Lyme Aware

Category Archives: Lyme News

Please Assist the New York State Coalition on Lyme & Tick-borne Diseases

Send Your Letters Deadline is April 8th

Dear fellow Lyme patient and Lyme patient advocates,bullhorn

I know you have received earlier copies of this. If you haven’t yet sent your letters, this is an update that is more clearly understood and includes a sample letter for your US Senator or US Congressperson to use and a pdf file you can send to them.

As you know, the IDSA is preparing to hand down their new guidelines for Lyme disease and a major concern is that the IDSA may not consider all the scientific evidence and all the patients’ claims while in the process of revising their (previous) guidelines.

Read More…

Letter from TBDA re Lyme Disease Bill in New York

TBDADear Friends,

 

I hope this letter finds you well. As you may have heard, Governor Cuomo expressed his intention to sign into law New York State Lyme disease legislation S07854 and A07558B-which is presumably great news for the Lyme disease community-but he wants to make tweaks and amendments to the bill before signing. It is crucial that Governor Cuomo sign the bill as it currently stands, without any further amendments. Further amendments could diminish the bill’s efficacy. We have updated the Governor Cuomo letter on Voter Voice to reflect the current situation.

The MayDay Project Protest October 11, 2014

1-Candle

October 10, 2014 – CANDLELIGHT VIGIL- 6:00-9:00 PM

TIMELINE OF EVENTS FOR OCTOBER 10th-11th

October 10, 2014

CANDLELIGHT VIGIL- 6:00-9:00 PM, 1201 Market Street, Downtown Marriott

October 11, 2014

PROTEST- 8AM – 3PM, Philadelphia Convention Center

PLEASE READ THE FOLLOWING REQUESTS AND RULES:

1)The Mayday Project is asking that everyone please wear black shirts to the events. Green armbands will be given out to the first 200 in attendance.

2)No protest signs permitted at the Candlelight Vigil

Read More…

Lyme Disease Awareness Press Release

ESLDALogoFOR IMMEDIATE RELEASE

Lyme Disease Awareness

Contacts:  Eva Haughie

Empire State Lyme Disease Association, Inc.

Office: (631) 905-8513 Fax: (631) 878-0914

P.O. Box 874 Manorville, NY, 11949

Email: empirestatelyme@aol.com Url: www.empirestatelymediseaseassociation.org

Judith Weeg

Lyme Disease United Coalition

PO Box 86 Story City, IA 50248

Office: (515)432-3628   Fax: (888) 746-3810

Email: lymeinfo@lduc.org   Url: www.lduc.org

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: http://whatislyme.com/category/2014-lyme-awareness-campaign

Cairns Dad Spents Months Bedridden After Tick Bite

exclamationCairns Dad Spents Months Bedridden After Tick Bite

A CAIRNS father who has spent months hospitalised and bedridden, battling for correct diagnosis of a debilitating illness, is urging greater awareness of tick-borne diseases. Jason Bursztynowicz, 29, endured flu-like symptoms for almost 10 months after being bitten by a tick at the Manjal Jimalji trail at Mossman Gorge in September 2012. About one year later as his symptoms worsened, he pushed for multiple tests to investigate the cause of his sickness. Read more.

House Committee Passes Federal Lyme Bill

capitolHouse Committee Passes Federal Lyme Bill

Legislation that would aid in the research of tick-borne diseases has passed the House Energy and Commerce Committee. Sponsored by New York Congressman Christopher Gibson, it now goes to the full House for a vote. The bill sets up a “working group” to meet with the Department of Health and Human Services in developing a strategic plan “for improving outcomes of Lyme disease and other tick-borne diseases, including progress related to chronic or persistent symptoms and chronic or persistent infection and co-infections.” Read more.

House Committee Passes Federal Lyme Bill

capitolHouse Committee Passes Federal Lyme Bill

Legislation that would aid in the research of tick-borne diseases has passed the House Energy and Commerce Committee. Sponsored by New York Congressman Christopher Gibson, it now goes to the full House for a vote. The bill sets up a “working group” to meet with the Department of Health and Human Services in developing a strategic plan “for improving outcomes of Lyme disease and other tick-borne diseases, including progress related to chronic or persistent symptoms and chronic or persistent infection and co-infections.” Read more.

Are Birds Spreading Lyme Disease?

thumbnailCACH1DO8Are Birds Spreading Lyme Disease? Montclair State Researcher Uses Crowdfunding For Study

MONTCLAIR — After contracting the illness twice in three years, Heather Kopsco knows plenty about Lyme disease. The Montclair State University graduate student was first diagnosed with the debilitating illness in 2011, probably after getting a tick bite during a summer spent in Cape Cod and New Jersey. She suffered for month with crippling fatigue and joint and muscle pain. Read more.

Lyme Disease Infections On The Rise In Texas

texasLyme Disease Infections On The Rise In Texas

TYLER, TX (KLTV) – Health officials say Lyme disease is currently the most common and fastest growing tick-borne disease in the United States. According to the Centers for Disease Control and Prevention, the number of those infected is on the rise in Texas. Wednesday, Ashley Metcalf enjoyed a day in the park with her son but a few days ago, time outdoors ended with a trip to the emergency room. Read more.

KLTV.com-Tyler, Longview, Jacksonville, Texas | ETX News

Long Island Boy Diagnosed With Rare Strain of Lyme Disease

NewYorkLong Island Boy Diagnosed With Rare Strain of Lyme Disease

A Long Island boy has been diagnosed with a rare strain of Lyme disease after playing in a wooded area with friends recently, and one Suffolk County doctor says the disease seems to be infecting people at an alarming rate this summer. The 13-year-old boy began to get sick two weeks after he was bitten by the bug, suffering a fever and “excruciating” headaches, according to his mother Christine Brennan. Read more.

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