Submitted by Michele Miller, Central Mass Lyme Foundation Inc.
Region – Lyme disease is one of the most misunderstood and controversial diseases across our country. Getting properly diagnosis and treatment options are extremely difficult. I quickly found this out after losing my Mom, Jeanne to complications from untreated late-stage Lyme disease. Mom was full of life until she developed a rash on her upper back while spending the winter in Florida in early 2011. The non-blistering rash was quickly diagnosed as shingles and she was prescribed a steroid. Her health would never be the same after that.
If you had asked me a few years back what Lyme disease was, I would have thought that after a tick bite you would get a bulls-eye rash and your doctor would prescribe a dose of antibiotics. All would then be OK, as so many think. But I soon found out it wasn’t.
In May 2011, Mom came back from Florida and had trouble with her speech. My brother and I feared that she had a mild stroke, so an MRI was performed, and then reviewed by a chief neurologist. A month later, Mom received what she described as a death sentence: she was told she had ALS, otherwise known as Lou Gehrig’s disease. Her quality of life with this diagnosis would diminish rather quickly. Mom questioned the diagnosis and heard that a local holistic physician, who fortunately was Lyme literate, could possibly help. Her first appointment with this doctor reviewed her medical records and he ordered both the Elisa and Western Blot tests to determine what my Mom had been battling. These tests would be sent to a Lyme specific laboratory in Palo Alto, Calif. This lab has the highest accuracy for testing. Our next appointment four weeks later, he would diagnosis her with late stage Lyme disease and also having several co-infections, such as Babesia and Bartonella. Aggressive antibiotic treatment was prescribed but we were not aware at that time that this treatment could either kill her or save her. The next one-and-a-half years I would have to watch my Mom lose her capacity to talk, walk or swallow. Months later, unable to eat, she needed a feeding tube that would cause her to succumb to complications from aspiration pneumonia. Seeing her in this debilitating state has not easily been erased from memory. I was angry that the medical system had failed her and recognized that I needed to seek a grief counselor for witnessing the pain my Mother had endured.
I knew many others were suffering in silence and my husband, Ken and I founded the 501c3 organization, The Central Mass Lyme Foundation in 2014, a year after my mom’s passing. We help others get properly tested and treated through a Lyme literate physician. We have monthly meetings in Worcester and bring guest speakers to our group who can help.
On Saturday, Sept. 23, at the Worcester Technical High School, 1 Skyline Drive, in Worcester, we are having our third conference on Lyme disease. We bring in top professionals from all around the country to help educate the general public. For more information about our foundation or our upcoming conference, visit www.CentralMassLyme.org or www.CentralMassLymeConference.com.