May 10, 2013
New Jersey Patients Rally to Raise Awareness of Lyme Disease, challenge CDC Treatment Guideline
Many New Jersey people suffer unnecessarily for years with Chronic Lyme disease.
Lyme disease patients from all corners of New Jersey will be traveling to New York City to participate in the Rally to raise Lyme Awareness, particularly of concern in New Jersey since the state, despite its small size, is now #3 in the nation in number of Lyme disease cases,. New Jersey has 4,262 probable cases reported for 2011, with 52,334 Lyme disease cases reported for the period 1990 to 2011.
The CDC has admitted that the actual number of cases nationally is likely 10 to 12 times as high due to variability between their epidemic surveillance criteria and physician diagnostic and treatment criteria.
Many New Jersey tickborne disease patients can not find physicians to treat, or adequate treatment to recover from the bacteria that causes Lyme disease, as well as other tickborne co-infective agents, and they remain chronically ill for years. There are documented cases of death due to Lyme disease.
May is Lyme Disease Awareness month and, for the first time, Lyme disease events are stretching around the world. Lyme events and rallies will take place in over 23 states and, internationally, in 20 countries.
New Jersey Lyme patients will be traveling today to the South Plaza at Union Square Park, in New York City, to take part in the Tri-State International Lyme Awareness Rally, supported by patients in the states of New York, New Jersey, and Connecticut.
The rally will feature Speakers on Lyme issues from the three states for the four hour at event – physicians, practitioners, patients, authors, a Lyme lawyer, and leaders in the Lyme community.
Pamela Weintraub, stellar author of the comprehensive Lyme book, CURE UNKNOWN, will be on hand for a book signing and to answer questions.
Billed also as a protest, today’s event hopes to draw attention to several issues, including under-reporting of Lyme disease; treatment guidelines that — wrongly, organizers believe — limit antibiotic doses to 28 days; and the existence of so-called chronic Lyme disease, a diagnosis that health authorities largely reject.
“This is not just a local issue, this is a worldwide issue,” said one New Jersey Lyme leader. “Medical professionals have known since the 80s that Lyme disease can be Chronic and Persisting, and a plethora of research and journal-published articles support this. Yet Lyme treatment remains in the Dark Ages, with some government officials and hostile physician bodies playing “The Emperor’s New Clothes” with a national health crisis of epidemic proportions.”
The Tri-State International Lyme Disease Awareness Rally will be held on the South Plaza of Union Square Park near the corner of 14th Street and Union Square West from Noon to 4 PM.
It is important for New Jersey residents, patients and physicians, to remember that Lyme disease is a clinical diagnosis, and that fewer than 50% of patients remember a tick bite. Also fewer than 50% of patients show a bull’s eye rash, so absence of rash does not equal absence of Lyme disease. Studies have shown conventional testing to be up to 40% inaccurate, and false-negatives are common.
The American College of Physicians recognizes that blood tests “cannot diagnose Lyme disease alone, but they are used to confirm a diagnosis,” and that “anti-Borrelia burgdorferi antibodies may take up to 2 to 5 weeks after infection to appear in the blood.” Therefore, a blood test immediately following a tick bite will not be able to determine whether or not a person has been infected.
Lyme disease is most prevalent in children two to 15 years of age and in adults 30 to 59 years of age. Young people are especially hard-hit by Lyme disease and tickborne coinfections in New Jersey, and the consequences can cause physical, neurological, and psychiatric manifestations that interfere with the ability to attend school, perform classwork and meet developmental milestones.
Lyme activists first began coordinating the international series of May events through Facebook, and the idea quickly went global. A rally will be held outside of Parliament in Norway, while in Canberra, Australia, Telstra Tower and other national landmarks will be lit up in symbolic “Lyme” green for the day. In Germany, a Lyme organization will present an open letter to the health minister, demanding improvement in Lyme treatment, and petitions for better care will be presented in Belgium, Denmark, the United Kingdom and South Africa. Rallies in over 23 states in the USA will draw attention to this ongoing crisis and the need for adequate research and treatment, and an end to political controversy by a narrow band of clinicians that has stymied progress.
To raise awareness about Lyme & other tick-borne diseases in New Jersey, the NJ based national non-profit Lyme Disease Association, Inc. (LDA), in cooperation with Congressman Christopher H. Smith (NJ-4), hosted a press conference on Tuesday, April 30. In a press conference packed with New Jersey media, Congressman Smith (NJ-4) spoke about his federal Lyme bills (HR 610, HR 611) to establish a federal tick-borne diseases advisory committee and to provide much needed funding for Lyme and other tick-borne diseases research to combat their spread throughout New Jersey and the country.
Pat Smith, LDA President, presented LDA programs, including research grants awarded by LDA. She broke out the case numbers and underreporting issues, problems with testing, costs, and highlighted the problems of children with Lyme in the schools
See Worldwide Mission Statement for International Lyme Disease Awareness below.
Worldwide Mission Statement for International Lyme Disease Awareness
Worldwide Patients are raising awareness and protesting to highlight the need for:
1. Recognition that Lyme disease/borreliosis, and other tick-borne infections, such as Babesia, Bartonella, Rickettsia, Ehrlichia, are serious, and sometimes fatal illnesses.
2. Awareness of the fact that the transmission of tick-borne pathogens, such as borrelia, babesia, rickettsia, via blood transfusion is of global concern.
3. Agreement that Lyme disease/borreliosis should be listed as a notifiable infection. Notifiable status will aid in ensuring that the incidence and spread of this disease are monitored, a necessary precursor to determining the human suffering and socioeconomic impact of the disease.
4. Education of the healthcare sector regarding the accurate diagnosis of Lyme, which in some cases may be limited to clinical presentation due to limitations of serological testing.
*Education should ensure all doctors are familiar with the CDC caution pertaining to criteria for blood tests for Lyme: “This surveillance case definition was developed for national reporting of Lyme disease; it is NOT appropriate for clinical diagnosis…Surveillance case definitions are created for the purpose of standardization, not patient care.”
* Education that Lyme should be included as a differential diagnosis when considering other illnesses that are also reliant on subjective clinical presentation, or have no known cause. This includes, but is not limited to: Motor Neurone Disease (MND) also known as Lou Gehrig’s disease or Amyotrophic lateral sclerosis (ALS) ; Multiple Sclerosis ; Alzheimer’s; Parkinson’s disease; Sarcoidosis.
5. Education of the healthcare sector regarding affordable and effective treatment of both acute and chronic Lyme and other tick-borne infections. This includes the need to update the outdated treatment guidelines of the Infectious Diseases Society of America (IDSA) and to take into account the treatment methods of other Societies such as: The International Lyme and Associated Diseases Society (ILADS) and the German Borreliosis Society (Deutsche Borreliose-Gesellschaft : DBG)
6. Funding for research into tick-borne diseases. Including: Funding for medical research into accurate Lyme testing and treatment ; Funding for research into vectors and reservoir hosts to determine what diseases they may carry and transmit.
Here’s our exciting speaker schedule for the International Lyme Disease Awareness Rally in NYC on Fri. May 10, 2013!!!!!! Hope you’ll join us. thanks. please like and share….
International Lyme Disease Awareness Rally – May 10, 2013, NYC, Union Square, South Plaza: 12-4 pm
12:00 Musical lead-in
12:30 Dr. Daniel J. Cameron – NY (past president ILADS, president 2013), Lyme and epidemiologic research
12:45 Dr. Eva Sapi – CT, University of New Haven, Dept of Biology and Environmental Science
1:00 Gerald T. Simons – NY, PA-C, works at the Morrison Center, NYC.
1:15 Dr. Charles Ray Jones – CT (ILADS, pediatrician who has treated 20,000 children in Europe, Australia, US, Canada, Mexico, S Africa, Pakistan, India, Singapore, China, Japan, N. Korea, S. Korea, Saudi Arabia etc.
1:30 Tracy Hans – NJ, LPC, ACS, Lyme literate Psychotherapist
1:45 Jeff Christiansen – NY, Fire Island four poster deer program
2:00 Jill Auerbach – NY, Hudson Valley Lyme Disease Association – tick prevention
2:15 Douglas Nadjari, Esq. – NY, who successfully counseled Dr. Liegner through the OPMC process
2:30 Meghan Harrison – PA, Lyme patient, recipient of TBDA Courage Award, 2013
2:45 Ariana Sierzputowski – NY, Lyme patient
3:00 Dr. Andrea Gaito – NJ (co-founder and former president ILADS, current Treasurer, ILADS) rheumatologist/internist
3:15 Dr. Kenneth B. Liegner – NY, internal medicine/critical care, treating Lyme since 1988
3:45 Musical finale
Pam Weintraub – NY, author “Cure Unknown” – book signin