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Guidelines that Believe in A Sterile Tick Gut

Is this a Joke?

Recently, a large series of textbooks were released that would match any FBI indictment that showed the profound corruption of IDSA—the Infection Society of America. It makes the mob look like church boys. It appears most infectious disease physicians believe they can trust in a handful of Lyme disease Popes to control their positions—like handing over the corporate taxes to a crack head. We truly understand. We get that they hardly have time to read 2,000 articles each on Lyme disease, Babesia and Bartonella. They have no time to read the patents, grants and appeals for help to fight the demon plague Lyme which is then depicted as a piece of dust in public insurance supported guidelines.

When even very high IQ patients talk with them, it is clear they have no sense of any reasonable bibliography on all the major tick-borne infections, which is frightening and sad. Unfortunately, one has to read for a few years to get past the simplistic 4th grade guidelines that are so inept they discuss Lyme as if it is alone in tick bellies and the only infection passed.

Lyme Organizations: New IDSA Guidelines Panel, Unbalanced & Biased; Congressman and Patient Groups Voice Concerns

Patient groups voiced concern and disappointment about the new Infectious Diseases Society of America (IDSA) Lyme disease guidelines' panel, which excludes physicians who treat patients with chronic Lyme disease.

Greenwich, CT (PRWEB) February 2, 2009 — Patient groups voiced concern and disappointment about the new Infectious Diseases Society of America (IDSA) Lyme disease guidelines' panel, which excludes physicians who treat patients with chronic Lyme disease. In May 2008, the Connecticut Attorney General found the IDSA Lyme disease treatment guidelines' panel had conflicts of interest, engaged in exclusionary conduct, and suppressed scientific evidence. The investigation resulted in a settlement forcing the IDSA to reconstitute a balanced panel free of conflicts of interest under the oversight of an ombudsman to monitor conflicts of interest. No input from patients or treating physicians was permitted in selection.

"This situation is deja vu all over again," said national Lyme Disease Association president Pat Smith about the newly created guidelines' panel. "All Lyme disease treating physicians who applied for a seat were denied, based on having a "conflict" if they made over $10,000 treating Lyme disease. They have confused helping patients get better with 'real' competing conflicts such as interests in testing and vaccines, and relationships with insurers_a profile found in the original panel. Physicians who treat understand what makes patients well."

Attorney Lorraine Johnson of the California Lyme Disease Association points out "The problem is that guidelines conclusions generally reflect panel composition. That is why it is critical that a panel be balanced and include different points of view. Excluding the point of view of physicians who treat chronic Lyme disease makes no sense and biases this panel."

The current IDSA guidelines recommend against treating Lyme disease more than a few weeks, against using specific types of antibiotics, against alternative treatments and even supplements. The guidelines are so restrictive that physicians are not permitted to use clinical judgment in diagnosing or treating Lyme patients. The new panel will review controversial recommendations in the guidelines to determine whether there is sufficient scientific support for the recommendation.

According to Diane Blanchard, Co-President of Time for Lyme in Connecticut, "Treating physicians must be allowed to make clinical judgments about their patients' conditions due to the complexity of tick-borne diseases, and there are a number of physicians out there nationwide who are knowledgeable enough to recognize the effects of coinfections on diagnosis and treatment. Some have been treating for over 10-20 years and have tens of thousands of hours of experience seeing patients; yet, these physicians were not selected."

US Congressman Christopher Smith (NJ) co-chair of the House Lyme Disease Caucus, told the patient groups "The Settlement Agreement of the IDSA requires a balanced panel with a variety of experiences, including clinical experience in treating patients with Lyme disease. I share concerns raised about exclusion of physicians who treat persisting Lyme and the composition of the panel. I know I am joined by colleagues in Congress in the hope and expectation that the reassessment of the Lyme disease guidelines will be conducted with the highest levels of integrity and expertise. Nothing less will protect the rights and welfare of patients. We will continue to monitor this ongoing process."

The three groups are still hopeful, however, that the panel will take their responsibility seriously, since they have within their grasp the chance to improve the diagnosis and treatment for Lyme patients everywhere. Patients are counting on them to ensure that the weight of the science is evaluated fairly, which would be reflected in new standards that provide help for thousands of children and their families.

The groups feel patients should be provided with treatment options, including the use of long term antibiotics, to fight the disease, which has a disability equivalent to that of congestive heart failure. As in other areas where science is emerging, patients should have choices, and the exercise of clinical judgment by treating physicians should be encouraged. Studies of chronic Lyme disease show a failure rate of 26% to 50%, using the short-term antibiotic approaches currently advocated by IDSA.

ABOUT: The national Lyme Disease Association, (LymeDiseaseAssociation.org), the California Lyme Disease Association (www.lymedisease.org), and Time for Lyme (www.timeforlyme.org) are non-profit organizations that were founded by individuals who had personal experience with Lyme disease, in order to address the lack of education and support services available for this newly emerging infection.

By Raphael Stricker, MD
President, ILADS

******************************

August 28, 2007
The Honorable Jon S. Corzine
Chairman
Health and Human Services Committee
National Governors Association
444 North Capitol Street, NW, Suite 267
Washington, DC 20001

Dear Governor Corzine,

I am writing in response to the letter of August 7 from Dr. Henry Masur, President of the Infectious Diseases Society of America (IDSA). That letter urged you and other governors to turn your backs on patients with Lyme disease. I would like to offer a more positive approach from my organization, the International Lyme and Associated Diseases Society (ILADS).

First, however, I would like to extend ILADS' support in the battle against Lyme disease to your state of New Jersey, which as you know has one of the highest rates of Lyme disease in the country. Lyme disease affects as many as 250,000 people per year in the United States, based on under-reporting statistics from the Centers for Disease Control and Prevention (CDC) and data from state health departments. I hope that the former governor of New Jersey is doing well in her fight against this insidious tick-borne illness.

Dr. Masur states correctly that he represents a group of 8,000 doctors who specialize in infectious diseases. However, only a small fraction of that group knows anything about the diagnosis and treatment of tick-borne diseases, including Lyme disease. Unfortunately that small faction has hijacked the IDSA policy on Lyme disease and created treatment guidelines that are so restrictive that the Attorney General of Connecticut is currently investigating potential antitrust violations and restraint of trade arising from the exclusionary process that led to the IDSA guidelines formulation.

In contrast, ILADS is an international organization of healthcare providers who specialize in the treatment of Lyme disease and associated tick-borne disorders. The members of our multidisciplinary society care for some 50,000-100,000 patients with tick-borne diseases, and we have published evidence-based guidelines for the diagnosis and treatment of Lyme disease (available at www.ilads.org). Our guidelines are flexible and inclusive. They allow practitioners to treat patients in a more pragmatic fashion, especially if those patients are suffering from chronic Lyme disease.

A major problem is that Dr. Masur and IDSA refuse to acknowledge the existence of chronic Lyme disease, stating that there is "no convincing published data" to support the existence of this serious chronic illness. IDSA has repeated this mantra despite evidence from more than 19,000 peer-reviewed scientific articles that chronic Lyme disease does in fact exist. The problem is that IDSA does not accept this evidence and buries its head in the sand every time the evidence is brought up. In fact, IDSA refused to meet with ILADS to discuss our concerns before the IDSA guidelines were adopted. It is certainly hard to convince an organization that doesnŐt want to listen to the opposite argument.

Dr. Masur employs two lines of reasoning to discredit treatment with longer courses of antibiotics for patients with chronic Lyme disease: First he states that "carefully designed and conducted studies of Lyme disease treatments have failed to demonstrate benefit from prolonged antibiotic therapy". This statement ignores the fact that there have been only two published studies that fit this description, and the results were mixed. A third study from Columbia University sponsored by the National Institutes of Health is currently in press, and it shows benefit of longer treatment for patients with persistent neurologic symptoms due to chronic Lyme disease. Thus Dr. Masur's statement is both inaccurate and out of date.

Dr. Masur also makes the point in bold letters that "long-term antibiotic therapy may be dangerous, leading to potentially fatal infections in the bloodstream as a result of intravenous treatment". What he fails to tell you is that long-term antibiotic treatment is used routinely in patients with serious infectious diseases, such as the case of Andrew Speaker, the attorney with resistant tuberculosis who led the CDC on a global chase before he was quarantined and treated for his disease. Nobody would argue that Mr. Speaker should not receive the full course of antibiotic treatment necessary to eradicate his infection (up to two years of therapy). However when it comes to Lyme disease, such treatment is branded as "dangerous", despite the fact that antibiotics are generally well tolerated by patients and regarded as safe by the Food and Drug Administration.

And why does IDSA consider this treatment dangerous? Because they refuse to look at the facts. For example, a homecare company with extensive experience in treating patients with intravenous antibiotics for chronic Lyme disease submitted a study to IDSA for presentation at their annual meeting. The study showed that in patients who received intravenous antibiotic treatment for an average of four months, the mortality rate was zero, and the rate of side effects was less than 1%. The IDSA response to this report? They rejected the study for presentation and refused to look at the data. Once again, there is no convincing an organization that refuses to listen to the opposite argument. It is particularly sad to see that the sources cited at the end of Dr. Masur's letter in support of his views are not articles from the peer-reviewed medical literature but rather misleading reports from Forbes Magazine, the Washington Post and Newsday.

ILADS urges the governors of all states to support federal and state legislation intended to protect doctors who specialize in treating Lyme disease against the misleading and uninformed views of IDSA. ILADS urges you to support adequate treatment for patients suffering from chronic Lyme disease, and we urge you to consider the research information that has been suppressed and ignored by IDSA. If we continue to ignore this information, the Lyme epidemic will continue to spread with no end in sight.

Governor Corzine, August 28, 2007, marks the 44th aniversary of the famous "I have a dream" speech by Rev. Martin Luther King, Jr. The members of ILADS and the Lyme community have a dream, and it is not very different from Dr. King's. Our dream is to see patients with chronic Lyme disease treated with dignity and respect by the entire medical community, so that informed physicians can treat those patients in a caring and compassionate manner without fear of discrimination, derision and figurative shotgun blasts from medical boards and medical societies. This is our simple dream, and I urge the governors of our nation to help us make this dream come true.

Sincerely,
Raphael Stricker, MD
President, ILADS

cc:
President George W. Bush
Governor Arnold Schwartzenegger
Governor Mitt Romney
Senator John McCain
Mayor Rudolph Giuliani
Senator Hillary Rodham Clinton
Senator Barack Obama
Senator John Edwards
Secretary Mike Leavitt
Matt Salo, HHS Committee Director, NGA
Kathleen Nolan, Health Division Director, NGA


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