New York, NY - September 16, 2014 - The Empire State Lyme Disease Association has released the following statement:
There is a desperate need for awareness of the dangers of Lyme and tick-borne illnesses. Years ago Lyme advocates said Lyme would become an epidemic; later we said it was and now, with Germany, one country alone, reporting one million cases per year, and the CDC’s 2013 announcement that each year US has 300,000 NEW cases, it is a pandemic.
We've spoken with over 15,000 patients during our advocacy and we've learned that each individual who is late diagnosed or misdiagnosed usually suffers enough for several lifetimes. Complications are known to occur with other diseases but it is not yet generally accepted for Lyme, even when some people are diagnosed and treated immediately. Incredibly, we've seen that anyone can become seriously disabled from Lyme.
There are so many disabled that this is a situation where not only a patient, but families are impacted emotionally and financially as they care for loved ones. Patients lose their health, their businesses, jobs, and relationships are destroyed, or patients don't even get to begin a relationship or have any quality of life other than trying to survive diseases a tick transmitted to them.
Patients are victims of many doctors who still do not understand the severity and prevalence of Lyme and tick-borne diseases. This travesty also results in Lyme patients being misdiagnosed and also, misunderstood and called names. (Such as malingerers, crazies, antibiotic-seeking, attention-seeking or loonies suffering from dot-com disease)
In fact, it is rare when we receive any respect or compassion.
Tragically, the strict mandates of the Infectious Diseases Society of America (IDSA) render a doctor who does have some understanding of Lyme and tick-borne diseases as unwilling to treat or even diagnose. The IDSA has control and the authors of the IDSA guidelines for Lyme disease appear to be backed by government agencies, no matter how many scientific articles disprove them or how we see many patients recover when doctors treat outside the IDSA guidelines.
From CDC and official sources, advocates have known for years that reporting was inadequate. We were not surprised by CDC’s 2013 statement that NEW US cases are 300,000 per year. We knew reported numbers were off by at least a factor of 10.
Advocates have also known for years, because the CDC has stated that tests for Lyme are inaccurate and yet, a person will want a Lyme test and a doctor will treat or deny treatment according to test results. Indeed, sometimes no treatment is given when there was a tick bite or rash and incredibly so, when a test result was positive! These denials affect our NY, USA and worldwide populations.
It is time that patients receive compassion and much better medical care.
The Empire State Lyme Disease Association, Inc., based in NY, is a nonprofit advocacy organization dedicated to helping patients suffering from early and later stages of Lyme and tick-borne illnesses through education, prevention, awareness and research. We are active in local, state, national and international issues.
Empire State Lyme Disease Association is affiliated with the Lyme Disease United Coalition (or LDUC) which has a membership of over 150,000 people. We are also pleased to be a member of Partners Against Lyme, (PAL or PALtad.org) which is represented by 45 states and 16 countries.
We support World Wide Lyme Awareness which has occurred world-wide for the past two years. Over 30 different countries and 30 US states were united in this effort. Worldwide events were held in Africa, Asia, Australia, Austria, Canada, Czechoslovakia, England, Finland, France, Germany, Ireland, Italy, Japan, Netherlands, Northern Ireland, Norway, Poland, Scotland, Sweden, Switzerland, UK, Wales. In the US, participants included Alabama, Arizona, California, Colorado, Connecticut, Delaware, Florida, Georgia, Idaho, Illinois, Iowa, Kansas, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Minnesota, Missouri, Montana, Nebraska, New Hampshire, New Jersey, New York, North Carolina, Pennsylvania, Rhode Island, South Carolina, South Dakota, Tennessee, Texas, Utah, Vermont, Virginia, Wisconsin, others.
More info is available here.
Picutred: A recent event Empire State Lyme Disease Association booth crowded with leaders and visitors from left to right, those seen are L Tebbe, J Baptissa, E Haughie and M Conan.