This is Part One of the two part story. Stay tuned for Part Two
Imagine being told the pain you are feeling throughout your body is not real and then you are sent home with a prescription for depression and anxiety. This is true in Wisconsin in spite of the fact that Lyme disease, caused by small ticks, can be found in almost every county in the state. In 2019 the state ranked No. 5 for Lyme cases.
Wisconsin Watch spoke with five women who have been searching for answers to their debilitating symptoms. They have, in desperation, experimented with personalized treatment. They have had to tolerate this as well as the humiliation of being turned away and continuously denied validation of their symptoms.
A survey conducted in 2010 showed that out of 285 primary care doctors involved in the survey, only six doctors acknowledged that Lyme disease may still be present after treatment. It is called chronic Lyme disease or as the CDC labeled it, Post-Treatment Lyme Disease Syndrome. Since at present there is no treatment for the post-treatment disorder the women have had to resort to personalized treatment
Therefore, there are two main groups. Patients with symptoms whose test results are negative while others have test results that are positive and the symptoms remain long after treatment.
Their Stories
Alicia Cashman has been treating her symptoms of Lyme disease for ten years but only recently understood why and what caused the symptoms. Alicia currently heads the Madison Area Lyme Support organization in Madison, Wisconsin.
Alicia’s self-prescribed medical program included antibiotics, homemade capsules, tincture, and creams. These varied and sundry items were self-administered to combat joint pain, insomnia, fatigue, and mental fog.
Crystal Pauley had been a physician assistant, yet she was not familiar with Lyme disease. Crystal said the disorder was not covered in her studies.
But many years later Crystal became familiar with the disorder when she tested positive for Lyme’s disease. In 2020 Crystal began having joint pain, brain fog, and debilitating knee pain. She now considers herself very conversant with Lymes’ disease.
Shelbie Bertolasi, age 47, an at-home mother of five, was healthy and had a steady workout routine until seven years ago.
Judy Stevens, 52 years old was a psychotherapist and school counselor in Wauwatosa, Wisconsin. Judy coached cross-country at school and participated in many school activities. Coincidentally, her symptoms began almost immediately after the death of her father.
Judy’s symptoms, brain fog, joint pain, insomnia night sweats, and hair loss were similar to those experienced by the other women in this group.
Jessica Croteau, of Rice Lake, Wisconsin was the only person out of the five women who actually saw a tick. It was the summer of 2019 when she noticed a tick on her neck. Although she immediately began to experience symptoms similar to having the flu, her Lyme disease tests were negative.
