Thursday, July 19, 2012

Local Lyme Activist Calls for Immediate Action by Legislators.


McCleary: State faces a Lyme crisis
By Trish McCleary/Guest columnist
Posted Dec 21, 2011 @ 08:10 AM

As founder of S.L.A.M. (Sturbridge Lyme Awareness of MA) a Lyme disease awareness and support group and a Chronic Lyme survivor, I’m deeply disturbed by the lack of action toward the “Lyme Crisis” in the Commonwealth.

State Rep. David Linsky, D-Natick, claims to be taking appropriate action after acknowledging the “Lyme Crisis” months ago. After contacting the representative’s office, I received a phone call from an Aide claiming Rep. Linsky is waiting for a report from the still to be assembled “Lyme Committee” before he takes any further legislative actions to benefit Lyme patients in the Commonwealth. The phone call follows a letter I wrote to Rep. Linsky asking if he had any plans to further advocate for Lyme disease. I asked he allow another legislator take the lead if he was not going to take immediate action to those affected. I also asked for a written response to my letter but received only the phone call.

The crisis is indeed a crisis and demands immediate attention from our representatives. I’ve been contacted by two families recently who have family members gravely ill and being refused treatment at area hospitals. They are desperate for help for their loved ones and have nowhere to turn.

The IDSA (Infectious Disease Society of America) refuses to acknowledge the existence of Chronic Lyme disease and refuses to allow physicians wanting to help, permission to treat it, as was the case with a family seeking care at UMass in Worcester recently. This patient is down to 85 lbs. and having seizures while doctors continued to ignore the patient’s pleas. A lyme-literate physician in Connecticut offered to help but Infectious Disease doctors at UMass would not allow treating physicians to give her any treatment recommended and offered no other diagnosis or treatment for her symptoms.

A second family contacted me today, regarding a 23-year-old woman who is on a ventilator following a diagnosis of Lyme disease. UMass and Mass. General hospitals have both denied treatment, citing a previous one-week dose of antibiotics should have taken care of her issues! The woman remains in a rehab facility in Leicester on a ventilator untreated for Lyme disease.

Legislation is now in place in the commonwealth to allow physicians to treat Lyme disease for as long medically necessary. It seems this legislation has not given physicians who do understand the issues and the disease the freedom to treat patients in a hospital setting. Many Lyme patients are being denied treatment by doctors and hospitals within the commonwealth. Lyme has become a very political disease and despite anti-trust violations cited by, then Attorney General Richard Blumenthal of Connecticut, the IDSA continues to ignore insufficient treatment guidelines and deny patients available treatments. The treatment guidelines are being used by insurance companies to deny treatment coverage to those affected.

Our own CDC (Centers for Disease Control) acknowledges the underreporting of Lyme disease and the faulty testing available but offer no solutions. Testing is available through labs who have a more sensitive Lyme test, however, patients are forced to self pay for this testing. Why? Research being done by organizations specializing in Lyme disease is being ignored and our CDC should be asking why!
ILADS (International Lyme and Associated Diseases Society) is on the frontlines of Lyme disease treatment, research and physician education. ILADS offers a second standard of care which should be taught to physicians and made available to patients. The IDSA has worked hard to stop this standard of care from being taught. The ILADS treatment guidelines have been successful in the treatment of Chronic Lyme disease and is saving lives, I am proof of that! Once completely paralyzed by Chronic Lyme disease and turned away from five Mass. in seven days while in that condition, I have regained quality of life and the ability to once again walk and talk. My entire family has been infected with Lyme disease and the financial cost has been enormous. I had to go out of state for treatment and self pay to save my life.

The stories of people being turned away from Mass. hospitals and doctors is all too common. Our representatives need to do whatever it takes to stop this from happening and they need to immediately address the “Lyme crisis” in the Commonwealth of Massachusetts. Time is a factor for those who find themselves disabled by Tick-borne illnesses and struggling to find and afford treatment.

Below are links to organizations currently researching and treating Lyme and Tick-borne illnesses. I hope you will consider learning the facts and advocating for better testing and treatment of this epidemic:


www.ILADS.org - International Lyme and Associated Diseases Society

www.turnthecorner.org - Turn the Corner Foundation

www.lymedisease.org - CA Lyme Disease Association

Trish McCleary is founder of S.L.A.M., and a Chronic Lyme survivor.

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