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Citizen-Scientist Study is First to Find Ticks Capable of Carrying Lyme Disease in 83 U.S. Counties Where Previously Undetected

Study Validates Citizen Participation as Viable Method for Health Agencies to Evaluate Tick-borne Disease Risk

PORTOLA VALLEY, CA, July 12, 2018 — Bay Area Lyme Foundation, a leading nonprofit funder of innovative Lyme disease research in the U.S., today announced the results of the first citizen-scientist study to evaluate the prevalence of disease-carrying ticks throughout the United States. Conducted through a partnership with Northern Arizona University and Colorado State University and published in the peer-review journal PLOS ONE, the study is based on a massive sample of more than 16,000 ticks collected from 49 U.S. states and Puerto Rico. The study found ticks capable of carrying Lyme and other tick-borne diseases in 83 counties (in 24 states) where these ticks had not been previously recorded. The program received a six-fold increase in tick submissions over initial estimates, representing unprecedented national coordination of a ‘citizen science’ effort and diagnostic investigation.

“Identifying geographic patterns of tick-human contact provides valuable insight that may help public health officials, patients and physicians become more vigilant about Lyme disease, increasing early diagnosis,” stated Linda Giampa, executive director at Bay Area Lyme Foundation. “Based on these findings, it is critical that residents throughout the country take precautions and know the symptoms of tick-borne infections, even in areas where ticks have not previously been shown to cause disease.”

The 24 states that contain counties with newly documented Ixodes scapularis (deer tick) or Ixodes pacificus (Western black-legged tick) populations are:  Alabama, Arizona, Georgia, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Michigan, Minnesota, Montana, Missouri, Nevada, North Carolina, Ohio, Oregon, South Carolina, Tennessee, Texas, Utah, Virginia, Washington, and Wisconsin.

“The overwhelming study participation from residents throughout the country and the surprising number of counties impacted demonstrates that great interest and need exist throughout the country for this information,” said lead author Nate Nieto, PhD, associate professor in NAU’s Department of Biological Sciences. “This study offers a unique and valuable perspective because it looks at risk to humans that goes beyond the physician-reported infection rates and involves ticks that were found on or near people.”

Not all public health agencies throughout the United States have tick collection, disease risk assessment systems and/or tick-borne disease reporting requirements. Importantly, this study showed disease-causing pathogens were found in areas that may not have sufficient reporting structures. For example, researchers found ticks carrying Babesia, microscopic parasites carried by ticks that cause the disease babesiosis, in 26 counties (across 10 states) in which the public health department does not require physicians to report cases of babesiosis.

Other interesting findings include:

  • Anaplasma, Babesia, and Borrelia pathogens were found in all three of the most commonly encountered ticks collected – Ixodes, Amblyomma and Dermacentor species
  • All life stages of these three tick species, including some larvae, were found to be infected with both Borrelia burgdorferi and Borrelia miyamotoi
  • Several Amblyomma americanum, which is commonly known as the Lone Star tick and capable of carrying bacteria that cause disease in humans, were found in Northern California, the first known report of this tick in the state

The study stemmed from the free tick-testing initiative supported by Bay Area Lyme Foundation and conducted by Northern Arizona University. Ticks sent to the initiative from January 2016 through August 2017 were tested free of charge for four of the most common bacterial infections: Borrelia burgdorferi, which causes Lyme disease; Borrelia miyamotoi, which causes tick-borne relapsing fever; Anaplasma phagocytophilum, which causes human granulocytic anaplasmosis, and the protozoan pathogen, Babesia microti. These data were categorized, mapped, and recorded, as well as provided to the submitter. Ticks were submitted from every state except Alaska.

Typical tick collection methods involve researchers canvasing various terrain with large sheet-like material, which collects ticks, but does not take into account a tick’s natural attraction to mammals.  The limitations of citizen studies include uneven awareness of the program across geographic areas, the fact that ticks may remain attached to a person as they travel, and reliance on motivation of people who encounter ticks.

About Lyme disease

One of the fastest–growing infectious diseases in the country, Lyme disease is a potentially disabling infection caused by bacteria transmitted through the bite of an infected tick to people and pets. There are about 329,000 new cases of Lyme disease each year, according to statistics released in 2015 by the CDC. As a result of the difficulty in diagnosing and treating Lyme disease, as many as one million Americans may be suffering from the impact of its debilitating long-term symptoms and complications, according to Bay Area Lyme Foundation estimates.

About Bay Area Lyme Foundation

Bay Area Lyme Foundation, a national organization committed to making Lyme disease easy to diagnose and simple to cure, is the leading public foundation sponsor of innovative Lyme disease research in the U.S. A 501c3 non-profit organization based in Silicon Valley, Bay Area Lyme Foundation collaborates with world-class scientists and institutions to accelerate medical breakthroughs for Lyme disease. It is also dedicated to providing reliable, fact-based information so that prevention and the importance of early treatment are common knowledge.  A pivotal donation from The LaureL STEM Fund covers all overhead costs and allows for 100% of all donor contributions to Bay Area Lyme Foundation to go directly to research and prevention programs. For more information about Lyme disease or to get involved, visit or call us at 650-530-2439.


20 Comments on “Citizen-Scientist Study is First to Find Ticks Capable of Carrying Lyme Disease in 83 U.S. Counties Where Previously Undetected

  1. I was diagnosed with Lyme, Rocky Mountain, and Alpha Gal from a tick bite. I removed the tick myself and had labs ran within 24 hours. I only had one lone star tick on me. It left a rash. The tick was only attached for approximately 4 hours. I kept pics of the tick and pics of the rash. It was hard to get tested appropriate testing because the type of tick didn’t match the rash and the symptoms I had.

  2. I was diagnosed 5 mos ago with Lyme. I did three weeks of Doxy and two weeks later it returned. I did two more weeks and it has returned once again. I am suffering heavy fatigue, foggy brain, and horrible joint pain and weakness in my arms and especially my knees. I live in Minnesota and am struggling to find anyone who seems to know anything. I have been to two primary doctors who could not even give me a referral to anyone. I really want to get on top of this before it takes over my life, as it seems to be doing for so many people. I am so frustrated and when I research it seems like people just throw things up at the wall to see what sticks. I have not seen any consensus on what really works. Do you have any recommendations?? Do you think your research will result in any future medication or cures in the near future? Any help or advice would be so appreciated. Thank you sooooo much for focusing on Lyme. It is more insidious that I had ever imagined.

    1. Christine, We would strongly recommend you consult the International Lyme and Associated Diseases (ILADS) physician directory to find a referral for a knowledgeable doctor in your area. It is important you continue to advocate for yourself until you find the right care. Bay Area Lyme is committed to supporting the most innovative and promising research for better diagnostics as well as treatment and work hard to accelerate bringing new findings to market. We hope to have more solutions and ultimately a cure for this insidious disease. Best wishes.

    1. Due to overwhelming response, we had to suspend the Citizen Science Tick Testing project program until further notice while the researchers are catching up on the backlog. However, for diagnostic purposes, we always recommend that you consider using a pay-for-service lab such as IGeneX or TickReport. Please also keep in mind that current diagnostic tools for Lyme and other tick-borne infections may give false negatives, so it’s important to be aware of your own physical health and seek continuing advice if you start to feel ill and always consult with your physician or care provider. You can find a more complete list of symptoms here and you can find doctor referrals here in the International Lyme and Associated Diseases Society directory.

  3. I was diagnosed with Lyme disease four years ago. I was so terribly sick. I think my worst complaint was the severe headache. I was taking doxycycline hyclate 100 mg as treatment for Lyme disease, twice a day for 21 days and didn’t seem to be improving. I did not display a rash or any kind of bullseye. Diagnosis was from blood test. We tried every shot available but nothing worked. My Lyme disease got significantly worse and unbearable because of cognitive thinking. In 2015, our physician advised we go with natural treatment and I was introduced to Organic Herbal Clinic natural organic Lyme Disease Herbal formula. I had a total decline of symptoms with this treatment. The fever, joint pain, weakness, shortness of breath, anxiety, and other symptoms have subsided.

  4. I submitted two ticks for which I received negative results back (#FTT7762 & #FTT7763) from Laramie, Wyoming. I am wondering why Laramie is not shown on your map?

    Thanks for the work that you are doing!

    1. Max, thanks for your question and the tick submission. We learned a lot from this tick study and look forward to sharing more of the results over the coming months. We never anticipated such overwhelming citizen involvement and are grateful to all who took the time to collect and send in their ticks!

      To answer your specific question, the map shown here is only reflecting Ixodes or black-legged ticks. There were many types of ticks collected — we received ticks from every state other than Alaska and several different species. Many of the other ticks also carry related tick-borne diseases and frequent co-infections such as Babesiosis, Bartonella, and Rocky Mountain Fever.

      You may want to consult the full research paper published in PLOS One for more details about the study, including the incidence of all ticks received (including those received from Laramie, which may well have been Rocky Mountain wood ticks). Figure 1 in this paper shows both the distribution and incidence of submissions to the tick-testing program.

      We learned so much from this study and, as one of our lead researchers excitedly shared, “there are more papers on the way!!” — we will continue to share results and learnings in the months to come.

  5. If you could/would get the statistics from Texas A&M Vet Med College, you could turn the whole state of Texas just as blue as CT! We have a pandemic in our state going unrecognized due to insurance companies, politicians, and greed! People are suffering, becoming disabled, and dying daily due to these horrendous infectious diseases which are NOT being reported to the CDC as they should here in Texas! Even the CDC cultured Lyme disease in our ticks cld aa far back as 1991! Nothing was ever done to stop its spread and so now it is pandemic and no doctors, hospitals, ERs, children’s hospitals, no one are allowed to test or treat!!! We need help with getting accurate statistics out!!!

    If the testing is being denied, the state has nothing to report!!!! Please contact Texas A&&M Vet College of Medicine to get the true numbers! They have all the infectious diseases the ticks in Texas are carrying!!! The info is simply not being provided to the proper authorities due to $$$$$ and economic downfall effects for the state! How many Fortune 500 companies do you think would be moving their headquarters and facilities to our state, IF they knew it were CT on steroids x1 million? None. So it’s being covered up and people are dying!!!! Please HELP us get out the true facts!!!! Thank you for your tremendous work/efforts to get the true numbers out! It’s sad we can no longer depend on the CDC or any governmental agencies to do the right thing and end these travesties! Crimes Against Humanity with human torture here in the huge state of Texas, Pandemic for Lyme disease and a huge host of other even deadlier infectious diseases being ignored by “the powers that be”!!!!’

  6. I heard Wendy Adams speak on an NPR program yesterday and am very happy that Lyme disease is finally being recognized. I have had a variety of symptoms for 15 + years. I live in Oregon and was finally diagnosed with Lyme and 3 co-infections in 12-2014. I lived in Utah and am an outdoor gal, traveling through the Western states. Not sure where I got bit. Initially, I was treated with low dose (and the wrong type of antibiotic) by an ND that was “trying” to be a Lyme expert without the training. I appreciated finally having someone recognize symptoms and addressed appropriate testing. After one year, I left her practice and was treated solely by an Lac with training in Chinese medicine. Currently, I found a wonderful and skilled ND who has trained with ILADS practitioners. I am on a high dose of 2 different antibiotics in addition to finally being strong enough to add heavy metals detoxing to my treatment plan. Additionally, I have been put on T3 and progesterone. I take several supplements to compliment my Western medicine regime and continue to be treated with my Lac. I finally am feeling back to my old self, although I will carry certain side effects of the Lyme bacteria, probably for life. On an added note, we were in Florence, Oregon 2 years ago, tramping through the beach grass in March with horses and dogs. When we got back to the house we probably combed off 20 ticks off each dogs. They were the Lone Star tick, both adult and juveniles. Unfortunately at that time I did not know about the free tick testing. Anyhow, thanks for continuing your research!

  7. I was diagnosed a year and a half ago with Lyme disease after three months of flu-like symptoms and severe knee and foot pain. Finally, after several tests and an expensive MRI, I was diagnosed. I was put on doxycycline and had a severe reaction to that, so then they put me on a different medication. My pain still didn’t go away for good. I still had bouts of pain and fatigue that last weeks. I was seeking something to help regain my life to be able to do things for myself. Through my primary physician i learnt about a Lyme disease herbal formula from NATURAL HERBAL GARDENS and their success rate with the treatment, i immediately started on the Lyme disease herbal protocol, I am glad to report the herbal formula worked effectively and there was no side effects, I had a total decline in symptoms, the pains, chronic fatigue and other symptoms stopped, my Lyme disease is totally REVERSED

    1. Warning to all reading this: The company “Natural Herbal Gardens” is a residence in South Africa. They call themselves “doctors” and are constantly creating false profiles with fake reviews on both Facebook and any Lyme Disease sites they can find. I have yet to find any reviewer who is a real person or a real profile.

  8. Can I ask if you found any Lyme infected ticks in Australia?

    There is some controversy here over whether it can be found here.

    1. The tick testing service was not promoted outside of the US, hence I don’t believe there were any samples received from Australia. Will confirm with the research team and let you know if otherwise. Thank you for the question.

    2. A few years ago in Australia, a woman sued the government to get her husband, who had died, recognized as a victim of Lyme disease. She won!

    1. Georgia, thank you for your question. We are very pleased with the overwhelming response to the survey however it was a voluntary citizen science project — ticks were sent in voluntarily by individuals who encountered ticks.There was no “recruitment” for this study so results are only based on awareness and individual motivation to collect and share samples. While we did have some submissions from the Rocky Mountain region, there were no positives in the ticks collected.

      With these results, we hope to increase awareness throughout the country about the need for better tick collection, disease risk assessment systems, and tick-borne disease reporting. We also hope to resume the free collection and testing program in the near future so please spread the word!!

  9. I was diagnosed with late-stage disseminated Lyme disease four years ago after blowing through multiple symptoms over five to ten years.

    I never recalled getting a bite, so I can’t say when or where I was bitten. This could have happened in the Northwest, but most likely in the Southeast and I believe on Cumberland Island, in Georgia.

    Living in Florida, I’m of the opinion that most medical practitioners here lack a real knowledge of Lyme disease and are oblivious to the symptoms or treatments. While the latest test after three plus years of antibiotics show a low level of Lyme activity, the damage is pretty much done.

  10. I received Lyme disease from a deer tick I removed off my arm from an area in my front yard in Beauregard Parish, Louisiana. Symptoms began within a week of removing the tick, but it took four years to diagnosis. This parish is not marked on your map. I wonder how many other areas were missed.

  11. Thank you so much for gathering this data. I’m so glad I was able to contribute. I hope we can make a difference so people can become more aware.

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