Last week there was a protest in Arlington, Virginia where a group of chronic Lyme Disease sufferers, along with many local news stations, gathered around the sidewalks in front of the Infectious Diseases Society of America (IDSA) building. This was long expected following a publicized investigation in 2008 by Attorney General Richard Blumenthal who discovered flaws in the IDSA diagnostic guidelines. An agreement was made to restructure a voting process and the examination of the diagnostic criteria, however, the IDSA allegedly violated the terms of this agreement. Other claims from the Lyme community have asserted and maintained that there is much more behind Lyme and chronic Lyme than a naturally occurring disease.
Governor Peter Shumlin of Vermont signed a bill this year that would give doctors vast latitude in treating long-term symptoms of tick-borne diseases. Advocacy groups claim this is one of the major flaws with the IDSA guidelines since it prevents or hinders doctors across the country from treating patients. It is said to specifically restrict physicians and insurance companies from working together to provide care and options to infected persons.
Over a decade ago, pathologist Alan MacDonald, MD discovered that there is a tertiary Lyme disease condition similar to that seen in tertiary syphilis, which causes a form of dementia. This is not the only condition or disease the various strains of Lyme bacteria may cause, however. Multiple sclerosis is a condition that is said to be influenced by a variety of factors, and for reasons still unclear, is somewhat correlated with Lyme infection.
Globally, multiple sclerosis prevalence parallels the distribution of the Lyme pathogen Borrelia (B.) burgdorferi. The rates of people who later develop MS exactly mirror the seasonal distributions of Lyme transmitting ticks. This finding was published in PubMed by Fritzsche M. with the Clinic for Internal and Geographical Medicine, Switzerland.
There is much speculation as to why there has been a surge in infection rates. Robert Herriman, infectious disease examiner with Examiner.com discusses the possibility of Lyme disease spreading from the lab facilities on Plum Island just off the coast of the United States mainland, and is close to the core of the recent Lyme outbreaks in Connecticut. Herriman speaks about the history behind Plum Island and the U.S. lab facilities there.
Dr. Erich Traub is one German scientist who allegedly worked as a bio-engineer during World War II for the Nazi regime, implementing biological warfare experiments. He is also claimed to have worked at Plum Island under United States provision following his commission at the Third Reich’s virological and bacteriological warfare program. Many advocates believe this theory is supported, leading to the conclusion that many of the Lyme cases seen today could very likely be more than just a naturally occurring disease, but also an effect of a modified and heavily influenced bioweapon.
Lyme sufferers are not the only population striving to help fight this public health crisis. The International Lyme and Associated Diseases Society (ILADS) has a program to educate physicians in Lyme disease, often referred to as Lyme literacy. On the front of their page is the statement, “Because doctors aren’t trained shouldn’t be the reason why you live half a life.” This program is called the International Lyme and Associated Diseases Educational Fund (ILADEF).
During the protest last week, members of the media interviewed many of the chronic Lyme activists and discovered a wide array of damages and personal circumstances that have been said to be directly caused by the flawed guidelines. Finding a doctor who acknowledges and is willing to treat chronic Lyme is one of the greatest challenges this population faces.
The IDSA felt the heat during this event as a Fox 5 reporter was escorted out of the IDSA building by police and other security following what some speculate was a moment of hard questioning. It was also reported that the agency’s phones were turned off during the protest and those phone calls that were actually getting through were redirected or placed on indefinite hold. The protest organizer, Josh Cutler, was able to meet with a small group of IDSA representatives (photograph here) and was able to hand over a couple documents for their review.
At one point, an IDSA member agreed to consider looking into modifying the guidelines.
Leaving this condition untreated has caused neurological conditions in many chronic Lyme sufferers. A large percentage of those infected are claimed to have died from the infection, or are currently bed-ridden or confined to a wheelchair. At the protest was a sign held by several activists that listed the names of 722 chronic Lyme sufferers who wished to have attended the protest but were otherwise too sick to be present.
The next step for the Lyme community was reported in Yahoo Finance. “Lyme warriors” are calling for congressional investigation of the Centers for Disease Control and Prevention (CDC), IDSA, and vaccine manufacturers. A well-known activist and Lyme researcher, Carl Tuttle, says this investigation is long overdue. He says there is a conflict of interest and improper influence which has inflicted suffering and financial losses for thousands of sufferers.
It still remains a mystery as to whether or not Lyme disease is more than a naturally occurring phenomenon, and to what degree is has been influenced by man, but much has yet to be revealed as chronic Lyme is reportedly on the rise. Though Lyme cases were previously under-reported, the CDC now claims 300,000 new cases are being acquired every year. This statistic places the infectious disease in the spotlight, as no physician can now deny the seriousness of such an illness.
By Lindsey Alexander