals by the ton, and not limited by prescription as they are in humans who are then given them by the individual dose. Our food industry producers are not mentioned other than that they should be "encouraged" to give antibiotics to animals only when the animals are sick. They do not...they give antibiotics to animals as growth enhancers and prophylactic disease inhibitors. The European Union, effective Jan. 1st, 2006 has banned all antibiotics in animals used in the food chain. Where is Canada on this? ... curbing treatment for humans and the targeting doctors who treat seriously sick patients. There is considerable research globally linking most antibiotic resistant bacteria one way or another back to the use of antibiotics in our food production, hospital micro-environments, or natural evolution of micro-organisms. Our farmers feed antibiotics / antimicrobials to cattle, pigs, chickens, etc. at alarming rates. Government and public health officials appear to say it is okay to continue to flood our food chain with antibiotics, which is by far the most significant problem with antibiotic resistance, while we keep humans who contract treatable disease sick because we don't want to abuse antibiotics? ...something is very wrong with this logic. Read this about pig farmers and the concerns raised in the last paragraph by the doctor. Here at this link is how one aspect of the animal industry explains it... Canadian Animal Health Institute (an institute run by those companies who make profit from selling drugs, etc. to the global mega food producers) According to the Canadian Animal Health Insitute and Health Canada it is okay to give our food animals (cattle, chickens, fish etc) antibiotics constantly while they are alive so long as levels upon death are acceptable enough for us to eat. They call these left-over traces of antibiotics in our killed meats and fish...'residuals'. The Canadian Animal Health Institute have diverted the issue of antibiotic 'resistance' to a discussion of antibiotic 'residuals'. (one wonders how this is an animal 'health' institute) These two topics, although related, are two very different issues. The larger issue of antibiotic resistance has not been addressed. The micro-organisms / bacteria our cattle, chickens, fish, etc. come in contact with daily while they are being fed antibiotics are the bigger issue. Many micro-organsims are becoming antibiotic resistant thanks to feeding on our food animals who are fed with antibiotics. Think of how many ticks, fleas, mites, mosquitoes etc. feed on the back of one cow daily. Each time these bugs feed they are getting a small dose of antibiotic that is not at levels enough to kill micro-organisms/bacteria in their guts. These micro-organisms, through rapid regeneration, evolve levels of resistance to the antibiotics. This evolution crosses over into levels of resistance to human grade and type of antibiotic. The real culprit in antibiotic resistance is the overuse of antibiotics in our global farming industry and until that is dealt with any attempt to keep humans sick for fear of creating super bugs is simply a tool used to again create fear in the public, and medical community, against using the necessary antibiotics over a long enough time to heal us. Treating victims would cost the global medical insurance industry billions of dollars...so keeping the fear alive is standard fare for the profit driven market. On any given day we have thousands of people arriving at our airports from countries around the world where antibiotics are available without prescription at local vendors. They will undoubtedly carry antibiotic resistant bacteria to our shores as well. We spend a lot of money in Canada researching the issue of antibiotic resistance yet we have not banned the biggest culprit, the mega food production business, from dumping antibiotics all over North America. These residuals are now in our food, our soil, our water etc.. see this recent report. Odpowiedz Link
artur737 25-50% kleszczy w Kanadzie jest zarazone Bb 24.09.07, 22:29 Po wszystkich awanturach rzad w koncu zaczal troche sie przygladac boreliozie. Nowo odkryta niespodzianka: w Kanadzie nie 10% kleszczy jest zarazonych borelioza a w zaleznosci od terenu jest to 25-50%. tinyurl.com/ytesac Lyme Disease Overview Lyme disease was first discovered in 1975 near Lyme, Connecticut, when two mothers called the local health department to voice their concerns about the high rate of arthritis among children in the area. It emerged that their symptoms were caused by a bacterium called Borrelia burgdorferi, which is transmitted by the bite of a tick. When surveillance of Lyme disease began in the U.S. in 1982, there were about 491 cases reported annually. This number has since increased to 17,029 in 2001. Currently, about 15,000 cases are reported each year in the U.S. In Canada, only 278 cases met the Canadian surveillance case definition for Lyme disease and were reported between 1987 and 1996. However, Lyme disease was not a reportable medical condition in all provinces during this period; therefore, this number may be understated. Also, doctors across the country may report Lyme disease based on different ways of diagnosis, so the total number of reported cases is misleadingly low. In fact, people with Lyme disease may actually be misdiagnosed with other medical conditions, including arthritis, chronic fatigue syndrome, multiple sclerosis, fibromyalgia, and mood disorders. Causes In North America, Borrelia burgdorferi are carried by deer ticks of the species Ixodes scapularis, the western black-legged tick (Ixodes pacificus) and the lone star tick (Ixodes neotomae). While deer ticks do inhabit deer, the juvenile ticks that are most likely to transmit disease generally live on the white-footed mouse in North America. In Europe, Russia, China, and Japan, where the disease also occurs, different strains of Borrelia inhabit various other animals, especially sheep. They've also been found on dogs, which sometimes contract Lyme disease. In North America, the areas of greatest risk are Pennsylvania, New Jersey, New York, Maine, Maryland, Massachusetts, Connecticut, Delaware, Rhode Island, Wisconsin, Minnesota, California, and Oregon. People who live or work in the woods are most at risk, while people living in cities are less likely to be bitten by ticks. However, household pets that spend time in the woods may carry ticks into city parks and bushes. Of the three kinds of deer ticks capable of transmitting Lyme disease, two may be found in Canada. The black-legged tick (Ixodes scapularis) can be found around Lake Erie in southern Ontario. The western black-legged tick (Ixodes pacificus) can be found on Vancouver Island, the Gulf Islands, and around the Fraser Delta in British Columbia. B. burgdorferi has been found in both these populations. Lyme disease can take months to appear, so it's sometimes hard to tell if it's been contracted locally. Symptoms The classic symptom of Lyme disease is a skin rash called erythema migrans (migrating rash). This characteristic skin rash starts out as a small red patch that gradually expands, often clearing in the centre to form a "bull's-eye" pattern. A bite from a very young tick that is very small may not leave a rash or a bite-mark. Some of the symptoms of Lyme disease are common to other medical conditions such as influenza. "Flu-like" symptoms include fatigue, headache, chills and fever, muscle and joint pain, and swollen lymph nodes. Other symptoms a person with Lyme disease may experience include: * buzzing, ringing, or pain in the ear * chest pain or rib soreness * confusion * difficulty concentrating or reading * difficulty speaking or understanding speech * difficulty walking * dizziness, poor balance, increased motion sickness * double- or blurry vision, eye pain * facial paralysis * forgetfulness or poor short-term memory * hand tremor * heart palpitations, heart murmur, or skipping pulse * joint pain, tenderness, or swelling - especially in the knee * muscle twitching of the face or other areas * neck creaks and stiffness * stiffness of the joints, neck, or back The most common complication of Lyme disease is arthritis, which affects about 60% of those who develop the rash. Unlike rheumatoid arthritis or osteoarthritis, many forms of infectious arthritis don't actually damage the bone. Most people with Lyme disease arthritis experience temporary swelling and pain, mainly in the large joints. The knees are most commonly affected, though sometimes several joints are inflamed together. Arthritic symptoms usually come and go. Some people feel brief flu-like symptoms in the days before a joint starts to swell. Though temporary, the arthritis can be severe and require crutches. Arthritic symptoms may appear within a few weeks of the rash, or they may appear several years later. Cardiac (heart) and neurological (brain and nerves) symptoms may also appear within several weeks of the onset of the initial symptoms of Lyme disease. About 5% of the people who do not receive treatment for Lyme disease may have cardiac symptoms, most commonly arrhythmias (an irregular heart beat). Neurologic symptoms occur in about 15% of people who do not receive treatment for Lyme disease, most commonly due to inflammation of the lining of the brain (meningitis) or of the brain itself (encephalitis), although there may also be other problems. Some doctors may also request studies of the brain and spinal fluid. Treatment Treatment: Antibiotics: In general, routine use of antibiotics to prevent Lyme disease is not recommended. Experts used to believe that even in areas with many cases of Lyme disease, the majority of deer ticks were not infected with the bacteria so the risk of infection after such a bite was relatively low. Newer information suggests that up to 50% of ticks in Central Canada and 25% of ticks in Western Canada may be infected with bacteria. For people who require treatment for a mild infection associated with Lyme disease, the doctor usually prescribes an antibiotic to be taken by mouth for 14 to 21 days. Such antibiotics include doxycycline* (for adults, children over 8 years of age, and non-pregnant women), amoxicillin (for children and pregnant women who are not allergic), and cefuroxime or erythromycin (for people who are allergic or cannot tolerate the first two antibiotics). For people who require treatment for more severe infections associated with Lyme disease, the doctor usually prescribes an intravenous (given through the vein) antibiotic (e.g., ceftriaxone, cefotaxime, penicillin) for two to four weeks. For persistent infections, three months of intravenous antibiotics may be necessary. On occasion, treatment with an oral (by mouth) antibiotic may be prescribed following treatment with an intravenous antibiotic. If the tick is identified and removed within 72 hours of the bite, and assuming that no skin rash is present, the doctor may consider prescribing only a single 200 mg dose of doxycycline to be taken by mouth. This treatment has been shown to help prevent the rash from developing. Inflammation of the brain and neurologic symptoms will usually clear up once the antibiotics have killed the bacteria. Anti-inflammatory and pain medications: Acetylsalicylic acid (ASA)* or nonsteroidal anti-inflammatory drugs (NSAIDs) can usually control swelling and pain in the joints. In cases where ASA or an NSAID cannot be tolerated or the person is allergic, the doctor may prescribe acetaminophen. Heart medications: For people with heart problems due to Lyme disease, medications for regulating heart rate may be recommended. In more severe cases, surgery may be required to install a pacemaker device. Prevention: Odpowiedz Link
artur737 cd: 25-50% kleszczy w Kanadzie jest zarazone Bb 24.09.07, 22:31 You can help prevent Lyme disease if you know what to look for. The tick digs its mouth into the skin and feeds for two or three days before dropping off. Evidence suggests that the bacteria are transmitted towards the end of this process. If you spend days in the woods, you should wear long pants, socks, a hat, and a long-sleeved shirt to reduce the chances of tick bites. As an extra precaution, put tape around the area where your pants and socks meet. If you spend several days outdoors in areas that might contain ticks, inspect yourself daily, once you're indoors. Check your skin carefully for ticks, and ask someone to check your scalp for ticks. If a tick has already latched on to you, don't panic. Even if the tick is infected, it isn't likely to transmit the bacteria causing Lyme disease before 36 hours of tick attachment. Other things you can do include: * If possible, stay away from tick-infested areas, especially in May, June, and July. * Stay in the middle of hiking trails and try not to brush against grasses or leaves. * Wear light-coloured clothes to make it easy to spot ticks "hitching a ride" on you. * Spray your clothes and exposed skin (except your face) with an insect repellent that contains DEET, or treat clothes with the insect repellant permethrin, which kills ticks on contact. Tick removal: The best way to remove a tick is with a drinking straw and a piece of thread. Tie a single knot in the thread and wrap it loosely around the straw. Put the straw at a 45-degree angle over the tick on the skin. Slide the thread down to the skin and tighten the knot around the tick's mouthparts. Remove the straw, and gently pull upwards with the thread. Pull the tick straight out firmly and steadily. Be patient, as proper tick removal will take time. Some experts do not recommend using fine-point tweezers to remove the tick because they will usually crush the tick's mouthparts. Crushed ticks do not survive for very long after removal, so the bacteria that cause Lyme disease will also die quickly. Even if a person has already been infected with Lyme disease, the tests on the tick will be falsely negative. Do not squeeze the tick's body, apply petroleum jelly or alcohol, or use a hot match, nail polish, or other products while the tick is attached. These actions could transmit the Lyme disease-causing bacteria to you. After you've carefully removed the tick, cleanse the area with an antiseptic (e.g., alcohol) or mild soap and water. Wash your hands thoroughly with soap and water. You should also have tick bites examined by a doctor, especially if you develop a rash or flu-like symptoms. If the tick has been removed alive, you should then place it in a container (e.g., a small jar) with a piece of moist gauze or paper towel on top so it will stay alive until you can get it to your doctor to have it tested for carrying Lyme disease. If the tick dies, the bacteria will die and the test will be falsely negative. *All medications have both common (generic) and brand names. The brand name is what a specific manufacturer calls the product (e.g., Tylenol®. The common name is the medical name for the medication (e.g., acetaminophen). A medication may have many brand names, but only one common name. This article lists medications by their common names. For more information on brand names, speak with your doctor or pharmacist. Other tips: A diagnosis of Lyme disease is based on the doctor's interpretation of symptoms, and on recent exposure to ticks and tick-infested areas. There are a number of blood tests that can detect the bacteria B. burgdorferi, but none are definitive on their own. Some experts think the blood tests are not very accurate and only catch approximately 35% of cases. Odpowiedz Link
artur737 Lyme disease belongs in limelight 28.09.07, 18:03 Troche o ostatnim protescie w Ottawie, o probie zniesienia testu Elisa w Kanadzie i o porownaniu obecnego ruchu chorych z borelioza do sytuacji ludzi z HIV w latach siedemdziesiatych i osiemdziesiatych. www.thechronicleherald.ca/Letters/898660.html Lyme disease belongs in limelight By SHAUN BURKE On Sept. 14, a gathering on Parliament Hill in Ottawa was held to boost awareness of the very real problem of Lyme disease in Canada. People from all over Canada attended this awareness gathering. It was the first national gathering of people suffering from Lyme disease. Doctors from Canada as well as the United States were in attendance. The largest issue, which was discussed, was the lack of adequate testing for the disease, as well the controversy over long-term treatment, which consists simply of antibiotics. The United Nations has stated that the disease will progress apace with global warming. As it is, Canadian doctors are not adequately trained to identify and treat it. Without proper testing and treatment, those infected with Lyme disease will slowly lose everything: finances, home, family, friends, career, spouses. But the No. 1 thing they will lose is their health. Health is wealth. It is time we all take a closer look at this disease, as it is linked to so many other diagnoses, such as MS, IBS, Alzheimer’s, Gerd, fibromyalgia and the list goes on. Why are the government and the medical community not putting funds toward research? In Canada, there is basically none happening. Lyme disease is now endemic to every province. The U.S. is on high alert for the illness, but not Canada. In the late ‘70s and early ‘80s, AIDS was ignored and downplayed. Shouldn’t we have learned as a society from the mistakes we made with AIDS? Do we just ignore Lyme disease until it becomes fashionable and politicians can see opportunity with it? The fact is people do die from the complications of Lyme disease. The Centers for Disease Control in Atlanta estimate the rate of infection for Lyme disease is outpacing AIDS tenfold. Today there are many Canadians suffering from Lyme disease who are travelling at their own expense to the U.S., desperately seeking the proper medical treatment. It has been stated that the U.S. ranks 37th in the world in medical care. If Canadians travel there for treatment, where does this leave us in the world rankings? The science is there for doctors to read. The testing is not working. People are suffering. A clinical diagnosis must be accepted as the standard until we have the proper testing. It must also be stated that testing, such as bloodwork, is only a tool in the diagnostic process of most diseases. Illnesses such as MS are out of control, to an extent we now accept them as a normal part of life. With the statistics continually showing that Nova Scotia has the highest rate of almost every illness, why is it we, the people of Nova Scotia, are not asking questions collectively? It is time we all come together and ask some hard questions of our officials. There is power in numbers, but divided, we are easily disregarded. Our recent gathering is certainly a start, but things must move faster and we desperately need the support of the general public to make some headway. For more information, please check out www.lymeinns.bravehost.com Shaun Burke is president of the Nova Scotia Lyme Disease Association. Odpowiedz Link
artur737 Woman’s 18-year struggle with affliction 06.10.07, 19:05 Free at last: Woman’s 18-year struggle with affliction she couldn’t catch here www.fortmcmurraytoday.com/Local%20News/343884.html By MATTHEW HEINDL Today staff Friday October 05, 2007 Sheila Callan suffered for 18 years of her life with Lyme disease, though doctors failed to diagnose it, even after the infamous bullseye rash appeared on her face. Doctors were told that there is no Lyme disease in Alberta, and still believe this today, even as the bacteria appears more often. Callan, after being told nothing was wrong with her or that no diagnosis was possible, was finally treated in April for Lyme disease in B.C. and continued a second round of treatment two weeks ago. It’s difficult to believe that the 46-year-old has ever been ill when you meet her now, healthy with a serious disposition. Six months ago, Callan was wheelchair bound, shaking uncontrollably, losing her vision and falling further into illness. “Even my husband said afterward he was surprised I would live past Christmas (2006), because at that point I was spiraling so far down,” said Callan. “And I think if I hadn’t found this Odpowiedz Link
artur737 cd: Woman’s 18-year struggle with afflictio 06.10.07, 19:06 Doctors in this region were not educated very much at the time, with no evidence of ticks that carried the disease or any reported localized case, “and never any deep concern for Lyme disease in this area,” said Dr. Alan Nicholson, the Medical Office of Health for Northern Lights Health. “I’m delighted for her, but getting Lyme disease here 20 years ago Odpowiedz Link
artur737 Re: "Sezon na Kleszcza" cz druga 09.10.07, 16:02 Udalo sie odwrocic demencje mozgowa u myszy chorych na chorobe Alzheimera poprzez wstrzykniecie im przeciwcial IgM. Czyli okazuje sie, ze IgM jednak przenika do mozgu. Dotad powszechnie uwazano, ze nie przenika. Moze to tlumaczyc poprawe u chorych z borelioza leczonych abx, ktore nie przenikaja do mozgu, ale pomagaja poprzez wytluczenie Bb z ukladu odpornosciowego zwiekszajac tym samym poziom IgM przeciwko Bb. Cognitive deficits in mice reversed tinyurl.com/2d24pj ST. LOUIS, Oct. 8 (UPI) Odpowiedz Link
artur737 List opublikowany w Hartford Courant (reposta) 09.10.07, 19:49 Re-posted from Randy Sykes EDITORIAL/OTHER OPINION The Hartford Courant has failed to fully publish the other side of the story in its front page headline, “Lyme Disease Diagnosis Challenged” on Thursday October 4, 2007. Bulleting “The Case Against Chronic Lyme” misrepresents the fact that there are multiple studies of refractory and persistent Lyme disease in both animal and human models. One study, published by Alan Barbour, et al. (1996) in the Journal of Antimicrobal Agents states “If treatment was delayed for 7 days or more, vancomycin failed to eradicate infection with with B. burgdorferi (the bacterial causing Lyme disease) or B. turicate (another tick borne bacteria). The failure of vancomycin in eradicating infections in immunodeficiant mice was associated with the persistence of viable spirochetes in the brain during antibiotic treatment.” For those who are not in the medical profession, vancomycin is a very, very strong antibiotic that is usually given intravenously after all other antibiotics have failed. The fact that it could not eradicate Lyme disease in immunosuppressed mice who were infected for just 7 days demonstrates significant scientific proof that the spirochete B. burgdorferi is quite virulent and clearly refutes the Courant’s print that “Lab specimens do not reveal evidence of Lyme bacterium in culture or other tests” and “Lyme bacterium not known to be resistant to antibiotics.” Moreover, the study referenced was by a researcher who is considered as on the conservative side of Lyme disease treatment, meaning he does not advocate for long term antibiotic use. Those who are internet savvy do not have to look far to find multiple peer review journal articles, patient reports, and CDC/NIH guidelines proving the following about Lyme disease: Lyme disease is a clinical diagnosis, with a very long, yet common, list of presentations. Lyme disease “blood tests” are extremely fallible and should not be used to prove or disprove infection. They only test for certain antibodies, rather than disease itself. Symptoms of Lyme disease may mimic other diseases, and thus has been dubbed “The Great Masquerader.” Lab specimens do reveal evidence of Lyme bacterium culture in several studies after antibiotic treatment. Rigorous antibiotic treatment of Lyme disease has helped thousands of patients, while under-treating the disease has maimed thousands of patients and even killed some. Lyme bacterium are very resistant to antibiotics, especially when in cell wall deficient forms or cysts. Patients who were treated too briefly, were immunosuppressed, or were treated early with corticosteroids such as prednisone tend to have advanced and more chronic infections of Lyme disease. Of course citing just one study suggesting persistent infection, even by Alan Barbour, does not mean that Lyme disease is absolutely recalcitrant, persistent, and/or chronic…so I have taken the liberty to include a website for readers to connect to where they can read for themselves. It is: www.geocities.com/HotSprings/Oasis/6455/persistence-special-abstracts.html Perhaps Henry Feder and his prestigious Journal of New England Medicine peer reviewers, lick ticks, can dig their heads out of the skin of their own egos and realize that science occurs elsewhere besides their own limited scope of reference. Moreover, the Courant should have more balanced and credible journalism that does not insult, and further injure, those who are sick with Lyme and other tick borne illnesses. The author is recovered Lyme disease patient who was treated for nearly8 years with antibiotics. He is a nationally certified psychologist who freely gives of his time to help and advocate for Lyme disease patients. He is credited for helping to sponsor a bill in 1999 that now mandates insurers to cover antibiotic treatment for Lyme disease. Odpowiedz Link
artur737 Reakcja na NEJM 09.10.07, 20:40 Jeszcze jedna reakcja na publikacje NEJM od grupy wsparcia w Maryland. Oswiadczenie prasowe - nie wiadomo czy zostanie wydrukowane. PRESS RELEASE Centreville, MD October 9, 2007 Odpowiedz Link
artur737 Inna Reakcja na Raport NEJM 09.10.07, 21:05 Report angers patients suffering with chronic Lyme BY RIDGELY OCHS | ridgely.ochs@newsday.com October 9, 2007 Bob Levine doesn't understand why chronic Lyme disease has become such a divisive issue in the medical community. "It's become a holy war," he said. "It is an issue of who's right and who's not, and the patients are stuck in the middle." A review in the latest New England Journal of Medicine arguing that there is no evidence chronic Lyme exists and that the use of long-term antibiotics to treat it may be harmful frustrates the 50-year-old engineer from Port Jefferson. Related links Scientists say chronic Lyme disease doesn't exist Levine said he has been on and off antibiotics since 1998 to treat an array of symptoms, which he attributes to chronic Lyme disease. He said he has stopped using antibiotics "dozens" of times, only to have his symptoms - headaches, double vision, mental confusion, tingling, numbness and involuntary muscle twitching - return within six weeks and disappear again when he resumes the oral antibiotic Biaxin. "It has ruined people's lives," Levine said of the disease. " ... All these people can't be head cases, including me." Levine, who feels many of the researchers are arrogant, and others say they are perplexed by what they see as the narrowness of many doctors and researchers, who, because they don't understand the complexity of the long-term disease, dismiss it as nonexistent. Colleen Nicholson of Bayville, a military spouse who is a patient advocate for military families who have been denied long-term antibiotics, said she believes many doctors ignore much of the research that has been done and have little hands-on contact with chronic Lyme sufferers. "They are basically telling me my symptoms aren't caused by anything," said Nicholson, who, along with her two sons, is on long-term antibiotics. "They are self-proclaimed experts but they don't treat Lyme." Levine said he worries that this latest review will put more pressure on doctors who treat patients like him - he would not reveal the name of his doctor. And he is concerned health insurers will begin to deny coverage. He estimated it would cost him $500 a month out of pocket for his antibiotics. But regardless, he said, he will get the drugs. "I'll always find a way to get antibiotics," he said. "It's other people who don't have the resources I have pity for." Odpowiedz Link
artur737 Re: "Sezon na Kleszcza" cz druga 10.10.07, 23:51 Zeby sie nie zagubilo tu dolaczam link na temat publikacji Fallona forum.gazeta.pl/forum/72,2.html?f=26140&w=70310528 Odpowiedz Link
artur737 Sprawa z NEJM 13.10.07, 05:10 Tym artykulem grupa IDSA zaatakowala niedawno chorych z borelioza. Kto chce i zna angielski niech sobie przeczyta. content.nejm.org/cgi/reprint/357/14/1422.pdf A Critical Appraisal of “Chronic Lyme Disease” Henry M. Feder, Jr., M.D., Barbara J.B. Johnson, Ph.D., Susan O’Connell, M.D.,Eugene D. Shapiro, M.D., Allen C. Steere, M.D., Gary P. Wormser, M.D., and the Ad Hoc International Lyme Disease Group* Tego rodzaju atak nie zdarzyl sie pierwszy raz, ale ruch chorych zaniepokoil sie powaznie, poniewaz atakujacy artykul zostal opublikowany w bardzo poczytnym i cenionym New England Journal of Medicine. Lekarze czytajacy to medyczne pismo licza na to, ze publikacje sa wczesniej dobrze sprawdzone pod wzgledem jakosci i dlatego czesto wnioski z nich od razu wedruja do praktycznej medycyny. Stalo sie to teraz zapewne dzieki temu, ze edytorem pisma jest niektoinny a znany nam i oslawiony Klempner. Lekarze LLMD a glownie Dr Jemsek wystosowali nastepujaca odpowiedz. Nie wiemy czy ta odpowiedz zostanie opublikowana czy nie, ale podejrzewamy, ze tak. Inaczej zapewne nie bylaby upubliczniona. Artykul jest napisany w mocnych slowach i wywleka nagorsze brudy IDSA na srodek. Prawde mowiac dawno juz nie widzialem az tak zaangazowanego listu. Byc moze nawet nigdy List byl napisany jeszcze przed opublikowanie pracy Fallona wiec autorzy nie mogli wtedy uzyc nowych dowodow z badan medycznych. Ciagle jednak odwalili naprawde dobra robote. Szkoda, ze list jest az tak dlugi bo o tlumaczeniu na polski mozna sobie raczej chyba tylko pomarzyc. Odpowiedz Link
artur737 Odpowiedz na artykul z NEJM 13.10.07, 05:18 It is not intended to reflect an exhaustive critique of the many shortcomings of the “Feder” paper, but rather an attempt to highlight the most glaring incongruities and perplexing logic flows contained within what is considered a shameful and politically-motivated article. The purpose of this critique is to place disparaging opinion about persistent disease associated with Lyme Borreliosis on full exhibit. The subject of “Chronic Lyme Disease” was once again presented in a prominent journal setting in a recently published “review” in the October 4 NEJM article by Feder et al. As seen in several previously published reviews, opinions, and guidelines, the tenor of the publication is dismissive to physicians who feel that Borrelia burgdorferi, the causative agent of Lyme disease, may be responsible for persistent illness which requires long-term antibiotics and a myriad of other treatment considerations and measures. It seems to patronize the opinions of these physicians, opinions which are backed by hundreds of scientific publications and galvanized by countless clinical encounters with desperate and marginalized patients. Published “reviews” on Lyme disease, similar to the Feder article, seldom offer any new or credible insight into clinical or scientific issues, and therefore their purpose and timing must be questioned. This article clearly echoes the stilted logic and highly suspect content promoted by the portion of the 2006 IDSA Guidelines which dealt with this subject matter and whose authors may come under anti-trust investigation. The repetitive arguments promoted by a select group of researchers and/or self-proclaimed “ad hoc” committee members –“the Lyme Cabal”, as we will refer to them, includes the high-ranking members of the CDC’s Vector Borne Branch, Johnson and Mead, and do nothing to further our understanding of what is making our population chronically ill. In the absence of new ideas and with a history of rejecting meaningful dialogue with those who may disagree with them, Feder and associates appear to simply reshuffle authors and rearrange their template of imperial arguments for this most recent article. Again they employ the same indecipherable, distorted, and circular logic which they have displayed in the past, and appear to play favorites with their facts. Many of the authors cited are known to have ties to patented business ventures dealing with, among other things, future testing and vaccine development in Borreliosis-related ventures. We have serious concerns about propriety and integrity issues for both the Lyme Cabal constituents and for the NEJM, which has a heretofore irreproachable standard of excellence in publishing medical science. We also express serious concerns about the health of our population in terms of the continuing scientific “ambiguity” surrounding this disease complex, which we term Lyme Borreliosis Complex (LBC). The review begins by indicating an important fact – that Lyme disease is a serious public health problem which is “complex”, but the tone of the article immediately thereafter becomes and remains,dismissive. LBC is trivialized through consistent application of journalistic phrasing techniques designed to give the reader a sense that the authors are annoyed that there is a fuss about this issue, and that their views have not been accepted without reservation. Odpowiedz Link
artur737 Re: Odpowiedz na artykul z NEJM 13.10.07, 05:19 Examples of these methods of literary intimidation and the abusive misuse of factual material are scattered throughout the text and are briefly portrayed as follows: a) This “serious public health threat” which is “complex” will “usually respond well to conventional antibiotic therapy.” The committee fails to provide evidence of what response is measured and by what methods. b) They further state that a “minority of patients” have symptoms which remain after “resolution…after antibiotic treatment.” Again, this assumes that all patients are diagnosed and treated, which is simply not fact, and again this statement defaults to the committee’s inflexible criteria for diagnosis and treatment. c) The committee further considers symptomatic illness as “usually mild and self-limiting”, and defines these patients as having “post-Lyme disease syndrome”, an arbitrary term adopted by the Feder camp years ago and thoroughly associated with ill-defined, non-organic illness through repetitive indoctrination with this brand of pseudo-scientific jargon on the unsuspecting medical community. “Mild and self-limited” is counter to the characterization of numerous other reports, and contradicts the authors’ opening remarks of a “serious and complex” illness. The terms “mild and self-limited” are subjective, and craftily inserted to prejudice the biased opinions which follow. d) After the initial paragraph, the word “complex” is no longer mentioned, as if the authors feel readers will forget the reference as it is plowed under by subsequent disparaging remarks. e) The committee stated that their review is “not the objective manifestations of late Lyme disease but rather the imprecisely defined condition referred to as ‘chronic Lyme disease.’” i. ‘Objectivity is in the eye of the beholder. The more skilled and experienced the observer becomes, the better the tools available with which to measure; the better the understanding of the elements which comprise the universe of the subject matter at hand, the more “objective” the manifestations of the illness complex will become. ii. The committee is derelict in not being more forthright about issues of objectivity; if objective measures are wanting, why not make efforts to improve them? The practice of medicine is suffering mightily as our practitioners increasingly rely upon guidelines and “cookbook” medicine, and not on what the patient communicates. We physicians are becoming more robotic, and why is that so? The physician must constantly listen to, and learn from the patient, especially when “testing” fails both provider and patient. iii. The committee stumbles over the precise definition of an illness they initially state is “complex” and proceeds to want only blur the debate further by talking about, “not the objective manifestations of Lyme disease”, but rather “chronic Lyme disease”. This is classic double–speak on their part. Odpowiedz Link
artur737 Re: Odpowiedz na artykul z NEJM 13.10.07, 05:24 f) The committee targets a “small number of practitioners”, not a subtle reference, the terminology of which is assuredly designed to reduce the number and significance of those with opposing viewpoints. The committee appears to mock physicians who “suggest” that persistent B. burgdorferi may require long-term antibiotic treatment, or that it may be “incurable”. They do so in such manner that suggests a whimsical allusion to futility, and implies in parallel analogy that patients who embrace this view are equally futile in their thinking. g) Declarative and unsubstantiated statements dominate the “review” as in “the opinion of the committee is that Lyme disease includes a broad array of illnesses or symptom complexes for which there is no reproducible or convincing scientific evidence of any relationship to B. burgdorferi infection”. First, note that this is an opinion but, in the setting of the Lyme Cabal publishing in the NEJM, this opinion equates to dictum and also, in our collective opinion, equates to an abuse of power by those who hold power in this setting. The lack of “evidence” reference, which glides so easily on the NEJM page, is easily countered by well-documented literature references indicating that the world at large is held hostage to unreliable and stifled testing which severely limits the ability of the practitioner to provide laboratory data in support of this aforementioned “complex illness”. h) In the very near future, we predict that many of the Lyme Cabal will find it hard to explain the more than 200 patents they hold for better testing, vaccine development, and other business interests in the expanding universe of Borreliosis-related disease. Further, it may prove exceedingly difficult for the Cabal to explain why their involvement with these patents have been largely undisclosed, when the science at hand could have benefited the untold thousands whose lives have been unalterably changed by this chronic illness. i) Late in the publication, the committee uses the political and inflammatory term “Chronic Lyme Disease” as the heading of a new section, instead of their preferred term, “late Lyme disease”. We ask the obvious question of why the choice to begin a section with something the committee says does not exist. j) The committee further makes vague and imperial comments about those diagnosed and treated for Lyme disease, as somehow being “substantively” different than those with other “recognized” infectious diseases. We are disturbed that a NEJM editorially-approved article would accede to a reference which equates to “intellectual cement” in academic medicine. At what point did the US academic universe decide that they had a handle on the mysteries of medicine? Over 90% of the most prominent chronic illnesses, e.g. MS, RA, Crohn’s, etc., have no know cause. This is hardly a position from which to exude scientific arrogance. Diagnoses are, and always will be, integrally associated with varying clinical criteria, test interpretations, and physician judgment. Testing was designed to serve the will of the clinician and now it seems that the tail wags the dog. Odpowiedz Link
artur737 Re: Odpowiedz na artykul z NEJM 13.10.07, 05:26 Generational change in medicine historically shows that 50% of what we hold as fact today will change, but which 50%? k) A disclaimer by an organization is an attempt by the rule makers to absolve all recriminations in perpetuity. To wit, as our authors and their alter egos at the IDSA suggest, (and as some of the committee’s authors who took part in the 2006 Lyme Guidelines stated): “It is important to realize that guidelines cannot always account for individual variations among patients. They are not intended to supplant physician judgment with respect to particular patients or special clinical situations”. Why then would these committee members attempt to minimize the role of physician judgment in the diagnosis of any illness, especially a disease with the devastating impact of persistent Lyme disease? Clearly the committee is de-emphasizing clinical judgment and experience because they don’t fully appreciate the roots of their discipline – the patient. This is a highly disturbing and dangerous thought for the profession of medicine and for the population which it serves. l) The committee criticizes the “lines of reasoning” to support a diagnosis of Lyme disease in those who do not show antibodies against B. burgdorferi in serum, particularly given the “the well-known immunogenicity of lipoproteins”. They claim these “theories” of antibody negativity with LBC are not well-supported by scientific data. They fail to acknowledge that the testing reagents used in traditional labs are limited to only one strain (B31) in a disease in which multiple Borrelia burgdorferi strains may play a role. They ignore the well-documented altered life forms of Borrelia species, (e.g. CWD forms, cysts, and blebs), none of which manifest lipoproteins. They fail to acknowledge the intracellular habitat of both helical and cyst forms, and the disturbing ability of the B31 spirochete to penetrate a series of neuronal and glial cell lines, as described in the 2006 Livengood CDC paper published in the summer of 2006. They fail to hypothesize or consider the notion that patients with LBC may have highly dysfunctional innate and adoptive immunologic effects. As if not satisfied with yet another highly creative and biased interpretation of the data, the authors then turn to criticize “specialty labs” as not “FDA approved”. The FDA, which by the way acknowledges that current testing is unreliable, has nothing to do with credentialing labs unless a product is marketed, a convenient oversight by the authors. This “shoot the messenger” approach ignores the highly suspect and arbitrary manipulation of data and policy which took place at the 1994 Dearborn meeting and left the world without Osp A and B bands as qualifying criteria for diagnosis. This is a particularly mystifying situation since the ill-fated and ill-conceived LYMErix vaccine promoted by several of the Lyme Cabal was based on the Osp A, or kda band 31, lipoprotein antigen. Most significantly, the authors fail to mention that much of the research done by several of the authors of their own committee, (when closely examined), supports the opposite view of what they express. Perhaps they should go back and re-study their own, earlier research. Odpowiedz Link
artur737 Re: Odpowiedz na artykul z NEJM 13.10.07, 05:27 As stated previously, many in the Lyme Cabal are involved in various side-interests which include, but are not limited to, the patenting of diagnostic tests and/or components thereof, which we have referred herein. Therefore, we and others are concerned that these individuals might have a vested interest in dismissing any diagnostic or treatment modalities contrary to their “recommendations”. . m) The committee uses “shock value” terminology to describe a minority group who treat Lyme disease – a handful of practitioners utilizing “unconventional” or “dangerous” methods to treat Lyme, as if they are the collective majority. The mainstream of providers does not fit their characterization, so these inferences are wholly unsubstantiated, unwarranted and malicious. To this end, the committee has a history of promoting the term “medical quackery” at every opportunity because its use resonates loudly as an alarm to the public. The authors know that libelous remarks directed against specific physicians or groups are very difficult to prosecute and that their public indignation makes for good journalistic copy without fear of reprisal. . n) Further, the committee states that “no other spirochetal illness including…tertiary syphilis is managed in an analogous fashion.” Syphilis, caused by treponema pallidum, has a formidable and sinister history for causing human illness in past centuries, and in recent times has experienced a renaissance associated with the HIV/AIDS pandemic. Unlike Borrelia burgdorferi, treponema pallidum has only one host, the human, whereas Borrelia burgdorferi has many hosts. For the record, we use a “tongue in cheek” byword when referring to treponema pallidum, which we refer to as “Lyme’s DUMB Cousin.” We use this droll term based on comparative genomic profiling among spirochetal and other bacterial species, which makes Borrelia burgdorferi the clear winner in the microbial genetic lottery. o) The authors compare the duration of treatment for Lyme disease to that of tuberculosis, another predominantly intracellular infection. We are amused at the implications by the authors that tuberculosis is treated successfully for a relatively limited period of 6 months, compared to LBC which “may go on for years”. However, in the not so distant past, tuberculosis used to require 18 months or more of antibiotics. When better drugs became available and pulsed antimicrobial programs were employed, therapy was made more efficient and shorter in duration. Of interest, pulsed therapy is precisely the treatment methodology employed by the Jemsek Specialty Clinic and other Lyme-literate physicians in treating “chronic Lyme disease”. Furthermore, as experience is gained, treatment programs using combination antimicrobials, as is the case for tuberculosis and HIV/AIDS among many other complex infections, is also allowing for more efficient therapy of shorter duration in LBC. p) In terms of persistence, dozens of articles support this notion, including some of the authors’ earlier works. From a purely observational basis, if Borrelia burgdorferi is so easily dealt with in the infectious state, why does it proliferatively persist in hard-shelled ticks, various small and large mammals, and humans (not the end host). Why is it revered by microbiologists as the most uniquely and lavishly genetically-endowed bacterium on the planet, and why is it being so heavily patented by Universities, researchers and others, including the majority of the members of the committee who performed the NEJM review? Odpowiedz Link
artur737 Re: Odpowiedz na artykul z NEJM 13.10.07, 05:32 q) Approaching the stratosphere of arrogance, the committee goes on to summarize Lyme disease into 4 convenient categories, like shoeboxes lined up in a row for shoeless and illiterate providers, without vote or consensus via any authorized committee or organization which would consummately arrive at these “categories”; and yet these were blithely published by the NEJM. So, because they must be addressed, we will do so. i. They do not accurately encompass the majority of Lyme disease patients. ii. They choose to ignore patients who present to their physicians with clear erythema migrans rashes and other clinical symptoms of Lyme disease, but who are told they “do not have Lyme”, because the physicians do not recognize its clinical manifestations, or are relying on surveillance criteria definitions, and inaccurate laboratory testing. iii. These individuals are then not treated, and go on to develop Lyme disease in a chronic form. iv. They also do not address patients who are misdiagnosed with other illnesses such as MS, ALS, RA and CFS. v. The committee assumes at all points that patients are treated appropriately for their illness, and yet in fact, most patients receive little or no treatment, which is why they remain chronic. vi. In patients with positive serology and no objective symptoms, the Bb-associated illness may be subclinical, as research proves that Bb remains dormant within the body for extended periods of time, from months to years after infection. Some of the committee members’ own research clearly states this. vii. Category 4 disease, as newly crafted and defined by the Lyme Cabal, has had an embarrassingly small number of treatment trials upon which to draw these conclusions. Further, in eschewing the study and expansion of the scientific and clinical horizons for the innumerable issues which remain to be addressed in this illness complex, the authors make it clear that they are content to remain entrenched in their existing dogma perhaps until it is “time to announce the Lyme epidemic” and bring out the new tests and vaccines. The most prominent of the studies mentioned above was performed by Dr. Mark Klempner, a committee member who also happens to be on the editorial board of the New England Journal of Medicine. If the NEJM is an objective medical journal, we ask why this fact was not made prominently apparent for its readership. Odpowiedz Link
artur737 Re: Odpowiedz na artykul z NEJM 13.10.07, 05:34 r) The committee is disdainful about antibiotic therapy causing “considerable harm” to patients, but fails to mention that all medical treatments have inherent risks. This allowance by the editor of the NEJM is in and of itself, unpardonable. Further, the authors fail to present a balanced representation of the patient populations in question. They fail for example, to mention that untreated and dismissed chronic Lyme patients commit suicide at alarming rates due to the hopelessness and agony associated with this illness. s) The committee members claim those running clinical studies have had “difficulty” securing patients who meet the criteria of their obviously biased studies – such as the elimination of 500 people who were excluded because they lacked a “substantiated history of Lyme disease.” Substantiated by what account? Most Lyme patients have no substantiated history of Lyme disease because doctors are missing the diagnosis and failing to treat these patients…more circular logic. Again, the committee is myopic in arriving at its conclusions about the scarcity of patients, either those “well-documented” or who develop “clinically significant problems” after “conventional treatment.” We would like to provide the benefit of the doubt to the Lyme Cabal and pray that their glossing over and misinterpreting/ignoring or trivializing consistent and debilitating patient issues are not intentional. t) There are untold thousands of individuals in our country and around the world who live unfulfilled and tortuous lives due to the political situation surrounding LBC and consequent access to quality care issues. A symptom of the rudimentary state in which we find ourselves is made evident by the authors suggesting that eligibility criteria for controlled trials require symptoms be “severe enough to interfere with the patient’s ability to function”. This line of reasoning is simply astounding in its unsophistication and insensitivity. The committee’s statements about controlled trials and documented disease history is admirable and would be more so if the medical community was fully engaged in an environment in which, as in HIV research, the best minds were involved and funded in the pursuit of the study of this illness complex. Patients know what has made them better and it is highly insulting to patients who are denied care or who had irreversible adverse health consequences to themselves or their loved ones because of suspect motivations by those who now hold power…….almost certainly the patient’s interest is not the primary concern in this story. Odpowiedz Link
artur737 Re: Odpowiedz na artykul z NEJM 13.10.07, 05:37 IN SUMMARY Open attempts to intimidate the Connecticut Attorney General, physicians, and patients are not lending credibility to those who are perpetrating this behavior. Nevertheless, the politicization of an illness for which many people are tragically suffering, and who are afforded very little credence by the scientific community when evidence shows their illness is real, and who are subjected to increasingly narrow treatment options, may indeed be approaching not only anti-trust violations, but scientific fraud on a grand scale. The public confusion comes not just from the myriad of symptoms or the restrictive definition of the illness itself, but also from physicians and patients who are well aware of the illness within their own bodies, and who are confounded by the unwillingness of the scientific community to embrace a medical illness of such major significance. Rather, many perceive an increasing plaintive and obvious disregard for the welfare of thousands of patients by a small number of individuals entrenched in power and trapped within their logic loops, whether these loops are genuinely believed, or contrived. Inaction is somehow justified on the basis of a lack of double-blind, randomized studies. Regrettably, there also appears to be a barrier to publication of dissenting views by the editors and reviewers of established journals. The public, including some physicians, do know how to read, after all, and patents and a pattern of interpretative reversal in research opinions speak volumes about the truth of LBC. So does successful resolution of symptoms through open-ended, long-term antibiotic treatment of Lyme disease. In this complex illness, therapy is most often successful, i.e. life restoring, when it is patterned on an increasingly sophisticated understanding of the many interwoven issues involved in the illness, and in the successful integration of therapies which address the immunosuppressive, multi-systemic, polymicrobial disease complex which is LBC. Most of us deeply involved in patient care don’t care who takes credit for change, and realize that traditional powers must engage for this to happen. We encourage this at every opportunity. Physicians and patients are earnestly waiting for the truth to be revealed, and we hope that this truth will arise from the medical community in a proactive and vigorously engaged manner. LBC is just part of what is driving an epidemic of unwellness and chronic illness in this country. The paradigm of medicine and chronic illness must change over time………too many of us are sick and getting sicker. [1] Feder HM Jr, Johnson BJB, O’Connell S, Shapiro ED, Steere AC, Wormser GP, and the Ad Hoc International Lyme Disease Group*. NEJM. 2007 Oct 4;357(14):1422-1430. A review article [2] Wormser GP, Dattwyler RJ, Shapiro ED, Halperin JJ, Steere AC, Klempner MS, Krause PJ, Bakken JS, Strle F, Stanek G, Bockenstedt L, Fish D, Dumler JS, Nadelman RB. “The Clinical Assessment, Treatment, and Prevention of Lyme Disease, Human Granulocytic Anaplasmosis, and Babesiosis: Clinical Practice Guidelines by the Infectious Diseases Society of America.” Clinical Infectious Diseases 2006;43:1089-1134. Odpowiedz Link
artur737 Re: Odpowiedz na artykul z NEJM 19.11.07, 04:25 Tu jeszcze dolaczam list od LDA w tym samym protescie NEJM Owes Patients Responsible Journalism Says Lyme Disease Association Jackson, NJ, October 4, 2007-The New England Journal of Medicine (NEJM) published an article October 3 titled A Clinical Appraisal of "Chronic Lyme Disease." Eleven of its authors also served on the IDSA Lyme Disease Guidelines panel which is under investigation by the Connecticut Attorney General for the development of those Guidelines. Although the article mentions the investigation, nowhere does it disclose that these authors are under investigation. What sanctions does a journal of the stature of NEJM impose on authors who do not fully disclose? In an unscholarly tone uncharacteristic of NEJM, the article concludes there is no chronic Lyme disease, and patients should not receive treatment. It tells doctors how to deliver that message to patients. It implicates Lyme disease groups established by "laypeople" as being part of the problem rather than part of the solution. Yet the article offers no solutions as to how to identify what these patients do have or what can be done while this issue is resolved. Worse, the article precludes the exercise of clinical judgment, which physicians usually rely on in areas of uncertainty. NEJM is used by physicians worldwide, but this article provides an appendix of author-selected science that physicians use to deny patients diagnosis and treatment and excludes the science in opposition. A balanced peer review process that included divergent viewpoints would have prevented this. No one benefits from foreclosing debate on open scientific issues. The problem in Lyme disease is not the patients or their treating physicians, but the suppression of divergent viewpoints. Without open public debate, critical questions never reach the research agendas. What responsibility does the NEJM have to provide "the whole truth" to its readers? NEJM has done a disservice to patients who are sick with Lyme disease and who now will be unable to get a diagnosis and treatment. Isn't it time that responsible, rational people stop recycling the same rhetoric from the same people and instead choose to sit at the table together to find out why tens of thousands of people are left to suffer without diagnosis and without treatment? Patricia V. Smith President, Lyme Disease Association 888-366-6611 Lymeliter@aol.com Odpowiedz Link
artur737 Re: "Sezon na Kleszcza" cz druga 16.10.07, 22:15 www.insidebayarea.com/ci_7182577?source=rss Chronic Lyme disease' is center of debate By Delthia Ricks, NEWSDAY Inside Bay Area Article Last Updated:10/15/2007 06:33:45 AM PDT IN WHAT is becoming one of the most heated debates in medicine, doctors, scientists and patients are lining up on two sides of a discourse about Lyme disease, an infectious condition whose incidence has risen sharply in recent years. A prestigious group of physicians and scientists says there is no evidence that chronic Lyme disease exists, and that patients may be doing themselves more harm than good by undergoing prolonged antibiotic therapy. The team wrote a report earlier this month saying as much in the New England Journal of Medicine. Yet scores of people, told by their physicians that they have chronic Lyme disease, dismiss the report as biased and without merit. Lyme disease is the most common of all vector-borne infections in the United States. Vectors include ticks, mosquitoes or fleas. In the case of Lyme disease, the vector is the Ixodes scapularis tick, or deer tick, which carries the bacterium Borrelia burgdorferi. Symptoms include fever, headache, fatigue and sometimes a skin rash. Left untreated, infection can spread to the joints, heart and nervous system. Scientists at the Centers for Disease Control and Prevention estimate that 64,382 Lyme cases nationwide were reported between 2003 and 2005 and that 59,770 cases were reported in the 10 most affected states. "This is very upsetting," said Eva Haughie of Manorville, N.Y., adding that not only has she been bitten at least 45 times by ticks and their nymphs, or early-stage ticks, but that she has suffered with tick-borne infection since 1988. However, a team of doctors who doubt "chronic Lyme" is genuine say using the term itself is a misnomer. Moreover, they say, prolonged use of antibiotics is expensive and dangerous. The doctors cite drug resistance as one consequence and the destruction of the body's "good" bacteria as another. Dr. Eugene Shapiro, lead author of the report and a professor of pediatrics and investigative medicine at Yale University, said more than 30 experts in infectious diseases participated in the research and support the conclusions. Co-authors include those from the CDC, Harvard Medical School and New York Medical College, home of Dr. Gary Wormser, who led a task force last year on development of new diagnostic and treatment guidelines. Wormser told Newsday when the new guidelines were announced that 95 percent of Lyme disease cases are cured within 10 to 28 days with oral antibiotics. Long-term antibiotic therapy, he said, has not proven effective, and may be dangerous. The new research picked up the mantle from there. "People who say they have chronic Lyme have symptoms, such as fatigue and aches and pains. The epidemiology is very similar to chronic fatigue syndrome and fibromylagia," Shapiro said. "It's also very similar to chronic Epstein-Barr infection, which people no longer believe in," he said of an infectious disorder that was commonly diagnosed in the 1980s. Rather than calling the condition chronic Lyme disease, Shapiro and colleagues advocate referring to symptoms that persist for six or more months as post-Lyme disease syndrome. Haughie wonders how doctors could be so callous. She said tick-transmitted bacteria caused her to endure cognitive impairments similar to Alzheimer's disease and weakened her ability to walk and talk. Long-term antibiotic therapy, she said, helped her regain her strength and memory. She said doctors have prescribed antibiotics on and off since 1988. Rosemary Markowsky, a patient in Manhattan, said she was apparently bitten in 1994 but it took more than a decade to get the correct diagnosis. "I was misdiagnosed for 12 years (and) now after 11 months of antibiotic therapy I am 90 percent better," she said. Dr. Len Horowitz, an attending physician at Lenox Hill Hospital in Manhattan, said prolonged antibiotic therapy may be warranted for patients with advanced symptoms. "In the later stages, patients may even need intravenous (antibiotic) therapy because Lyme can progress from a simple infection to cardiac disease. The organism at this stage is more difficult to eradicate," he said. In Wilton, Conn., Dr. Steven Phillips, past president of the International Lyme and Associated Diseases Society, said he's dismayed that Shapiro's report appeared in such an influential journal. "It was biased and without merit," he said. But even though Phillips said chronic Lyme disease is real, he acknowledged that no one knows how many patients are affected. "Everybody defines chronic Lyme differently," he said. "I define it as people who keep relapsing." Odpowiedz Link
artur737 "Other Side" of Lyme Disease 18.10.07, 20:26 www.prweb.com/releases/2007/10/prweb561780.htm The "Other Side" of Lyme Disease: Understanding Odpowiedz Link
artur737 cd: "Other Side" of Lyme Disease 18.10.07, 20:29 Dr. Lipson notes that, for depression and anxiety, antidepressant medications can be helpful, as can learning coping strategies and effective communication skills to help deal with family, friends, and medical providers. She also recommends seeking out a specialist trained in medical or health psychology, such as a medical or health psychologist, ideally someone who's treated other patients with Lyme disease. Another big help: Joining a Lyme disease support group, such as the one Dr. Lipson leads for Time for Lyme, which is co-sponsored by the Greenwich Dept. of Health and Greenwich Hospital (The support group meets at the Greenwich Town Hall the first Thursday of each month. Meetings run from 7-8:30 PM. You can find more info on the support group on their website at www.timeforlyme.org.) "Support groups can be an invaluable tool for people struggling with Lyme disease Odpowiedz Link