So for 31 years we have been using a useless first line laboratory test to screen for a disease that is destroying lives, ending careers while leaving the patient in financial ruin.
How many Lyme patients have been harmed by these faulty/misleading antibody tests and told they do not have Lyme disease? The US Centers for Disease Control is 100% responsible for this epic failure.
“Late You Come: Legislation on Lyme Treatment in an Era of Conflicting Guidelines”
“… Every patient she sees comes back with a diagnosis of a Lyme-related “condition.” Most of her treatments are not covered by insurance, because they have no basis in evidence, and cost her patients $30000 a year or more. Moreover, the test she uses for “diagnosis” has never been validated and is not used in New Jersey or New York; all her samples have to be shipped to a lab out of state.”
Johnson and Stricker [7] had previously written that, “At a minimum, the guidelines issued by a dominant medical society should conform to fundamental rules of due process, fairness, and accuracy.” Transparency should also be applicable to the practice patterns of any entity, dominant or not, that puts itself forward as promoting “understanding of Lyme and associated diseases through research, education and policy,” especially as the foundations of statewide or national legislation are laid.
Throughout its history, Lyme disease has been a slow burning public health crisis. There can no longer be 2 systems of diagnosis and treatment; it is time that all levels of care are held equally accountable and transparent at a statewide and national level.
Rep. Smith: Federal funding for tick-borne diseases is a 'joke'
Lyme Sufferers Must Use The Disease To Make A Difference
There are two organizations with worldwide influence that would like you to believe that there is no such thing as chronic Lyme disease. They are the Centers for Disease Control and Prevention (CDC) and the Infectious Diseases Society of America (IDSA).
When the producer of the documentary “Under Our Skin,” a brilliant look at Lyme disease, filed a Freedom of Information Act request for certain documents from the CDC, it took the CDC five and a half years to comply. It should have taken several weeks. Then, once the documents arrived, they were all censored and therefore none of the information requested was delivered. Even a blind man would say there was something wrong with this picture.
The conclusion of the team of television producers behind “Under Our Skin” was that the CDC and the IDSA’a Lyme guideline authors had been in collusion for years. How else to explain that the money goes to those who have a bias against chronic Lyme disease?
More frighteningly, these powerful organizations have demonstrated that they have long tentacles. Dr. Morten Laane, a doctor/researcher in Norway developed an accurate Lyme test using the patient’s blood, a little water and salt. The combination of the three makes the borreliosis available by looking under a microscope. Had the test gone international, a patient would be able to have a diagnosis in minutes in the comfort of his doctor’s office. Instead, the medical professors at the university where Dr. Laane’s work was being done complained about his work. Shortly thereafter, he received orders to immediately stop all work on the Lyme test. Dr Laane claimed that had never before happened in Norway.
That is not the only case of this kind. Advanced Labs, an American laboratory, created a test in which they managed to grow an actual spirochete from a culture. That kind of test is supposed to be the gold standard of testing.
he National Institutes of Health (NIH) is readying a strategic plan for these diseases. Last week it also, serendipitously, issued a rare solicitation for prevention proposals in tickborne diseases. The new pot of money, $6 million in 2020, represents a significant boost; NIH spent $23 million last year on Lyme disease, by far the most common tickborne illness, within $56 million devoted to tickborne diseases overall.
"I'm happy for anything" new going toward research, says John Aucott, director of the Johns Hopkins Lyme Disease Clinical Research Center in Baltimore, Maryland, who chaired the group that wrote the 2018 report. Strategies that may garner support include vaccines that target multiple pathogens carried by ticks or that kill the ticks themselves.
Lyme Warriors Surround Infectious Diseases Society of America Headquarters, Issue Demands
Hundreds of Lyme disease patients and activists from around the United States have surrounded the headquarters of the Infectious Diseases Society of America. They are demanding that IDSA update its controversial guidelines for Lyme disease and acknowledge the evidence for a chronic form of Lyme disease that is resistant to antibiotic treatment.
Mayday coordinator Josh Cutler has been fighting late stage neurological Lyme disease for eight years. This condition affects the brain, the central nervous system, and the autonomic nervous system that regulates blood pressure and other vital functions. Cutler was rushed to the emergency room on multiple occasions and at one point was confined to a wheelchair. Despite antibiotic treatment that exceeds IDSA recommendations, Cutler, who was a successful network engineer before he contracted Lyme, remains seriously ill and unable to work.
Cutler says, “IDSA’s refusal to update its guidelines for Lyme disease contributes to the unnecessary suffering of thousands of people like me. We are uniting at Mayday to demand IDSA stop its misrepresentation of science, end its conflicts of interest, and fix its guidelines for Lyme.”
In 2009, the Association of American Physicians and Surgeons wrote an open letter to the IDSA sharply criticizing its guidelines for Lyme. Following is an excerpt.
“AAPS objects to the overly rigid IDSA Lyme Guidelines that were published in 2006… These Guidelines should be revised to recognize that the physician must retain full flexibility in the diagnosis and treatment of Lyme disease. Medical societies do not practice medicine; physicians do. The mandate for specific laboratory confirmation is particularly objectionable, as testing for Lyme disease is notoriously insensitive and unreliable. Patients who do not meet this criterion would often be denied treatment that could mitigate severe chronic disability. In some cases, long-term treatment is required. Physicians must be able to exercise their professional judgment concerning the best treatment for each individual patient, without restraint by one-size-fits-all Guidelines, which amount to mandates and prohibitions.”
In November 2006, Connecticut Attorney General Richard Blumenthal, now a U.S. Senator, launched an investigation of IDSA based on allegations of abuses of monopoly power and exclusionary conduct in the development of their guidelines, in violation of antitrust law.
In a May 2008 press release Blumenthal said, “My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA’s guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.”
IDSA reached a consent agreement with Blumenthal’s office calling for creation of a review panel to thoroughly scrutinize the 2006 guidelines and update or revise them. In 2009, the guidelines were reviewed and updated, but no significant changes were made, and Blumenthal charged the IDSA with violating the agreement.
According to Blumenthal, the IDSA used an “improper voting procedure, based on a process of its own design, which blatantly violates the Settlement Agreement and undermines the integrity of the voting process.”
In addition to inflexibility regarding its guidelines, IDSA has consistently opposed patient-centered legislation at the State and Federal levels. At their 2004 annual meeting, the IDSA passed a resolution to oppose patient legislative initiatives, and at their 2006 annual meeting “Defeat Patient Sponsored Legislation” was a top agenda item.
Cutler is concerned about the adversarial relationship between the IDSA and chronically ill patients. “IDSA’s response to the epidemic of chronic Lyme disease is to pretend it doesn’t exist,” he says. “Thousands of people suffer as a result. Instead of working for the benefit of patients, IDSA works hard to block badly needed legislation.”
About the Mayday Project
The Mayday Project was formed in 2011 by a group of volunteers who have been touched by Lyme in some way. They aim to raise awareness about chronic Lyme disease and related tick-borne illnesses. Mayday supporters advocate for more accurate tests, improved access to treatment, increased education for physicians, and more funding for research. For more information visit www.themaydayproject.org.
Lyme and other tickborne diseases: ‘We need a national public-private strategy’
Attorney General Forces Infectious Diseases Society of America to Redo Lyme Guidelines Due to Flawed Development Process
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