Lyme Handbook

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.

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