Where Are Patients Reporting Alpha-gal Syndrome in the USA?

For years, Alpha-gal Syndrome (AGS) has often been described as a regional condition associated with the Lone Star tick and an allergy to red meat. Patient-reported data collected through Tick Bite Data tell a broader story.

Individuals living with Alpha-gal Syndrome continue to report from across the United States, demonstrating that this condition affects communities well beyond the areas most commonly highlighted in public discussions. While participation naturally varies by state, the growing geographic diversity of our survey reinforces the need for nationwide awareness among healthcare providers, researchers, and public health officials.

Importantly, these findings represent where patients are participating in the Tick Bite Data survey—not disease prevalence within each state. Survey participation is voluntary and should not be interpreted as population-based estimates.

Geographic Distribution of U.S. Survey Responses

Rank	State	Percentage of U.S. Survey Responses*
1	Missouri	30.0%
2	Kentucky	10.8%
3	Virginia	8.9%
4	Arkansas	8.1%
5	Tennessee	6.5%
6	Oklahoma	6.1%
7	Indiana	3.3%
8	Maryland	3.0%
9	Georgia	2.6%
10	Illinois	2.6%

More Than Geography

Although these states currently represent the largest proportion of survey participation, one observation stands out regardless of location: patients are reporting remarkably similar experiences.

Across the United States, respondents describe a broad spectrum of symptoms affecting multiple body systems—not simply reactions after eating mammalian meat.

Patient-reported symptoms collected through Tick Bite Data include:

• Neurological symptoms, including brain fog, headaches, dizziness, tremors, memory difficulties, and mental fatigue.

• Musculoskeletal symptoms, including muscle pain, joint pain, arthritis, stiffness, muscle cramps, and weakness.

• Cardiovascular symptoms, including rapid heart rate, palpitations, chest discomfort, and changes in blood pressure.

• Gastrointestinal symptoms, including abdominal pain, nausea, diarrhea, vomiting, reflux, and digestive intolerance.

• Dermatologic symptoms, including hives, itching, flushing, swelling, and hair loss.

• Respiratory symptoms, including shortness of breath, throat tightness, wheezing, and cough.

• Generalized symptoms such as fatigue, exercise intolerance, sleep disturbances, anxiety, depression, and reduced quality of life.

  
  

Taken together, these reports continue to support what many patients have been describing for years: Alpha-gal Syndrome often behaves as a complex multisystem condition rather than a simple food allergy.

Tick Species Reported Across the United States

Understanding where patients live is only one part of the picture. Tick Bite Data also collects information about the tick species participants believe were responsible for their exposure.

The table below summarizes the patient-reported tick species submitted from different geographic regions of the United States.

Geographic Region	Representative States/Territories Reported in Survey	Tick Species Reported by Respondents*
Pacific Northwest	Washington, Oregon	Blacklegged Tick, Chiggers
Southwest	Texas, New Mexico	Lone Star Tick, Blacklegged  Tick
Mountain West	Colorado, Idaho, Montana, Utah	Lone Star Tick, Blacklegged Tick, Seed Ticks (breed unknown)
Midwest	Missouri, Kansas, Illinois, Indiana, Iowa, Ohio, Michigan, Minnesota, Wisconsin, Nebraska	Lone Star Tick, American Dog Tick, Blacklegged Tick, Asian Longhorned Tick, Gulf Coast Tick, Brown Dog Tick, Rocky Mountain Wood Tick, Chiggers, Seed Ticks (breed unknown)
Northeast	New York, Pennsylvania, New Jersey, Connecticut, Massachusetts, Rhode Island, Vermont, New Hampshire, Maine, Delaware, Maryland	Blacklegged Tick, American Dog Tick, Lone Star Tick, Western Blacklegged Tick, Seed Ticks (breed unknown)
Southeast	Virginia, West Virginia, North Carolina, South Carolina, Tennessee, Kentucky, Arkansas, Oklahoma, Georgia, Florida, Alabama, Mississippi, Louisiana	Lone Star Tick, American Dog Tick, Blacklegged Tick, Gulf Coast Tick, Brown Dog Tick, Rocky Mountain Wood Tick, Chiggers, Western Blacklegged Tick, Seed Ticks (breed unknown)

While the Lone Star tick remains the species most commonly associated with Alpha-gal Syndrome, our survey continues to receive reports involving multiple tick species from a wide range of geographic locations. These observations do not establish causation or vector competence but may help identify important questions for future scientific investigation.

Looking Ahead

Every completed survey strengthens our understanding of Alpha-gal Syndrome.

As participation continues to grow, geographic patterns become clearer, symptom trends become more robust, and new research questions emerge. By combining geographic information with patient-reported symptoms, tick exposure history, and treatment experiences, Tick Bite Data is helping build one of the largest patient-driven datasets dedicated to Alpha-gal Syndrome.

The goal is not simply to map where people live—it is to better understand how this condition affects people's lives, improve awareness among healthcare professionals, and help guide future research into a disease that continues to challenge patients across the United States.