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  • artur737 23.06.06, 02:49
    Chronic Lyme disease sufferers battle for diagnosis, treatment
    By Nick Casey, Special to the Town Crier
    Gazeta Los Altos Town Crier
    June 22, 2006

    Carol Ann Schaffner, a Los Altos mother of five, was diagnosed with Lyme disease in 1999. The experts say she should not still be sick: According to the U.S. Centers for Disease Control and Prevention, ordinary cases of Lyme disease can be fully treated with 21 days of oral antibiotics. The Infectious Disease Society of America contends that Lyme disease is "easily treated and cured" in about 95 percent of all cases.

    And yet, seven years later, Schaffner continues to feel Lyme disease symptoms: extreme fatigue, joint ache, muscle pain and shortness of breath. A scan showed the disease has spread to her brain, which causes her to lose words in midconversation and suffer from short-term memory loss. She spends about $3,000 every month on oral and intravenous medications for herself and her two children, who also have the illness.

    And they are not the only ones. Ellen of Los Altos and Theresa of Menlo Park - who did not want their last names used - said their symptoms are not going away either. They call themselves "Lymies," part of a growing group of sufferers who are not recovering as quickly as some experts claim they should be.

    "A lot of the science being used by these organizations is over 20 years old," said Dr. Raphael Stricker, a San Francisco doctor and president of the International Lyme and Associated Disease Society. He is one of only three doctors in the Bay Area who specializes in treating Lyme disease.

    "The reality is there's just a handful of individuals in the IDSA who have an interest in the disease at all," he said.

    It is generally agreed that Lyme disease is an infection caused by the bacterium Borrelia burgdorferi, carried by deer, mice, squirrels and other small mammals. On the West Coast, it is transmitted from these animals to humans through bites of the Western blacklegged tick. Known scientifically as Ixodes pacificus, the tick is very difficult to see. Nearly imperceptible to the human eye in its nymph stage, it is about the size of the period at the end of this sentence when fully mature.

    A victim's first symptom is an erythema migrans rash, a bull's-eye-shaped red irritation around the bite, accompanied by flulike nausea. If noticed immediately, doctors agree, the disease can be stemmed with a three-week cycle of antibiotics.

    But Schaffner and her son never saw their initial tick bites. Neither did Theresa. Ellen has no recollection of even being bitten.

    The intractability of such chronic cases has caused confusion and debate in the medical community and considerable anger among disease sufferers.

    "My physician first told me I had housewife's disease," said Schaffner.

    Lyme disease is known as the "great imitator." Its symptoms mimic those of many other disorders, including multiple sclerosis, fibromyalgia and Chronic Fatigue Syndrome. In cases lacking the smoking gun of a tick bite, diagnosis proves to be its own quagmire. Schaffner was initially referred to a therapist. It was only after eight years of escalating symptoms that she was finally diagnosed with Lyme disease.

    Similarly, Ellen saw numerous doctors and spent approximately $250,000 over eight years before being properly diagnosed. Two years ago, Ellen read a medical newsletter article that gave her a clue that her Chronic Fatigue Syndrome diagnosis was actually Lyme disease.

    "I asked the doctor treating me to be tested for Lyme," she said. "The tests were inconclusive - one lab test was positive and the other was negative. When the doctor said, 'Well, if you have Lyme, it's very mild,' I replied, 'I want a second opinion.' In the end, I was right!"
  • artur737 23.06.06, 02:50
    The reason so many Lyme patients slip through the cracks, Stricker said, is not because physicians are not testing for Lyme disease but because they are using an ineffective test. The CDC recommends using an enzyme-linked immunoassay (ELISA) test, a blood test that detects a large set of antibodies associated with the B. burgdorferi bacterium.

    If the test is negative, no further testing is recommended, according to the CDC.

    Dr. Christine Green, a Los Altos family practitioner who specializes in treating Lyme disease, believes in further testing.

    "The ELISA misses about 50 percent of Lyme cases," she said. "You might as well just flip a coin."

    Green said a more reliable screening is the Western blot, which checks for 10 to 12 antibodies associated with B. burgdorferi - several more than the ELISA. Lyme antibodies vary depending on where the bacteria have settled in the body. Many of the variations that can be detected by the Western blot do not show in the ELISA. As a consequence, all Lyme patients with false-negative ELISA results will never receive the test many experts feel is the only reliable non-clinical method of testing for Lyme disease.

    "If we had an AIDS test that missed 50 percent of all AIDS patients, people would be screaming on the Capitol steps in Washington," Stricker said. "Because it's Lyme, no one seems to care."

    This often means that the afflicted are told that their symptoms are all in their heads. "People begin to think of you as a malingerer," Ellen said.

    Schaffner experienced similar difficulties. Her doctors would not order proper tests, she said, and her insurer would not pay for them.

    When she was walking out of her clinic one day, Schaffner said, a nurse stopped her. "'You know you do have Lyme disease,' she told me. 'Doctors at the hospital refuse to treat chronic Lyme disease.'"

    Because many hospitals lack an acknowledged expert in Lyme disease, their doctors follow the guidelines of national medical organizations, which maintain that Lyme disease is not a chronic illness.

    Eventually, Schaffner traveled to Atlanta at her own expense, where a physician, a high school friend, performed the tests to confirm the disease.

    For both Schaffner and Ellen, diagnosis was only the beginning.

    Both have undergone a regimen of powerful antibiotics and drugs, both have tallied immense medical bills. Both contracted the same coinfection, Babesiosis - a common occurrence because ticks transmit numerous other bacteria along with Lyme. The women continue to have neurological disorders and neuropathy - Schaffner experiences memory problems, Ellen suffers painful, burning legs and feet.

    Schaffner and Ellen are fighting back. Ellen, whose fatigue had prevented her from holding even part-time work, aims to resume work slowly, dividing her energy between freelance writing and personal fitness coaching. Schaffner, who contracted the disease a second time when bitten by another tick, has become an advocate for both her children and the Lyme disease community. Her daughter, who contracted Lyme disease before enrolling in UC Santa Cruz, has published articles in national journals in an effort to correct misunderstanding of the illness.

    Author Amy Tan freely shared her own experience with Lyme disease with a Celebrity Forum audience in April 2004. Her story of infection and diagnosis mirrors those above. Infected without realizing it, she associated the early symptoms with her frequent airline travel. When her symptoms expanded into seizures, memory loss, hallucinations and foot pain, like other sufferers, she went to her doctor for a diagnosis.

    Tan was "referred to specialist after specialist" and endured countless laboratory tests with no specific diagnosis. These were well-known physicians, recommended by her doctors in major urban centers - and they didn't know, she said.

    Tan finally matched her major symptoms with the description of Lyme disease on the Internet and found the name of a Lyme disease specialist. Within two weeks, she tested positive for Lyme on the Western blot, which confirmed that doctor's diagnosis. Because Tan, like Schaffner, Ellen and Theresa, received a late start on treatment, it took a while for her symptoms to lessen.

    She has become an advocate for awareness and early diagnosis. Tan pointed out that she is able to pay for the expensive treatment but that many insurance carriers refuse to cover the ongoing care.

    Lyme disease specialists have had to take up arms as well - not just for their patients' sake, but also for their own.

    "The medical community has gone after physicians who treat chronic Lyme disease," said Stricker. Because of the controversy regarding long-term treatment, the few doctors who offer it have been threatened with prosecution and license revocation by national organizations that disagree with their treatments.

    In February 2005, the California Assembly sought to protect such doctors by passing an act to amend Section 2234.1 of the Business and Professions Code, making it unlawful for professional organizations to discipline physicians who aggressively treat long-term cases of Lyme disease. The bill later became law.

    "We need more legislation like this in other parts of the country," said Stricker.

    For more information, visit the International Lyme and Associated Disease Society at www.ilads.org or the Centers for Disease Control and Prevention at www.cdc.gov.

    The Mountain View Lyme Support Group meets 6-8 p.m. the second Tuesday of each month in Room D, El Camino Hospital, 2500 Grant Road. The next meeting is scheduled July 11.
  • artur737 05.07.06, 17:34
    Elusive Bug
    Lyme disease wreaks havoc on its victims

    By Paul Swiech
    pswiech@pantagraph.com

    June 2006

    NORMAL -- Three years ago, Ann Spence was an energetic junior high school teacher, coach and runner whose goals included hiking in each of the 50 states.

    Now, Spence, 43, has lost 22 pounds, has been on medical leave since February, has given up her coaching duties, can't go to church, seldom goes out and can't walk further than around the block.

    The culprit is a tiny tick that bit her when she was hiking in Southern Illinois.

    Spence has Lyme disease, a debilitating and underreported disease that -- if untreated, undertreated or mistreated -- can cause permanent nerve, musculoskeletal and cardiac damage.

    Because Lyme symptoms are so varied, the disease often is misdiagnosed, said three McLean County Lyme patients. So there's no way to know how many people actually have the disease, they said.

    But Spence of Normal, Bill Sellberg Jr. of Normal, and Marilea White of LeRoy are fighting back. Their weapons are their stories and information they hope will prevent others from being bitten this summer and beyond, and will help people to know how to respond if they are bitten.

    "Like it or lump it, people need to know that there is Lyme disease in Central Illinois," White said.

    Ann Spence

    Spence, a science teacher in Unit 5's Chiddix Junior High School for 22 years, was scheduled to attend a reptile and amphibian conference for school teachers in Southern Illinois in April 2003. She decided to arrive a day early to hike in the Cache River Natural Area, a Cypress swamp.

    Spence was more worried about water moccasins than ticks. But she had on insect repellent, jeans rather than shorts, a T-shirt and hat. She thought she was protected.

    "It probably got under my cap and bit me on the head because I never saw anything and didn't feel anything," she said in her Normal home recently.

    Two weeks later, she had a high fever, an ear infection and felt achy. Her doctor put her on antibiotics.

    One day, she was doing sit-ups at home when everything began to spin. She was diagnosed with vertigo and was treated for that but still had ear pressure and felt off balance.

    A friend suggested Lyme disease but she began to feel better and resumed a daily walk. In January 2004, she fell down several times at work and had tingling down her left arm and leg. About that same time, she began experiencing myoclonus, a sudden spasm of muscles, several times a day. The spasms leave her fatigued. In August 2004, she had a blood test that resulted in a diagnosis of Lyme disease.


    The Pantagraph/STEVE SMEDLEY
    Spence sits in front of a Rife machine to illustrate a treatment she has used for 30 minutes once a week to kill bacteria using electromagnetic frequencies.

    "I actually was, like, 'Yes, we have a diagnosis, finally!'" she recalled.

    She was put on antibiotics and found a Lyme specialist, Dr. Susan Busse, in Hoffman Estates, a Chicago suburb, who confirmed the diagnosis and put Spence on an intravenous antibiotic. On her own, Spence also purchased a Rife machine, which she runs once a week for 30 minutes and which supposedly kills bacteria using electromagnetic frequencies.

    She felt better for awhile. But by February 2006, she was so fatigued and was having so many episodes of myoclonus that she needed to take medical leave from work. Other symptoms include pain in her left foot, imbalance and occasional ringing in her ears.

    "I can mow the lawn or run errands or clean house, but then I'm wiped out for the entire day. Before, I could do all of those things in a day."

    She can't go to a restaurant, a ballgame, even church because the noise sets off her myoclonus. Instead, she may go out with a friend to a bookstore and does Bible study on her own at a quiet coffee shop. When she goes out, the former runner has to use a walking stick to steady her gait.

    Spence takes antibiotics, anti-myoclonus medicine, vitamins and minerals. "I probably take 16 different types of medicines," she said.

    Because Busse has closed her practice, Spence will go to a Lyme specialist in Springfield, Mo., on Friday and he will determine whether she can return to work.

    "I don't like being off work. I want to get better. I want to teach."

    Lyme disease facts
    • Lyme disease is an infectious disease caused by microscopic bacteria carried by tiny ticks.

    • Lyme reports have increased dramatically since the disease was recognized in Lyme, Conn., in 1975.

    • Several species of deer ticks --which feed on a variety of mammals and birds -- may become infected with the bacterium, then pass it along to humans and other mammals when the ticks bite them as they pass through woodlands and brushy areas. While deer ticks are responsible for transmitting Lyme disease in the Midwest and northeastern United States, the western black-legged tick carries the disease in the West and the black-legged tick carries the disease in the southeast.
  • artur737 05.07.06, 17:34

    • Ticks, about the size of poppy seeds, may attach to any part of the body but often attach to hidden, hairy areas such as the groin, armpit and scalp. They infect the blood stream.

    • Reduce your risk of tick bites when hiking by wearing light-colored clothing, tucking pant legs into socks or boots, wearing a hat and long-sleeve shirt, spraying insect repellent containing DEET on clothes and exposed skin and staying on trails.

    • After hikes, remove clothing and wash and dry them at a high temperature. Check your body, your partner's body and your pet for ticks.

    • If you find a tick, remove it with tweezers by grasping the tick as close to the skin as possible and pulling it straight back. Save the tick in a sealed container and submit it to your local health department for testing. Wash your hands with soapy water and apply antiseptic to the bite site.

    • Early symptoms of Lyme include fatigue, fever, headache, and muscle and joint pain. In about half of Lyme cases, a "bulls-eye" skin rash appears.

    • Lyme disease is difficult to diagnose because symptoms may be mistaken for viral infections and joint pain may be mistaken for arthritis or multiple sclerosis. A blood test, the Western Blot test, may determine whether a person has Lyme.

    • Lyme disease is treated with antibiotics under physician supervision. The earlier a patient is treated, the sooner and more completely a patient may recover.

    • Patients who aren't treated quickly or adequately may experience long-term symptoms, including joint pain, nervous system abnormalities, sleep disturbance, problems with memory and concentration, muscle twitching and heart rhythm irregularities. Lyme can be fatal.

    Bill Sellberg Jr.

    Sellberg, 49, is a Bloomington-Normal native who has been a State Farm Insurance Cos. technical analyst for 21 years. He and his wife, Joan, have been active in the Illinois Paint Horse Association for years.

    They returned from a horse show in west central Indiana in August 2003 when Sellberg found a tick attached to his lower abdomen on the left side.

    "I've fished and hunted and like to be outdoors and knew it was a tick," he said.

    He went to an emergency room to have the tick removed, but the tick's head was left in Sellberg's abdomen and had to be cut out. The tick wasn't sent off to be tested and Sellberg wasn't put on an antibiotic.

    Three weeks later, he had joint pain in his knees and was put on an antibiotic. Through December 2003, he was on and off antibiotics and had on-again, off-again joint pain. In spring 2004, he had severe pain in the big toe of his right foot and was treated for gout.

    In July, he had severe pain all over and couldn't sleep through the night. Whenever he mentioned the tick bite to doctors, they said he didn't have Lyme disease. However, a blood test that September indicted he had Lyme.

    As did Spence, Sellberg went to Busse that October and she confirmed that he had Lyme. She started him on an oral antibiotic, then he began take antibiotics intravenously in November 2004.

    "I'm on my fifth PICC (peripherally inserted central catheter)," he said of the tube extending out of his left arm, through which he receives his medicine twice a day. He also takes oral antibiotics and other pills and gets weekly blood draws to monitor his kidney and liver function.

    "My recovery has been slow."

    By November 2005, he was able to return to work full time.

    "I still have joint pain in the neck, hands, knees and feet." He also experiences forgetfulness and has trouble with word retrieval.

    "It is very frustrating," he said. "I go into work and try to do the best job I can do. My management has been very supportive to help me work through this.

    "My good days are like most peoples' bad days. But I've tried to remain upbeat.

    "This is a very debilitating disease. At first, I thought I could return to normal life. Now I don't know if that's possible."

    Marilea White

    White, 64, a retired school social worker with Tri-County Special Education, has a long history with Lyme.

    In October 1985, she experienced an itch and pain that started on her back before the pain spread around her body, then settled in her hands and thumbs. After a week and a half, the pain went away and White attributed it to a weird virus.

    In summer 2003, she developed severe lung problems and was diagnosed with hypersensitivity pneumonitis. She was put on prednisone, then taken off it until she began to experience exhaustion and leg pain in January 2004. She remained on prednisone until April 2005.

    Her lungs were better but the earlier pain in her thumbs, back, knees and feet returned. She also experienced burning on the bottom of her feet and problems with memory, word retrieval and balance. Her chiropractor referred her to Busse, who confirmed she had the illness.

    White said she had been in Vermont, Wisconsin and Michigan in the mid-'80s and often camped, but she isn't sure where and when she got the tick bite.

    White is on her sixth antibiotic, takes vitamins and minerals, gets a massage every week, watches her diet and tries to exercise and remain upbeat and active. Her feet no longer burn and she feels the best she's felt since 2003. But her problems with word retrieval, short-term memory and fatigue remain.

    "I was a high-energy person ... but now I sleep eight to 10 hours a night and take naps," White said.

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  • artur737 06.07.06, 16:42
    07/05/2006

    Ticks carry more than Lyme disease
    Ti Badri
    From New Haven Register nhregister.com

    The first study of its kind in Southern Connecticut has revealed that ticks may carry up to half a dozen disease-causing micro-organisms, which could explain why some people with Lyme disease continue to suffer mysterious symptoms for decades despite long-term treatment.

    Researchers at the University of New Haven are also developing a new type of test to reveal these previously unrecognized organisms, which may complicate diagnosis and treatment of Lyme disease.


    The new test is designed to avoid the protracted nightmare that Julie Hunter, 20, has suffered since she contracted Lyme disease in 1999.

    Physicians quickly diagnosed the bacterium that causes Lyme disease, but missed a more elusive germ that the tick also injected into her bloodstream.

    "Present test results are unreliable and doctors stop as soon as the test comes out negative," said Hunter’s father, David Hunter of Southbury.

    He said that if the UNH test works, "It would greatly help the patient community. Julie had a co-infection that interfered with her Lyme disease treatment."

    Many people with lingering symptoms of Lyme disease may actually be infected with one or more previously unrecognized bacteria, viruses, parasites and protozoa, said Eva Sapi, assistant professor of molecular biology at UNH and senior author of the study, which is being prepared for publication.

    Doctors, infectious disease specialists and Lyme disease experts said the problems posed by stowaway pathogens are significant. However, some scientists said the new test could be impractical, expensive and prone to poor quality control.

    Current Lyme disease tests depend on antibodies produced by the patient in response to the invading spirochete. The test being developed by UNH’s molecular biology department is intended to work by identifying specific fragments of foreign DNA generated by the infectious organisms.

    The Lyme disease project will shed light on the types and frequencies of tick-borne microorganisms in southern Connecticut, Sapi said.

    Researchers hope the new test kits will provide a quick and reliable method of diagnosing tick-borne diseases, enabling doctors to better treat patients suspected of having Lyme disease.

    "Lyme patients will finally know what’s going on. They will finally have closure," Sapi said.

    Experts see the potential benefits of the new test, but question its practicality. The test is based on polymerase chain reaction, a standard method of "amplying," or making countless copies of a piece of DNA.

    "PCR is doable in ticks, but researchers have to keep track of emerging infections," said Stephen Wikel, professor of immunology at the University of Connecticut Health Center.

    "The test is feasible using real-time PCR", said Connecticut’s chief entomologist, Kirby Stafford III. Real-time PCR can detect specific DNA sequences as they happen in the reaction chamber, allowing researchers to keep track of quantities of reacting materials at every stage of the process.

    Other doctors aren’t so sure.

    "Individual tests using PCR are quite expensive and depend on quality control", said Dr. John Shanley, infectious diseases specialist at the UConn Health Center.

    Prior to the study carried out at UNH, there were no in-depth studies carried out in Southern Connecticut to determine what kind of microorganisms ticks have and what co-infections are present, Sapi said.

    These tick-transported pathogens include Bartonella, Mycoplasma and the virus that causes Colorado tick fever. Bartonella causes cat scratch disease, and Mycoplasma is a bacteria-like organism associated with respiratory illness.

    Researchers found that some ticks collected around Bridgeport and Hamden over the course of a year were infected with up to six different microorganisms.

    "We always believed only one bacteria was present in the ticks, now we know that there are co-infections," Sapi said.

    Multiple infections are very difficult to properly diagnose and treat, she said. Patients with multiple infections have significantly more complicated symptoms and poorer outcomes because different infections require different treatments, Sapi said.

    For example, antibiotics cannot be used if a patient is found to have a viral co-infection; anti-viral drugs must be used instead. If left untreated, the corkscrew-shaped Lyme disease spirochete can cause fever, arthritis, swollen lymph nodes, aches and pains, and sometimes, a bull’s-eye rash. However, not all patients will have all the associated symptoms.

    Whatever scientists can do to ameliorate the anguish of Lyme disease should be pursued, including new tests, said David Hunter.

    "I think it would be huge for the patient community because many people remain largely ignorant of the impact of the disease," he said.
  • artur737 28.07.06, 17:26
    Late Stage Lyme Disease: Arguments for an Individualized Approach
    Deborah A. Metzger, PhD, MD

    The purpose of this review is to provide arguments in favor of a more liberal approach to the treatment of late stage Lyme disease, specifically the use of intravenous antibiotics for extended periods of time.

    Lyme disease is a chronic, persisting, multi-systemic infection, which is caused by Borrelia burgdorferi spirochetes that are transmitted by common deer ticks (Ixodes). Like syphilis, which is another spirochetal infection, Lyme disease may affect several organ systems and proceed through several stages. It may also persist if it is not properly diagnosed and treated in the earliest stage. During the first stage, a pathognomonic bull's eye rash may develop that establishes the diagnosis. It is often accompanied by a flu-like illness. Unfortunately, in 20-50% of those infected with Borrelia, no rash develops, develops in an uncharacteristic form, or is not noticed1,2. Without appropriate antibiotic treatment, the disease becomes disseminated resulting in episodic or persistent neurologic, musculoskeletal, or cardiac symptoms. Several lines of evidence suggest the Lyme disease is very much underreported3 and that perhaps as many as 90% of those affected are not diagnosed.

    Ticks that carry the Lyme bacteria also carry co-infections such as Ehrlichia, Babesia, and Bartonella. Approximately 2/3 of patients with Lyme disease have at least one of these co-infections4 but patients are not routinely tested for them. Patients who have Lyme disease together with a co-infection may remain mysteriously ill and unresponsive to standard treatment. Thus, Lyme is a complex illness potentially consisting of multiple tick-derived co-infections. Most physicians agree that when treated very early in the course of the disease that most Lyme patients will get well. Also generally agreed is that Lyme disease patients who have gone undiagnosed and now suffer late stage disease may continue to experience debilitating symptoms following a month-long course of antibiotics. All agree that these symptoms-arthritic, neurologic, and mulisystemic-can last for months or years. The most controversial aspect of the treatment of late stage Lyme disease is the optimal antibiotic regimen.

    For the vast majority of bacterial infections, a defined course of antibiotics either eliminates the bacteria or decreases the number of bacteria so that the immune system can eradicate the survivors. Lyme disease is not a typical bacteria in that it shares some of the characteristics of more challenging bacterial infections such as mycobacteria and syphilis: it is difficult to routinely culture, has a slow growth rate, can remain dormant for lengthy periods5, can invade intracellular sites6,7,8,9, and may sequester in areas where antibiotic penetration is problematic such as the CNS, joint cartilage, and anterior chamber of the eye10. To make matters worse, there are no tests that reliably determine when Borrelia has been effectively eradicated. As clinicians, we are left to use our best medical judgment in individualizing care for our patients.
  • artur737 28.07.06, 17:27
    Oral antibiotics are preferred because of the ease of administration and low cost. Intravenous antibiotics are used for infections that are resistant to orally administered antibiotics, when inadequate blood levels are achieved by the oral route, or when penetration into privileged sites (i.e., the CNS) or poorly vascularized tissue (i.e., cartilage) is needed.

    Review of the medical literature to determine an evidenced based approach for the treatment of late Lyme disease reveals a paucity of data. The studies that are often quoted as supporting a particular evidenced-based approach to late Lyme disease are summarized in Appendix A.

    There are several themes that run through these diverse studies:

    1. Antibiotics are accepted as mandatory in active Lyme disease treatment. However, the ideal antibiotics, their dosage, route of administration and duration of therapy have not been established.
    2. Many patients remain well after a single course of oral, IM or IV antibiotics. However, many other patients with Lyme disease, initially improve while on antibiotics but relapse when antibiotic treatment is discontinued. There is often relief of symptoms when antibiotics are reinitiated, implying persistence of the bacterial infection.
    3. Many of the antibiotics used in the studies do not penetrate the CNS, such as doxycycline11. Thus, persistence of neuroborreliosis would be expected.
    4. The most effective treatments for late Lyme disease include at least 2 weeks of intravenous ceftriaxone or cefataxime. Retreatment protocols, for relapses and treatment failures, include significantly longer treatment courses, i.e., greater than 4 weeks.
    5. None of the studies included evaluation and treatment for the co-infections such as Rocky Mountain spotted fever, bartonella, babesiosis, or ehrlichia that are present in as many as 2/3 of patients. Thi may explain the poor response to treatment in some of the studies using 30 days of IV antibiotics.
    6. Persistence12 of symptomss or relapse is quite common13,14 implicating that duration of treatment and/or the type of antibiotic used is inadequate. Relapse and failure to respond to intensive antibiotic treatment has been attributed solely to an autoimmune reaction related to the presence of Borrelia15. However, there are studies documenting the persistence of Borrelia burgdorferi in antibiotic-treated patients16 and following up to 12 months of intravenous antibiotic therapy17,18,19. Appendix B summarizes the studies that demonstrate persistence of Borrelia burgdorferi after antibiotic treatment.
    7. Most of the studies involved highly selected patient populations. Lyme patients present with a broad spectrum of symptoms and response to antibiotics. Thus, the relevance of the conclusions of these studies to most patients with late Lyme disease is problematic.
    8. Many antibiotic regimens do not take into account that many antibiotics only kill actively dividing organisms. The fact that some cultures of Borrelia burgdorferi have taken up to 10 months to grow suggests that most treatment guidelines recommend a too short period of antibiotic treatment20
    9. Given the range of symptoms related to Lyme disease and the widely divergent response to antibiotic therapy, treatment needs to be individualized. This means that some patients may require much longer treatment with oral and/or intravenous antibiotics.
    10. There is not sufficient evidence from the studies published to date to develop treatment guidelines.

  • artur737 28.07.06, 17:28
    In spite of the paucity of data, two groups of physicians that treat Lyme disease independently developed peer-reviewed 'evidence-based' treatment guidelines using the same literature (Appendix A) to formulate their treatment guidelines. The Infectious Disease Society of America (IDSA) advocate a maximum of 30 days of oral or intravenous antibiotics and assume that the remaining symptoms reflect a self-perpetuating autoimmune response21. The International Lyme and Associated Diseases Society (ILADS), which is composed of physicians from a variety of specialties who primarily treat Lyme disease, assume that the persistent symptoms reflect on-going infection and gauge the duration of treatment by the patient's individual clinical response. These physicians believe that there is insufficient evidence at this point to adopt standardized treatment protocols22.

    While each viewpoint has a strong underlying hypothesis, the scientific evidence supporting either viewpoint is equivocal. Outcomes research is limited and conflicting. The NIAID has only funded three double-blind, placebo-controlled treatment outcome studies for long-term treatment of persistent Lyme disease. The findings of two studies (Klempner and Krupp-Appendix A) are contradictory, with one indicating that continued treatment is beneficial for treating fatigue and the other indicating that it is not. The third NIAID-funded study (Fallon-Appendix A) has recently been completed and preliminary results support continued antibiotic treatment for patients with persistent Lyme disease. The findings of nine non-controlled studies (Appendix A) support continued treatment. The existence of limited or conflicting controlled studies is not uncommon in the practice of medicine.

    When a variety of viable treatment options exist, therapy is decided by weighing the individual's risks and benefits. Use of antibiotics can be associated with side effects, allergic reactions, development of drug resistance and cost. The benefits of antibiotics are the relief from a severe multisystemic bacterial infection that is difficult to eradicate with short-term antibiotic treatment. Witholding adequate antibiotic treatment for late-stage Lyme disease (when it is known that Borrelia persist in many treated patients-see Appendix B) is analogous to the Tuskegee experiment performed by the Public Health Service23, which has been widely criticized for the failure to adequately treat African American men with late-stage syphilis, another spirochete disease.

    Insurance companies have adopted guidelines reflecting short-term treatment approaches, which are governed by cost-containment considerations. However, the legal standard of care for treating a condition is determined by the consensus of physicians who actually treat patients, not by treatment guidelines24. One survey found that 57% of responding physicians treat persistent Lyme disease for three months or more25. Fallon notes that for over 3400 patients screened for the Columbia University study of persistent Lyme disease, the mean duration of IV treatment was 2.3 months and the mean duration of oral antibiotic therapy was 7.5 months26. In another survey, "50% of the responders considered using antibiotics for a time greater than one year in a symptomatic seropositive Lyme disease patient. Almost that same number would extend therapy to 18 months if needed."27

    When more than one standard of care exists, the critical question becomes who decides the appropriate course of treatment for the patient. Under the medical ethical principle of autonomy, the treatment decision belongs to the patient. Hence, the American Medical Association requires that the physician disclose and discuss with the patient not only the risks and benefits of the proposed treatment, but also the risks and benefits of available alternatives28. Treatment choices involve trade-offs between the risks and benefits of treatment options that only patients, who know the kinds of risks they are willing to run and the types of quality of life outcomes that matter to them, are uniquely suited to make.

  • artur737 28.07.06, 17:28
    Insurance companies have placed the full weight of their economic clout behind the less expensive short-term treatment protocols. More expensive longer-term treatment options are discredited as "experimental" or "not evidence-based." The point, of course, is that the science underlying both the short-term and the longer-term treatment options is equally uncertain. It is estimated that only 20% of medicine practiced today is rooted in double-blind studies29 The bulk of medicine today is practiced in the grey zone. Evidence-based medicine requires only that medicine be practiced in accordance with the evidence that currently exists, not that treatment be withheld pending research. As for the cost considerations, healthcare costs generally are lower when the patient's preference is supported30.

    In an ideal world, decisions would be based on strong scientific evidence, consensus opinion, and the views of the treating physician. However, seldom are all three available. A recent symposium by the National Institute of Health Care Management Research and Educational Foundation found a general consensus that care should not be denied because evidence is limited, conflicting, or even non-existent. Rather, decisions should be based on the best information available. It has been noted that:

    Much, if not most, medical care, even that which is generally accepted in the medical community, would be denied under an evidence-based standard because so few health care services have been subject to rigorous research. At particular risk for denial of needed services are disabled persons because of the lack of treatments proven effective through clinical trials." (Independent Review of Managed Care Decisions by Honorable Mary C. Morgan. (Retired.)

    Most patients who require prolonged intravenous antibiotics are denied coverage and subsequently undergo an independent medical review as part of the appeal process. First, it is imperative that those responsible for performing independent medical reviews be made aware of the fact that there are two recognized treatment approaches and that both sets of treatment guidelines be used as part of the review process. Second, the reviewers need to consider all of the data that illustrate the variability of treatment approaches physicians treating persistent Lyme Disease use (see Appendix A for the references). Third, the view of the treating physician needs to be given more weight, given that treatment outcomes research to date illustrate that the population being studied is enormously heterogeneous. In these situations, the clinical course of the individual patient is more a predictor of response to treatment than heterogeneous group studies. Fourth, the variation in treatment practices that currently exists should be resolved by promoting more outcomes research to help resolve the scientific uncertainty and patient's preference should be supported.

    There are a number of ways that medical necessity may be determined: on facts and evidence, on a consensus of medical opinion, or on the judgment of individual physicians. Where outcomes research is limited or equivocal, decisions should be based on the best information available - which in the case of heterogeneous populations may well be the unique clinical course of the individual patient.
  • artur737 28.07.06, 17:29
    Appendix A

    Summary of Clinical Studies for Treatment of Late Stage Lyme Disease Randomized placebo-controlled Studies

    Steere, 198531 - 40 patients with established Lyme arthritis were randomized to receive weekly IM injections of benzathine penicillin or placebo. 35% of the treated patients had complete resolution of their symptoms and remained symptom-free during a mean follow-up period of 33 months. None of the placebo treated patients improved. As compared with nonresponders, penicillin responsive patients were more likely to have received antibiotics for early Lyme disease and less likely to have received intra-articular steroids.

    Klempner, 200132; Kaplan 200333 - 78 seropositive (by Western Blot) and 51 seronegative patients with post-treatment Lyme disease were randomized to receive 30 days IV ceftriaxone followed by oral doxycycline 100mg bid or placebo for 60 days. Patients underwent standardized testing at baseline, 90 and 180 days. There were normal baseline neuropsychological scores in all patients. There were no significant differences between seropositive and seronegative patients in outcomes, nor were there significant differences between treated and untreated patients. Of note is the fact that 64% of patients had persistent symptoms after standard treatment for the disease. Thus, the validity of this study has been questioned.

    Krupp, 200334 - Double blind placebo controlled trial on 55 patients with continued fatigue 6 or more months after antibiotic treatment (3 weeks oral Abs or IV ceftriaxone) for Lyme disease. Patients were randomized to receive placebo or 4 weeks of IV ceftriaxone. Outcome measures were fatigue, cognitive speed, and clearance of OspA antigen from the CSF. 64% of patients given antibiotics were improved compared with 18.5% given placebo. Further, for patients with positive western blots at baseline, the responder rate was 80% vs 13%. For seronegative patients, the responder rate was 46% vs 27%. Patients receiving antibiotics also had significantly lower pain scores than those receiving placebo. There were no differences between groups in results of neurocognitive tests. The authors concluded that repeated antibiotic therapy had a substantial positive effect on late Lyme disease outcome.

    Fallon, 200435 - completed a trial of 10 weeks of IV antibiotic therapy in patients with late Lyme disease symptoms who had previously been treated with at least 3 weeks of IV antibiotics and then relapsed. There was significant improvement in cognition and other symptoms. This study was part of a $4.7 million NIH funded study. The manuscript is in preparation. Randomized Trials

    Dattwyler, 198836 - 23 patients with clinically active late Lyme disease were randomly assigned to IV treatment with either penicillin or ceftriaxone. Of the 10 treated with penicillin, 5 were judged treatment failures; of the 13 who received ceftriaxone, only 1 patient did not respond. An additional 31 patients were subsequently treated with ceftriaxone with similar results. Patients that were unresponsive to ceftriaxone were more likely to have received corticosteroid treatment.

  • artur737 28.07.06, 17:29
    Pfister, 198937 -21 patients with radiculitis or neuroborreliosis associated with Lyme disease were randomized to receive a 10 day treatment with either IV penicillin G or cefataxime. There were no differences in the outcomes of the two groups. See Pfister, 1991 below.

    Hassler, 199038 -135 patients with late-stage Lyme disease were randomized to receive IV penicillin G or IV cefotaxmine for 10 days. Cefotaxamine was significantly more effective than penicillin G with 87.9% vs 61.3% reporting full or partial remission of symptoms 24 months later.

    Pfister, 199139 -33 patients with Lyme neuroborreliosis were randomized to receive a 10 day course of either IV ceftriaxone or Cefotaxime. Neurologic symptoms improved or subsided in 26/30 patients-there was no difference in treatment groups. At a mean follow-up of 8 months, 17/27 patients were clinically asymptomatic. Bb was isolated from the CSF of one patient 7 months after ceftriaxone therapy. Since 10 patients remained symptomatic, the authors concluded that a prolongation of therapy might be necessary.

    Steere, 199440 -38 patients with Lyme arthritis were randomly assigned to 30 days of treatment with either doxycycline or amoxicillin plus probenecid. Patients who had persistent arthritis 3 months following treatment were given IV ceftriaxone for 2 weeks. 16/18 of the patients treated with amoxicillin and 18/20 treated with doxycycline had resolution of arthritis symptoms within 3 months of treatment. However, neuroborreliosis later developed in 5 patients. Of 16 patients with persistent arthritis who were treated with IV ceftriaxone, none had resolution of arthritis within 3 months. The authors concluded that even with resolution of specific manifestations of Lyme disease with oral antibiotics, there is still a risk of developing additional symptoms of Lyme at a later time. Persistent arthritis may be related to an autoimmune phenomenon (although they did not rule out persistent infection with PCR or culture). Others concluded that 2 weeks of IV ceftriaxone may be insufficient to address Lyme arthritis.

    Wahlberg, 199441 -100 consecutive late-Lyme disease patients were treated with different antibiotic regimens and followed up for 12 months after treatment. Treatment outcome was successful in 4/13 patients treated with IV ceftriaxone for 14 days, 50/56 patients treated with ceftriaxone followed by 100 days of amoxicillin with probenecid, and 19/23 of those treated with IV ceftriaxone for 14 days followed by 100 days of cephadroxil.

  • artur737 28.07.06, 17:30
    Okski, 199842 -randomized 60 patients with disseminated Lyme borreliosis based on CDC diagnostic criteria to receive either cefexime and probenecid orally for 100 days or ceftriaxone IV for 14 days followed by oral amoxicillin and probenecid for 100 days. The immediate outcome after antibiotics was not different between the two treatment groups. However, after a year of follow-up, there were significantly greater relapses, treatment failures, and positive PCR tests. The results of this study support the use of intravenous antibiotics along with prolonged antibiotic therapy in patients with late-stage Lyme disease.

    Fallon, 199943 -studied 23 Lyme patients who complained of persistent memory difficulties after IV antibiotic therapy of 4-16 weeks. Four months after their initial treatment, 18 of the patients received additional IV antibiotics and compared with the others who did not receive additional antibiotics. Those receiving additional IV antibiotics scored better on cognition tests, greatest functional improvement in energy, pain, and physical functioning than untreated patients. Based on the results from this pilot study, the authors concluded that there was enough evidence to plan a larger study investigating the utility of repeated courses of IV antibiotics (see Fallon, 2004).

    Logigian, 199944 -a series of 18 consecutive patients with Lyme encephalopathy and symptoms of memory difficulty, minor depression, somnolence, or headache were treated with 30 days of IV ceftriaxone. At the beginning of treatment, 89% had abnormal memory scores, 89% had CSF abnormalities and all tested had perfusion defects on SPECT scan. Six months after treatment, memory scores were significantly improved, CSF protein levels were significantly less, and post-treatment perfusion was significantly improved. 12-24 months after treatment, all patients rated themselves as improved or back to normal.

    Observational studies

    Hassler, 199145 -reported on two patients with antibiotic resistant Lyme disease that were treated with pulsed high-dose cefataxime with 2 days of treatment followed by 6 days without antibiotics over a ten-week period of time. One patient was symptom-free 6 months after antibiotic treatment, the other was improved and skin biopsies showed no evidence of Borrelia.

    Cimmino, 199246 -reported 2 cases of chronic Lyme arthritis, refractory to standard antibiotic treatment, who were treated with Valesov, 199647 -reported on the outcome of a 36-month follow-up of patients with late stage Lyme arthritis after 2 weeks of ceftriaxone therapy. At 36 months 19/26 continued to be symptom-free, 6 had relapsed and 1 presented with new late-Lyme symptoms.

    Donta, 199748 -277 patients with chronic Lyme disease and symptoms of fatigue, musculoskeletal pain, neuropsychiatric dysfunction, and paresthesias were treated with tetracycline for 1-11 months (mean 4 months). Overall 20% of the patients were cured,
  • artur737 28.07.06, 17:30
    70% significantly improved (degree of improvement 75-100%), and 10% did not improve. Improvement frequently did not take place for several weeks: after 2 months of treatment, 33% were significantly improved, after 3 months 61% were significantly improved. Improvement showed as early as one to two weeks after the start of treatment; however, in patients who were symptomatic for more than a year, it frequently took 4-6 weeks on the antibiotic for evidence of improvement. This slow rate of improvement was postulated to be due to the slow rates of multiplication and metabolism in Borrelia. This study underscores the necessity of an individualized approach to the treatment of late-stage Lyme disease.

    Okski, 199949 -13 patients who had clinical relapses and were PCR positive after at least 3 months of oral antibiotics were treated with IV ceftriaxone for 4-6 weeks. None of the patients were PCR positive after treatment and 9 showed good therapeutic responses. The authors concluded that treating late Lyme disease with appropriate antibiotics for more than 3 months may not always eliminate Borrelia and that longer courses may be necessary.

    Donta, 200350 -235 patients with chronic Lyme disease symptoms of fatigue, musculoskeletal pain, and neurocognitive dysfunction with positive serology for Borrelia were treated with macrolide antibiotics and hydroxychloroquine for one or more months based on their level of improvement during the course of treatment. 120 patients who were improved at the discontinuation of therapy had relapsing symptoms and were retreated with antibiotics. Of those retreated with macrolide/hydroxychloroquine, 32/33 had improvement, tetracycline 54/74 had improvement, IV ceftriaxone 9/23 had improvement. Thus, tetracycline and IV ceftriaxone had a much lower success rate than macrolide/hydroxychloroquine therapy.

  • artur737 28.07.06, 17:31
    Reviews

    Cimmino, 199651 -reviewed the results of antibiotic treatment of Lyme arthritis in peer-reviewed journals between 1985 and 1991. The studies were small or medium-sized and not blinded. The antibiotics included Benzathine penicillin, IV penicillin G, IV ceftriaxone, IV Cefotaxime, oral doxycycline or oral amoxicillin plus Probenecid. The authors concluded that "There is no consensus on the therapeutic protocol to be adopted in Lyme arthritis. Many questions are still open about the antibiotic agents to adopt as well as the best duration of treatment."

    1. Jacobs, RA. Infectious Diseases: Spirochetal. Current Medical Diagnosis and Treatment (Lange Medical Books/McGraw-Hill, NY, 39th edition, 2000
    2. Donta ST. Tetracycline therapy for chronic Lyme disease. Clin Infect Dis 1997; Suppl 1smirk52-S56
    3. United States of America Department of Health and Hyman Services Food and Drug Administration Center for Biologics Evaluation and Research Vaccines and
    Related Biological products Advisory Committee Meeting, May 26, 1998
    4. Benach JL, Coleman JL, Habicht GS: Serologic evidence for simultaneous occurrences of Lyme disease and babesiosis. J Infect Dis 144:473-477, 1981
    5. Preac-Mursic V, et al. Formation and Cultivation of Borrelia burgdorferi Spheroblast-L Form Variants. Infection 24(1996);3.
    6. Klempner et al. Invasion of Human Skin Fibroblasts by the Lyme Disease Spirochete, Borrelia burgdorferi. J Infect Diseases 1993;67:1074-81.
    7. Ma et al. Intracellular localization of Borrelia burgdorferi within human endothelial cells. Infect Immun 1991;59:671-78.
    8. Duray PH, Johnson RC. The histopathology of experimentally infected hamsters with the Lyme disease spirochete, Borrelia burgdorferi. Proc Soc Exp Biol Med. 1986: 263-269.
    9. Georgilis et al. Fibroblasts Protect the Lyme Spirochete, Borrelia burgdorferi, from Ceftriaxone in vitro. J. Infec. Dis. 1992:166:440-4.
    10. Jaruratanasirkul et al. Distribution of Azithromycin into brain tissue, cerebrospinal fluid, and aqueous humor of the eye. Anti Agents Chemo 40:825-26, 1996
    11. Chopra et al. Tetracycline antibiotics: mode of action, applications, molecular biology, and epidemiology of bacterial resistance. Microbiol Mol Biol Rev 65: 232-60, 2001
    12. Klempner et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med 345:85-92, 2001
    13. Asch et al. Lyme disease: An infectious and postinfectious syndrome. J Rheum 21:454-60, 1994
    14. Valesov et al. Long-term results in patients with Lyme arthritis following treatment with ceftriaxone. Infec 24:98-102, 1996
    15. Steere et al. Treatment of Lyme arthritis. Arth Rheum 37:878-88, 1994
    16. Schmidli et al. Cultivation of Borrelia burgdorferi from joint fluid three months after treatment of facial palsy due to Lyme borreliosis. J Infect Dis 1988;158:905-6.
    17. Haupl, et al. Persistence of B. burgdorferi in Ligamentous Tissue from a Patient with Chronic Lyme Borreliosis. Arthritis Rheum 1993; 36:1621-6.
    18. Pfister et al. Randomized comparison of ceftriaxone and cefotaxime in Lyme neuroborreliosis. J Infect Dis. 1991; 163(2): 311-318.
    19. Hassler et al. Pulsed High Dose Cefotaxime Therapy in Refractory Lyme Borreliosis (Letter) Lancet; 338:193.
    20. MacDonald et al. Clinical implications of delayed growth of the Lyme borreliosis spirochete, Borrelia burgdorferi. Acta Tropica 1991;48:89-94.
    21. Wormser, et al., Practice guidelines for the treatment of Lyme disease. The Infectious Diseases Society of America. Clin Infect Dis, 2000. 31 Suppl 1: p. 1-14.
    22. The International Lyme and Associated Diseases Society (ILADS), Evidence-based guidelines for the management of Lyme disease. Expert Rev Anti-infect Ther, 2004. 2(Suppl): p. S1-S13.
    23. Jones, JH. Bad Blood: The Tuskegee Syphilis Experiment, , expanded edition (New York: Free Press, 1993).
    24. Hurwitz, B., Clinical guidelines and the law. BMJ, 1995. 311: p. 1517-1518
    25. Ziska, et al. Physician preferences in the diagnosis and treatment of Lyme disease in the United States. Infection, 1996. 24(2): p. 182-6.
    26. Fallon, B.A., Testimony at public hearings in re Lyme disease for the State of Connecticut Department of Public Health. 2004: p. 134-153.
    27. Katzel, J., Is there a consensus in treatment of Lyme Borreliosis?, in Lyme Disease 1991 Patient/Physician Perspectives from the U.S. & Canada, L. Mermin, Editor. 1992.
    28. American Medical Association, Code of Medical Ethics.
    29. Hitt, J., The year in ideas: a to z.; evidence-based medicine., in New York Times (December 9, 2001, Sunday).
  • artur737 28.07.06, 17:31
    30. Wennberg, et al. Geography and the debate over Medicare reform. Health Aff (Millwood), 2002. Supp Web Exclusives: p. W96-114.
    31. Steere et al. Successful parenteral penicillin therapy of established Lyme arthritis. N Engl J Med 312:869-74, 1985
    32. Klempner et al, Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med 345:85-92, 2001
    33. Kaplan et al, Cognitive function in post-treatment Lyme disease: Do additional antibiotics help? Neurology 60:1916-1922, 2003
    34. Krupp et al. Study and treatment of post Lyme disease. A randomized double masked clinical trial. Neurology 60:
    35. In preparation.
    36. Dattwyler et al. Treatment of late Lyme borreliosis-randomized comparison of ceftriaxone and penicillin. Lancet, May 28: 1191-4, 1988
    37. Pfister et al. Cefotaxime vs penicillin F for acute neurologic manifestations in Lyme borreliosis. A prospective randomized study. Arch Neurol 46:1190-4, 1989
    38. Hassler et al. Cefotaxime versus penicillin in the late stage of Lyme disease-prospective, randomized therapeutic trial. Infection 18:16-20, 1990
    39. Pfister et al. Randomized comparison of ceftriaxone and cefotaxime in Lyme neuroborreliosis. J Infect Dis 163:311-18, 1991
    40. Steere et al. Treatment of Lyme arthritis. Arthritis Rheum 37:878-88, 1994
    41. Wahlberg et al. Treatment of late Lyme borreliosis. J Infec 29:255-61, 1994
    42. Oski, et al. Comparison of oral cefixime and intravenous ceftriaxone followed by oral amoxicillin in disseminated Lyme borreliosis. Eur J Clin Microbiol Infec Dis 17:715-19, 1998.
    43. Fallon et al. Repeated antibiotic treatment in chronic Lyme disease. J Spirochetal Tick Dis 6:94-101, 1999
    44. Logigian et al. Successful treatment of Lyme encephalopathy with intravenous ceftriaxone. J Infec Dis 180:377-83, 1999
    45. Hassler et al. Pulsed high-dose cefotaxime therapy in refractory Lyme borreliosis. The Lancet 338:1991
    46. Cimmino et al. Long-term treatment of chronic Lyme arthritis with Benzathine penicillin. Ann Rheum Dis 51:1007-8, 1992
    47. Valesov et al. Long-term results in patients with Lyme arthritis following treatment with ceftriaxone. Infection 24:98-102, 1996
    48. Donta ST. Tetracycline therapy for chronic Lyme disease. Clin Infect Dis 1997; Suppl 1smirk52-S56
    49. Oksi et al. Borrelia burgdorferi detected by culture and PCR in clinical relapse of disseminated Lyme borreliosis. Annals of Medicine 31: 225-32, 1999b
    50. Donta ST. Macrolide therapy of chronic Lyme disease. Med Sci Monit 9:136-142, 2003
    51. Cimmino et al. Treatment of Lyme arthritis. Infection 1:91-94, 1996

    Posted with written permission:

    Deborah A. Metzger, PhD, MD
    Harmony Women's Health
    851 Fremont Ave., Suite 104
    Los Altos, CA 94024
    650-229-1010
  • artur737 28.07.06, 17:44
    Malo bylo dotad wiesci z Wlk Brytanii. O ile wiem, Wlk Brytania nawet nie ma swojego internetowego forum typu Lymenet.
    Pacjentka z borelioza glodowala by zwrocic na siebie uwage i uzyskac leczenie. Udalo sie. W rezultacie swojej determinacji w Wlk Brytani znalazl sie doktor chetny do leczenia metoda ILADS. Pacjentka jest leczona do tej pory.

    HUNGER STRIKE
    BY SHIRLEY ELSBY

    10:52 - 17 February 2005 see also 2006 Update
    A woman has gone on hunger strike in protest over the lack of medical treatment for a disease which has made her blind and crippled.

    Christine Jennings, 43, started refusing food on Monday and for three days has been on fluids only.

    The mother-of-four, of Strathmore Road, Hinckley, says she has taken the desperate step to highlight her 10-year battle for treatment.

    Christine believes she contracted the rare condition Lyme disease when she was bitten by a tick on a day out in Bradgate Park 10 years ago.

    She says the doctors and hospitals which have treated her have been unwilling to acknowledge she has the disease.

    Now, after years of deterioration and with excruciating pain in her eyes, she has mounted the hunger strike to draw attention to her case.

    Miss Jennings, a former interior designer, is on a regime of medication which includes steroids and strong painkillers, but says she needs different treatment.

    "This has taken me 10 years," she said.

    "I have had to go blind. I have had to fight every step of the way."

    "I am still fighting to be acknowledged and to get the right treatment."

    She said she had been told by American specialists that she had the disease and should be treated with long-term intravenous antibiotics.

    Yesterday, on day three of her hunger strike, she received a visit from her GP with a letter of referral to her hospital of choice, University Hospital Middlesbrough, which specialises in diagnosing diseases which are difficult to detect. She said she would stop the hunger strike when she was sure she had an appointment.

    Her daughter, Rebecca Sabin, (22) said: "There is no cure now but it could suppress this disease and prolong what she has got left.

    "To help the pain is the biggest thing."

    Miss Jennings has already won support from her ward borough councillor, David Thorpe.

    He said: "First of all, I want to make sure Christine gets the treatment she needs, then I want the PCT to recognise that it is an issue and there are people out there who are suffering, who are losing their mobility, going blind, and even dying, because they are not being diagnosed and treated for this condition."

    He said he wanted the medical profession to become widely aware of Lyme disease and to put diagnostic testing for it in place if there was the least chance that it was what a patient had.

    Hinckley and Bosworth Primary Care Trust said it could not discuss individual patients because of confidentiality practice, although it is understood it held an emergency meeting about Miss Jennings' case yesterday.

    Heather Norgrove, director of strategy and commission, said: "The PCT has a duty to ensure each patient has access to a high standard of health care. The PCT aims to support any clinically appropriate NHS treatment recommended by referral from a GP or hospital consultant."...see follow-up below !!
  • artur737 28.07.06, 17:45

    Follow-Up...She Stops Hunger Strike !!
    MUM ENDS HUNGER STRIKE AFTER TREATMENT PLEDGE

    BY DAVID OWEN 10:30 - 26 February 2005

    A mother who was 12 days into a hunger strike over a row with health bosses has ended her protest.

    Christine Jennings, 43, who took the action after she claimed doctors refused to recognise that she has Lyme disease has now been given an appointment with a specialist.

    The news brings to an end a dramatic protest by the mother of four whose health was worsening by the day because her protest meant she could no longer take the medication.

    She began the hunger strike because she claims doctors would not recognise her illness, which she says was caused by a tick bite in Bradgate park 10 years ago.

    The problem has left her blind, needing a wheelchair and reliant on daily steroids and strong painkillers.

    Supported by her eldest daughter Rebecca, Miss Jennings refused to give up her hunger strike until she had proof of an appointment with an eye-specialist at the James Cooke University Hospital, in Middlesbrough.

    Her battle was won yesterday morning when a letter arrived at her home in Strathmore Road, Hinckley, telling her she will see the consultant on Thursday.

    Since her story was publicised by the Leicester Mercury last week, she has been inundated with messages of support from around the world.

    An American doctor specialising in Lyme disease has now volunteered to liaise with the James Cooke Hospital over her diagnosis and treatment. A European specialist has also offered to give her a second opinion.

    Rebecca, who will drive her mother to Cleveland for the appointment, said: "My mum had some soup and a custard slice at lunchtime which she said has never tasted better."

    Recovering at home, an emotional Christine said: "After 12 days without food it did taste quite good.

    "I am happy but worried at the same time.

    "I don't want it to be just another referral. I just hope I have the right tests so they can finally treat my condition.

    "With the response we have received, more people are now aware of the disease. I just hope its not another dead-end.

    "I wouldn't recommend the action I've taken to anybody, but I want people to know it is how desperate I felt. I am blind and immobile and it was the only thing I could do to get people to listen. I've just been messed around so much.

    She said: "I would like to thank everybody who helped and supported me, especially all those people who share my condition."
  • artur737 28.07.06, 17:45

    Thank you for saving my life
    27 July 2005 From Sunderland Today

    A BLIND and disabled mum today said an emotional thank-you to a Sunderland doctor for saving her life after an 11-year fight for treatment. Christine Jennings, 43, went on a two-week hunger strike after claiming she could not get proper medical care for life-threatening Lyme Disease, which she caught after being bitten by a tick during a country walk.

    The mum-of-four, from Hinckley, Leicestershire, was moved to tears when Professor Terry Daymond, of Sunderland Royal Hospital, stepped in to end her long battle for her treatment by offering his help.

    The mum-of-four, who is wheelchair bound, had an operation yesterday after travelling up to Sunderland with her daughter, Rebecca Sabin. Mrs Jennings said:"If it wasn't for Sunderland Royal Hospital and Professor Daymond, I would have no future.

    "I've been fighting for 11-and-a-half years for somebody to help me and had virtually given up, but he has given me hope.

    "I'm overwhelmed. I'm so relieved to have started my treatment. I feel like it is the first day of the rest of my life."

    She added: "Professor Daymond has been amazing. He's done everything he can. I can't talk to him without crying. I know he's had to fight my corner to get me here.

    "The staff have been wonderful. Everybody is so friendly. I've never been in a hospital like it, with the care and time they've got for everybody. I've been really touched by it."

    Consultant rheumatologist Professor Daymond is believed to be one of the few doctors in the country who treats Lyme Disease, which is thought to affect about 300 people a year in this country.

    Mrs Jennings has been blinded by rare eye diseases caused by her condition and it has left her wheelchair-bound, affecting her joints, organs and central nervous system.

    Today, Mrs Jennings is having a tube, known as a Hickman line, put in her chest through which antibiotics and other treatments will be fed. Daughter Rebecca, 22, has been her mum's full-time carer for the past 11 years and has travelled up to Sunderland with her. She said: "I'm so grateful they've saved my mum. We want to say thank-you from the bottom of our hearts. Without treatment she would be dead. "If it wasn't for Professor Daymond and the people at the hospital she wouldn't have any hope at all "I'm so amazed by how nice everybody is. I can't thank the nurses, doctors and Professor Daymond enough.

    "We've been in tears, not because we're upset but because of how good they are. I want the chief executive to know how much it means to us being in Sunderland."

    Former interior designer and artist Mrs Jennings, who is also mum to Sebastian, 20, Jemma, 18, and 13-year-old Kelsey, will make regular visits to Sunderland over several years for treatment.
  • artur737 28.07.06, 17:46
    A 2006 update on Christine Jennings as written by her 15 year old daughter Kelsey
    Following my mums hunger strike in February last year, through the efforts of other Lymes sufferers and not our NHS my mum was put in contact with professor Daymond of the Sunderland royal hospital, he is known to be one of only few doctors who treat Lymes in this country. He got mum into his hospital in July last year and she started I.V treatment through a Hickman line and remains to be treated with this twice a day to the present date.

    She has suffered a few set backs with problems with the Hickman line and her H.B. professor Daymond care and understanding of my mothers suffering leaves her deeply indebted to him.

    However she has made very little progress in getting the same understanding for her accumulated eye problems from any one in the field of eyes. The main problem with my mothers eyes is the severity of the eye pain and total intolerance to light. Although the A.M.P.P.E and uveitis and choroiretinitis are at present stable she has also very matured sub capsular cataracts.

    Following writing a letter to a Dr Sxxxx in America who we heard of and sent photos of mums eyes to for advice he suggested mum have an M.R.I and could see from the scans pressure in the brain was involved.

    Clearly this is something our English doctors could have seen, but with their willingness to dismiss my mum it was more a case they didn't want to see it!

    On march the 3rd this year professor Daymond did an M.R.I scan as still no one in the eye field would. Mum had had an M.R.I in January 2001 witch showed slight changes but mum was told it was normal, this brain scan in march this year showed she had inflammation of the white matter, 6 lesions, (4 on the right and 2 on the left of the brain), pressure on the brain, inflammation of the blood vessels and part of the lining of the brain has disintegrated; all of this professor Daymond has no doubt it is a result of the Lyme.

    My mum has been registered blind and we are waiting for professor Daymond to find a lyme literate neurologist here in the U.K.. Until my mum sees the neurologist she worries what this now means, it all came as quite a shock. Even more worry because professor Daymond is retiring in February 2007 and we need to get some one to take over her care. We have no doubt professor Daymond will not just leave my mum, he is a really good doctor who cares.

    My mum is to take the NHS to court to make some one responsible for the years of intolerance and attitudes she has had to fight. It is very much a test case in this country and we hope it will help to raise awareness of what Lymes sufferers are subject to. My mum is dedicated to then take the issue of Lymes and the lack of duty of care by the healt protection and public health in this country, to acknowledge Lymes' existence when they are aware of the problem it is, to the court of human rights.

    In the U.K the health protection says it would cause panic for people to be aware of the real facts of the extent of the problem of ticks carrying the Lyme bacteria.

    My mother strongly believes awareness and more knowledge known publicly about Lyme will help people protect themselves and educate them about all of the problems we are up against. My mums suffering is only made more bearable by a long list of pain killers including morphine. My mums and my greatest respects go out to the doctors in America who communicate with my mum and keep her strong and have shown so much compassion. One doctor in South Carolina, a Dr William Mxxxx who isn't even a Lyme doctor is most definitely one of earth's angels.

    When I tell my mum of some of the stories I find on the internet about the problems people face and suffer not just in the U.K but every where including Canada she said she knows she cant change the world but every voice will help add to other voices and hopefully one day things will get a bit better in the medical world for people with Lyme and those fighting this for the same reason. Only then will she feel her suffering will have not been in vein and our hearts go out as a family who whiteness this ordeal to all those in this situation.

    I know my mum is strong but I also know she cries alot too because she worries about what is in the future and she worries about us (her children). We are waiting for a time when hopefuly through this court case we can raise more awareness here and help raise some funds.

    It is very nice to be able to update you and to help keep my mum strong.

    I am doing this and promise to read any messages I receive. It makes me angry and sad but also very glad that there are people like you (at Canlyme) helping others in this same way. My greatest respect to you. I will happily keep in touch with you and keep you updated. We have just been taking part in a documentary that will be on TV early next year about many people in the U.K with Lymes so I will let you know about that when we have more details and an update on this will be in our local Leicester Mercury some time this week.
  • artur737 28.07.06, 17:49
    Lyme disease and the limits of medicine

    From "The News and Observer"
    www.newsobserver.com/559/story/454527.html
    Published: Jun 26, 2006 12:30 AM
    Modified: Jun 26, 2006 09:04 AM

    Marcia E. Herman-Giddens

    PITTSBORO - The art and science of medicine are not always straightforward, as indicated by the N.C. Medical Board hearing on Dr. Joseph Jemsek this month. The Medical Board charged the Mecklenburg County physician with improperly diagnosing tick-borne infections and violating medical standards by treating patients with prolonged doses of intravenous antibiotics. The board suspended Jemsek's license. [added by Canlyme...The suspension was lifted and instead he will be monitored for 1 year]

    The hearing, which I observed, was useful in a number of ways. First, it is important for patients and the medical profession to understand that the diagnosis and treatment of tick-borne diseases, including Lyme disease, is not always easy. Tests for Lyme disease perform poorly. A 2005 study from Johns Hopkins found "no single test, including culture from plasma or skin, achieves a high rate of diagnostic sensitivity." The researchers went on to combine various tests to see how much that could improve accuracy. Even then, the combination for a "relatively rapid alternative" still missed 25 percent of acute cases.

    Second, the diagnosis of all tick-borne infections must be clinical, especially in the acute phase when delay can lead to death or permanent impairment. Even though the CDC stresses this for tick-borne infections, including Lyme disease, medical providers can forget it, to the detriment of their patients. Laboratory tests are supportive but cannot be relied upon for diagnosis. Co-infections such as babesiosis and bartonella are common, and tests for them perform poorly as well.

    Third, many people with acute Lyme disease either do not develop the classic rash, erythema migrans, or do not notice it. The term "bull's eye" is a misnomer since many of the rashes are solid red. Persons with tick exposure and symptoms suggestive of Lyme disease and no history of a rash cannot be assumed not to have Lyme disease.

    Fourth, because treatment of Lyme disease is controversial and two standards of care exist, patients should sign a detailed informed consent form. One standard is from the Infectious Disease Society of America, the other from the International Lyme and Associated Diseases Society. All physicians who treat Lyme disease, regardless of their approach, should present the two standards of care to patients so they can be fully informed.

    Fifth, late-stage Lyme disease, like its cousin syphilis, cannot always be treated successfully, because the disease is too entrenched, because necessary drugs have not yet been discovered or because not enough is known about treatment. These patients may become disgruntled. Unhappy and even harmed patients occur in many areas of medicine, even when physicians are doing their best. This is tragic and needs to be recognized by patients and be part of the informed consent process.

    Sixth, we learned that tick-borne infections, including Lyme disease, are a considerable problem in this state. The public health system needs to do more.

    Lyme disease in particular is controversial, in part due to the lack of reliable tests not only for diagnosis but to tell if the patient has been cured. Initial signs of infection often go away for a while, just as with syphilis, and then return in the often debilitating form of chronic Lyme disease. Both are caused by a spirochete, a corkscrew-shaped bacteria that screws its way into muscles, organs, connective tissues and the nervous system. It can cause damage over a lifetime that usually involves the brain if not promptly treated.

    Controversy surrounded the manifestations and treatment of syphilis in the early days. As with that disease 80 or so years ago and HIV/AIDS 30 years ago, I believe we are in the early days of recognizing the full extent of the harm caused by the Lyme disease spirochete, Borrelia burgdorferi, or of knowing how to diagnose and treat it.

    Meanwhile, doctors like Jemsek do what they can to help desperately ill patients who have been misdiagnosed or abandoned. Other doctors disagree with his diagnoses and treatments and may tell these patients, often in great pain and with migrating debilitating symptoms, that they have conditions such as auto-immune disorders, fibromyalgia or mental illness. No doubt this is true for some. Or, as one of the state's witnesses said, their doctors may tell them that they can't do anything for them. Those with likely tick-borne infections need treatment nonetheless.

    Time will tell which approach is correct and does the greatest good for the affected people. Perhaps a new approach is needed. In the meantime, the public, and medical professionals especially, need to keep an open mind and recognize that we are in the early stages of understanding Lyme disease, co-infections and other emerging tick-borne infections.

    (Marcia E. Herman-Giddens holds a doctoral degree in pharmacy. She is an adjunct professor at the UNC School of Public Health and president of the Tick-borne Infections Council of N.C.)

  • artur737 31.07.06, 23:04
    www.tribstar.com/local/local_story_203234834.html
    From TribStar July 22 2006

    Terre Haute woman shares struggle with Lyme disease
    By Howard Greninger
    The Tribune-Star

    At first it was the fatigue, then came severe migraines, followed by body aches, swelling in her feet, ankles and hands. Eventually, depression and memory loss settled in.

    Melissa D. Mason struggled for three years to discover her affliction, often fainting for no apparent reason. She gained 90 pounds.

    “I went in and out of hospitals with tests and saw doctors. I even went to the Mayo Clinic [in Minnesota] for two weeks,” Mason said.

    Then, in February, Mason said local physician Dr. Charles French recognized similar symptoms in a case involving a nurse practitioner at his Brazil office. French suggested one last test for the 35-year-old Terre Haute woman. It proved positive — for Lyme disease.

    Spirochetal bacteria Borrelia burgdorferi cause Lyme disease. According to the Centers for Disease Control and Prevention, the bacterium is found in mice and deer and is transmitted to deer ticks, Western black-legged ticks or bear ticks, which then carry the disease.

    The skin is affected first, then joints, nervous system and, if untreated, other organs.

    Within three to 30 days of being infected, about three-quarters of Lyme disease cases start with the appearance of a round, red, “bull’s-eye” skin rash around the tick bite, then fever and headache, according to the CDC.

    In children, Lyme disease causes a lack of attention and loss of math and reading skills, Ryser said. Children also develop abdominal pains and changes in their personality and behavior.

    Lyme disease was discovered in 1975 after a mysterious outbreak of arthritis in children near Old Lyme, Conn. In 1982, the bacteria that causes the disease was isolated by Willy Burgdorfer, a tick-borne disease expert in Hamilton, Mont.

    A regimen of various antibiotics is the prescribed treatment.

    For Mason, the medicine must be administered intravenously. She began her treatment May 11.

    For more than two months, the daily routine has been the same: a three-hour I.V. drip, starting at 7 a.m., then a second two-hour intravenous treatment that begins at 4:30 p.m.

    “I get tired easily and sleep a lot more after some treatments,” she said.

    Mason must maintain the routine through August at the Health Center of America, a treatment clinic in Kansas City, Mo.

    She is under the care of Dr. Carol Ann Ryser, who specializes in the treatment of chronic illnesses such as diagnosing and treating Lyme disease, chronic fatigue, fibromyalgia and hypercoagulation defect, an inflammation due to Lyme disease.
  • artur737 31.07.06, 23:05
    Each year the Kansas City center treats 500 to 700 patients for Lyme disease. The majority of people are prescribed oral antibiotics. Just 10 percent of the patients require intravenous treatments like Mason, Ryser said.

    Mason’s immune system had been severely weakened by Lyme disease bacteria, and because of that, she required the longer-term I.V. therapy, Ryser said. After August, Mason will begin taking oral antibiotics.

    Mason, who worked in a Terre Haute clinic drawing blood until she became too ill, said she had to have her thymus gland removed last year because it was enlarged three times its normal size and was putting pressure on blood vessels behind her heart and lung. The thymus aids the body’s immune system.

    In addition, Mason said, she suffered a mild heart attack in October from the effects of the Lyme disease.

    Mason does not recall seeing a bull’s-eye rash, yet Ryser found a bite with a bull’s-eye rash on her right cheek. That, Ryser said, allowed the bacterial infection to spread quickly. Ryser said a test at the University of Kansas confirmed that Mason suffered from a lack of oxygen to the brain, another result of Lyme disease.

    Mason already has taken two different types of intravenous antibiotics.

    “We rotate them based on the cycle of the Lyme, which changes forms and goes through different cycles,” Ryser said. “You have to outsmart it, rotate the antibiotics and antifungals to treat the spirochetes. When treated with antibiotics alone, it goes into a cell-wall-deficient organism, which is not recognized by the [body’s] immune system, and antibiotics cannot get in. So she [Mason] has been on [antibiotics] Premaxin and Clindamycin and she will be on Rocephin and antifungals,” Ryser said.

    The disease’s covert nature makes it especially hard to detect.

    “That is why this is such a difficult disease, both to find and to test for, because as much as 70 percent of the time the body can’t find it due to the cell deficient wall and the spirochete is in a plasmorphic form. It doesn’t have an antigen that the immune system can recognize,” Ryser said. “A lot of testing is related to an antibody, so it can be missed as much as 70 percent of the time.”

    More accurate are fluorescent antigen tests, Ryser said, plus polymerase chain reaction (PCR) used to detect Borrelia DNA in the blood.

    Lyme disease, like syphilis, passes through the blood and can be transmitted to a baby during pregnancy, Ryser said. There are eight strains of Lyme bacteria, Ryser said, and each responds to different treatments.

    Mason is on a special low-carbohydrate diet that avoids transfat and white sugar but is rich in fruit and vegetables, Ryser said. The patient also takes anti-inflammatory nutritional supplements to help liver and gastrointestinal functions.

    The treatments are working, Mason said, but not without a price.

    She must rent an apartment near the center to live in between treatments at the clinic, and she is very limited in what she can do. Her family, Mason said, is keeping her going. Her parents, Paul and Connie Mason, and her grandmother, Billie Kirchner, each take turns spending weeks with her, providing food and company.

    When they aren’t with her, Mason gets daily calls from her mother and her father, who is a Vigo County commissioner, plus cards, letters and telephone calls from her brother, Travis Mason, and his family.

    “Being here is good and it’s making me feel better. I also have treatments twice a week to detoxify me in addition to antibiotics. I’ve lost 20 pounds and have no more swelling,” Mason said.

    “I appreciate things that I took for granted before, like daily time with my son. Even just to ride a bike, and I appreciate my [phlebotomist’s] job because it is very boring when you’re here because you can’t do anything.”

    Mason said she cannot lift more than 2 pounds with her right arm because of the device used for the intravenous treatments.

    The hardest part, though, has been the time away from her son, Mason said.

    She couldn’t attend 18-year-old Caleb Drake’s high school graduation in May. After graduation, her son entered the military and will graduate Friday from boot camp at Lackland Air Force Base in Texas.
  • artur737 31.07.06, 23:05
    “It was terrible,” Mason said. “I missed the first three biggest things that have happened to him in his life right now. I’ve talked to him since he went to boot camp and he wants us to write letters. He wanted to make sure I was OK. He didn’t expect me to be there” as he completes boot camp.

    Mason said, “I look at the calendar every day and say, ‘Oh, is it that much further until August?’ When I get home, I’ll have to try to get back to everyday life where I cook my own breakfast and supper and do my own laundry. I know it will be hard for me to go outside and do anything. I will always be scared of being bitten by a tick. I will never overcome my fear of ticks.”

    Howard Greninger can be reached at (812) 231-4204 or howard.greninger@tribstar.com.



    Diagnosing, treating disease often very difficult

    Two Vigo County women know first hand the affliction that Lyme disease can cause if not immediately treated and how difficult the disease can be to diagnose.

    Before 1983, Vigo County resident Connie Lawrence, 63, did not know that ticks transmitted the disease. That changed after she was diagnosed and treated for Lyme disease in 1989.

    Tammy L. Mundy, 39, a nurse practitioner who works in Brazil, thinks a tick bit her at age 6, when she spent a week in a hospital.

    However, she did not have symptoms of Lyme disease until stress and surgery recently caused the disease to flare up. Mundy in April finished a three-month regimen of intravenous antibiotics.

    Mundy visited the same clinic as Melissa D. Mason, 35, a Terre Haute woman currently undergoing treatment at the Health Center of America in Kansas City, Mo.

    Lyme disease is found in mice and deer and is transmitted to deer ticks, Western black-legged ticks or bear ticks, which then carry the disease. The Centers for Disease Control and Prevention began monitoring Lyme disease in 1982.

    The incidence of Lyme disease rose 40 percent from 2001 to 2002, hitting an all-time high of 23,763 cases nationwide, according to the CDC. The disease started to be reported to the CDC by physicians nationwide in 1991. As of 2004, the latest data available from the CDC, there were 19,804 cases of Lyme disease.

    The largest reported numbers are in New York, Pennsylvania, New Jersey, Massachusetts and Connecticut. Indiana had 32 cases reported in 2004, up from 21 in 2002, according to the CDC. The disease has been reported in every U.S. state.

    Lawrence vividly remembers her tick bite.

    “I was in Connecticut in 1983 when I got bit on my chest. I did have the bull’s-eye rash, which comes with Lyme disease, but I thought it was a spider bite,” Lawrence said. “You know, a brown recluse, because the look of the bite was round. My husband had been bitten by one years ago, so I just ignored it.”
  • artur737 31.07.06, 23:06
    “We came home and I soon started getting what I thought was the flu. Then I could hardly move. One day I could move, then the next day I couldn’t. That went away for a while and I just ignored it,” Lawrence said.

    She would later go to a doctor complaining of pain in her knees and aching joints.

    “I went on for six years like that until I was probably suicidal,” she said. “I had headaches, nausea, loss of vision and could hardly move. I was a little wacko, to tell you the truth.

    “It was the worst experience of my whole life. I think the worse part was not knowing what was wrong with me or thinking I was crazy, which actually you do go crazy because it can get into your brain,” Lawrence said. “It makes you nuttier than a fruitcake. A lot of times you don’t lose weight, but gain weight, so you don’t look sick.”

    Lawrence was tested for Lyme disease after a friend, the same person she visited in Connecticut, called to tell her of an epidemic of Lyme disease in that state. Lyme disease was discovered in 1975 after a mysterious outbreak of arthritis in children near Old Lyme, Conn.

    Former Vigo County health officer Dr. Wayne Crockett finally had Lawrence tested, discovering Lyme disease. She was given antibiotics intravenously for six weeks, then 10 months of oral antibiotics.

    “I want people to know they can get better, especially if it is found in a few weeks. Not everyone gets the rash, like I did. Some will say we don’t have those Lyme ticks in Indiana, but wherever there are ticks, there is Lyme disease,” Lawrence said.

    Mundy began intravenous antibiotics in mid-January, finishing her treatment in April. She still takes oral antibiotics. She now is working as much as six hours a day, resuming her role as a nurse practitioner at a Brazil clinic.

    She started back to work slowly, working just four hours a week, and now hopes to be back on her job full-time by the end of this summer. “I have the good and bad days, but I still have a lot of fatigue,” Mundy said.

    Prior to her treatment, Mundy had severe headaches for the past five years that would leave her weak and numb on the left side of her body.

    “Also, the left side of my face would pull to one side like a Bell’s Palsy-type thing. That is a classic sign of Lyme disease, which I did not know before I was treated,” Mundy said.

    “I also had chest pain and would have episodes where I would almost pass out and my body would be paralyzed for about 15 minutes,” she said. Also, her legs and feet were going numb, changing color.

    Mundy’s sister, Kathy, previously had been treated for Lyme disease and had been treated with oral antibiotics. Because of that, Mundy said she decided to be tested for the disease.

    Mundy said her husband, Chris, and her 11-year-old daughter and 13-year-old son also recently have tested for Lyme and are taking oral antibiotics.

    “My goal is to definitely bring awareness to this area and make physicians more aware of this in Indiana. I think people do not know enough about this disease,” Mundy said.
  • artur737 01.08.06, 04:13
    tinyurl.com/pzscq
    [Hartford, Courant - CT]
    Medical Revisionists Threaten Effective Lyme Treatment

    DR. RAPHAEL B. STRICKER

    July 31 2006
    A small group of scientists is turning the world of Lyme disease on its head. They deny the existence of chronic Lyme disease.

    They insist there is no "credible scientific evidence" for persistent infection after a short course of antibiotic treatment because the corkscrew-shaped bacteria that causes Lyme disease, Borrelia burgdorferi, cannot survive this treatment.

    Fearing "over-diagnosis," they publish guidelines endorsing an insensitive testing program that misses half the patients with the tick-borne illness.

    Fearing "over-treatment," they recommend antibiotic therapy barely adequate for acute infection and wholly inadequate for chronic Lyme disease.

    Soon they will publish the latest version of an already restrictive set of guidelines that will further pressure the Centers for Disease Control and Prevention and academic institutions to ignore chronic Lyme disease. The guidelines will encourage insurance companies to embrace up-front cost savings inherent in shorter treatment and deny payment for longer treatment, even if the Lyme patient is still sick but showing signs of improvement.

    Although the Lyme denialists claim support from mainstream medical groups, the reality is that the handful of them have managed to dictate policy to larger health care organizations through a closed process that rejects dissenting views. Unaware of this one-sided process, the rest of the medical industry blindly follows their lead while patients suffer.

    Lyme disease is the most common tick-borne illness in the world. Named after the town where it was discovered in 1975, the disease is transmitted by the bite of an infected tick. Research has demonstrated that the Lyme bacteria is one of the most invasive and elusive pathogens known to man. After causing a telltale "bulls-eye" rash, the bacteria screws its way into multiple organs and tissues to produce often-debilitating muscle, joint, nerve, brain and heart ailments.

    Although New England remains the epicenter of the disease, with up to 20 percent of new cases reported in Connecticut alone, Lyme disease and associated infections are popping up in new locations around the globe. Where you live doesn't accurately reflect your risk of catching Lyme disease because people travel on planes, trains and automobiles, while ticks travel on deer, birds and household pets. As a result, the risk of acquiring the disease is increasing unpredictably.

    We know treatment is effective when instituted early, but fewer than half the people with Lyme disease even remember getting a tick bite or seeing a rash. The resulting infection may spread and become chronic before the victim has a chance to seek treatment.

    Research over the past two decades suggests the key to eliminating chronic Lyme disease is prolonged antibiotic therapy. Lyme-treating physicians recognize this fact and studies support it.

    The Lyme denialists refuse to accept this point of view.

    Imagine if "AIDS denialists" had won out in the early 1990s. Doctors would have refused to prescribe antiviral medications and insurance companies would have refused to pay for them. How many millions of patients would have gone undiagnosed and untreated?

    Sound scary? Welcome to the world of Lyme disease run by Lyme denialists.

    Today many Lyme patients are going undiagnosed and untreated because of the Lyme denialist agenda. Although Lyme disease is usually not fatal, the disability associated with a chronic case is equivalent to congestive heart failure.

    Health care providers, government agencies and Lyme patients must confront the Lyme denialists and fight for better recognition and treatment of Lyme disease.

    Raphael B. Stricker, MD
  • artur737 02.08.06, 00:11
    tinyurl.com/kd4y7
    Published: July 22, 2006 11:48 pm

    Terre Haute woman shares struggle with Lyme disease

    By Howard Greninger

    The Tribune-Star

    At first it was the fatigue, then came severe migraines, followed by body aches, swelling in her feet, ankles and hands. Eventually, depression and memory loss settled in.

    Melissa D. Mason struggled for three years to discover her affliction, often fainting for no apparent reason. She gained 90 pounds.

    “I went in and out of hospitals with tests and saw doctors. I even went to the Mayo Clinic [in Minnesota] for two weeks,” Mason said.

    Then, in February, Mason said local physician Dr. Charles French recognized similar symptoms in a case involving a nurse practitioner at his Brazil office. French suggested one last test for the 35-year-old Terre Haute woman. It proved positive — for Lyme disease.

    Spirochetal bacteria Borrelia burgdorferi cause Lyme disease. According to the Centers for Disease Control and Prevention, the bacterium is found in mice and deer and is transmitted to deer ticks, Western black-legged ticks or bear ticks, which then carry the disease.

    The skin is affected first, then joints, nervous system and, if untreated, other organs.

    Within three to 30 days of being infected, about three-quarters of Lyme disease cases start with the appearance of a round, red, “bull’s-eye” skin rash around the tick bite, then fever and headache, according to the CDC.

    In children, Lyme disease causes a lack of attention and loss of math and reading skills, Ryser said. Children also develop abdominal pains and changes in their personality and behavior.

    Lyme disease was discovered in 1975 after a mysterious outbreak of arthritis in children near Old Lyme, Conn. In 1982, the bacteria that causes the disease was isolated by Willy Burgdorfer, a tick-borne disease expert in Hamilton, Mont.

    A regimen of various antibiotics is the prescribed treatment.

    For Mason, the medicine must be administered intravenously. She began her treatment May 11.

    For more than two months, the daily routine has been the same: a three-hour I.V. drip, starting at 7 a.m., then a second two-hour intravenous treatment that begins at 4:30 p.m.

    “I get tired easily and sleep a lot more after some treatments,” she said.

    Mason must maintain the routine through August at the Health Center of America, a treatment clinic in Kansas City, Mo.

    She is under the care of Dr. Carol Ann Ryser, who specializes in the treatment of chronic illnesses such as diagnosing and treating Lyme disease, chronic fatigue, fibromyalgia and hypercoagulation defect, an inflammation due to Lyme disease.

    Each year the Kansas City center treats 500 to 700 patients for Lyme disease. The majority of people are prescribed oral antibiotics. Just 10 percent of the patients require intravenous treatments like Mason, Ryser said.

    Mason’s immune system had been severely weakened by Lyme disease bacteria, and because of that, she required the longer-term I.V. therapy, Ryser said. After August, Mason will begin taking oral antibiotics.

    Mason, who worked in a Terre Haute clinic drawing blood until she became too ill, said she had to have her thymus gland removed last year because it was enlarged three times its normal size and was putting pressure on blood vessels behind her heart and lung. The thymus aids the body’s immune system.

    In addition, Mason said, she suffered a mild heart attack in October from the effects of the Lyme disease.

    Mason does not recall seeing a bull’s-eye rash, yet Ryser found a bite with a bull’s-eye rash on her right cheek. That, Ryser said, allowed the bacterial infection to spread quickly. Ryser said a test at the University of Kansas confirmed that Mason suffered from a lack of oxygen to the brain, another result of Lyme disease.

    Mason already has taken two different types of intravenous antibiotics.

    “We rotate them based on the cycle of the Lyme, which changes forms and goes through different cycles,” Ryser said. “You have to outsmart it, rotate the antibiotics and antifungals to treat the spirochetes. When treated with antibiotics alone, it goes into a cell-wall-deficient organism, which is not recognized by the [body’s] immune system, and antibiotics cannot get in. So she [Mason] has been on [antibiotics] Premaxin and Clindamycin and she will be on Rocephin and antifungals,” Ryser said.

    The disease’s covert nature makes it especially hard to detect.
  • artur737 02.08.06, 00:11
    “That is why this is such a difficult disease, both to find and to test for, because as much as 70 percent of the time the body can’t find it due to the cell deficient wall and the spirochete is in a plasmorphic form.
    It doesn’t have an antigen that the immune system can recognize,” Ryser said. “A lot of testing is related to an antibody, so it can be missed as much as 70 percent of the time.”

    More accurate are fluorescent antigen tests, Ryser said, plus polymerase chain reaction (PCR) used to detect Borrelia DNA in the blood.

    Lyme disease, like syphilis, passes through the blood and can be transmitted to a baby during pregnancy, Ryser said. There are eight strains of Lyme bacteria, Ryser said, and each responds to different treatments.

    Mason is on a special low-carbohydrate diet that avoids transfat and white sugar but is rich in fruit and vegetables, Ryser said. The patient also takes anti-inflammatory nutritional supplements to help liver and gastrointestinal functions.

    The treatments are working, Mason said, but not without a price.

    She must rent an apartment near the center to live in between treatments at the clinic, and she is very limited in what she can do. Her family, Mason said, is keeping her going. Her parents, Paul and Connie Mason, and her grandmother, Billie Kirchner, each take turns spending weeks with her, providing food and company.

    When they aren’t with her, Mason gets daily calls from her mother and her father, who is a Vigo County commissioner, plus cards, letters and telephone calls from her brother, Travis Mason, and his family.

    “Being here is good and it’s making me feel better. I also have treatments twice a week to detoxify me in addition to antibiotics. I’ve lost 20 pounds and have no more swelling,” Mason said.

    “I appreciate things that I took for granted before, like daily time with my son. Even just to ride a bike, and I appreciate my [phlebotomist’s] job because it is very boring when you’re here because you can’t do anything.”

    Mason said she cannot lift more than 2 pounds with her right arm because of the device used for the intravenous treatments.

    The hardest part, though, has been the time away from her son, Mason said.

    She couldn’t attend 18-year-old Caleb Drake’s high school graduation in May. After graduation, her son entered the military and will graduate Friday from boot camp at Lackland Air Force Base in Texas.

    “It was terrible,” Mason said. “I missed the first three biggest things that have happened to him in his life right now. I’ve talked to him since he went to boot camp and he wants us to write letters. He wanted to make sure I was OK. He didn’t expect me to be there” as he completes boot camp.

    Mason said, “I look at the calendar every day and say, ‘Oh, is it that much further until August?’ When I get home, I’ll have to try to get back to everyday life where I cook my own breakfast and supper and do my own laundry.
    I know it will be hard for me to go outside and do anything. I will always be scared of being bitten by a tick. I will never overcome my fear of ticks.”

    Howard Greninger can be reached at (812) 231-4204 or howard.greninger@tribstar.com.

    Diagnosing, treating disease often very difficult

    Two Vigo County women know first hand the affliction that Lyme disease can cause if not immediately treated and how difficult the disease can be to diagnose.

    Before 1983, Vigo County resident Connie Lawrence, 63, did not know that ticks transmitted the disease. That changed after she was diagnosed and treated for Lyme disease in 1989.

    Tammy L. Mundy, 39, a nurse practitioner who works in Brazil, thinks a tick bit her at age 6, when she spent a week in a hospital.

    However, she did not have symptoms of Lyme disease until stress and surgery recently caused the disease to flare up. Mundy in April finished a three-month regimen of intravenous antibiotics.

    Mundy visited the same clinic as Melissa D. Mason, 35, a Terre Haute woman currently undergoing treatment at the Health Center of America in Kansas City, Mo.

    Lyme disease is found in mice and deer and is transmitted to deer ticks, Western black-legged ticks or bear ticks, which then carry the disease. The Centers for Disease Control and Prevention began monitoring Lyme disease in 1982.

    The incidence of Lyme disease rose 40 percent from 2001 to 2002, hitting an all-time high of 23,763 cases nationwide, according to the CDC. The disease started to be reported to the CDC by physicians nationwide in 1991. As of 2004, the latest data available from the CDC, there were 19,804 cases of Lyme disease.

  • artur737 02.08.06, 00:11
    The largest reported numbers are in New York, Pennsylvania, New Jersey, Massachusetts and Connecticut. Indiana had 32 cases reported in 2004, up from 21 in 2002, according to the CDC. The disease has been reported in every U.S. state.

    Lawrence vividly remembers her tick bite.

    “I was in Connecticut in 1983 when I got bit on my chest. I did have the bull’s-eye rash, which comes with Lyme disease, but I thought it was a spider bite,” Lawrence said. “You know, a brown recluse, because the look of the bite was round. My husband had been bitten by one years ago, so I just ignored it.”

    “We came home and I soon started getting what I thought was the flu. Then I could hardly move. One day I could move, then the next day I couldn’t. That went away for a while and I just ignored it,” Lawrence said.

    She would later go to a doctor complaining of pain in her knees and aching joints.

    “I went on for six years like that until I was probably suicidal,” she said. “I had headaches, nausea, loss of vision and could hardly move. I was a little wacko, to tell you the truth.

    “It was the worst experience of my whole life. I think the worse part was not knowing what was wrong with me or thinking I was crazy, which actually you do go crazy because it can get into your brain,” Lawrence said. “It makes you nuttier than a fruitcake. A lot of times you don’t lose weight, but gain weight, so you don’t look sick.”

    Lawrence was tested for Lyme disease after a friend, the same person she visited in Connecticut, called to tell her of an epidemic of Lyme disease in that state. Lyme disease was discovered in 1975 after a mysterious outbreak of arthritis in children near Old Lyme, Conn.

    Former Vigo County health officer Dr. Wayne Crockett finally had Lawrence tested, discovering Lyme disease. She was given antibiotics intravenously for six weeks, then 10 months of oral antibiotics.

    “I want people to know they can get better, especially if it is found in a few weeks. Not everyone gets the rash, like I did. Some will say we don’t have those Lyme ticks in Indiana, but wherever there are ticks, there is Lyme disease,” Lawrence said.

    Mundy began intravenous antibiotics in mid-January, finishing her treatment in April. She still takes oral antibiotics. She now is working as much as six hours a day, resuming her role as a nurse practitioner at a Brazil clinic.

    She started back to work slowly, working just four hours a week, and now hopes to be back on her job full-time by the end of this summer. “I have the good and bad days, but I still have a lot of fatigue,” Mundy said.

    Prior to her treatment, Mundy had severe headaches for the past five years that would leave her weak and numb on the left side of her body.

    “Also, the left side of my face would pull to one side like a Bell’s Palsy-type thing. That is a classic sign of Lyme disease, which I did not know before I was treated,” Mundy said.

    “I also had chest pain and would have episodes where I would almost pass out and my body would be paralyzed for about 15 minutes,” she said. Also, her legs and feet were going numb, changing color.

    Mundy’s sister, Kathy, previously had been treated for Lyme disease and had been treated with oral antibiotics. Because of that, Mundy said she decided to be tested for the disease.

    Mundy said her husband, Chris, and her 11-year-old daughter and 13-year-old son also recently have tested for Lyme and are taking oral antibiotics.

    “My goal is to definitely bring awareness to this area and make physicians more aware of this in Indiana. I think people do not know enough about this disease,” Mundy said.

    Howard Greninger can be treated at (812) 231-4204 or howard.greninger@tribstar.com


  • artur737 02.08.06, 16:50
    Lyme disease is not confined to 'hot spots,' researchers conclude

    Fergus man, B.C. microbiologist collected deer ticks from across Ontario

    STEPHANIE MACLELLAN

    FERGUS (Jul 31, 2006)

    Twenty years ago, John Scott got sick and then sicker and didn't know why.

    "It was basically flu-like symptoms," said the Fergus man, who turns 61 this
    week. "Fatigue, joint ache and pain, muscle ache and pain. I started getting
    brain fog. I was not thinking clearly."

    Scott's doctor wasn't able to pin down what was causing his illness, so he
    started to look elsewhere. His wife, Kit, drove him across the province in a
    Dodge Caravan with a bed set up in the back where he could lie down, in
    search of a doctor who could diagnose his mysterious illness.

    "He wasn't well enough to sit up by the time we got there," Kit said.

    Four years and a dozen physicians later, their search ended with a diagnosis
    of Lyme disease -- a bacterial infection often carried by ticks that
    produces symptoms often resembling those caused by other illnesses. They
    include rashes, joint pain, sore throat, dizziness and insomnia.

    Scott was able to get treatment for the disease, although he wasn't cured
    and still suffers from joint pain. But back then, he didn't understand how
    he could get the disease when he had never travelled to the "hot spots"
    where the disease was most commonly transmitted -- mainly places along the
    north shore of Lake Erie.

    "I said, 'Jeepers, what's going on here?' " he said. "The biology we
    understood at the time didn't match what was going on."

    Now the president of the Lyme Disease Association of Ontario, Scott has
    spent the last 10 years trying to answer that question.

    Along with a microbiologist from the University of British Columbia, he
    collected blacklegged ticks -- more commonly known as deer ticks -- from
    across Ontario to determine whether they were carrying the Lyme disease
    bacteria. The study, funded in part by the Lyme disease association, was
    published in the Journal of Medical Entomology this month.

    Veterinarians and members of the public found the ticks on pets and people
    who had never travelled out of the province, and sent the tiny critters to
    the researchers for analysis. Scott and his team collected 591 ticks in the
    course of their research.

    Out of those, nearly 13 per cent tested positive for the Lyme bacteria,
    including a sample sent from north of Kenora.

    The reason, Scott said, is that deer ticks attach themselves to songbirds
    such as robins and blue jays to feed on their blood. The birds might pick up
    the ticks in those southern Ontario hot spots, but when they migrate and
    land somewhere else, the ticks can jump off and find new hosts to feast on.

    While the study turned up less than eight Lyme-carrying deer ticks per year
    across the province, the important point is that the disease can spread
    outside of the traditional hot spots, Scott said. He thinks more doctors
    need to be aware of that, so patients like him aren't misdiagnosed.

    If Lyme disease isn't treated, the more severe cases can lead to dementia,
    blindness and death, Scott said.

    "It's fooling people," he said. "The rate of infection is low. It's not like
    it's the flu bug and a lot of people get it.

    "Quite often, the medical profession is not looking for it."

    But there has been research out for at least 10 years confirming that
    Lyme-carrying ticks can be found almost anywhere, according to Ian Barker,
    an animal pathology expert at the Ontario Veterinary College.

    Among Barker's research on ticks and Lyme disease, he co-authored a study
    publicized in the Journal of Medical Entomology in 1995 that showed mature
    deer ticks can survive over the winter in northern Ontario climates --
    hundreds of kilometres away from the hot zones.

    However, the disease is so rare outside of the hot spots, there's still not
    much risk to most people, Barker said.

    "In the city of Guelph, in an average year, you can expect less than one
    person (to be infected)," he said.

    From his dealings with the public health system, Barker said he has no
    reason to believe doctors aren't aware of Lyme disease. The problem is, if
    the bull's eye-shaped rash most typical of the disease isn't there, doctors
    won't think of it, he said.

    "A physician is not going to make Lyme disease their first diagnosis without
    the classic presentation," he said.
  • artur737 14.08.06, 18:58
    www2.townonline.com/medfield/localRegional/view.bg?%20%20articleid=553284&format=text
    Tekst o tym jak to jest coraz wiecej boreliozy (jedna osoba na 150 jest chora) wg obserwacji pewnego pediatry i jak to Dr. Allen Steere niby przytakuje, ale nic z tym nie robi. Dr. Steere jest jednym z odkrywcow boreliozy, ale pozniej zostal chyba przekupiony przez firmy ubiezpieczeniowe (bo jego zachowanie trudno inaczej wytlumaczyc) i zaczal utrzymywac, ze cos takiego jak przewlekla borelioza nie istnieje, a wiec nie mozna tez jej leczyc.
    Obecnie Dr. Steere prowadzi tzw nadzor epidemiologiczny nad przypadkami boreliozy w USA i bardzo lubi rozmawiac z prasa na temat jak bardzo borelioza jest niepotrzebnie rozdmuchana. Moj przypis – nie tlumaczenie.

    Doctor: Lyme Disease cases spiking
    By Steve Macone/ Correspondent
    Thursday, August 10, 2006

    A Westwood pediatrician recently told the Medfield Board of Health that Lyme Disease cases are on the rise.

    Dr. Lester Hartman said he has seen two cases of Bell's palsy, three cases of Lyme meningitis and seven cases of Lyme arthritis - late manifestations of Lyme Disease - since September of 2004.
    "That's a lot more Lyme Disease than I've seen in my 18 years of prior experience," he said.
    Hartman said that one Sunday morning in his office he had three cases of Lyme disease.
    "That's too much," he said.
    In hopes of getting awareness to spread faster than the disease, Hartman has sent letters to the Boards of Health in Medfield, Dover, Sharon, Norfolk, Mansfield and Westwood.

    The number of reported Lyme Disease cases has been increasing over the past twelve years in Massachusetts, according to the Department of Public Health.

    The disease, caused by the bacteria Borrelia burgdorferi, is transmitted to humans in most cases by the deer tick. Early cases usually appear as flu-like symptoms, often with a rash, and are usually treated with antibiotics, though over the years the diagnosis and treatment of the disease has been debated.
  • artur737 14.08.06, 18:59
    Norfolk County is currently on the verge of a widespread Lyme Disease problem, according to Dr. Sam Telford, associate professor of infectious disease at Tufts University.

    "I'm predicting that between (route) 128 and (route) 495 will be just like the Cape and the islands within 10 years," he said, referring to the high rates of the disease in those areas, "There's no time to be wasted trying to prevent this."

    Between 2000 and 2004 the number of cases of Lyme Disease reported in Norfolk County went from 79 to 136, with a spike of 173 cases in 2002, according to the DPH.

    There are known high-risk areas for Lyme Disease such as the Connecticut River Valley, Cape Cod and the islands and Ipswich.

    But Telford said that while Norfolk County is in the path of the movement of the disease up from the Cape and the southern part of the state, the problem is so widespread now that hotspots are popping up all over the Bay State.

    Hartman said that in Massachusetts the risk of getting symptomatic West Nile Virus (in which symptoms of the disease are noticeable) is 1 in 350,000.

    "Now, the risk of getting Lyme Disease is 1 in 150. Where are our public health priorities?" he said.

    Hartman said one problem is that in the past physicians have not reported cases of Lyme Disease to the state as often as they should.

    "I know that I have been guilty of it," he said.

    It has been this underreporting, Hartman said, that has led to a decreased perception of the disease's prevalence.

    "I'm seeing a kind of complacency about Lyme Disease. I talked to one mother and it was like 'Oh yea, people get Lyme disease.' Parents say 'I'm not worried.'" he said, "I don't think people really appreciate...that this is on the rise, that Lyme Disease is not a benign illness."

    Dr. Allen Steere, Director of Rheumatology at Mass General said, "It's a voluntary reporting system. That means that the majority of cases are going to go unreported."

    But Steere said that while there is underreporting in the system, the percentage of cases that get reported has probably not changed recently and thus is not sufficient in explaining the increase.
  • artur737 14.08.06, 18:59
    "In other words, I don't think that the reason for (the increase in reported cases) is just that doctors are reporting better," he said.

    Steere said that in recent years there has also been a shift in the severity of Lyme Disease cases. Where there were once fewer cases that went undiagnosed and therefore manifested into the more serious effects of the disease, now there are more cases, he said, but they are being caught at a less harmful stage.



    Still, Steere added, many current cases of Lyme Disease still make it to chronic manifestations such as facial paralysis, meningitis and chronic fatigue.

    The increase in reported Lyme Disease cases has also been attributed to the deer population.

    "In essence, deer have become a suburban wild animal. In the process we're also starting to see the deer tick now in suburban areas," Steere said.

    Bill Woytek, a deer biologist at MassWildlife said that Norfolk County's two deer zones are tied for third place in the state for highest population density.

    "We're doing our best to decrease the deer population in that area," said Woytek.

    There's a correlation between deer density and increased cases of Lyme Disease, according to Woytek, and the deer density in Norfolk county is about 20-35 deer per square mile. Telford says that number should be at about 10.

    Woytek said the deer densities are higher in Norfolk County because of restrictions that towns place on hunting.

    "(Hunting) is always perceived as a safety issue," he said, adding that the restrictions have created another public safety issue by leading to more Lyme Disease.

    "Medfield is a prime example of a town that has hunting restrictions and high deer numbers," he said.

    "The main problem is how do you hunt deer effectively between houses in suburbia," said Telford.

    Sharon Board of Health Chair Anne Bingham said that Lyme Disease is a problem in town. She said that after receiving the letter from Hartman the board has begun to collect data about cases in the town, looking to vets as an indicator of how common deer ticks are.

    Walpole's Health Director Robin Chapell said she has seen an increase in rates of the disease over the last few years.

    Walpole reported nine cases of Lyme Disease in 2004 and seventeen cases in 2005, according to Chapell.

    Chapell said she believes the increase in the reported cases of Lyme disease is due to not only an increase in deer ticks but also an increased awareness of Lyme disease.

    "A couple years ago physicians weren't diagnosing people as readily as they are now," Chapell said.

    "It's good that a lot of (physicians) now know what the symptoms are. The best thing is for the everyday person to know what the symptoms are," she said.

    Chapell said that anyone hiking should wear long pants and long sleeves, preferably light colors so that ticks will stand out.

    She said ticks like warm parts of the body such as between toes, the groin and behind the ears.

    Using bug spray with more than 20 percent DEET helps, Hartman said.

    Chappell suggested mosquito netting to cover infant carriages because they cannot use DEET. She said it is important that people be aware of symptoms such as rash and muscle aches and see a doctor if they appear in conjunction with a tick.

    But finding the tick is often the hard part.

    Hartman recommends nightly tick and rash checks, with close looks at the scalp.

    Telford said that children are currently the most important variable both because of the fact that they need to be checked and because they are now coming of age at a time when Lyme Disease should be a part of their common knowledge.

    "Every child who grows up in Massachusetts should get a lesson that there are things out there in people's yards," he said.

    Telford invoked the poison ivy mnemonic device: "Leaves of three - let it be" and called for a similar phrase for ticks.

    "If we could get that same sort of basic knowledge...," he said.

    Steve Macone can be reached at smacone@msn.com.

  • artur737 29.08.06, 21:30
    Obecnosc boreliozy jest mocno podejrzewana w Afryce. Podejrzewa sie, ze przypadki boreliozy sa mylnie kwalifikowane jako malaria. Ktos tam ma o to zal, bo malarie tak trudno i kosztownie leczyc a borelioze mozna wyleczyc za $4. (facet musi byc strasznie naiwny, ale tak pewnie wyczytal w zachodnich ksiazkach medycznych).
    Od siebie dodam, ze laboratorium Bowen juz kiedys donosilo, ze wykrylo cysty boreliozy w afrykanskim pyle. Nie wiem o co tu chodzi, ale moze chodzi o pyl z drogi, gdzie zwykle w czasie deszczu stoja kaluze i z ktorych Murzyni pija i do ktorych takze siusiaja. Wiec jak to wyschnie a siusial chory Murzyn to powstanie pyl z cystami.
    A cysty w moczu u osoby chorej bywaja i zarazenia borelioza przez mocz u zwierzat sie zdarzaja.


    SENEGAL: Lyme disease: the forgotten scourge of West Africa
    23 Aug 2006 18:27:39 GMT
    Source: IRIN

    SINDIA KAF-NGOUNE, 23 August (IRIN) - In the small village of Sindia, 70 km from Dakar, the landscape is dotted with the burrows of rodents. They may not be easy to spot, but even more difficult to see are the swarms of ticks that also make their home there and whose bite poses a serious health threat to the local population.

    These ticks can carry Lyme disease, a potentially life-threatening sickness in humans that is becoming more common throughout West Africa.

    "Lyme disease is a bacterial sickness," said George Diatta, a zoologist at the Institute for Research and Development (IRD) in Dakar. "It is transmitted through the bite of Ornithodoros sonrai, a mole tick."

    The tick bite is usually painless, and often goes unnoticed, but its consequences can be devastating. Within seven days of infection, a person can experience a high fever that reoccurs every few weeks over a period of three months. Even more troubling, Lyme disease can trigger encephalitis, an inflammation of the brain that can be fatal.

    One of the problems for controlling and treating Lyme disease is that it is difficult to diagnose. Its symptoms resemble those of malaria, and in rural areas, where Lyme disease is more common, resources to perform tests are mostly unavailable. When it remains undetected, symptoms can escalate and lead to death.

    "It is difficult to pinpoint Lyme disease," said Diatta. "A test needs to be done when the patient shows a spike in fever. But the disease being difficult to spot in the blood, you need a very experienced lab technician to detect it."

    From 1990 to 2003, researchers with the IRD studying malaria in the village of Dielmo in the Sine Saloum region of Senegal, took advantage of the resources available to them to also look into the prevalence of Lyme disease.

  • artur737 29.08.06, 21:31
    The results of their 14-year study showed that between 4 and 25 percent of the population presented cases of the tick fever, with an average rate of incidence of 11 percent per year. Other studies conducted in rural parts of Senegal, Mali and Mauritania confirmed these results.

    "It's a significant rate of incidence for a sickness that affects all age groups," said Diatta. "Only malaria and the flu are as frequent, and we estimate that, like other endemic sicknesses, Lyme disease is a serious public health problem."

    The propagation of this bacterial infection in West Africa is due in large part to increasingly longer periods of drought. This has caused ticks to spread into areas outside of the Sahel region and into rural zones that receive less than 750 mm of rain per year.

    In Senegal, ticks are present in two-thirds of the country, reaching as far south as the border with The Gambia.

    A forgotten killer

    Believing Lyme disease was eradicated in the 1950s, it quickly fell off the radar of health professionals and out of the public consciousness, making it virtually unknown to local populations today, explained Diatta.

    The inhabitants of Sindia undoubtedly suffer from this lack of information.

    "I'd never heard of this sickness," said Hassan Ndione, a local villager, who expressed concern when told about Lyme disease. "I have rats and mice in my house, so I would imagine that there are ticks that could be biting us."

    According to Diatta, there is no viable way to eliminate the ticks without also destroying the rodent population, which would create an imbalance in the region's ecosystem. He feels that the only way to contain the spread of the disease is to inform healthcare workers and the public about its existence and symptoms.

    "What is essential is that health officials are vigilant about diagnosis and treatment. And to achieve that, universities and medical schools need to teach students about Lyme disease, to make them understand that when a high fever presents itself for more than three days, it is not malaria, but Lyme disease," said Diatta.

    "Recurrent malarias are often attributed to a resistance to anti-malarial medications, whereas these are cases of Lyme disease that can be easily treated with antibiotics costing no more than 2000 CFA (US $4)," he said.

    As for research, he said more needs to be done as Lyme disease in West Africa is fatal and its real incidence remains unknown. Until then, Diatta and his fellow researchers at IRD say they continue their work with the hope that government officials and international organisations will take note and mobilise aid to help deal with this public health problem.
  • franiolek1 06.09.06, 09:44
    Artykul dla francusko-jezycznych (Le Monde)
    www.lemonde.fr/web/article/0,1-0@2-3238,36-809685@51-809781,0.html
    Jest dosc dobry, bo mozna zrozumiec, ze o boreliozie nie wiele wiadomo, i ze
    nie ma pieniedzy dla naukowcow w tej dziedzinie i nie ksztalci sie
    specjalistow.
    Ogolnie malo pomylek...wedlug moich wiadomosci. Jest za to jedna i duza: mozna
    zrozumiec z tego artykulu, ze choroba objawia sie ZAWSZE zmianami skornymi,
    rumieniem. Napisze maila do dziennikarza...
  • franiolek1 15.09.06, 12:50
    Znowu znalazlam jakis artykul. Do oceny przez Artura... Niestety w tej chwili
    nie moge nawet wspomniec o tlumaczeniach - nie jestem w stanie nic robic.
    This brilliant article is a repost from my Lymearduk days. It's
    written by an LLMD who really knows his/her stuff.
    Make sure you read it right thro' to the end!

    And before any of you ask - I've never known who he author is
    because s/he wanted to remain anonymous.

    Jarisch-Herxheimer Reactions

    These reactions were discovered by Dr. Jarisch and Dr. Herxheimer, and
    result from taking antibiotics. The reaction is that symptoms get worse.
    As antibiotics kill germs, the germs (such as bacteria) die and they
    release their toxins. Symptoms are caused by toxins. So, the
    Jarisch-Herxheimer reaction is thought to be due to significant amounts
    of toxin, causing symptoms.

    An example of toxins causing symptoms would be Strep throat. The reason
    your throat hurts is due to toxins from the Streptococci bacteria.
    Likewise, the flu makes you achy and feel lousy, due to toxins from the
    virus.

    Syphilis, relapsing fever, and Babesiosis are other infections that call
    for antibiotics which cause Jarisch-Herxheimer reactions. Why these
    reactions are not seen with all infections is unknown.

    Borreliosis (Lyme disease) is highly associated with Jarisch-Herxheimer
    reactions. Most of my patients with Borreliosis have these reactions.
    Since different species of Borrelia cause the clinical pattern of
    symptoms associated with Lyme disease, then Borreliosis is a more
    accurate term.
    This is an infection. Old Lyme is a town in Connecticut. So I use the
    name Borreliosis, not Lyme disease.

    Jarisch-Herxheimer reactions are often called Herxheimers for short. Or
    even Herx is used to avoid the tongue twister that arises from the full
    name!

    Bacterial load is a concept about how much bacteria is present in the
    patient's body. More bacteria means a higher load. Herxheimer reactions
    should be worse if the load of bacteria is greater.

    If a patient has 10 billion Borrelia burgdorferi (one of the bacteria
    that causes Borreliosis), and an antibiotic killed 5 percent, the Herx
    would be worse than if the patient had 60 thousand bacteria and 5
    percent were killed. These numbers are arbitrary, and just used to make
    a point.
    he worse the Jarisch-Herxheimer reaction, the better the antibiotic is
    working! If more bacteria die, more toxin is released at their death.
    Greater toxin levels make the symptoms worse. Again, worsening symptoms
    while on antibiotics, is what the Herxheimer reaction is.

    Bacterial load may explain why some patients have a worse Herx than
    others. In general, as Borreliosis patients get better and better, their
    Herxheimer reactions get milder and milder. As the antibiotics slowly
    chip away at the "iceberg" of Borrelia burgdorferi, it gets smaller and
    smaller. Smaller amounts (loads) of bacteria mean milder Herx reactions
    should occur.

    Patterns often occur with Jarisch-Herxheimer reactions. Most commonly,
    if there is a pattern, it is every 4 weeks. In some patients it is so
    predictable, they may almost set their calendar by it. The shortest
    pattern I have seen is every 7 days, and the longest is every 6 weeks.

    Not all Borreliosis patients have Herxheimers, and some that do have no
    pattern. If a Herx occurs, it is highly significant. Clinically, this
    tells us that we are on the right track. It is just as significant as
    improvement in symptoms from taking antibiotics, if not more so. The
    Herxheimer is very helpful in making the clinical diagnosis to support a
    laboratory diagnosis (test result).

    In 1988, if my Borreliosis patients had a Jarisch-Herxheimer reaction, I
    changed their antibiotic. Later it was realized that the reaction was
    because the antibiotic was working. So patients were told to try to stay
    on antibiotics during the Herxheimer.

    It was then discovered that staying on antibiotics caused more trouble
    than good, if patients were having a Herx. Borreliosis patients usually
    lose ground if they stay on antibiotics when Herxheimers hit.

    Some of the saddest Borreliosis patients I have are ones that did not
    take my advice, and stayed on antibiotics during a Jarisch-Herxheimer
    reaction. For months, they went downhill and downhill. When they finally
    quit antibiotics, they often stay worse. They do not get back to
    baseline, much less back to normal.

    Your brain will tell you that since the Herxheimer indicates the
    antibiotic is working, to stay on them. Please ignore your brain. Since
    1988, with well over 600 Borreliosis patients, I assure you, going off
    antibiotics is the better part of valor. We do not need any heroes or
    heroines. Toughness is not needed. "No pain, no gain" does not apply to
    Jarisch-Herxheimer reactions!

    Questions often arise. Patients want to know what to do if the
    Herxheimer is mild. Worsening of symptoms may be due to the variation
    associated with Borreliosis. One of the classic features of Lyme
    Borreliosis is change. Patients have good days and bad days, good and
    bad weeks or seasons, and good and bad hours. So, what do you do with a mild
    Herxheimer?
    Experience has taught me to tell patients to go off antibiotics if there
    is any question about whether or not a Herx is occurring. In an article
    I have, researchers took 10 1/2 months before they could see the
    Borrelia burgdorferi growing in the test tube. This is an incredibly
    slow growing bacteria! So, if you go off antibiotics to get over a Herx,
    you are not losing ground like you would with Strep or Staph infections.
    These bacteria grow very fast, unlike Borrelia burgdorferi.

    Going off antibiotics for a Herxheimer, usually results in symptom
    improvement by 3 days, and definitely 6 days. This is true, until you
    use Flagyl (Metronidazole), or Mepron with Zithromax. These antibiotics
    tend to cause very severe Herxheimers, and often take longer than 3 to 6
    days for the symptoms to get better.

    This is a two-edged sword. The worse the Herxheimer, the better the
    antibiotics are working. So Flagyl or Mepron with Zithromax, is also
    associated with much better clinical improvement. The key is to start
    with low doses of these antibiotics, and increase the doses slowly.

    Some Borreliosis patients have required about a month to come out of a
    Herx caused by Flagyl or Mepron with Zithromax. It is important to get
    off these antibiotics at the first sign of a Jarisch-Herxheimer
    reaction. Prolonged recovery times from Herxheimers are usually seen
    with high doses, or patients that tried to tough it out and stay on
    antibiotics as their symptoms worsened.

    In general, Herxheimer reactions are a worsening of previously existing
    Borreliosis symptoms. But I have learned that a worsening of new
    symptoms may also be due to a Herx. So, I advise patients that a
    worsening of existing, past, or new symptoms is a strong indication to
    go off antibiotics until they feel better.


    Two other reactions need to be distinguished from Jarisch-Herxheimer
    reactions. These are drug side effects and allergic reactions.

    Drug side effects from antibiotics are usually gastrointestinal. Nausea,
    vomiting, heartburn, gas, diarrhea, bloating, irritable bowel syndrome
    (spastic colon), intestinal cramps, and constipation are examples.
    Borreliosis may cause abdominal pain. But most patients have a pretty
    good idea if the pain is a gastrointestinal drug side effect, versus a Herx.

    Allergic reactions are associated with itchy red rashes (drug
    exanthems), hives (whelps, urticaria), tightness in the throat, and
    difficulty breathing or shortness of breath. Borreliosis may cause hives.

    The skin is one of the target organs of Borrelia burgdorferi. So a great
    variety of rashes are seen in Borreliosis patients. Again, most patients
    are abl
  • artur737 15.09.06, 15:04
    Obcielo ci koniec. Dluzsze art. trzeba dzielic na czesci i postowac w kawalkach.
  • franiolek1 15.09.06, 15:41
    The skin is one of the target organs of Borrelia burgdorferi. So a great
    variety of rashes are seen in Borreliosis patients. Again, most patients
    are able to distinguish an allergic reaction from a Herxheimer. A lot of
    patients, who think they are allergic to antibiotics, actually
    experienced a Herxheimer. A history of multiple antibiotic "allergies",
    is a clue to look for possible Borreliosis.

    Steroids, such as Prednisone or Medrol, are best avoided if possible.
    They suppress the immune system and promote yeast growth. But if the
    Jarisch-Herxheimer reaction is severe enough, steroids may be needed.
    Some patients even have to be hospitalized, due to the Herxheimer!
    Usually, going off the antibiotics is all that is required for the
    worsening of symptoms to resolve. Drinking extra water and rest are helpful.
    Some patients with Borreliosis Herx on the first day they take an
    antibiotic. Or the reaction may occur months later. With Flagyl or
    Mepron with Zithromax, patterns are not as common, like is seen with
    other antibiotics. My success rate in helping Borreliosis patients has
    sky-rocketed since I started using Flagyl or Mepron with Zithromax. Since
    Flagyl and Mepron may both cause severe Herxheimers, it would be best in
    general to not take these together. Patients who have, responded nicely,
    but very low doses were needed, until the Herxheimer reaction severity
    was determined.

    Borreliosis, like Syphilis, may mimic or imitate virtually any disease,
    and cause virtually any symptom. So, a Jarisch-Herxheimer reaction may
    be a worsening of virtually any symptom. But it is more likely to be the
    symptoms that are typically experienced by Borreliosis patients.

    On the Lyme Borreliosis questionnaire, there are about 100 symptoms.
    This is not an all inclusive list. The classic triad of Borreliosis
    symptoms is fatigue (tired, exhausted), musculoskeletal pain (joints,
    muscles, back, neck, headache), and cognitive changes (memory loss,
    decreased mental concentration, trouble remembering what you read,
    disorientation, getting lost, depression). So, a Herxheimer usually
    includes a worsening of these classic symptoms in the triad.

    Sometimes a Herx is a worsening of all symptoms. Or one or some symptoms
    may worsen, while other are unchanged.

    Musculoskeletal pain, or neurogenic (generated by the nerves) pain may
    require strong pain medicine. More pain from a Herx does not justify
    using more pain medicine to stay on antibiotics. Patients lose more
    ground than they gain if they stay on antibiotics during a Herxheimer.
    Masking or hiding worse pain with drugs is a huge mistake.

    Sometimes after going off antibiotics, patients get a mixed picture. The
    symptoms that became worse while on antibiotics may start to get better.
    But other Borreliosis symptoms that did not change during the Herx, may
    start to get worse. In this case, try going back on antibiotics. A lower
    dose may be needed, or pulse therapy.


    An example of pulse therapy would be to take a "sliver" of a Flagyl pill
    every 4 days. I had a patient that got better using this regimen.

    Since Flagyl or Mepron with Zithromax may cause severe Herxheimers, most
    patients do better with low doses. The message I hear over and over from
    my patients, is that a low dose taken slowly works better for most people.

    The dose that results in the patient getting slowly better and, if they
    have a Herx, it is a mild one, is the correct dose. This is a "fairy
    tale" infection. Believe me, the turtles win the race, not the rabbits!

    Everybody wants to be normal and healthy yesterday, but you did not get
    sick in a day. Almost all Borreliosis patients get better. I cannot
    guarantee anything to anybody. But focus on the good and positive. I am
    a huge believer in the mind and body connection. Keep telling your brain
    that you are in the majority that gets better.

    The goal is for all Borreliosis patients to get healthy, and be able to
    fire me. I want everyone to go on with their lives, and be normal! Many
    people joke that normal for them is an unknown.
    One of the keys to getting well, is finding the correct antibiotic. If
    an antibiotic works, it usually causes Herxheimers. So, another key to
    getting well, is learning to maneuver around the Herx obstacle course!
    Please read these guidelines more than once. If you have a question, the
    answer is probably in the guidelines. This will save you a phone call.
    But if you are unsure, please call.

    Virtually everything written here about Borreliosis Herxheimer reactions
    also applies to Babesiosis. Babesia microti is a protozoa. It is not a
    bacteria, virus, fungus, or yeast. Other examples of protozoal
    infections would be malaria and giardia. Because protozoa are different
    types of germs, the usual Borreliosis antibiotics do not work.

    Most Borreliosis patients also have Babesiosis. As malaria is spread by
    mosquitoes, Babesiosis is spread by ticks. Blood is involved in both.
    Babesia microti likes to live in red blood cells, like malaria.

    The symptoms of Babesiosis are the same as Borreliosis, except that
    Babesiosis causes more sweats and fever. So, Babesiosis is just as big
    of a deal as Borreliosis, if not bigger. My success rate in helping
    Borreliosis patients dramatically improved when I started searching for
    and treating Babesiosis also!

    Babesiosis also is associated with Jarisch-Herxheimer reactions.
    Regardless of whether you have Lyme Borreliosis or Babesiosis or both,
    all of the Herxheimer guidelines apply. Some patients tell me that they
    are able to distinguish which symptoms are from which infection.
    Regardless, just follow the rules. Coloring outside the lines is best
    left to artists!

    About 1992 I had a patient ask me to treat her for intestinal yeast.
    Like most medical doctors I would not listen to her. Intestinal yeast is
    not taught in medical schools or residencies. But she kept begging me,
    so I gave her a prescription for Nystatin pills, to kill yeast.

    She got dramatically better with the Nystatin, and also by changing her
    diet with adding good bacteria back into her system. This was my first
    eye-opening experience that there was another world out there, besides
    traditional orthodox main-stream Western medicine. The number one risk
    factor for intestinal yeast is antibiotics. The other 3 are steroids,
    birth control pills, and pregnancy. Since the number one risk factor is
    antibiotics, and that is the treatment for Borreliosis, I started
    treating my hundreds and hundreds of Borreliosis patients with the yeast
    protocol. The patients got dramatically better! This forever changed my
    professional life. Once your eyes have been opened to the fact that some
    alternative treatments have merit, others are worth consideration.

    The real issue with yeast is the immune system. I have two files full of
    articles showing that yeast suppresses the immune system. If you have a
    chronic Borrelia burgdorferi infection, the last thing you want is a
    suppressed immune system. Babesiosis and Ehrlichiosis are also chronic
    persistent infections, spread by ticks.

    An article in the New England Journal of Medicine concluded that
    intestinal yeast was not a real issue. But they did not change the diet.
    I could have told the researchers before they started the experiment
    that the patients would not get better.

    Three things have to be done. The yeast has to be killed, usually with
    Nystatin or Diflucan. Diet changes, including avoiding sugar and
    fructose (the sugar in fruit), along with sometimes avoiding other
    carbohydrates, is the second component. And lastly the good bacteria,
    such as Lactobacillus acidophilus and Bifidobacterium bifidus need to be
    taken. The good bacteria are called probiotics.
    Scientists like to change just one variable in an experiment. If you us
  • franiolek1 15.09.06, 15:41
    Three things have to be done. The yeast has to be killed, usually with
    Nystatin or Diflucan. Diet changes, including avoiding sugar and
    fructose (the sugar in fruit), along with sometimes avoiding other
    carbohydrates, is the second component. And lastly the good bacteria,
    such as Lactobacillus acidophilus and Bifidobacterium bifidus need to be
    taken. The good bacteria are called probiotics.
    Scientists like to change just one variable in an experiment. If you use
    Nystatin or a placebo pill that looks like Nystatin, that would be
    scientifically ideal. But 3 things have to be done. So it is a less than
    perfect research model. In the real world of day-to-day medical
    practice, intestinal yeast is absolutely huge.

    The yeast questionnaire is included in my Family Practice intake
    questionnaire. It is amazing how much is seen in a typical practice,
    that is due to intestinal yeast. Irritable bowel syndrome (spastic
    colon), premenstrual syndrome (PMS), migraine headache, hypoglycemia
    (low blood sugar), allergies, and chronic fatigue are just some of the
    diseases that may resolve with the yeast treatment protocol.

    A lot of overlap exists between the symptoms of intestinal yeast and
    Borreliosis, or Babesiosis. Likewise, the symptoms of adrenal
    dysfunction and low metabolism are similar. Many Borreliosis patients
    have hormone imbalance.

    An overlap of symptoms is not the issue. The key in treating Borreliosis
    patients, is to see how many of these other disorders are "straws"
    breaking the camel's back of your health. The more stones I may turn
    over, the better my chances are of helping you. Each added arrow in my
    quiver enhances success. In any disease, it is always better to treat
    the underlying causes, as opposed to throwing medicine at the symptoms.

    When I first meet a new patient for an evaluation for possible
    Borreliosis, I do not treat for intestinal yeast, or other diseases. It
    is critical to treat one new thing at a time. For instance, if I start a
    patient on Tetracycline for Borreliosis and Nystatin for yeast, and the
    symptoms change, I will not know which one caused the differences.

    The number one priority is to try to establish whether or not a patient
    has Lyme Borreliosis. Once the clinical and/or laboratory diagnosis is
    made, then it is reasonable to add the yeast protocol.

    After patients are on the yeast protocol, and are also on antibiotics
    for Borreliosis, Babesiosis, Ehrlichiosis, or whatever infection, they
    need to continue the Nystatin with diet changes and taking probiotics
    (the good bacteria). Even if it is 10 years later, antibiotics must be
    accompanied by the yeast protocol, to avoid immune suppression and yeast
    symptoms.

    When yeast die in the intestines from Nystatin, symptoms may result. It
    is like a Jarisch-Herxheimer reaction. Some yeast experts, like William
    Crook, MD, call it a die off reaction. Some call it detoxifying,
    detoxing, or a detox reaction. But it is the same mechanism of toxin
    release, as in a Jarisch-Herxheimer reaction.

    If the protocol on the yeast handout is followed, this die-off reaction
    from yeast is usually not an issue. But virtually all patients cheat,
    and when they do, they cheat themselves. When patients eat sugar, their
    symptoms often get worse. So I do not have to fuss. It is better to be a
    cheerleader, and encourage patients.

    Patients often ask about whether to take Nystatin or Diflucan when they
    are off of their Borreliosis antibiotics due to a Jarisch-Herxheimer
    reaction.
    One expert recommends 40 days of the yeast protocol after stopping any
    antibiotic. Since I am not aware of any scientific proof to support
    that, it would be reasonable to stay on Nystatin while off antibiotics
    for Borreliosis. But if you want to go off Nystatin or Diflucan, it
    would be acceptable. After you restart antibiotics though, jump back on
    the yeast protocol bandwagon.
    In summary, the key to getting well is finding the correct antibiotic,
    going off antibiotics during Jarisch-Herxheimer reactions, treating
    intestinal yeast, and looking for other facets to the illness. The most
    common of these other facets, are co-infection, low metabolism, adrenal
    dysfunction, and hormone imbalance. Almost everybody gets better. Focus
    on the good and positive. If so inclined, pray. Try to keep a since of
    humor. Realize you are not alone. There are hundreds of Borreliosis
    patients just like you. And almost all of them are getting better.

  • artur737 15.09.06, 16:32
    No wiec skrytykuje.
    Obecnie nie radzimy przerywac abx w czasie herxow. Zamiast tego sugerujemy zredukowanie dawki na krotko.
    Autor wierzy, ze borrelia rozmnaza sie bardzo wolno, ale racje ma tylko czesciowo. Ta bakteria dzieli sie co okolo 24 godziny lub tylko nieco powyzej 24 godziny. Czyli jezeli zaczniemy z jedna bakteria to nastepnego dnia bedziemy mieli 2 bakterie, trzeciego cztery, czwartego osiem, piatego 16, szostego 32, siodmego 64. Niby malo, ale latwo policzyc, ze liczba bakterii dojdzie do miliona w ciagu 21 dni. To, ze w jakiejs tam cytowanej pracy bakterie nie rosly w szkielku w ciagu 10 miesiecy swiadczy o tym, ze nauka ciagle ma klopoty z wytworzeniem odpowiedniej pozywki na ktorej bakterie by rosly tak szybko jak w organizmie.
    Mepron z Zithromaxem powoduje tak ciezkie herxy jak autor pisze, ale u pacjentow z nadkazeniem pierwotniakiem Babesja.

    O drozdzakach - szczera prawda, ze lekarze sie o nich nie ucza na studiach,pozniej wysmiewaja chorych, podczas gdy drozdzaki powoduja calkiem realne choroby. W dodatku sa one uleczalne.
  • franiolek1 16.09.06, 19:06
    Moze wiec lepiej ten artykul usunac z forum, zeby nikogo nie wprawadzic w blad?
  • iiana1 18.09.06, 19:05
    franiolek1 napisała:

    > Moze wiec lepiej ten artykul usunac z forum, zeby nikogo nie wprawadzic w blad



    Dorzuce sie do tego co napisal Artur na temat tego artykulu. Znam ten artykul
    od ponad pol roku i wertowalam go juz wczesniej kilkakrotnie ,przygotowujac sie
    do terapii dozylnej cefalosporyna.

    Z innych zrodel wiem , ze trudno wyhodowac bakterie na pozywce w laboratorium,
    stad pewnie tak dlugi okres namnazania sie borelii.W jeszcze innych
    materialach naukowych publikowanych na roznych stronach o boreliozie,
    wyczytalam, ze nawet po wielomiesiecznym kursie antybiotykowym, gdy wyglada na
    to, ze pacjent dobrze sie juz czuje (wyzdrowial ?), jest sie w stanie (trudny
    to proces) wyhodowac bakterie borelli.Tak wiec jakies przetrwalnikowe formy
    istnieja i czekaja byc moze dlugo na warunki dobre do wzrostu.

    W reakcji herxheimera bylam o wlos od odstawienia antybiotykow, tak okropnie
    nie do wytrzymania bylo to przezycie. Odstawienia cefalosporyn zadali nawet
    lekarze dyzurni ordynujacy mi 3 razy dziennie kroplowki.
    Postanowilam (rowniez za rada kilku osob na forum), zmniejszyc dawki na kilka
    dni: z 3 razy 2 gramy (w sumie 6 gramow dziennie cefotaximu) na 3 razy 1,5
    grama czyli 4,5 grama dziennie.Lekarze szpitalni wkoncu zgpodzili sie na
    ten, jak to nazwali "experyment". Zaczelam wracac do normy tzn. juz na
    trzeci dzien takich zmniejszonych dawek herx zaczal slabnac, i po kilku
    dniach moglam znow wrocic do dawek podstawowych,czyli 6 gramow.

    Po przeczytaniu wczesniej wlasnie tego artykulu, bilam sie z myslami czy
    nie odstawic antybiotyku na jakis czas podczas herxa( Ale istnialo tez ryzyko
    ze lekarze nie zgodza sie na powrot do leczenia antybiotykiem, dla kilku z
    nich to nie byl herx tylko alergia etc).
    Podjelam decyzje, na wlasne ryzyko,o zmniejszeniu dawek na czas ostrego herxa,
    poparte opiniami ktore znalazlam tez w publikacjach dr Donty, DrBurrascano,
    postach wymienianych miedzy pacjentami lekarzy "oswieconych"ze Stanow i Kanady

    Moje zastrzezenie co do tego artykulu wiazalo sie i wiaze tylko z tym ,ze
    nie jest on przez nikogo podpisany. Tak wiec nikt za wypowiedziane
    slowa nie bierze osobiscie odpowiedzialnosci.

    Reasumujac, byc moze odstawienie anbtybiotyku w jakis skrajnych przypadkach
    bywa konieczne, ale jest taka szansa(zeby nie rzec prawidlowosc), ze
    podobny efekt oslabienia herxa , ktory w swej ostrej formie moze byc grozny,
    otrzyma sie zmniejszajac na jakis czas dawki antybiotykow, a nie przerywajac
    terapie.


  • artur737 18.09.06, 19:31
    Nie bedziemy usuwac skoro mamy zamieszczona krytyke.
  • artur737 15.09.06, 17:41
    Mystery illness is just one fight for woman

    Finding treatment has been a struggle for family

    BY JOSEPH DE AVILA
    Statesman Journal

    August 28, 2006

    Kara Chytka lives in constant pain. She takes 500 milligrams of morphine a day. She cannot walk or move her arms. Her speech is jumbled. She had a feeding tube implanted because she had difficulty swallowing. Her husband, Chris, quit his job to care for Kara, who requires 24-hour attention, and their four children.

    It is unclear what is plaguing Kara, of Aumsville. A hematologist in San Francisco diagnosed her as having Lyme disease. Three neurologists from Oregon have said she has amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease. Kara, 27, and her family have no doubt that what is afflicting her is Lyme disease.

    Kara's affliction highlights the controversy about how doctors diagnose and treat Lyme disease, the nation's most common insect-spread illness.

    "Lyme-literate" doctors say Lyme disease is more prevalent than people realize. They also say long-term antibiotics treatment is needed to care for patients in some cases -- a practice others disagree with.

    Doctors say most patients fully recover from Lyme disease after receiving the standard two to four weeks of antibiotic treatment. Also, they say, treating Lyme disease patients with long-term antibiotics has not been clinically proved effective and can be dangerous.

    Doctors agree on the need for more research and clinical studies, especially into chronic Lyme disease, which some doctors call post-Lyme disease syndrome.

    In 2004, the Centers for Disease Control and Prevention received 19,804 reports of Lyme disease, down from 21,273 in 2003. Oregon logged 11 cases in 2004, according to the CDC.

    Pat Smith, the president of the Lyme Disease Association, a national advocacy group for Lyme disease sufferers, said there probably are 200,000 new cases nationwide each year. Many of these patients are not getting treatment, she said.

    Lyme disease spreads to humans via bites from infected blacklegged ticks. Kara said she doesn't recall being bitten. And she never had the trademark "bulls-eye rash," which gradually expands to as much as 12 inches across and occurs in 70 percent to 80 percent of patients infected with Lyme, the CDC says.

    Chris, 32, and Kara suspect that a tick bit her when she was younger. Kara said she had seizures from ages 7 to 15. She had problems with balance growing up. Her knees, hips and ankles throbbed with pain by the time she was 18.

    In 2002, her speech and coordination deteriorated. She had blurred vision and saw spots. And she often felt like she was in a daze.

    Diagnosis of ALS

    That year, a neurologist diagnosed her as having ALS. Chris and Kara said the neurologist told them that 90 percent of people with ALS die in two to three years. Two other neurologists concurred with the diagnosis.
  • artur737 15.09.06, 17:41
    Kara said she never thought she had ALS. She researched her symptoms on the Internet, finding stories of people diagnosed with ALS who later were diagnosed with Lyme disease. She made plans to get tested for Lyme disease.

    Diagnosis debate

    The debate in the medical community about Lyme disease starts with diagnosis.

    The two-tiered blood test that the CDC recommends for Lyme disease has been criticized because it can miss some patients who have the disease, Smith said. Because of this, some patients are not being properly treated.

    The Lyme Disease Association is pushing the CDC to change its recommendations to a more liberal method that would not miss as many patients. Some doctors say that raises the possibility of falsely diagnosing Lyme, which also could delay proper treatment.

    The CDC says there are misperceptions about the accuracy of the tests. The tests can detect Lyme infection 85 percent to 95 percent of the time in patients who have been infected for several weeks, said Hannah Gould, an epidemic intelligence service officer with the CDC.

    In 2003, Chris and Kara went to Dr. Raphael Stricker, a hematologist in San Francisco. Stricker is the president of the International Lyme and Associated Diseases Society, a group of doctors who use more-liberal testing and treatment guidelines for the disease.

    Chris and Kara said Stricker used a variety of blood tests to check for Lyme disease. He performed only the second of the two-tiered test recommended by the CDC. Kara tested positive. Stricker said Kara has a rare motor neurological form of the disease, which is nearly identical to ALS in its symptoms.

    He prescribed intravenously administered antibiotics for Kara. When she returned to Oregon, her primary-care physician, Elizabeth Blount, put Kara on the antibiotics that Stricker recommended.

    The Infectious Disease Society of America's guidelines for treating Lyme disease call for two to four weeks of antibiotics treatment. Only rare cases require more than four weeks of treatment, the guidelines state.

    Treatment risks

    There are numerous risks of long-term antibiotic treatment, said Dr. John Townes, an associate professor of infectious disease with Oregon Health & Science University. Bacterial infection, fungal infection, colitis, allergic reactions and other conditions are all possible effects of long-term antibiotic use.

    "It is very risky," Stricker said. "Everything in medicine has risks. Leaving chronic Lyme disease untreated has even greater risks."

    Kara said she feels she has no choice. While on the antibiotics, she was was strong enough to use a walker. Her speech was slurred, and she still had some pain. But she said she thought she was getting better.

    After about a year of antibiotics treatment, her primary-care physician, Blount, met with an ethics committee at Silverton Hospital to discuss Kara's condition. Blount decided to take Kara off the antibiotic treatment, citing the risks.

    "She continued to get worse" and didn't respond to treatment, Blount said.

    Blount said she thinks Kara has ALS. She said that Kara perhaps had Lyme disease and it triggered a neurological response that might have caused her to develop ALS.

    Still a mystery

    Some doctors say chronic Lyme disease will remain a mystery until more scientific studies are done.

    "Eventually, we can understand that better. Maybe the organism is hanging around still. Maybe not," Barbour said. "These people are suffering from something."

    In the past two years, Kara has lost nearly all motor control over her arms and legs. Her speech is difficult to understand. Chris translates most of her words for others. She chews a bit better now but still receives much of her nutrition through her feeding tube.

    Chris and Kara are looking for a doctor in Oregon who will put her back on antibiotics. They have discussed moving to California to get treatment from Stricker.

    If they move to California, they will lose the support provided by their families and their church, Bethel Baptist Church in Aumsville. Chris said they cannot afford California's cost of living or moving there.

    Meanwhile, their bills have been piling up. The Oregon Health Plan pays Chris a small stipend to take care of Kara. And she gets Supplemental Security Income payments. But Kara's health-care costs suck up most of their income, they say, making it difficult to travel to find a physician to put Kara back on antibiotics. Until then, they have to wait.

    "I'm not going to give up," Kara said. "I'm not going to stop fighting."
  • artur737 17.09.06, 20:16
    Kolejna czesc Wojen Gwiezdnych, a raczej Wojen Boreliozowych:
    Sprawa Dr. Jones'a - niezwykle popularnego LLMD pediatry oskarzonego o nieprawidlowe praktykowanie medycyny.
    Pretekstem do ataku stala sie skarga zwasnionych rodzicow, ktorych dziecko otrzymalo od Dr. Jones'a zlecenia leczenia przez telefon. W ramach swojej bardzo obciazonej kliniki nie mogl zobaczyc chorego dziecka jeszcze przez kilka miesiecy a innych chetnych lekarzy do leczenia w poblizu nie bylo.
    Sprawa jest ciagle w toku a stawka jest medyczna licencja Dr. Jonesa do praktykowania medycyny. Obecnie Dr.Jones ma 3000 aktywnych chorych, glownie dzieci i jest praktycznie jedynym LLMD pediatra w USA.
    Pierwotnie chciano rozprawe przeprowadzic bez rozglosu byc moze liczac na to, jak stalo sie to w przypadku Dr. Jemseka, ze wyrok bedzie lagodny (nadzor i niewielkie ograniczenie w praktyce przez rok).
    Niestety na to sie nie zanosi poniewaz po stronie oskazycieli pojawili sie glowni nieprzyjaciele pacjentow z borelioza - lekarze piastujace wysokie stanowiska decyzyjne jednoczesnie negujacy istnienie przewleklej boreliozy. Wsrod nich Dr. Shapiro.
    Obecnie sprawa nabiera odcienia politycznego i zapewne dlatego zdecydowano sie isc do mediow.

    www.courant.com/news/local/northeast/hc-lymedoc3.artsep17,0,7120907,print.story?coll=hc-northeast-top
    Lyme Disease Divide

    A Schism Over Treatment Philosophies Puts A Connecticut Pediatrician's License On The Line

    By Gary Santaniello

    September 17 2006

    The current epicenter of what some call "the Lyme wars" is a warren of small rooms on the nondescript ground floor of Madison Towers, a 17-story apartment building on Park Street in downtown New Haven.

    This is where Dr. Charles Ray Jones, whom some consider the world's foremost pediatric Lyme disease specialist, practices medicine. A few blocks away is Yale University School of Medicine, where Lyme disease was first researched, and where its earliest treatment protocols were developed in the years after the disease was identified in 1975. It is also where the current orthodoxy stands in fierce opposition to Jones's approach to treating the disease.

    Sitting at a desk in one of his small examining rooms, Jones doesn't appear to be a man engulfed by controversy and facing the possible loss of his license to practice medicine. He is a large man who wears thick glasses and speaks quietly, deliberately, almost inaudibly.

    "I'm not a renegade," he said. "I don't look for trouble. It finds me."

    Dr. Eugene Shapiro, a professor of pediatrics and epidemiology at the medical school, helped write the guidelines to treat Lyme disease that have been endorsed by the U.S. Centers for Disease Control. Shapiro said he has received many calls from physicians in Connecticut "begging me to see their patients so they don't have to see Dr. Jones. It is not an uncommon call."

    Transmitted to humans by the painless bite of the tiny black-legged deer tick, Lyme disease presents doctors with a host of challenges. Once the corkscrew-shaped bacterium, called a spirochete, enters the bloodstream, it can cause a wide range of constitutional, musculoskeletal and neurological symptoms. Its ability to change forms often makes it difficult to detect and destroy, and the longer the symptoms go untreated, the more intractable they become.

  • artur737 17.09.06, 20:18
    The strong belief in the U.S. medical establishment, represented by the 8,000-member Infectious Diseases Society of America, is that the use of antibiotics on a long-term basis to treat the Lyme bacterium is not only ineffective, but can be harmful to patients. But a group of about 300 doctors, academics and other health-care professionals adamantly believes that the establishment is in denial, not only over the effectiveness of a long-term course of antibiotics, but over the very existence of chronic Lyme disease. Thus, in effect, there are two standards of care for Lyme disease, and the onus is on the patient to be aware of it.

    Shapiro and establishment doctors like him say Jones too often diagnoses Lyme disease where it doesn't exist, by their definition of the disease. As a result, they say, his use of antibiotics is too aggressive and much too prolonged. In fact, some of Jones's patients have been taking the drugs for years. Doctors in the medical establishment generally believe that most patients who acquire Lyme can be cured with a single course of antibiotics lasting from 14 to 28 days.

    The other camp, led by what its advocates call "Lyme literate" doctors, believes Lyme is more multifaceted than the mainstream community insists and, particularly in its late stages, requires more aggressive antibiotic regimens, at least until all symptoms are resolved.

    "It's a polarized situation, a total war going on," said Diane Blanchard of Greenwich, whose children have been treated by Jones. "And the fallout, once again, is borne by the patients." Blanchard is co-president of Time for Lyme, a Greenwich-based advocacy group that promotes wider education and research for tick-borne illnesses.

    The disease, named after the town on the Connecticut shore where it was first identified, and now found in all but a handful of states, is pitting doctor against doctor. "I've never observed any disease that has caused so much controversy in the medical community," said Dr. Steven Phillips of Wilton, whose practice consists entirely of Lyme patients. "It's a hotly contested area of medicine."

    Dr. Charles Ray Jones is 77 years old. He graduated from New York Medical College in 1962, interned in pediatrics at St. Luke's Hospital in Manhattan and went on to become chief resident at Memorial Sloan-Kettering Cancer Center.

    The demands of doing research while managing a busy private practice motivated Jones to leave New York City in 1968 for a pediatrics practice in Hamden. By the middle of the next decade he says he began encountering a new form of juvenile arthritis, which shortly came to be identified as Lyme disease. Since then, Jones has treated more than 10,000 children for Lyme from virtually every state, and from around the world.

    Jones said that the children who end up as his patients are often children with persisting and more serious symptoms of Lyme. In fact, he said, 80 percent of his cases are children with a chronic form of the disease. They come to him in every conceivable condition, he said, including those who are blind as a result of Lyme, or paralyzed, or wracked with pain.

    Jones said that of all the children he has treated, "about 75 percent are [now] well, and without symptoms."
  • artur737 17.09.06, 20:18
    At the end of the hallway in his office is Jones's "chart room," a windowless box in which four metal file cases, each 6 feet tall and filled on both sides with bulging manila folders, occupy almost all the available space. These are the files of his roughly 3,000 active patients, containing the records of each office visit, the results of every test, and the complete chronicle of their afflictions.

    It's the content of two of those files, however, that has placed Jones is in the middle of a state Medical Examining Board hearing in Hartford that will determine whether he will be allowed to continue treating patients.

    In late 2005, the state Department of Public Health charged Jones with violating "the applicable standard of care" for his treatment of two young siblings who live in Nevada. The complaint was initiated by the children's father, who is involved in a custody dispute with their mother, an emergency room nurse. After investigating the complaint, the health department brought charges to the medical board, alleging that Jones diagnosed Lyme disease in the children without examining them, that he failed to consider other causes for their symptoms, and that he improperly prescribed antibiotics.

    At his fourth hearing date on Sept. 7, Jones denied all of the charges. Because of the volume of Lyme patients he has seen in more than three decades, he told the three doctors from the Medical Examining Board who are hearing his case, "I am entitled to rely on my clinical experience in addressing the needs of a severely sick patient population."

    Jones's hearing began March 23; the last scheduled session is Sept. 28. When the hearing is completed, the full 15-member state medical board will decide whether to accept, reject or modify the panel's recommendation, and decide whether, after four decades of practicing medicine, Jones's license should be revoked or other disciplinary action taken. Because it is an administrative hearing based on findings of fact, Jones's grounds for appeal are limited.

    The prospect of losing Jones's services terrifies his patients and supporters, some of whom have traveled from as far as Florida simply to support him at the hearings.

    "You have to understand how important and beloved Jones is to the Lyme community," said Sheila Lederman, who came from Parkland, Fla., west of Boca Raton, with her daughter, Jessica, to attend a hearing in June. Jessica, now 18, was first treated by Jones six years ago. "He's saved a lot of children," Lederman said. "That's why people call him a saint. I'll do everything I can for this man."

    Virginia Anez, who lives in Boynton Beach, Fla., attended the same hearing with her 10-year-old daughter, Mary Ann, also a patient of Jones.

    "Of course I'll help him," she said. "There are things in life you do no matter what, and Dr. Jones is one of those things."

    Debbie Siciliano of Greenwich, the other co-president of Time for Lyme, said she has been a staunch supporter since Jones successfully treated her son for Lyme nearly a decade ago. She called his prosecution "a witch-hunt against Lyme-literate doctors" and "a crime. They're taking away these kids' only hope."

    The case is also being watched by state Attorney General Richard Blumenthal, who has been closely involved with issues involving the reporting, diagnosis and treatment of Lyme.

    "I'm very concerned there may be a perception, rightly or wrongly, that care for Lyme disease is discouraged" by the charges against Jones, Blumenthal said. "A lot of people are watching, and it may have broader implications." The case, Blumenthal added, "certainly has acquired a larger dimension than a single individual."

    In part, that's because the proceedings against Jones appear to be part of a pattern against doctors who take an aggressive approach to treating Lyme, said Pat Smith, the president of the Lyme Disease Association, a national nonprofit organization, based in Jackson, N.J. Smith said that more than 30 Lyme doctors in 10 states have been brought before state medical boards since the early 1990s. Most recently, in June, Dr. Joseph Jemsek, an infectious disease specialist in North Carolina, was found guilty of inappropriately diagnosing and treating Lyme. His license was suspended for a year, but the suspension was stayed, and restrictions were placed on his practice.

    Even more troubling than the charges against Jones, said Smith, is "the terrible climate that has been deliberately created by vested interests and others in this country to keep Lyme physicians from wanting to treat patients. If we had a wealth of treating physicians, we wouldn't be seeing these situations happen. That, to me, is the real story."

    The Jones case may be particularly fraught because he is a pediatrician. Children could be considered Lyme's most vulnerable victims since playing outside in suburban yards puts them for extended periods in habitats favored by deer ticks.

    "I don't know what's going to happen to these children if he can't practice anymore," said Paula Capasso, a Guilford resident whose 17-year-old daughter, Alexandra, has been a patient of Jones's since 2000. "It scares me, because we're in deep trouble if this goes bad."

    Despite Connecticut's dubious claim to fame as the home of Lyme disease, the state health department, citing budget restraints, eliminated the mandatory reporting of Lyme by laboratories in 2003, although doctors are still charged with reporting them. In 2002, Connecticut ranked second in the nation, with 4,631 cases of Lyme disease reported. In 2003, after labs stopped having to inform the state about Lyme cases, the number of reported cases fell 70 percent, to 1,403.

    But it's clear that the incidence of Lyme in Connecticut is rising. Thirty-four percent more cases were reported in 2005 than in 2004, with the largest increases in New London, Middlesex and New Haven counties. Although Connecticut overwhelmingly has had the highest rate per capita in the country since 1992, the state now ranks seventh nationally in the number of reported cases. It's impossible to know what the state's rank would be if required reporting by laboratories were re-instituted. This doubt is mirrored nationally, as well. Across the country, 21,304 cases were reported to the CDC in 2005, an 82 percent jump in 10 years. But the CDC admits its strict reporting criteria captures just 10 percent of actual Lyme cases.

    Meanwhile, Connecticut appears to be holding its own in its role as Lyme disease central.

    "It's epidemic around us this year," said Dr. Mary Cummings Satti, an internist in Old Lyme. "It's just everywhere right now."

    And the state's attorney general keeps pushing state officials to beef up its reporting requirements. At this point, although doctors are supposed to inform the health department about cases of Lyme, a strict mandate for laboratories to do so is recognized as being critical to gauge the true incidence of the disease. At a public hearing on Lyme in January 2004, Blumenthal urged the Public Health commissioner, Dr. J. Robert Galvin, to establish a better reporting requirement. Although Galvin said one would be in place by 2005, more than halfway through 2006, the old system remains. In a July 25 letter to Galvin, Blumenthal called the under-reporting of Lyme "particularly harmful for the public health." It neutralizes preventive efforts and makes those with symptoms less likely to seek care if it isn't being reported in great numbers, he said.
  • artur737 17.09.06, 20:19
    What most concerns Blanchard, the co-president of Time for Lyme, is that Connecticut's Lyme numbers represent "the tip of the iceberg," and affect the funding Connecticut receives from the CDC for state health programs. "It's been left in the hands of grassroots organizations to support the citizens of this state," she complained. "Why is that?"

    The simple answer is because of the bitter battle over the standard of care, a battle that exists because there is no direct test to identify the Lyme bacterium. Without one, there's no way to determine if the infection has been eradicated, so the diagnosis of Lyme remains a clinical one.

    On one side of this fight is the Infectious Diseases Society of America, or IDSA. This large organization of physicians, scientists and other health-care professionals with specialty training in infectious diseases has established guidelines for diagnosing and treating Lyme. Adopted by the CDC, these guidelines have become the de facto national standard. The society believes Lyme causes largely objective symptoms that can be cured with a limited course of antibiotics, typically not more than 21 days.

    On the other side is the International Lyme and Associated Diseases Society, or ILADS, founded in 1999 by physicians and academics who believe mainstream medicine is too conservative in its treatment of Lyme. A much smaller group of practitioners, they are more proactive in advancing the standard of care based on what they say is new research and on new clinical findings its members uncover. They say Lyme should be treated with antibiotics until all symptoms are resolved, and usually at least two months beyond that to be sure the infection is eradicated.

    Other than agreeing that Lyme can be successfully treated if caught early, the two camps agree on little else: testing protocols, the use of antibiotics, acceptable research, even whether there is such a thing as chronic Lyme disease (one side says it's merely persisting symptoms, the other a persisting infection).

    "It's like two people speaking different languages and trying to communicate," said Dr. Kenneth Liegner of Armonk, N.Y., a leading physician associated with ILADS, the smaller, more Lyme-focused group. "It's very nasty, very destructive."

    According to Dr. Henry M. Feder Jr., who specializes in pediatric infectious diseases at Connecticut Children's Medical Center in Hartford, "the great, great majority of Lyme patients fit a very straightforward kind of pattern."

    Or, as Shapiro, from Yale, put it, "Lyme disease in Connecticut is not all that hard to diagnose. The bottom line is, Lyme disease causes objective findings. If a patient has only non-specific symptoms, it's unlikely due to Lyme."

    As for what Shapiro defined as objective evidence marking this pattern - a rash, often, but not always, in the form of a bull's-eye; swollen joints, facial paralysis and meningitis - Jones said, "Unfortunately, 99 percent of the people I see don't fit into those categories. If one uses [the infectious diseases society] guidelines, then very few people are going to have Lyme."

    The controversy over the use of antibiotics boils down to diametric differences on costs and benefits. Shapiro said he believes extended courses of antibiotics, beyond being expensive, can cause gallstones, heart infections and create treatment-resistant "superbugs."

    "If there was evidence that long-term antibiotics made patients better," he said, "I'd jump right on the bandwagon."

    But for Jones, the benefits outweigh the risks, and not just in a child's quality of life. Taking into account the cascading effects of untreated or under-treated Lyme, which can lead to neurological and cognitive damage, Jones said that by treating until symptoms resolve, "you're enabling a child to be well and fulfill their genetic potential, in terms of going to school, being part of the workforce, and contributing to society's well-being."

    Dr. Phillips of Wilton, a past president of ILADS, characterizes himself as relatively conservative in his use of long-term antibiotics. He said it was "a huge judgment" when to prescribe antibiotics. "But with sicker patients, it shouldn't be controversial at all."

    Satti, the Old Lyme physician who described herself as a traditionalist who treats her patients "with a little bit of flexibility," nevertheless has concerns about long-term antibiotics. She said she asks herself, "'OK, if I go down this path, could I do more harm than good?' These treatments are not benign. And until we understand it better, I'm not willing to take that risk."

    Meanwhile, all these conflicts involving Lyme feed the frustration of parents who say they've gone in vain from doctor to doctor and been told their child doesn't have Lyme, and who say they've been forced into becoming self-taught experts on the disease. Guilford resident Capasso said she attends medical conferences on Lyme "because I really don't trust doctors anymore." She paused. "I trust Dr. Jones."

    Feder, of Connecticut Children's Hospital, said not having an answer for patients with persisting symptoms beyond the standard course of antibiotics, whatever their cause, "is where traditional medicine lets these patients down." Yet whatever remains wrong with these patients, Lyme isn't always the case, he said. "The bias of ILADS is to make everything fit Lyme disease."

    Why the apparent intransigence to new ideas? Jones attributed it to a number of reasons, among them an "old-boy network" of doctors who talk only to each other, don't brook any criticism and "don't go outside of their box." He also believes that many establishment physicians are compromised by conflicts of interests because of their involvement with insurance and pharmaceutical companies, through consulting contracts, research, and patent applications.

    Before he turned to medicine, Jones briefly attended Boston University's Divinity School, where he met Martin Luther King Jr. He said he learned from King "to be willing to take a stand, regardless of the way others feel, as long as you were doing what was right."

    And that's how he feels about the repeated challenges to his methods by mainstream doctors. "I know I'm right," he said. "If Dr. Shapiro practices for another 20 years, he would not see as many patients as I see in a year."

    Voices of moderation in this debate are hard to find. "There are really very few practitioners that are in the middle," explained Satti.

    "To the layperson," she continued, "I could see how you'd say, 'What the heck is wrong with the medical community?' But it's not that cut and dried. It's a new disease, and we just don't understand it yet."

    There is no acquired immunity with Lyme disease, and the unique response of each person's immune system is another huge variable. In addition, new strains of Lyme are being discovered regularly - there now are more than 300 - and the effects of co-infections from the same tick bite are slowly becoming understood. That's why, more than three decades after the disease was first identified, Satti said of Lyme, "It's getting more complicated."

    She was able to take a step into one direction rarely found among those who treat Lyme. It's possible, she said, that mainstream medicine may ultimately reflect the views of the "Lyme literate" community.

    "I say that honestly thinking that these people the medical community considers quacks are probably all right," Satti said, "and 10 years from now we'll realize their aggressive approach was absolutely right."

    There have been positive developments regarding Lyme. In July, Smith, of the Lyme Disease Association, and a delegation that included four members of Congress met for the first time with CDC director Dr. Julie Gerberding. Smith said she was encouraged by the response to the dozen or so issues raised. Dr. Raphael Stricker, president of ILADS, said he's been invited to be part of a discussion on long-term therapy
  • artur737 17.09.06, 20:20
    There have been positive developments regarding Lyme. In July, Smith, of the Lyme Disease Association, and a delegation that included four members of Congress met for the first time with CDC director Dr. Julie Gerberding. Smith said she was encouraged by the response to the dozen or so issues raised. Dr. Raphael Stricker, president of ILADS, said he's been invited to be part of a discussion on long-term therapy for Lyme patients at a meeting next month of the Infectious Diseases Society of America.

    U.S. Sen. Christopher Dodd has co-sponsored a bill that, among other things, will provide $100 million over five years for Lyme research. And Time for Lyme and the Lyme Disease Association is about $200,000 short of raising the $3 million it needs to establish the first Lyme disease research center in the United States, at Columbia-Presbyterian in New York City.

    In Connecticut, Attorney General Blumenthal, is impressed by what he called "the volume of complaints" he's received from patients and doctors. Blumenthal is reviewing proposals for the next General Assembly to amend legislation passed in 1999 that requires insurance companies to provide at least 30 days of intravenous antibiotic therapy and 60 days of oral medications. Blumenthal said the law needs to be "toughened and tightened to guarantee absolute consistent and complete coverage" in regard to diagnosis, second opinions and length of care.

    None of these developments, however, will have any bearing on whether Dr. Charles Ray Jones will continue treating children with Lyme.

    `Devastating" is the word Liegner, the Armonk, N.Y., doctor, used to describe the possibility of Jones losing his license. "I think there will be hell to pay if that happens - from his patients. They're not going to take it lying down."

    Jones estimates the defense of his license over the months of hearings will cost more than $1 million. He is largely letting others solicit for and supervise his legal defense fund so he can focus on his practice, which remains all-consuming.

    During one stretch in July, he worked 14 days straight, said Sabra Hughes, his office manager. Seven-day weeks were routine, though, until Hughes persuaded him to slow down.

    Jones's staff has resorted to trickery to force time off upon him, sometimes putting a phantom patient into the appointment book at the end of a day. But even when he's not working he's nearby. A widower since his wife, Margery, died in 1994, he lives in one of the apartments in the building.

    "On Sundays, when most people are parked in front of their TVs watching football, he's downstairs working on something having to do with Lyme disease," Hughes said. "We try to get him out once in a while, feel the sun, but he doesn't believe in vacations. We're working on that, too."

    Efforts to train a successor have so far been unsuccessful. Still, Jones isn't looking for an exit strategy. Asked how long he expects to continue, he first joked "about 20 years," then added, "As long as I can, I will. I enjoy practicing. I can't see sitting around not doing it, knowing that children would be impaired."

    To accommodate two hip replacements, spinal-fusion surgery and arthritis, he wears dark track suits and black loafers rather than doctor's whites, disarmingly ambling through his office with a slight limp and a placid expression.

    On this day, Jones is examining twins he said acquired the Lyme infection through their mother's breast milk, since he said he believes she was symptomatic when the girls were born. Jones says he has treated 400 to 500 children who were born with Lyme. The CDC, however, says it has no reports of Lyme disease transmission from breast milk.

    Hailey and Gilian Raifman, 3-year-old sisters with blond curls and butterfly barrettes, have made the two-hour ride from Queens, N.Y., with their mother, Melissa, and an uncle. Because of her history with Lyme, Melissa said she was concerned about her girls when they began exhibiting neurological and behavioral problems. "One doctor told us we were chasing after ghosts. He said that I wanted them to be sick," Melissa said.

    The girls see Jones separately, each sitting on his knee as he asks them questions, before he brings them to his examining table, where they allow him to gently manipulate their limbs and joints.

    "Tris is very good," Melissa said as Jones examined Hailey. "Her pediatrician can't even go near her, she starts screaming and crying. But she has a lot of trust with Dr. Jones."

    Scenes like this are what motivate Jones's supporters to attend his hearings, contribute to his defense fund and sing his praises to anyone who'll listen.

    "The thought of him not practicing, and so many kids suffering," said Guilford resident Paula Capasso, "is unimaginable." She called his circumstances "very, very scary. What's scarier is we don't have enough doctors that are willing to treat.

    "I don't know what people are going to do."

    Gary Santaniello is an Easton-based free-lance writer. This is his third cover story for NE.
    Copyright 2006, Hartford Courant

  • artur737 18.09.06, 17:15
    The Controversy over Chronic Lyme

    www.remedyfind.com/newsletters/Aug_05_LymeDisease.html
    by RemedyFind Columnist and Lyme Disease Host - Kathleen Zabawa

    2005

    This month, I am going to write about chronic lyme disease and the controversy that surrounds it; it seems that the majority of the medical establishment thinks we don't exist. I know, I know, they are not really saying we don't exist, just that our illness doesn't. They also define us as hypochondriacs and send us off to have our heads examined and not by neurologists. These doctors could not ever have been in a room full of lyme disease sufferers and seen our obvious pain and hopeless fear, or listened, really listened, to the stories we are telling and said with a clear conscience that chronic lyme disease does not exist. Could they?

    When I was first diagnosed I was shocked and then infuriated by what I learned. There were no doctors in Houston, possibly even Texas, and Texas is a big state. No doctors were willing to treat lyme disease with more than a months worth of oral antibiotics, which left me woefully under treated and still sick, very sick. We have one of the largest medical centers in the world here. People come from foreign countries to be treated in our medical center that you can easily get lost in, and there was not one doctor who would see me. I became confused. It just didn't make sense.

    Why were there so few doctors to treat this disease? Why did people have to travel out of state and hundreds of miles to be seen by a doctor that knew how to treat this illness and was willing to do so? At first, I thought people were just being paranoid when they told me to always get copies of my tests and records. Until I got mine. The test results, even something as simple as a complete blood count (CBC) had been misrepresented.

    Bear in mind the Center for Disease Control (CDC) states that lyme disease should be a clinical diagnosis, and thus the need for a positive test should be a moot point. The insurance companies however have latched on to the high false negative tests results as a way to deny people treatment. There are, by the way many illnesses that are clinically diagnosed, in fact the majority of them are.

    Lupus, rheumatoid arthritis, multiple sclerosis, and Alzheimer's are only a few, none of which has a definitive blood test that says you have that illness. Doctors lied to me and mine repeatedly always to fit my illness into their little box. I learned that if I had an opinion they would usually disagree and go about proving me wrong instead of finding the problem. I have never had much respect for doctors although there are still good ones out there. I have even less respect now, with the exception of the few brave souls who are willing to put their practice on the line and risk losing everything by treating people who have lyme. Doctors who are guilty of actually being doctors. Doctors who cannot act in any other way in spite of the fear of what they know will happen to them, because they have a conscience and a heart. They are becoming harder to find. The issues surrounding this illness are growing as fast as the disease itself and they are forgetting that real people's lives are being destroyed while they argue about who is right.

    That still brings me back to the question of why? Is it money? Well money being the root of and all that, it still felt like there was more to it. A piece of the puzzle was still missing. That did not explain the establishments over the top reactions to simple requests for medical records.

    Recently, a man living in Alaska, politely asked for copies of his records and was given the run around for weeks. He went down in person to the clinic even though he was sick and mostly bedridden to request once again copies of the elusive records. He was told to come back that afternoon when the person who could help him would be there. He did, and was still denied access to said records. The poor man was by this time starting to lose his patience. In case you did not know, lyme people are not known for their calm demeanor, lyme rages being one of the symptoms. He finally lost it and called the doctor a record stealing nazi. Now, I thought this was quite funny, since my husband sometimes calls his pillow a nazi when it won't cooperate at night. Those at the clinic did not. They called the police and tried to have him arrested, all because he wanted a copy of his records. The police fortunately saw his side of the argument and made the clinic give him his records at which time they escorted him off the premises. He is not allowed to go back, and since he is unable to work that presents a problem, since this was the only free clinic he had access to.

    These are not the actions of a rational medical community. There is, coming from somewhere in all this, the scent of something not right. I had a doctor, a good, kind, caring man, leave the room after I asked him about intravenous antibiotics and he never came back. That's fear. Why? Who or what is behind all this? When a doctor opens up his practice to treat lyme patients he is knowingly opening up a very large can of worms.

    All of the Lyme Literate Medical Doctor’s (LLMD's) have been investigated for treating lyme patients and the overuse of antibiotics. Yet it is still ok to treat acne with powerful antibiotics for years. There are other illnesses that require the long-term use of them as well. More than one doctor has lost his license for the doing the right thing and treating these desperately ill people. There are, as we speak, only two doctors who are willing to see pediatric lyme patients. One of them has been recently removed from the rosters of Blue Cross/Blue Shield for treating too many lyme patients. Someone is bullying all of them. There is an atmosphere of fear and still something else I have yet to put my finger on. Why are they so adamant that lyme is rare and easily cured in spite of all the evidence to the contrary?

    Doctor Fallon, one of the most respected doctors in the field of Chronic Lyme Neuroborreliosis, has recently completed the first randomized controlled crossover study of chronic neurologic Lyme disease. This study was designed to analyze the response of intravenous antibiotics in patients with chronic neurological lyme disease, who have already received extensive antibiotic treatment in the past.

    The results showed that despite 2 to 3 months of intravenous antibiotics and 7 to 8 months of oral antibiotics, those with chronic lyme disease demonstrate significant abnormalities on brain Positron Emission Tomography (PET) scans, cognitive testing, and pain testing. Those that received another ten weeks of antibiotics intravenously responded with improvement in all objective parameters. Upon cessation of treatment, they relapsed. This was a double blind study, where half of the participants received the placebo, and the other half received the antibiotics. None of whom knew which they were getting. Of the half that received the placebo, not one single person showed improvement, not one. There's the proof. This is only the beginning and as my grandmother would say, it ain’t over till it's over. We aren't done yet. We are down, but not for the count. Tomorrow is still to come. I hope to continue this conversation next month.
  • artur737 22.09.06, 05:33
    Kleszcz zniszczyl kariere brytyjskiej biegaczki.
    Zbagatelizowala ugryzienie kleszcza i rozwinela przewlekla chorobe.

    How a tick bite destroyed the career of an athletics champion
    Miss Waterson says she is unable to train

    Daily Mail Reporter (British newspaper)
    Last updated 20th June 2006


    A leading athlete who ran for Britain has had her sporting

    dream shattered - by a tick.

    Kirsty Waterson's life has been turned upside down by a

    disease she picked up after she was bitten by one of the bugs

    while running in a forest.

    The long-distance runner contracted Lyme Disease, which left

    her with headaches and severe fatigue.

    But most distressing for Miss Waterson is the fact that

    athletics training can trigger setbacks in the condition.

    This has left her unable to regain her fitness - or her place

    in the athletics world.

    'I have to take it a day at a time. It makes me feel very

    tired,' said Miss Waterson. 'By 6pm I often have to go to

    sleep. I have lost a lot of weight.

    'A lot of people in the athletics world have asked "Where's

    Kirsty gone?". I am desperate to get back to my original

    fitness level. But I have tried so many times and each time I

    try, I get ill.'

    She was competing in the Suffolk Cross Country Championships

    when she was bitten and contracted Lyme Disease.

    Miss Waterson, who has run with the likes of Paula Radcliffe,

    thought little of the tiny rash which developed on her ankle

    after the Thetford Forest race in January 2004. She didn't

    see a doctor for eight months.

    When she did seek help, the doctor was baffled by the rash

    and referred her to a skin specialist. Blood tests revealed

    she had Lyme Disease.

    The illness is caused by a bacteria carried by the tick which

    is transmitted when the tick begins to draw up the host's

    blood.

    In the U. S., where it is more common, it is the Borrelia

    burgdor-feri bacteria. In the UK a related strain - Borrelia

    garinii - is predominant.

    Rash

    Typically a rash appears at the bite mark. At this stage

    victims can also experience joint pains, fever and fatigue,

    and as the bacteria spreads around the body, a stiff neck,

    facial paralysis and tingling.

    More severe symptoms can include severe headaches, painful

    arthritis and joint swelling, heart problems and even mental

    disorders such as short-term memory loss and difficulty

    concentrating.

    Antibiotics are used to treat Lyme Disease, but if the

    illness is not caught early it does not respond well to

    treatment.

    Miss Waterson, of Bury St Edmunds, Suffolk, escaped the most

    debilitating symptoms and her doctors say she is over the

    worst. However, it can recur and it has so far stopped her

    returning to the running track.

    She belonged to the St Edmunds Pacers running club and at 15

    came third in the England cross country championships. At 16

    she became South of England cross country champion for under

    -17 women.

    The same year, 1999, she came second in the England cross-

    country championships and in 2001 she ran for the Great

    Britain and Northern Ireland Under-20s women in the World

    Cross Country Championships in Dublin.

    Peter Golding, chairman of St Edmunds Pacers, said: 'This is

    a tragic shame. Kirsty was a prodigious talent - probably the

    best to have ever come out of this area.'

    Miss Waterson, who is an estate agent but is due to start

    training as a beauty therapist, said: 'My doctors say I am

    over it, but I'm not. With me it comes and goes, a bit like

    glandular fever.'

    Left with a small scar on her ankle where the tick buried

    itself, Miss Waterson wants others to avoid going through her

    ordeal.

    'Many have not heard of Lyme Disease or assume you can only

    catch it in North America,' she said. 'If they are walking or

    running in forests they should wear long trousers and long

    sleeves.

    'And if they do get a rash, they should get it checked out.

    Not getting it checked out for eight months was my biggest mistake.'
  • artur737 06.10.06, 19:11

    A twist of Lyme
    by
    Carol Hilton
    From The Medical Post 2006

    www.medicalpost.com/medicine/clinical/article.jsp?content=20060410_191552_5100

    With difficult diagnoses and heated debate, the Public Health Agency of Canada
    is trying to straighten out confusion over Lyme disease



    Toronto | Some call it the "master mimic." Some call it the fastest-growing
    vector-borne disease in North America. Others view it as a fad illness—one that
    is being over-diagnosed due to persistent lobbying.

    Lyme disease has become a polarized topic in Canada, with controversy borne of
    physicians attempting to accurately diagnose and treat the relatively rare
    condition amid patients' fears of misdiagnosis and underrecognition.

    "Fundamental disagreements have raised tensions between, on the one hand, the
    Lyme pressure groups that quite rightly are doing the best they can to ensure
    the disease is properly recognized and that people are getting treatment and,
    on the other hand, the science-based organizations that base their
    understanding on the evidence they have in front of them in terms of hard
    data," said Dr. Paul Sockett, director of the foodborne, waterborne and
    zoonotic infections division at the Public Health Agency of Canada (PHAC) in
    Ottawa.

    While the risks of incorrect diagnoses and unnecessary treatment with
    antibiotics are real, a lot has changed since Canada's Lyme disease guidelines
    were issued in 1991.

    Now, the PHAC is tackling the daunting task of assessing 15 years worth of
    conflicting and politically charged research to redefine how physicians should
    be diagnosing and treating Lyme. This is particularly important now that the
    number of recognized endemic areas has risen from one at the time the
    guidelines were produced to at least seven across Canada today. But for their
    efforts to make a difference in the proper care and recognition of the disease,
    PHAC officials will have to bridge the gap between these disparate groups to
    heal old wounds of distrust and skepticism.

  • artur737 06.10.06, 19:12

    Lyme, Connecticut

    Public action actually played an important role in the original discovery of
    Lyme disease's presence in North America in 1975. It started when a woman named
    Polly Murray contacted Yale researchers about an unusual cluster of pediatric
    arthritis cases in her small-town of Lyme, Conn.

    Dr. Allan Steere, a rheumatology resident at the time, investigated the cases
    and identified the new clinical entity as "Lyme arthritis" in 1977. The name
    was changed to Lyme disease two years later when other symptoms, including
    neurologic problems, were discovered.

    Then, in 1982, Dr. Willy Burgdorfer (PhD), an entomologist with the National
    Institutes of Health in Montana, identified the infectious agent as the
    spirochete now known as Borrelia burgdorferi, a bacterium transmitted to humans
    through the bite of certain species of ticks.

    While the disease was found in rapidly growing numbers and expanding endemic
    areas around the U.S. in ensuing years, Lyme was at first seen as a very
    limited threat in Canada. More than 20,000 new cases of Lyme were reported to
    the U.S. Centres for Disease Control and Prevention in 2003. In Canada, where
    reporting is voluntary and this activity varies from province to province, the
    total number of cases reported to the PHAC from 1994 to 2004 was 345, with a
    high of 54 cases in 2000.

    "In comparison to reported cases in the U.S., Canada's numbers are relatively
    small," said Dr. Sockett. "Also in comparison to the U.S. and the geographic
    size of Canada, we are aware of a relatively small number of areas where the
    disease has been confirmed as endemic."

    Indeed, until recently only one area with an established, breeding population
    of Lyme-infected ticks had been identified in Canada: Long Point, Ont., a
    protected nature reserve on a peninsula on Lake Erie. This made it seem
    unlikely that Lyme would be seen commonly in Canadian patients without them
    having travelled to an area where Lyme was known to occur.

    However, with the rise of the Internet and of vocal patient groups in the U.S.
    who claimed the disease was often going misdiagnosed there, more and more
    Canadians with mysterious illnesses began to think Lyme might be the answer.

    In theory, Lyme is a clinical diagnosis easily identifiable by the hallmark
    erythema migrans rash (a bulls-eye shape) in association with a tick bite while
    the person was in an area endemic for Lyme. However, not all patients have the
    EM rash. The PHAC Web site says 70% to 80% of infected patients experience it
    but other researchers stake it at fewer than 50% of the patients they've seen.

    Also, the validity of serological lab tests used to confirm diagnoses is hotly
    debated.
  • artur737 06.10.06, 19:13

    The CDC and the PHAC recommend the two-step process of an ELISA test followed
    by a Western blot, but the tests can produce both false positives and false
    negatives.

    "Blood tests may be negative in patients with early Lyme disease or in patients
    who have had antibiotic treatment," information on the PHAC Web site
    states. "However, the accuracy of blood tests for patients with later stages of
    Lyme disease approaches 100%."

    Patient advocacy

    These statements enrage Jim Wilson, the president and founder of the Canadian
    Lyme Disease Foundation, a patient advocacy group. After testing negative twice
    in Canada, Wilson suffered severe Lyme symptoms for almost three years before
    independent labs in the U.S. confirmed the diagnosis (many patients turn to
    these U.S. labs when they think they have Lyme).

    "We don't believe there's Lyme disease under every rock and stone," Wilson said
    from his home in Westbank, B.C. "We know that an awful lot of cases that are
    suspected are quite likely not Lyme disease. But at the same time we are also
    aware that they (doctors) are missing a lot of the disease."

    But the CDC issued a caution last year that a number of these commercial U.S.
    labs were using unvalidated tests or unapproved interpretive criteria. In
    Canada, most provinces do their own testing but can also send samples to the
    National Microbiology Laboratory in Winnipeg. While he agreed some labs are
    better than others, Wilson resents the skepticism both Canadian and U.S.
    physicians have for the independent U.S. testing centres, noting his
    association has a list of recommended labs on its Web site (www.canlyme.com).

    "This is a very important issue," said Dr. Sockett. "It is certainly becoming
    clear that there are issues around the serological reaction to the organism
    itself, which plays into the accuracy of the tests. But it is extremely
    important for any test utilized that the diagnostic criteria be as good as we
    can make them, that the tests are fully validated and that they have a high
    degree of both sensitivity and accuracy."

    Unfortunately, as advocacy groups' frustrations rose over strict scientific
    criteria, so did the heat some of them directed at researchers. Infectious
    disease experts felt they—and not the science—were being personally attacked
    for cautiously requiring more evidence of Lyme before blindly treating with
    open-ended antibiotics.

    To get a researcher to speak on the subject, the Medical Post had to take the
    unusual step of granting an interviewee anonymity after several declined due to
    the political pressure surrounding the disease.

    "There's a certain Lyme lobby that says Canadian physicians know nothing about
    it and they miss it and don't treat it properly," said a Halifax-based
    clinician. "Having said that, I think there are very few patients with Lyme
    disease out there who would present with a typical rash of Lyme disease that a
    physician would not at least consider it in their differential diagnosis."

    He stressed he is sympathetic toward patients who have suffered with undefined
    illnesses who believe they might have Lyme, but he said he is concerned Lyme
    has simply become a fashionable diagnosis.

    "In our society there appears to be a need to attribute these non-specific
    syndromes to specific disease entities. And whether it's chronic Epstein-Barr
    virus infection, or chronic candidiasis, environmental hypersensitivity or Lyme
    disease, it's simply the de rigeur explanation, and the medical community is
    always attacked when it raises legitimate questions about the scientific
    veracity of the evidence. . . . And in many ways it's a battle I don't think we
    can win."
  • artur737 06.10.06, 19:13

    Seen up to 30 doctors

    But some physicians consider Lyme a growing threat. Dr. Ernie Murakami, a
    family physician in Hope, B.C., became interested in Lyme after developing a
    technique to safely remove ticks. After learning more about the disease at
    conferences, he said he has now seen and treated hundreds of patients who had
    previously gone undiagnosed and untreated.

    "Many of them had seen up to 30 doctors before I saw them, and I treated them
    and they improved," Dr. Murakami said. "A lot of people are missed, and the
    longer it goes the more difficult it is to treat."

    A member of the board of directors of the Canadian Lyme Disease Foundation, Dr.
    Murakami said Lyme is called a "master mimic" because it can resemble a wide
    variety of conditions, including multiple sclerosis, rheumatoid arthritis,
    Parkinson's, lupus, ALS as well as psychiatric illnesses. He noted many of the
    patients he's seen are in the later stages of Lyme and have received a variety
    of these diagnoses, only to have the symptoms resolve when given lengthy
    treatment with antibiotics.

    Lyme caught in its early stages is usually treated successfully with a four-
    week course of antibiotics. But Dr. Murakami has found it doesn't always work
    for the complex cases he more often sees. "It was thought at one time that 30
    days of any antibiotic was enough. That may have held at one time, but that
    doesn't hold now and that's what many (refractory) cases have been treated
    with," he said. "It's very difficult to treat and everyone is different in
    their response."

    Early and late Lyme disease represent a significant dichotomy that has
    contributed to disagreements on treatment and the prevalence of Lyme, according
    to Dr. Brian Fallon, director of the Lyme Disease Research Program at the New
    York State Psychiatric Institute. He said academic physicians by nature will
    tend to focus on early Lyme, where the diagnosis is reliably made based on the
    EM rash, and 99% of patients will improve and not experience chronic symptoms.

    "So you won't believe chronic Lyme is a real issue, and the people who don't
    have the EM rash will never come to see you because you focus on the EM rash.
    So you'll never see the chronic Lyme patients and if you do, you'll ask them
    about the rash and they won't have had it, because if they did they would have
    gotten help and not have symptoms now. It's a Catch-22 situation in which those
    who spend their career focusing on early Lyme disease don't know much about
    late disease, and vice-versa."

    In looking to the future, Dr. Fallon said he thinks diagnostic tests will
    improve significantly in the next several years, but advances in treatment will
    take longer. "Treatment studies are massively expensive and take a long time to
    do," said Dr. Fallon, who is also an associate professor of clinical psychiatry
    at Columbia University in New York. "There aren't going to be many treatment
    studies of chronic Lyme disease, so that will mean debate about the treatment
    is going to continue for some time."

    The PHAC's Dr. Paul Sockett agrees that a lot of issues around Lyme have
    evolved slowly over the years, "but it is becoming increasingly clear to us
    that there are changes in things like the ecology of the disease in this
    country. There obviously are issues and concerns within the public arena about
    the diagnosis of this disease. . . . So these are the sorts of things that have
    prompted us at this point in time to say, 'Yes, now we need to update the
    guidelines.' "
  • artur737 06.10.06, 19:14

    Risk of contracting Lyme

    Recent government research has revealed the risk of contracting Lyme disease in
    Canada, while still relatively small, is actually greater than it was thought a
    couple of years ago.

    One study of climate change suggests warming trends will favour a northern
    range expansion in Canada of the main Lyme vector, the black-legged tick Ixodes
    scapularis (in B.C. the vector is the western black-legged tick, Ixodes
    pacificus). But even more significantly, PHAC scientists have discovered there
    are more endemic areas of black-legged ticks than previously known, and ticks
    could in theory be transported anywhere in Canada by migratory birds.

    Dr. Robbin Lindsay (PhD), an entomologist based at Health Canada's National
    Microbiology Laboratory in Winnipeg, first studied the limited population of
    Lyme-bearing ticks at Long Point, Ont., in 1989 when it was thought to be the
    only endemic area in Canada. Since then, he's identified breeding populations
    in Ontario's Point Pelee National Park and Rondeau Provincial Park; several
    areas of B.C., including parts of Vancouver Island, throughout the Fraser
    Valley and into the Okanagan Valley; in Lunenburg, N.S., and a possible new
    site of the ticks identified in the fall of 2005 in Bedford, N.S. There were
    also three surprising cases of Lyme diagnosed in southeastern Manitoba last
    year, but in those cases it was suspected that ticks had been "parachuted in"
    on migratory birds rather than newly established populations.

    However, Dr. Lindsay explained that while it is now theoretically possible for
    a person to contract Lyme anywhere in Canada, not all ticks are infected with
    the Lyme bacterium. He said the highest infection rate among the ticks is in
    the Long Point, Ont., population, where 50% to 60% are positive, while at Point
    Pelee the rate is 5%. In the Lunenburg population, about 27% of the ticks
    tested positive. And based on ticks sent in from non-endemic areas, only about
    10% are infected with the spirochete. In B.C., while the western black-legged
    tick is more widespread, the infection rate in these ticks is only 1% to 3%.

    "Things really have changed in the last 15 years with respect to distribution
    of this tick, and are likely to change more in the future," said Dr.
    Lindsay. "So we try to let people know as best we can that there's a potential
    for them to come in contact with these ticks, but I'm not absolutely sure of
    the level of awareness out there."

    According to Jim Wilson, current awareness of Lyme is insufficient. He said he
    frequently gets calls from individuals who are dismissed by their physicians
    when they ask about Lyme disease as a possible explanation for their
    symptoms. "I recently heard from one young lady from North Battleford, Sask.,
    who spent three years in the bush on a wildlife course, banding ducks and
    geese. Two years ago she got sick and exhibited symptoms of Lyme or MS, and was
    given a cursory diagnosis of MS. When she asked the doctors about the
    possibility of it being Lyme-related, she was told by the neurologist that Lyme
    disease is an American disease. And her family physician laughed,
    saying, 'Unless you've been to Long Point, Ont., you don't have Lyme.' No tests
    were ordered or anything."

    This is where good communication would help ensure that the public and the
    medical profession are getting the right information, said Dr. Sockett. While
    some provincial health ministries have fact sheets available on their Web sites
    and even mail out reminders to physicians each season, the PHAC felt it was
    time to get the various interest groups together for open discussion. So the
    PHAC hosted a two-day meeting in Toronto in early March with all of the
    stakeholders.

    Before the event, Dr. Sockett said it would be an opportunity to "talk about
    these issues, try and identify where the gaps are in our knowledge, rather than
    have them as confrontation points, and identify them as research needs that
    need to be addressed by the scientific community as a whole."

    After the conference, Dr. Sockett said the meeting provided an excellent
    opportunity to review new information about Lyme disease ecology in Canada and
    to address issues related to the 1991 guidelines. "Discussion groups made a
    number of recommendations for changes to the existing guidelines and identified
    specific gaps which will need to be addressed through ongoing and new research.
    Not all issues were solved, but it was agreed we would put in place a process
    to complete the revision of the guidelines and maintain dialogue on Lyme
    disease issues."

    For Wilson, he said while he was glad the conference had taken place, he was
    disappointed the groups could not reach a consensus on a satisfactory clinical
    definition of Lyme disease. "But what we did accomplish and agree on is that
    these ticks can be found anywhere in Canada."

    At the conference, Dr. Harvey Artsob (PhD), chief of the PHAC, said there's no
    question there has been a spread of established Lyme areas. "The issue of Lyme
    will only become greater. It is a rare disease but it is preventable and
    treatable. We need to help people better understand it and help physicians to
    understand the risk."

    The revised guidelines are expected to be released later this year.
  • artur737 06.10.06, 19:59
    i do tego dolaczam pozniej wydrukowany komentarz-list.

    W sumie tego nawet nie tlumacze, bo to w zasadzie ciagle to samo, stare przepychanki w ramach wojen boreliozowych: raz jedni gora, raz drudzy. Moze dla kogos beda ciekawe z punktu widzenia jak temat zostal opracowany (a nie co bylo tematem) albo kiedys zainteresuje sie tym jakis historych lub socjolog.


    Letter to the editor: Time to get up to speed on Lyme disease diagnosis

    Re: “A Twist of Lyme” (the Medical Post, April 11).

    I am glad our governments and medical institutions are finally starting to take Lyme disease more seriously, as it is a real disease and it is on a much larger scale than anyone is willing to admit. I have this bad feeling that it is mostly due to the fact that we have been treating patients for the wrong diseases for years.

    My family has been hit hard by Lyme, and when we suggested the possibility of it to many doctors who should be specialists in this area, we were scoffed at.

    It really does not matter at this point who did or said what, but it is certainly time to get some good dialogue going between the money people (governments and medical associations) and the ones who really do know this disease—the patients.

    When I was finally diagnosed by my Lyme-literate MD (LLMD), my youngest son had the classic target rash from a bite on his face. We took him to our local walk-in clinic, which we have used many times. We presented our case, indicating we suspected Lyme disease, and even with the rash, we were told Lyme disease does not occur here; it must be a spider bite. We were given a prescription for only five days of antibiotics, when it should have been written for four weeks. Luckily I took photos of the bite site and showed them to my LLMD. He did not hesitate to say, “Get your son in here right away. That is Lyme disease; there is nothing else that looks like it.”
    On the topic of laboratory testing, I personally have had the Canadian ELISA test four times and tested negative each time. The more specific Western Blot series was not available to me here in Canada, no matter how many times I asked. The reason given is you first must test positive to the ELISA screening (as pointed out in your article), which is totally useless in diagnosing chronic Lyme disease. Stating these blood tests are almost 100% accurate in later-stage Lyme disease is uneducated. Everyone I know who is now being treated for chronic Lyme has never tested positive wih ELISA.

    With Western blot testing, I was found to be equivocal, with definite Lyme markers. My oldest son also had this same result. Combined with our clinical symptoms, this was enough proof for our doctor to initiate treatment.

    You reference lobby group concerns about doctors in Canada not having adequate knowledge regarding Lyme—this is an absolute fact. I have seen dozens of doctors over the years. Not once did any of these specialists ever investigate this possibility, even when repeatedly asked to do so.

    Jim Wilson is absolutely correct about the fact there are no warnings for Lyme disease anywhere except areas like Long Point. What about the rest of the country? Why are we keeping this a secret?—Keith Poullos, RR#1 Limehouse, Ont.
  • artur737 15.10.06, 02:16
    Steszczenie jego zyciowych dokonan, publikacja przewodnika do leczenia, wystep w kongresie, walka o utrzymanie licencji lekarskiej.

    World Renown Lyme Disease Doctor Retires, Research Begins

    by Susan Williams

    A major chapter in the history of Lyme Disease will draw to a close this November with the retirement of Dr. Joseph James Burrascano, Jr., a pioneer in the diagnosis and treatment of chronic tick-borne infections.

    "Dr. B", as he is affectionately referred to by his patients, has practiced medicine in East Hampton, New York, for over twenty-five years, and has treated thousands of Lyme patients from all over the world. Considered one of the world's leading experts on Lyme and associated tick-borne diseases, he is the author of one of the most well-known and widely-followed treatment protocols in the U.S. today.

    Dr. Burrascano received the Distinguished Physician Award in 1998. A founding member of the International Lyme and Associated Diseases Society (ILADS), he continues to serve on its board as First Vice President. He also serves on the Medical Advisory Board for the non-profit "Turn The Corner Foundation" (www.turnthecorner.org), which is dedicated to the support of research, education, awareness and innovative treatments for Lyme disease and other tick-borne diseases. He has lectured on Lyme both nationally and internationally, and has even addressed Congressional committees and the military on the complexities of Lyme disease. He is published in numerous medical journals and magazines, and has been interviewed frequently for several major television networks and print media.

    Yet, in Dr. Burrascano's eyes, his many outstanding achievements have not filled a large need that still exists. He explained, "I have become more and more frustrated of late, because I have had to turn away up to ten prospective patients a day - clearly, more Lyme-literate physicians are desperately needed. I feel that my experience with the management of patients with tick-borne illnesses would be better served by my spending more of my time on physician education and on completing my current, very important, research project. I want, once and for all, for the ILADS point of view to be the recognized standard for all professionals. I also wish to remain active in the political realm, as political reform and a more realistic view of our illnesses have to be addressed at the government and public levels."

    His success has not come without much opposition and trial. Dr. Burrascano has a great deal of experience in the political and governmental arenas, due to his own legal battles for the right to treat chronic tick-borne illnesses with long-term medical treatments.

    There are many who believe that the legal attacks on Dr. Burrascano were begun in retaliation for his public comments against the Department of Health and Human Services' (DHHS) agencies. "The reasons behind the charges against me are likely a result of my willingness to expose the true status of Lyme research," Dr. Burrascano observed. "Shortly after publicly airing my grievances, I received notice that I was being investigated for medical negligence."

    Those grievances were aired at a 1993 Senate committee hearing on Lyme research. Dr. Burrascano boldly testified of "many serious improprieties" among NIH and CDC Lyme disease grant recipients, including funding that was being redirected to rheumatologic and arthritic problems rather than Lyme. Additionally, some of those grant recipients had serious conflicts of interest because they worked as paid medical consultants for insurance companies. Burrascano also implicated a major group of university-based researchers in working with government agencies to inappropriately influence the agendas of Lyme disease meetings.

    Only two months after his courageous testimony, the New York State Department of Health's Office of Professional Medical Conduct (OPMC) notified Dr. Burrascano that he was being investigated for an "anonymous" complaint that had been filed against him. In 2000, the OPMC charged Dr. Burrascano with allegations of medical misconduct stemming from the use of long-term antibiotic therapy. The OPMC had previously investigated numerous other Lyme physicians, often resulting in fines and having the physicians' medical licenses restricted, suspended, or revoked. The unjustified OPMC procedures were based on erroneous claims that a mere few weeks of antibiotics were sufficient to effectively cure all cases of Lyme disease, in spite of contradictions by numerous research studies. Many of these attacks on Lyme physicians appear to have been initiated by health insurance companies who want to avoid paying the expenses of long-term medical treatment in spite of its appropriateness.

    The Lyme community quickly responded to the charges against Dr. Burrascano by planning a rally at New York City's Plaza Hotel and hosting letter-writing campaigns, visits to legislators and contact with media. Hundreds of patients from across the country rallied to Dr. Burrascano's side to show their support and called on legislators to hold public hearings to investigate multi-state harassment of Lyme doctors. Physicians from all over the nation, as well as Switzerland and Germany, signed a petition in support of Dr. Burrascano that was presented to state officials. These fellow physicians referred to Dr. Burrascano as "an international leader in establishing comprehensive medical and ethical standards for the diagnosis and treatment of chronic illnesses."

    The original decision handed down by the hearing panel in November of 2001 not only exonerated Dr. Burrascano from the charges, but also criticized the OPMC for attempting to prosecute a medical debate rather than actual medical misconduct. An excerpt from their decision remarked, "The Hearing Committee recognizes the existence of the current debate within the medical community over issues concerning management of patients with recurrent or long term Lyme disease. This appears to be a highly polarized and politicized conflict, as was demonstrated to this committee by expert testimony from both sides, each supported by numerous medical journal articles, and each emphatic that the opposite position was clearly incorrect. What clearly did emerge however, was that the Respondent's approach, while certainly a minority viewpoint, is one that is shared by many other physicians. We recognize that the practice of medicine may not always be an exact science, 'issued guidelines' are not regulatory, and patient care is frequently individualized."

  • artur737 15.10.06, 02:17
    The OPMC attempted to file an appeal and, in April of 2002, that appeal was refused by the Administrative Review Board who agreed with all of the findings of the original hearing panel.

    Dr. Burrascano noted, "Both the Appeals Board and the Hearing Committee favored me and had no problems with my methods in managing Lyme disease. They succinctly stated that it is not the role of the OPMC to pass judgement on what is a scientific debate in the medical community, and how I treat Lyme is not a matter of professional misconduct or competency... They posed no restrictions on my practice, no restrictions on how I manage my cases and, in their written decision, the Committee was quite complimentary."

    "I definitely would not have gotten through this if it was not for all the support I received," he continued. "I realize quite clearly that this case represented far more than just me - it represented the truth of Lyme, uncovered the dirty tricks that have been played against Lyme patients and LLMD's (Lyme-literate medical doctors), and helped to focus all of us and propel us into a great, gigantic push for our rights. The bigger good has been all the positive activity that my case has generated - politically, in the media, and most importantly - we are now a force to reckon with. Truly, we have not gone away, and we never will go away."

    "All of us have to really raise the bar now on our reform activities because, until State Medical Boards are revamped, all of this can and will happen again, and anyone, including me, can still be harassed. We must stay focused, remain a single-minded unified force, and move ahead with our efforts to get our knowledge of the truth of Lyme disease to ALL health practitioners so Lyme will be better recognized and treated. Most of all, we cannot let the creeps keep any of us from getting the treatment we need to prevent worsening disability."

    Dr. Burrascano assured, "My decision comes at a good time for me personally. I feel well, my prostate cancer seems to be in a remission, and I have not had any bad news from the state Medical Board lately. In other words, this decision has not resulted from any secret problem that I am trying to hide. Of course, rumors will fly, but I say sincerely to all of you that there is no hidden agenda."

    Although the news of his retirement has deeply saddened many of his patients and colleagues, there is a tremendous amount of support for Dr. Burrascano in his future endeavors.

    "It is the revolutionary work of people like Dr. B which stops me in my tracks. I stand in awe for the compassion he has, the courage he shows for needy people looking for shelter in the rain, and his incredible contributions to science... He deserves more than the support and praise we give him. He deserves for history to record him as one of the great scientists of the late 20th and early 21st centuries," asserted Geoff Wiggins, a Lyme patient in North Carolina.

    Sandy Berenbaum, LCSW, is a Lyme-literate psychotherapist in New York who learned about Lyme the hard way. "I went undiagnosed from 1984 to 1990, with severe migraines and psych symptoms. I went to at least 5 doctors, including the heads of two NYC headache centers. After being diagnosed in 1990 in Poughkeepsie, I was referred to Dr. B by a doctor friend who was a new patient of his. Dr. Burrascano treated me for the next four years and my Lyme eventually resolved. His care, compassion, upbeat nature, and hopefulness, were a part of his brilliant diagnosis and treatment."

    "One year after he first saw me, I 'diagnosed' my first kid with Lyme. He was a 15 year old who was experiencing psychotic symptoms who came to me for counseling. I recognized Lyme in this young man, and his parents allowed me to point them toward a 'second opinion' when their family doc said it wasn't Lyme. That started my venture into the world of Lyme disease as a professional," Berenbaum recalls. "My point, aside from my love, respect and appreciation for Dr. B, is that his gift to me of restored health led to my gift of my services and expertise to the Lyme community. Each patient that Dr. B (and our other Lyme doctors) treats successfully leads to more good, in and out of the Lyme community. Each patient who is turned away by the ignorant Lyme-denying doctors is another patient, and sometimes whole family, that becomes a burden to society."

    Jeannine Phillips, a Lyme patient in New Jersey, declared, "We, as a community, have been blessed by the courage and focused determination that Dr. B. has always displayed with respect to tick-borne diseases and the patients who suffer from them. We can all trust that the same gentleman who has stood up for Lyme patients all these years, and under the most difficult of circumstances, can continue to do this, but in a more elevated manner and in a manner which, in his wisdom, he thinks is best. This news is good news for us all, and we can trust, respect, and support his decision."

    Phillips, like so many of Dr. Burrascano's patients, is searching for a way to express heartfelt thanks to a man who has done so much. "What would be the equivalent of a coast-to-coast standing ovation?" she wondered. "Perhaps a thank-you donation to the nonprofit group that supports his work, the 'Turn The Corner' foundation. This is what I am going to do, anyway. I hope to hold a garage sale with other patients in my support group, and the proceeds of the sale will be designated to specifically fund Dr. B's research. I think this would be a fitting tribute to his work over the years on behalf of ALL Lyme disease patients, not just his own. This would be just a small thank you for a big effort on his part all these years."

    Thus, while one chapter in the history of Lyme disease draws to a close, a new and perhaps even more exciting chapter is just beginning.

    "I am grateful to all those who have stood behind me over the years, and I will always be thinking of you - that is the point behind my decision," Dr. Burrascano concluded. "I hope that my future efforts on the behalf of the Lyme community will continue to be as fruitful and personally rewarding as they already have been."
  • artur737 16.10.06, 04:24
    Tekst z New York Times, ciekawe, bo do tej pory ta gazeta byla bardzo wredna jezeli chodzi o traktowanie boreliozy. To ona kiedys zaczela nagonke na laboratorium Igenex. Niby afera zakonczyla sie kleska reportera, bo spowodowana artykulem kontrola Igenexu wykazala wysoka jakosc pelnionych uslug.
    Obecny artykul to zmagania chirurga, ktory z uwagi na koeinfekcje boreliozy rozwinal bardzo szybka forme choroby tak, ze wsadzono go nawet na respirator. Wyciagneli go z tego doksycyklinka, a przy okazji napisali, ze jakie koinfekcje w boreliozie sie zdarzaja. Czyli ogolnie dobra robota, zwlaszcza jak na New York Times smile

    New Tick Disease Almost Claims Surgeon

    By ANDREW C. REVKIN
    The New York Times

    A surgeon from Rockland County nearly died in intensive care last month at a Manhattan hospital, and blood tests have found that he was suffering from two tick-borne infections, the all-too-familiar Lyme disease and a sometimes lethal illness caused by a newly identified bacterium, his doctors say.

    The case, the first in Rockland County involving the new bacterium, is the most serious instance of tick-transmitted illness reported in New York State this year, state health officials said.

    Like Lyme disease, the newly noted infection, human granulocytic ehrlichiosis, or H.G.E., is transmitted by the diminutive deer tick. But while Lyme typically develops at a slow pace, H.G.E. can produce a sudden storm of severe flulike symptoms, said Dr. Rosemary Soave, an infectious disease expert at New York Hospital-Cornell Medical Center, where the Rockland man was treated.

    When someone is infected with both organisms, the resulting illness may be intensified as each microbe assaults different parts of the body, Dr. Soave said. This may explain the severity of the Rockland case, she added.

    Within hours of admission to New York Hospital on June 24, the patient, an otherwise healthy, 55-year-old man with no history of major illness, had to be put on a respirator, and a temporary pacemaker had to be implanted to keep his heart beating properly, Dr. Soave said.

    Recalling his first hours in the hospital, the surgeon, who insisted on anonymity to preserve his privacy, said: "As a physician, you pick up cues, so I was getting quite apprehensive. I knew I was in trouble."

    His blood pressure dropped, his temperature rose to 106 and he was racked by what Dr. Soave described as "intimidating chills" in which his body shuddered uncontrollably.

    Although the patient could not recall a tick bite, his blood tests showed telltale signs of H.G.E. infection, particularly low counts of platelets and white blood cells, Dr. Soave said. And the patient had noted that he lived in a wooded area and frequently removed ticks from his children and dog.

    Once he was treated with doxycycline, an antibiotic, his symptoms began to subside, the patient said, adding that doctors have since given him a clean bill of health. "As you enter middle age, you start to anticipate the diseases of middle life," the surgeon said. "This was an unexpected detour."

    Along with the regular summer flood of Lyme infections that occurs as people range through the fields and woods that harbor the deer tick, state health officials have confirmed 12 cases of H.G.E. so far, including the Rockland case. Nine of those were in Westchester County and two in Putnam County, said Dr. Dale Morse, director of epidemiology for the State Health Department. In four cases, patients were hospitalized.

    More than two dozen additional cases from Westchester and Putnam are suspected, but not yet confirmed, said Dr. J. Stephen Dumler, a pathologist at the University of Maryland School of Medicine, whose laboratory is conducting the DNA tests for the bacteria.

    H.G.E. is of particular concern because it has caused at least four deaths in the fewer than 70 cases identified nationwide, said Dr. Johan Bakken, an infectious disease specialist at the Duluth Clinic in Duluth, Minn., who has been monitoring the spread of the disease since he noticed the first cases in 1991.

    In contrast, Lyme disease has afflicted tens of thousands of Americans, but has been implicated in at most two or three deaths, researchers said.

    In addition, Lyme responds readily to a variety of antibiotics while H.G.E. responds only to doxycycline and tetracycline, researchers said. And while most Lyme cases are signaled by a telltale bull's-eye rash, H.G.E. infection usually is revealed only through blood tests.

    The State Health Department has scheduled an Aug. 9 meeting of county health commissioners from the suburbs of New York City, along with Connecticut health officials, to review cases of H.G.E and other tick-borne infections, Dr. Morse said.

    The Rockland case seems to fit an emerging pattern in which some severe or long-lasting cases of tick-borne disease turn out to be the result of simultaneous infections with two or even three types of microbe, said Dr. David Persing, the director of molecular microbiology at the Mayo Clinic in Rochester, Minn.

    Along with Ehrlichia bacteria and the Lyme spirochete, a third infectious agent is sometimes carried by the deer tick. Called Babesia microti, the other microbe is a relative of the parasite that causes malaria. Symptoms of infection with Babesia, including weight loss, fever and chills, overlap with those of Lyme and H.G.E., Dr. Persing said.

    Dr. Persing said that eventually, as more is learned about Babesia and Ehrlichia, the disease now known as Lyme may come to be perceived as a complex, rather than a discrete disease caused by a single pathogen.

    "When you get these agents together, this may make Lyme disease worse, and perhaps less treatable," he said.

    Adding to the challenge facing doctors, he said, is the fact that each disease responds best to different antibiotics. "What we'd love to have is something you might call tickicillin," Dr. Persing said.

    For now, he said, the best defense is to avoid ticks, and for doctors to study symptoms carefully and choose the appropriate drug.
  • artur737 31.10.06, 16:43
    Lyme disease groups upset by new guidelines
    Infectious disease group says only ‘bulls-eye rash’ good for clinical diagnosis

    The Star
    www.stardem.com/category.asp?paper=1&cat=1
    By STEVE NERY
    Staff Writer
    October 31, 2006


    CENTREVILLE — While National Lyme disease patient advocates are protesting the
    Infectious Disease Society of America’s new diagnostic and treatment
    guidelines, a group of Maryland advocates recently resigned from a state Lyme
    disease subcommittee largely because of the state’s support for the new strict
    guidelines.

    The Infectious Disease Society of America’s (IDSA) new guidelines were
    published online earlier this month after being approved in late August. Many
    Lyme advocates had objected to the IDSA’s previous guidelines for being too
    strict and outdated, and are even less happy with the new set.

    While erythema migrans, or the “bullseye rash” that appears on some patients,
    is enough for a clinical diagnosis, according to the new IDSA guidelines,
    nothing else is. The IDSA recommends blood testing, which has been found
    unreliable by many studies, while the Centers for Disease Control had been
    recommending clinical diagnosis.

    Lyme disease is caused by the bacteria Borrelia burgdorferi, transmitted
    through tick bites. Less than half of all infected people recall the tick bite,
    according to the International Lyme and Associated Diseases Society (ILADS),
    and more than half never develop the bullseye rash.

    ILADS President Dr. Raphael Stricker wrote a letter to Dr. Sherwood Gorbach,
    editor of “Clinical Infectious Diseases,” which also published the IDSA
    guidelines, demanding a retraction of the article. Stricker wrote that the
    guidelines were written by a biased, one-sided group and threaten to harm
    patients and patient care, according to U.S. Newswire.

    Pat Smith, president of the Lyme Disease Association (LDA), also issued a “call
    to action” for people affected by the disease. “Effectively banning clinical
    discretion and classes of drugs, alternative treatments and even supplements
    for any manifestation of Lyme” is reprehensible, Smith wrote in a letter to
    Lyme groups across the nation.

    The LDA started a petition in protest, available on the group’s Web site at

    www.LymeDiseaseAssociation.org.

    The new guidelines “take the place of a long-standing policy of deference to
    the clinical discretion of the treating physician in both diagnosing and
    treating the disease,” the petition reads.

    In Maryland, four patient advocates resigned from the Department of Health and
    Mental Hygiene Lyme Disease Advisory Subcommittee in mid-October. Lucy Barnes,
    director of the Lyme Disease Education and Support Groups of Maryland, said she
    was initially hopeful about the role patient advocates might play on the
    subcommittee, which met three times beginning in October 2005.

    “We went in there with big hopes that we could educate and make a difference
    for people with Lyme, but right from the beginning, it didn’t look promising,”
    Barnes said.

    “We’re not quitting because we’re mad,” she added. “We’re quitting because it’s
    a brick wall in front of us.”

    Barnes said she and other advocates hoped to get the state to support
    more “patient-friendly diagnostics.”

    Johns Hopkins University published a study last fall rating conventional Lyme
    disease testing methods — especially the common two-tiered blood test —
    as “unreliable,” one of many studies questioning the accuracy of traditional
    diagnostic methods. Ironically, Hopkins has been criticized by Lyme groups for
    failing to adequately address the disease itself.

    “Although the laboratory testing for diagnosis of Lyme disease is improving,
    the degree of sensitivity needed for a high level of assurance at the time of
    early Lyme disease is still not obtainable, even through combinations of
    various laboratory tests,” the Hopkins report concluded. “Thus, clinical
    suspicion based upon well-recognized cardinal features of Lyme disease is still
    the most appropriate approach.”

    Barnes said there are better testing methods and treatment guidelines out
    there. IGeneX, a California testing lab, has developed alternative tests, while
    ILADS has diagnostic and treatment guidelines online at www.ilads.org.

    Nearly 500 people showed up at Chesapeake College earlier this year when ILADS
    guidelines author Dr. Joseph Burrascano Jr. spoke at a Lyme disease symposium.

    “It’s like using leeches instead of modern lab equipment to draw blood,” Barnes
    said of the IDSA guidelines, adding she believes it will set them back 20 years.

    There’s no money going to fight the disease, she added.

    “A handful of chronically ill people can’t do it alone,” she said.

    Barnes said she is hopeful legislators will take steps to fight a growing
    regional problem. Lyme disease advocates have received support from some local
    politicians, including U.S. Rep. Wayne T. Gilchrest, R-Md.-1st.

    Barnes said different people, including a man from an insurance company, showed
    up to the three DHMH subcommittee meetings. Other members included DHMH workers
    and veterinarian staff workers. Two of the four Lyme disease patient advocates
    were allowed to attend each subcommittee meeting.

    Barnes said she continues to get several calls a day from people looking to get
    treated and people who haven’t been cured. She has spoken to people who have
    been denied treatment based on the new IDSA guidelines, she noted.

    According to the IDSA, a doctor can administer a single dose of doxycycline
    after a tick bite as a preventative measure if the doctor can identify the tick
    as a certain species, if it is within 72 hours of tick removal and if the rate
    of Lyme infection among ticks in the area is higher than 20 percent.



    Barnes said one pill is not enough for prevention, and questioned how many
    doctors can accurately identify ticks. She also said she believes the IDSA
    recommends doxycycline rather than other more effective drugs because it is
    much less expensive.

    The IDSA guidelines also state that a few weeks of antibiotics produces a
    highly favorable outcome, and urges doctors not to administer alternative
    treatments, while Lyme support groups favor treatments on a case-by-case basis.
  • artur737 10.11.06, 21:52
    Czasopismo Forbes kilka tygodni temu wslawilo sie tym, ze wydrukowalo entuzjastyczny artykul o tym jak to w koncu wszystko jezeli chodzi o borelioze sie wyjasnilo dzieki nowym wskazowkom z IDSA.
    Czasopismo zostalo przywolane do porzadku wieloma listami oraz m.in. listem autora tego wpisu.
    Wiec siegnelo glebiej i zbadalo sprawe ponownie. Rezultatem tego jest zupelnie inny artykul z kompletnie innym przeslaniem. Milo na przyklad przeczytac w prasie o duzym zasiegu, ze jeden z autorow wskazowek IDSA zostal ochrzczony przez pacjentow tytulem DR.SMIERC i ze artykul ostatnie slowo podsumowania dal DR. Strickerowi z ILADS.

    New Lyme Disease Guidelines Spark Showdown
    11.09.06,

    THURSDAY, Nov. 9 (HealthDay News) -- Battle lines have been drawn over new clinical guidelines on spotting and treating Lyme disease.

    Depending on whom you talk to, the new recommendations from the Infectious Disease Society of America are the "best that science has to offer" on the illness, or a medical "travesty" that will lead to the suffering and even death of those affected by the tick-borne disease.

    The former view is held by Dr. Gary Wormser, the infectious disease specialist who chaired the panel that drew up the new guidelines, which are published in the November issue of Clinical Infectious Diseases.

    Specifically, the updated IDSA recommendations -- the first since 2001 -- state that "95 percent of cases of Lyme disease are cured with 10-28 days of oral antibiotics."

    They also state that there is currently no credible scientific evidence that infection with Borrelia burgdorferi -- the tick-bone bacteria that cause the painful illness -- extends much past this period in patients who are treated soon after diagnosis.

    That runs counter to the notion, held by many, that longer-term, "chronic" Lyme disease exists as a clinical condition.

    The guidelines also strongly object to the use of antibiotics in patients beyond those 30 days, since long-term antibiotic treatment comes with its own medical risks.

    While there's no rule that physicians must follow IDSA recommendations when treating Lyme disease, insurance companies often base their treatment coverage on these types of guidelines. State medical boards might also consult the recommendations when reviewing alleged malpractice cases.

    All this means that "patients are now contacting us in droves all the time about their inability to get treatment," said Pat Smith, president of the New Jersey-based Lyme Disease Association, which represents 24 patient-advocacy groups across the United States.

    Smith and other patient advocates are vociferous in their opposition to the IDSA guidelines. They argue that the recommendations are based on an incomplete, biased review of the science and fly in the face of observed clinical outcomes.

    "I will tell you that from my experiences with tens of thousands of people from across the country, these chronic patients are helped by antibiotics," said Smith, who has two daughters affected by Lyme disease. "If they are helped by antibiotics, they should be allowed to have them."

    Instead, she said, insurance companies are citing the recommendations as they cut off many patients' access to treatment.

    Dr. Raphael Stricker is a San Francisco Lyme disease specialist and president of the International Lyme and Associated Diseases Society (ILADS) -- the largest medical organization devoted to Lyme illnesses. His group recently sent a letter to Clinical Infectious Diseases, asking that the journal retract the IDSA guidelines.

    Stricker said he routinely ignores the guidelines in his own practice. But he added that he is able to do so because California has laws in place that protect physicians "who want to treat according to their own best judgment." Most states do not have such laws.

    "So, if I were practicing in another state that did not have this protection, I would be very scared right now because of the IDSA guidelines -- I might be brought up before the board," Stricker said. "I think the guidelines are definitely having a chilling effect in the rest of the country."

    Smith said she's also heard "from several people whose insurance companies have cut them off [from treatment] without anything but pointing to the new guidelines."

    But Wormser said his group based the new recommendations on solid evidence.

    "We looked at almost all the science that we could find on the subject," said Wormser, who is chief of infectious disease at New York Medical College, in Valhalla, N.Y. "In the guidelines, we actually cite over 400 studies."

    He said the evidence from all this data was clear: There is no good evidence that Borellia bacterial infection persists past the first few weeks of treatment. That means that the risk to patients of long-term antibiotic therapy is unwarranted.

    He also pointed to studies that show that people with a prior Lyme infection are no more likely than others to develop long-term problems.

    Wormser stressed that he and his colleagues do not deny that the symptoms patients complain of are real. However, instead of labeling these symptoms "chronic Lyme disease," Wormser prefers "post-Lyme syndrome." The distinction is an important one -- similar language has long been used to describe individuals who were once stricken with polio and who go on to develop a constellation of long-term symptoms called "post-polio syndrome," for example.

    Wormser said intensive research is needed to determine what causes debilitating, long-term symptoms in patients with no trace of Borrelia in their cells. Right now, he said, doctors don't even agree on what symptoms characterize long-term illness. "How do you know when a person has it? What definition is there for it?"

    According to Wormser, long-term sufferers complain of a wide variety of symptoms, many of which can be caused by other ailments.

    "So, if you don't rely on some other test method -- just on your own [physician] intuition -- you can't possibly diagnose it correctly," he said.

    Stricker takes another view, however.

    "I have over 900 Lyme patients, and there is actually a lot of consistency in the type of symptoms patients have," he said. "So, my response to Dr. Wormser is that when you have a lot of clinical experience treating patients, you see patterns and you understand that things are treatable."

    Stricker also contends that the IDSA panel did not, as Wormser claims, survey "all" the literature on Lyme disease. He said that, since the disease first emerged 30 years ago, more than 18,000 papers have been published on the illness. "He just looked at all the studies that he considered significant -- that's about 2 percent of the literature," Stricker said.

    The IDSA guidelines do include one important disclaimer: A note that the recommendations "are not intended to supplant physician judgment with respect to particular patients in special clinical situations."

    But critics called the disclaimer little more than window-dressing.

    "That's not the way the guidelines are going to be interpreted," said Tom Forschner, executive director of the Lyme Disease Foundation, another patient-advocacy group. "Docs and insurance companies are going to look at [certain treatments] and say, 'Well, that violates the IDSA guidelines, therefore you are not going to be reimbursed or treated.' And that's where patients will suffer."

    A Web search on Wormser quickly turns up scathing epithets from detractors who call him a "mass murderer" and "Dr. Death." Wormser said he's been puzzled by the animosity the guidelines have generated.

    "We're not trying to do anything evil, we're actually very concerned about these patients' symptoms," he said. "We really encourage people to do further studies to find out what's causing this."

    But Stricker believes the IDSA panel ignored the collected evidence and has now boxed itself into a kind of intellectual corner.

    "At this point, it's really just
  • artur737 10.11.06, 21:53
    "At this point, it's really just politics," he said. "Politicians don't want to admit that they are wrong, and these guys don't want to admit that they are wrong, either."
  • artur737 16.11.06, 21:35
    From The Ubbysey
    Lyme disease diagnosis in review
    November 14, 2006
    by Hilary Onas

    Researchers are currently reviewing a study hoping to improve Lyme disease (LD) education and awareness.

    LD is an infectious tick-borne disease caused by a bacterial infection with a spirochete from Borrelia burgdorferi. LD can affect the brain, central nervous system, autonomic nervous system, cardiovascular, digestive and respiratory systems.

    Joann Bone, high school student and patient of doctor and former Professor Emeritus Ernie Murakami, was bitten by a tick while hiking in Kamloops last March. She developed LD symptoms within two days.

    Bone visited numerous doctors, all of whom assured her that she could not have contracted LD because the disease does not occur in Canada.

    “They all laughed at me,” said Bone. “They thought I was nuts!”

    It took three months and multiple tests that yielded inconclusive results before she sought treatment from Murakami. Bone believes the public is largely misinformed on LD issues.

    “I never heard of LD until I got bitten by a tick. I think people need to be more aware of [LD] and the truth about it…it totally disables you.”

    Bone would like to see LD education in schools so that students and teachers can learn about the dangers of the disease, as well as some of the preventative methods.

    The Canadian Lyme Disease Foundation (CanLyme) initiated a research review in response to the newly published Infectious Disease Society of America (IDSA) Clinical Practice Guideline for LD.

    “The [IDSA] guidelines are very narrowly focused,” said Jim Wilson, president and founder of the CanLyme. According to Wilson, the IDSA guidelines draw on only a fraction of the huge global databank of LD research.

    “They ignore any data that contradicts their own.”

    The International Lyme and Associated Diseases Society (ILADS), a medical association of doctors and researchers, has recently called for the IDSA to retract its LD guidelines.

    “The ILADS were the initiators of asking that the guidelines be retracted because of their lack of scientific integrity—and we support them,” said Wilson.

    Murakami agreed that the IDSA guidelines are not adequate. The Hope physician and Lyme disease expert worries specifically about the lack of LD education provided for medical students.

    “How can you treat something if you can’t diagnose the problem first?” asked Murakami. “Our medical schools are way behind.”

    Lyme disease patients are often misdiagnosed as having such illnesses such as Multiple Sclerosis, Fibromyalgia, Crohn’s disease, or Irritable Bowel Syndrome.

    Murakami believes the lack of medical education on LD is a result of a split in the medical world regarding the proper diagnosis and treatment.

    “There are two factions in the medical world,” he said. One faction believes LD is relatively easy to treat and that antibiotics should be used for three or four weeks. The other faction believes that a patient should stay on treatment until they are relieved of symptoms, and that a few weeks on antibiotics may not be enough.

    “My biggest concern is that because we are spilt on the issues of LD, we are not including it in our medical education system,” said

    Murakami, who gives lectures on LD around North America. Murakami, who said he has personally seen up to 1,500 patients from around the world, also links global warming to the current prevalence of LD.

    “Most [ticks] used to die in the winter months with the cold weather, but it’s so warm now that they don’t die off.” Wilson expects that CanLyme’s research review will take several months.

    “We want to give the reviewers ample time for a thorough review,” said Wilson. “We want one specific focus for each reviewer.”
  • artur737 20.11.06, 15:46
    QUIET WAR ON SILENT ILLNESS

    Often misdiagnosed, Lyme Disease can cause serious health problems
    Patients caught in deep divide over therapy

    By Suzanne Bohan, STAFF WRITER

    Inside Bay Area

    Article Last Updated:11/20/2006 06:22:18 AM PST
    SHELL CARBON, 35, and her husband, both vintage car aficionados, visited a Danville home in the foothills last November to check out an automobile for sale.

    But their young son and daughter, both now 8 and 12, were getting bored, so Carbon wandered into a nearby field with them.

    Little did she know that she would soon enter into among the most contentious medical debates — t e diagnosis and treatment of Lyme disease.

    Back home in San Mateo, Carbon was alarmed at a large bump developing on her right leg. She went to her doctor, who asked if she was recently bitten by a tick. Carbon didn't think so. Doctors ran an SRI to see if it might be caused by a blood clot. That proved negative, so they took a watch-and-wait approach to monitoring the strange lump. She's now convinced a tick bite did cause the 7-inch lump.

    Over the next few months, the usually active woman, who'd been working for 18 years as an insurance adjuster, became horrified as she developed joint and neck pain, weakness in the right side of her body that forced her to limp, and problems with peripheral and night vision. The right side of her face began sagging, a condition called palsy, and she occasionally had seizures.

    After a neighbor suggested she might have Lyme disease, Carbon asked for what's called an ELISA test to see if antibodies had formed to attack the bacteria, Borrelia burgdorferi, which causes Lyme disease. The test, however, misses the antibodies about half the time. Her ELISA test was negative, as was another given several months later. Meanwhile, she endured a battery of tests and treatments while visiting numerous doctors to find the cause of her deteriorating condition.

    "I very quickly reached the point where I couldn't function," she recalled Saturday, speaking in a voice that her husband calls "Slurred and robotic," compared with her articulate speech in the past.

    Then Carbon read an article this summer about a San Mateo woman who'd been misdiagnosed for years as having multiple sclerosis, when a more sophisticated test called a Western blot showed she had Lyme disease. The woman, Denise Springer, who was pregnant while believing she had MS, delivered a boy later diagnosed with Lyme disease. While the data is mixed on whether Lyme disease can be transmitted through the placenta, Springer needs no convincing that it does.

    Cajbon contacted Springer, who referred her to Dr. Raphael Stricker, a San Francisco physician who's one of a handful of local specialists in treating Lyme disease.

    Stricker prescribed the more precise Lyme disease test, which found that Cajbon was infected with borrelia, along with another tick-borne bacteria. "Ticks have been called the 'sewers of infection,'" Stricker noted.

    Lyme disease is both misdiagnosed and underappreciated as a health risk in California, another Lyme disease specialist noted.

    "People are not going to be thinking 'Lyme disease' in San Jose, but they should," said Dr. Christine Green, a Palo Alto physician who expanded her practice to include Lyme disease treatment after infectious disease doctors declined to fully test or treat her referrals.

    One of the enduring misunderstandings about Lyme disease is that it's largely confined to a few Northeastern states like Connecticut and New York. While the prevalence is high in those regions, Northern California is also listed by the Centers for Disease Control and Prevention as a hot spot for what's now the most common form of tick-borne disease nationwide.
  • artur737 20.11.06, 15:47
    The Western black-legged tick carries the Lyme disease bacteria on the West Coast. The California Department of Health Services recently issued a warning, noting that between October and March adult ticks may transmit Lyme disease. During these cooler months, adult ticks climb to the tips of vegetation, often near trails, and wait for a host to brush against them. The field Cajbon wandered into in Danville likely contained such a tick.

    About half the time after a bite by a tick infected with borrelia, a large, circular rash develops. In many cases, flu-like symptoms are contracted, along with fever and body aches.

    After Cajbon's test was positive for Lyme disease, Stricker prescribed intravenous antibiotics to kill the borrelia.

    Since then, Cajbon said her health has improved, although she still walks with a limp.

    "My clarity in my head has gotten better," she said. The treatment, she added, "gave me a little ray of hope."

    But the intravenous antibiotics are expensive, so Cajbon insisted her regular doctor, covered by insurance, prescribe it. She received six weeks of treatment, which ended Nov. 7, and her health insurance company is now refusing to provide her with any more intravenous antibiotics. She's now paying for it on her own, because her doctor believes she has chronic Lyme disease that needs continued treatment. If an initial infection is not treated within about two months it can become chronic.

    In one of the stranger sagas in medicine, the condition that Stricker and other Lyme disease experts call chronic Lyme disease is not even acknowledged by the Infectious Diseases Society of America, an influential group that sets treatment protocols.

    On Nov. 1, it issued updated Lyme disease treatment guidelines which called for a four- to six-week course of antibiotics and advised against long-term IV antibiotics.

    The guidelines outraged Lyme disease specialists, and prompted the attorney general of Connecticut last week to launch an official investigation into the association's guideline development process.

    Dr. Gary Wormser, one of the guideline authors and chief of infectious diseases at the New York Medical College, said long-term exposure to antibiotics pose serious health risks and isn't supported by scientific evidence for the treatment of Lyme disease. He doesn't believe that Lyme disease becomes chronic — one course of antibiotics should clear out any borrelia. If symptoms remain, they may be caused by another disease.

    Stricker and others counter that the microbe can evade detection.

    "It's probably one of the most complex microorganisms that's ever been described," he said.

    "There's this disconnect between the science, which shows this very complex organism, and the clinical approach, which says you can treat it with antibiotics for four weeks and it's cured," Stricker said.

    Infectious disease specialists like Wormser, he added, "have staked out a position and they don't want to admit their wrong."

    Wormser countered that "infectious disease docs, like all physicians, want to do the best for their patients. The best available evidence indicates that the potential risk of long-term antibiotics outweighs any benefit."

    Wormser said many patients come to him after having been treated for chronic Lyme disease, when they've in fact had other conditions such as cancer or hepatitis.

    Dr. Paul Mead, an epidemiologist with the CDC, added that studies have shown that people treated for Lyme disease had other conditions. He cited the example of a boy diagnosed as having Lyme disease when he in fact had leukemia.

    "That kid with leukemia has been cited about five million times," responded Stricker. "The reality is most of these patients come to me after every other known disease has been ruled out." About three-quarters of his patients recover after going off antibiotics, he said.

    While the rancorous debate, often called "the Lyme War" rages, patients desperate for effective treatment get caught in the middle.

    When asked what the medical community is doing to bridge the chasm between physicians regarding the diagnosis and treatment of Lyme disease, Stricker had little to point to, other than a proposal languishing in Congress to create a National Lyme Disease Advisory Council.

    "I agree this is very undesirable," emphasized Wormser. He said the Infectious Diseases Society of America has expanded its Web site to better explain Lyme disease and that "other ways to address this very issue are under consideration."

    Both Wormser and Mead recognized the relief that many people experience after finally receiving a Lyme disease diagnosis, but emphasized their concern that the patients may not be getting the right therapy.

    "What I tell people is that I recognize that they're suffering," said Mead. "And many are in horrible ways," he added. "But the best thing is to keep an open mind. Getting the wrong answer isn't going to cure you."

    Contact Suzanne Bohan at (650) 348-4324 or sbohan@angnewspapers.com.
  • artur737 21.11.06, 01:41
    Lyme Disease Guidelines Focus Of Antitrust Probe
    November 17, 2006
    By ELIZABETH HAMILTON, Courant Staff Writer

    Attorney General Richard Blumenthal said Thursday that he has launched an investigation into whether the Infectious Diseases Society of America has violated antitrust laws in setting new guidelines for diagnosing and treating Lyme disease.

    The investigation, the latest chapter in a bitter controversy over the use of long-term antibiotics to treat Lyme disease, comes as the state Medical Examining Board wraps up a hearing for a New Haven doctor accused of violating standards of care in treating two young patients he diagnosed with the disease.


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    The attorney general's investigation, which could result in a lawsuit, revolves around guidelines set last month by the IDSA and since adopted by the Centers for Disease Control and Prevention. Blumenthal and others say the guidelines are being used by insurance companies to determine - and sometimes deny - coverage to people asking for certain types of treatment for Lyme disease.

    The IDSA is an influential organization composed of 8,000 members with training in infectious diseases. A panel of physicians and scientists at the organization set the latest guidelines, which critics say are predicated on the belief that Lyme disease can be diagnosed by confirming specific, objective symptoms, such as the bull's-eye rash, and that it can be cured with a limited course of antibiotics.

    But a smaller group of doctors and academics believe the medical establishment has it wrong and is effectively denying patients desperately needed treatment by setting such restrictive guidelines.

    Blumenthal said the disagreement over Lyme disease, and the effect the new guidelines are having on Lyme disease patients, is what prompted him to look into the IDSA's conclusions and how they were reached.

    "These guidelines were set by a panel that essentially locked out competing points of view," Blumenthal said. "Presumably, the IDSA is a non-profit making organization, but such organizations can still be used for anti-competitive purposes."

    Blumenthal also said his office has received numerous complaints from both patients and doctors about the guidelines.

    "One of the common complaints we've received relates to denials of insurance coverage, that XYZ insurer won't cover this form of treatment because the guidelines make no provisions for it," he said. "It's a very chilling economic effect."

    Diana Olson, the director of communications for the IDSA in Virginia, did not return a call for comment Thursday.

    The announcement of Blumenthal's investigation came as the medical board hearing against Charles Ray Jones continued Thursday at the Legislative Office in Building in Hartford.

    Jones is considered by some to be one of the nation's leading pediatric Lyme disease physicians. He was charged last year by the state Department of Public Health with violating standards of care for two siblings who live in Nevada after a complaint was brought by their father. The father was involved in a custody dispute with the children's mother at the time he brought the complaint, according to previous published accounts.

    Jones is accused of diagnosing the children with Lyme disease and prescribing antibiotics for the children over the phone, without having examined them, after their mother, an emergency room nurse, contacted him. He is also charged with failing to consider other reasons for their symptoms.

    Jones, who has denied all the charges against him, could lose his medical license if the board finds against him.

    About 150 former and current patients of Jones, along with their parents, packed the hearing room to show support for Jones. Also in the audience was Pat Smith, the president of the Lyme Disease Association Inc. in New Jersey.

    Smith said the case against Jones, coupled with the new IDSA guidelines, comes at a time when doctors who don't subscribe to the established views on diagnosing and treating Lyme disease are being increasingly targeted.

    "Oftentimes what is used against them is what is written in these guidelines," Smith said.

    Diane Blanchard, the co-president of the Connecticut-based organization Time for Lyme, said the research on Lyme disease isn't conclusive enough yet to rule out entire realms of treatment.

    "These guidelines are becoming the de facto standard of care and that is not OK," Blanchard said. "We are all guinea pigs at this point. Why would anyone think they have all the answers? It's not right."

    Contact Elizabeth Hamilton at ehamilton@courant.com.

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