Social media campaign raises awareness of “Texans and Ticks”
Press release from the University of Texas at Dallas, March 1, 2018
Dr. Sarah Maxwell took her two daughters to doctor after doctor to find out what was causing their extreme fatigue, joint pain, memory problems and flu-like symptoms. For two years, their illnesses remained a mystery.
“I kept saying, ‘Something’s wrong,’” said Maxwell, professor of public and nonprofit management in the School of Economic, Political and Policy Sciences at The University of Texas at Dallas. “We had some really frustrating experiences.”
Katharine, 18, and Claire, 16, went from competing in triathlons to missing months of school because they were so ill. Finally, they were diagnosed with Lyme disease, which is caused by the bacterium Borrelia burgdorferi transmitted through the bite of infected blacklegged ticks, according to the Centers for Disease Control and Prevention.
Katharine and Claire have now recovered, but after her daughters faced many misdiagnoses, Maxwell launched a social media campaign — Texans & Ticks — to raise awareness about the prevalence of the disease in North Texas. Though the disease is most prevalent in the Northeast, an increasing number of cases have been reported in recent years in other parts of the country, including North Texas.
Maxwell, who is not a medical practitioner, conducts academic research on social media use and engagement among nonprofit organizations. This is the first time that she has led a social media campaign. She said her goal is to create a dialogue with those who come to the site.
“Lyme disease can easily be overlooked because the symptoms are very nonspecific and mimic other illnesses, like the flu,” said Maxwell, who believes her daughters were infected when the family’s three dogs brought ticks into their house from the backyard.
“We hope this grant-funded project will trigger doctors to ask their patients questions about exposure to ticks, unusual rashes, or other symptoms as they make their diagnosis.”
Maxwell received a research grant from the Jackson, New Jersey-based Lyme Disease Association to support the project, which she is working on in conjunction with UT Dallas’ Center for Geospatial Research in Global Health Policy.
The Texans & Ticks Facebook page redistributes official information about Lyme disease and prevention strategies such as wearing long pants outdoors, using bug spray, checking for ticks and putting clothes in a hot dryer after being outside. As part of the project, Maxwell will evaluate how many visitors access the site and how they engage with the information provided.
“We expect that the findings will provide guidance to public health policymakers on promoting more attention and allocating resources to this disease,” said Kim, director of the geospatial research center at UT Dallas.
Claire, a high school sophomore, and some of her fellow students serve as volunteers for the public awareness project. The group recently met to learn more about the microbiology of Lyme from Ali Tejani BS’16, a McDermott Scholar who is a medical student at The University of Texas at Southwestern Medical Center, and Sanna Tejani, a biology senior who also is a McDermott Scholar. The brother and sister also talked to the group about getting into medical school.
Claire hopes greater awareness about Lyme disease in Texas will lead to earlier diagnoses.
“I am happy to work on the Texans & Ticks project because I could have been diagnosed years earlier,” she said. “I had been feeling tired and run down for a long time, then the fevers started, and from there I had extreme fatigue, headaches, neck pain and backaches. We want to reach as many doctors as possible so kids don’t miss their childhood over a tick bite.”
I have been sick from 2 ticks at same time in same place. We need help for this. If you don’t fine a doctor that understand lyme. You just have to put up with it. I live in Manassas Va. No infectious disease doctor will help me. I don’t have the money to pay out of pocket. Help is needed of alot of people. It’s sad no one believes me when I say what is going on with my body.
I live in Beaumont, Texas, Southeast region. I suffered for years joint pain, brain fog, headaches.I went from being a triving teacher to barely existing. I saw over 50 doctors in big name hospitals with no diagnose or treatment. Lastly, I paid out of pocket to a lyme literate doctor in Maryland and in my first visit he found lyme, rocky mountain spotted fever..He started me on antibiotics.Im feeling a bit better, no where near normal. I spent thousands of dollors looking for a diagnosis. I wish I couold help other people from going through whatIm enduring.
God bless her for recognizing Lyme as a very large problem & making others aware.
I live in the Dallas area; diagnosed with Lyme a year and a half ago. I was on antibiotics for about 9 months. Symptoms still with me. About to begin a herbal protocol to see if it helps. My main point in posting this is that I’ve been told (by my doctor) and have read that it is now believed that mosquitoes carry the bacteria as well. If this is true, then Texas and many southern states need to be prepared for the continued influx of Lyme in our areas.
I live in Central Texas. Had a tick bite here with a huge bull’s eye on my back. My acupuncturist found it. I am not sure how long it was there. Doctors laughed at me when I suggested antibiotics. Finally got them over a month later. Center for disease control laughed at me when I reported my symptoms. I have had joint pains, extreme fatigue at random times since. Was told not to bother testing by everyone. My bite coincided with turning 42. I was told I was healthy and it’s just midlife inflammation reality. I work as a Pilates instructor. So, I work a lot on my immune system and appropriate movement. Not even sure what I should do besides healthy living. Is there a reliable test? As a UTD alum, I would love to be part of a study to get help…or have someone definitively tell me it’s not Lyme disease. I am afraid to test with the current lack of reliability and be labeled with a preexisting condition in current insurance market.
Lymes for 31 years ?!?!
What I’ve learned about Lymes from webinars, testimonials, comment threads, and various research it appears lymes from a deer tick about 1987 is the reason for decades of brain fog, fatigue, lifelessness, slurred speech and perhaps insomnia. I was diagnosed in 1990 and had to go through 2 rounds of antibiotics to get a ‘cured’ report. The slurred speech stopped in 1990 however the remaining symptoms have continued to varying degrees. In my youth i had exceptional health! To miss out on half a life time (alone) with lymes is a loss to society, myself and more. It should not be that way!
So I have sudden pain in my left ankle when I walk, had a little red spot on the inside of it that scabbed over then went away. In 2012 or so I removed a tick head from the base of my skull, but the little bugger originally bit me in the crotch. My last big symptom was bell’s palsy 3 or 4 years after I removed the tick head from my body. When I was bit I was so sick I though I may die at age 12. Still untreated at age 31.
Tell your docs to contact the International Lyme Disease Association. I was diagnosed with Lyme in 2004 after 14 docs failed to diagnose me. A symptom started 30 yr before that. I was inside the house- in Md., when I got bitten by somethings that were too small to see. It left circles, eraser sized. I finally found a Lyme specialist, after I contacted a holistic practitioner for names of Lyme specialists. The book “Chronic Fatigue, Fibromyalgia, and Lyme Disease” listed 38 symptoms. I had 30 % of symptoms then. I lost 1 yr. and 3 months going to these docs. it also depends on the labs used . Most do not adequately test for Lyme. The lab that, back in 2004, knew what to do, tested 16 bands of blood. Local labs tested 2 bands. Get your test results and encourage someone to make corrections. I’ve contacted the AMA and they did nothing and sent a form letter that did not address my concerns. Who to contact tot make these changes??
Live in Beaumont, Nurse Practitiner I visit was adamant about running more blood tests, Thank God I complied. Just diagnosed in January by Lyme Speicalist Dr S. I apparently only have one strand, 6 weeks of antibiotics and I am good as Gold – so they believe, understand at this point. Praying for healing and progress. Have learned so much since Jan., so many are in need of immediate help.