This month is home of the Lyme disease May Day protest at the Infectious Diseases Society of America (IDSA) headquarters in Arlington, Virginia, which is the biggest anticipated event in years. Victims of chronic Lyme disease and misdiagnoses are urged to join this two-day protest on May 22. The assembly will demand the IDSA to overturn the poor guidelines that were a matter of investigation and allegation not long ago. Thousands of patients have reported suffering due to these guidelines, and here is why:
Ross Anderson, patient at Providence Internal Medicine Residency and founder of the movement Lyme Patients vs. CDC Class Action Suit and The Pacific Northwest Multiple Sclerosis Research Fund, fought long and hard for treatment. One of his tests came back positive, and further testing following treatment they alleged was negative. Was the test really negative? Were they even the correct tests? Here is what Mary Noble MD, FACP Director of Ambulatory Care had to say:
“We have been advised this lab (IgeneX) does good quality testing, but their parameters for deciding that tests are positive or negative are not consistent with CDC standards. Therefore, we cannot use this lab for our patients because the test results would not be meaningful to us.”
One of the organizers of this protest is a long-time sufferer of chronic Lyme disease, and he hopes this May Day event will be the biggest in years as it has been pre-planned to a great extent. Activists are even expected to head to the United States Capitol during session this time next year.
Josh Cutler, another victim and the lead organizer of this project was a successful engineer for the federal government before deciding to fight the corruption and negligence in medical diagnostics. In 2006, he recalled a tick bite, but like most at that time he was not worried. A week later, however, as is common, he presented with a flu-like illness. Testing came back negative for Lyme. Cutler suffered black-outs, brain-fog, and was eventually confined to a wheelchair. He became so infected and sick he was rushed to the emergency room on several different occasions.
An IgeneX test revealed he indeed suffered from chronic Lyme with infections of Babesia and Bartonella as were confirmed. A board certified doctor of Holistic Medicine, Dr. Stewart, who reportedly practiced Sports Medicine for the Redskins previously, now solely focuses on healing chronic Lyme patients and was Cutler’s provider.
IDSA Caught Red-Handed
The ISDA guidelines have a sweeping and significant impact on Lyme disease medical care. This even applies to insurance companies, thus restricting coverage for chronic Lyme and long-term antibiotic treatment, or other forms of treatment.
Connecticut Attorney General, Richard Blumenthal, discovered a major problem during his investigation in 2006.
The IDSA’s Lyme guideline process lacked crucial procedural safeguards to the degree they required complete reevaluation. Unfortunately, the new panel created for this reevaluation also lapsed efficacy in its very own purpose.
The matter of corruption, or in particular, a “concern over improper voting procedures used by the IDSA in the Lyme guidelines review voting process,” is one of the issues that must be addressed during this assembly since the IDSA members failed to provide the public with accurate diagnostic guidelines physicians could appropriately follow.
The Lyme Disease Association reiterated that the IDSA invalidated the integrity of the process for scientific understanding of the diagnostics and implementation thereof.
The IDSA failed to voluntarily comply with the Settlement Agreement in good faith, which was the agreement that was met by Blumenthal and IDSA to correct the shortcomings of their very own guidelines. The panel first failed to conduct the vote to determine whether the science was sufficient to support the guideline recommendation. Additionally, the panel substituted its own procedure for the second part in the voting.
Maria E. Aguero-Rosenfield and her team conducted a study in the Clinical Microbiology Review PMC 2005. They found by culturing the plasma and increasing the volume of material cultured greatly assists in improving detection of B. burgdorferi sensu lato in Lyme patients. This is one of many applicable methods that are not prompted by guidelines from the IDSA, or even the Centers for Disease Control and Prevention (CDC). As the staff from Providence Internal Medicine said, because IgeneX testing methods are not consistent with CDC standards “test results would not be meaningful to us.” This holds true for any and every method used to proficiently test for and diagnose chronic Lyme.
If all sufferers physically able to meet the group for this protest can come out on May 22 this year, historical change will be made as the IDSA will be asked to do what is right. If these guidelines are not changed, thousands of people will become sick and find themselves at a loss for treatment. Lyme affects children, grown-ups, and the elderly, and this is a matter of public health. The May Day protest could be the biggest event in years, serving all Americans and those presently suffering with Lyme disease, and those who one day will be.
Opinion By Lindsey Alexander