Posted on May 2, 2017 in Blog |
The only information I knew about Lyme Disease in 2009 was what I had learned during my Aunt Betty’s illness from 2000 until 2002.
My aunt’s story is the worst of all stories: refused a lyme test by her internist, she fought for a year to be diagnosed correctly. She had the classic tick bite and EM rash, but because of the arrogance and narrow-mindedness of one physician, Betty could not get the test nor the treatment she needed for a full year.
Before being bitten by a tick in her yard, Betty was a vibrant clinical psychologist and tenured professor, teaching psychology courses to master’s level and doctoral candidate students at Auburn University, religiously attending every home football game in her orange and blue. Betty was a “typical” Auburn fan, singing the fight song every week, shouting “War Eagle” when a stronger defense was needed, and crying when the Tigers lost. Betty grew up in Auburn. She earned her undergraduate degree at Auburn. It was home. Teaching at AU was her lifelong dream.
Betty and her husband Troup lived on eight acres on the outskirts of Auburn, Alabama with their horses Sid and Kallie, and their one-eyed goat, Jack. Betty took riding lessons with Kallie on occasion, but mostly, Betty loved nuzzling with her horses and feeding Jack any spare apples she had. She had a good life with a job she loved, a long, happy marriage, a grown son, and a home she and Troup had designed more than a decade earlier. Betty was physically fit, strong, and one of the most attractive women I have ever seen. She could have won any beauty contest with her trim figure, tall stature, and impeccable taste in clothes.
Betty was no wallflower. Her beauty and style brought everyone’s eyes to her as she entered any room. She felt throughout her life she didn’t necessarily fit in with the crowd, but those around her wanted to fit in with her. She spoke her mind. She would debate and convince those around her to embrace everyone’s differences and vulnerabilities.
In June 2000, Betty went to her internist, complaining of a rash starting at her knee. It was 3 inches wide and descended down her calf about 9 inches. He diagnosed it as an allergic reaction to sunscreen. “I know a Paba reaction when I see it,” he declared. As to why the rash appeared nowhere else where Betty had applied sunscreen, he had no explanation.
“Do you think it might be Lyme Disease?” Betty asked.
“No, it’s not Lyme,” he replied. “We don’t have Lyme Disease in Alabama.”
Betty was a strong-willed woman, but she could not convince this physician to order a Lyme test.
Less than two months later, Betty was back in the doctor’s office complaining of cramping, twitching, numbness, and her toes were drawing up.
Another three months passed. She complained of “both legs not working right” and twitching in her arms, legs, neck, and back. She had foot drop on the left foot, causing her to fall twice. Still, no Lyme test.
Betty tested positive for Lupus, but apparently there was no follow up on this.
Eight months after Betty’s initial bull’s-eye rash, after a severe decline in her physical health, at Betty’s insistence, the internist ran a Lyme test, using the least reliable ELISA test. It was negative. The internist said, “Well, what do you want to do?” Betty asked to see a neurologist.
At a well-known southern teaching university hospital, a neurologist ran a nerve conduction study and diagnosed Betty with ALS. A rash on her leg caused ALS? There is no specific test to diagnose ALS. It is a diagnosis physicians give when they don’t know what else to do. It was a death sentence.
Betty and Troup came home devastated. Desperate to better understand ALS and to look for possible alternatives, Troup voraciously researched the Internet and talked with anyone who would talk with him about Betty’s symptoms.
This is the point where they learned of IGeneX laboratory in San Diego, California, of their Western Blot testing. They went back to the internist and demanded retesting for Lyme from IGeneX. The internist acquiesced and ran the test through IGeneX. Every result came back positive for Lyme. Unfortunately, by this point, Betty’s health had declined to the point she was using a walker.
Fourteen months after the initial tick bite, in August 2001, Betty was finally prescribed oral antibiotics for 30 days until a PICC line could be inserted. Her symptoms improved for the first time, though not tremendously.
“In two days, with exactly two doses of antibiotics, she started getting better,” Troup later recalls. “It convinced me we were on the right track.”
On October 11, 2001 Betty had a PICC line inserted and started iv antibiotics. The iv Rocephin improved Betty’s swallowing and breathing capabilities. In the next phase of treatment, her physician started her on iv Azithromycin, which halted the deterioration, but did not improve any of her symptoms. By this point, the infection was too far widespread for any effective advancement.
By March 2002, Betty was in a wheelchair with little feeling in her legs and no strength in her arms. Betty’s strength and energy were destroyed. She had gained 50 pounds and was unable to walk. She was losing strength in her arms as well. Because of her immobility, she was at high risk for blood clots. She was still taking iv antibiotics, which had significantly slowed the progression of her symptoms. She was still meeting with her doctoral students at her home, consulting with them about their respective theses and internships. She was no longer willing to travel to campus. She was ashamed of her weight gain and wheelchair use. It was the only time her son Terrill had seen the extent of Betty’s only character flaw: her vanity. She couldn’t bear to be seen in this state.
“Lyme Disease stole my mother’s beauty, wisdom, strength, and education,” her son Terrill later told me. “It left her with no hope.”
On June 5, 2002, Troup was feeding Betty soup for lunch when she simply dropped her head and slumped over. She was dead in an instant with no warning. A blood clot had traveled from her leg to her heart; a pulmonary embolism. There was no way to bring Betty back.
It took a single tick bite less than two years to strip Betty of most physical functions, eventually killing her, and robbing her family, friends, students and coworkers of her precious talent, heart and laughter.
I share this story not to make patients lose hope but rather to validate the experience that I know personally many patients have had. “There is no Lyme Disease in Virginia,” a practicing physician stated in 2016, regardless of strong evidence to the contrary. Weekly, I hear stories from frustrated patients about physicians refusing to test for Lyme or stating it is a false positive even though the patient has the tick bite and EM rash.
I share this story to help patients realize sometimes they have to DEMAND to be tested AND to be treated. If you don’t get the treatment you need from one physician find another practitioner who will. Never give up. Keep going until you get the testing and treatment you need to heal.
Sharon Rainey is the co-author of Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners.