Archive for the ‘Ticks’ Category

Tick Bite Leads to Murder-Suicide

https://www.trialsitenews.com/a/true-crime-as-true-lyme-tick-bite-leads-to-murder-suicide

True Crime as True Lyme: Tick Bite Leads to Murder-Suicide

Investigative Journalist at Trial Site News | In this to change this.
Jul. 24, 2024, 4:30 p.m.

Tortured by Lyme disease, a young man killed his friend and himself. He is not alone.

MARY BETH PFEIFFER

For decades, Lyme disease physicians have seen a small share of late-stage patients with symptoms far beyond the physical ravages of a tick bite. These patients, estimated to be 1 percent of chronic Lyme psychiatric cases, manifest brain disorders so intractable that they become violent, even homicidal.    

Now, a new article in the science journal Heliyon validates these observations and reveals possible mechanisms driving them. It tells the horrific story of a 32-year-old man whose tickborne infection at age 14—one of several—went unrecognized until it was unresponsive to treatment. Failed by short-course antibiotics that mainstream medical guidance swears by, he descended into substance abuse, as many chronic Lyme patients do, to ease his anxiety, depression, and physical pain.

Finally, in the delusional throes of PCP withdrawal, he walked next door, impulsively killed his best friend, stabbed the friend’s father and brother, and turned the knife on himself. He died on a bathroom floor, his mother having tried in vain to stanch two neck wounds.

All of this is a likely outcome of poorly treated Lyme disease under medical protocols that leave even early-treated patients sick—36 percent at six months and 5 percent at fifteen years. While animal studies and a handful of post-mortem reports have illustrated the failure of recommended treatments to quell Lyme disease—using antibiotics in insufficient strength or duration—this study goes further.

For the first time, based on analysis of autopsy samples, it shows both how persisting infection combined with chemical brain changes from substance abuse may have contributed to a disastrous outcome.  (See link for article and study)

________________

**Comment**

It’s stories like these that also make me highly critical of any federal attempt at rectification.

This story is a perfect example of how many go undiagnosed for so long they become recalcitrant.  The picture becomes muddier yet as they seek out ways to simply cope – and in this case turn to harmful drugs which adds a whole other dimension to an already complex picture.

The study thankfully was led by none other than Dr. Robert Bransfield, a literal icon in the world of Lyme and psychiatry.  He’s single-handedly written pretty much all that is known about how Lyme/MSIDS affects the brain.  Even though since 2015 the APA has recommended that evals for mental illness include assessments of ‘locally endemic infectious diseases such as Lyme disease,’ be done, they typically aren’t done.

The study showed that the patient had attached ticks on him at least fifteen times.  At 14 he developed the hallmark summer flu-like illness Lyme is known to cause that his pediatrician considered to be caused by a virus despite an attached tick!  His brain was found to have major inflammation and quinolinic acid – both of which are common in late Lyme disease.  PCP, the illegal drug he took reduces quinolinic acid.

The patient sought but was denied a bed in a substance abuse rehabilitation facility.  PCP withdrawal is known to cause fear, agitation, anxiety, irritability, hallucinations and flashbacks.

For more:

Category:

Activism, Psychological Aspects, research, Ticks

Florida Undercounts Lyme Disease & Downplays its Risk

https://www.lymedisease.org/florida-undercounts-lyme-disease/

Florida undercounts Lyme disease and downplays its risk

7/8/24

Melissa Bell, President of the Florida Lyme Disease Association, recently met with Florida Surgeon General Joseph A. Ladapo, MD, PhD, to discuss Lyme disease in their state. Their zoom call also included others from the Department of Health as well as Professor Kerry Clark from the University of North Florida.

Here is a follow-up email Melissa sent to the Dr. Ladapo, summarizing the call. This is a highly informative resource for anyone seeking to contact their local and state health officials. We thank Melissa for making this available to our readers.

The evidence is clear that Lyme disease is undercounted in Florida based on various data sources. The CDC surveillance counts place a heavy emphasis on “high incidence” states—which are primarily confined to the Northeast coast and upper Midwest United States. Doctors and patients are falsely told that there is “no Lyme in Florida” or that it is extremely rare.

Melissa Bell, President of Florida Lyme Disease Association.

As a result of this downplaying of the risk of Lyme and other tick-borne infections, people, especially parents, are less likely to take steps to prevent tick bites. Additionally, those infected are less likely to receive an early diagnosis. According to the CDC, “if left untreated, infection can spread to joints, the heart, and the nervous system.”

Due to poor awareness and training, doctors refuse to timely prescribe antibiotics for known tick bites even with symptoms and refuse to test for Lyme because they have been taught there is no Lyme in Florida. There is even less awareness regarding other tick-borne infections that are prevalent in the state, including Babesia, Ehrlichia, Anaplasma, and Bartonella.

Lyme and Bartonella infection can persist for years, despite antibiotic treatment (see studies linked above) and following:

New genetic group/species of Bartonella may be responsible for a portion of Lyme-like illness in Florida and other southern states. Standard lab tests for Bartonella will not likely identify these strains.

  • The CDC shows a 29.44% increase in reported cases in Florida comparing 2017-2019 data to 2022.
  • A 2021 CDC Study analyzing insurance data, revealed that in states the CDC considers to be “low incidence,” only 1 in 50 cases is counted, while in high incidence states 1 in 7 is counted. See also How much does the CDC undercount Lyme cases? It depends on where you live.
  • Standard lab tests for Lyme disease were developed to detect a single Borrelia strain present in the Northeast. Such lab tests fail to detect approximately half of actual cases pursuant to numerous peer reviewed studies. See Current Guidelines, Common Clinical Pitfalls, and Future Directions for Laboratory Diagnosis of Lyme Disease, United States; see also, Project Lyme. For unknown reasons, it appears as though the Florida Department of Health is not counting most CDC-positive Lyme cases. For example, in a July 2018 report (page 7), Quest Diagnostics showed an increase in Florida Lyme cases from 283 in 2015 to 501 in 2017, representing a 77% increase. In contrast, the CDC only reported 166 Florida Lyme cases in 2015 and 210 in 2017. Why are the CDC’s numbers for Florida so much lower than Quest, a single lab? In recent email correspondence, IGeneX has indicated a 48% positivity rate in Florida for 2023, which they consider high. There were 526 CDC-positive cases through IGeneX in 2023. Note that the IGeneX immunoblot has been validated by New York and other states and is covered by Medicare Part B. We do not have data for labs such as Mayo Clinic, Consolidated, ARUP, Medical Diagnostics Laboratory, Stony Brook University Medical Center, Cleveland Clinic, university and other labs which also test for Lyme disease in Florida, but we trust that the Florida Department of Health has this data available. We would appreciate transparency on these numbers.
  • Canine maps show a significant increase in incidence of Lyme disease, Ehrlichia, and Anaplasma in the state. Notably, dogs are less likely to travel out of state meaning the infections are more often locally acquired. 
    • According to the Companion Animal Parasite Council (CAPC), from 2019 – 2023, canine tick-borne infections have increased by 89.53% for Lyme disease; 100.49% for Ehrlichiosis; and 334.23% for Anaplasmosis in Florida.
    • In 2022, CAPC reported 4,284 canine cases compared to only 233 human cases reported by the CDC.
    • In 2023, CAPC reported 4,888 Lyme disease, 12,601 Ehrlichiosis, and 8,424 Anaplasmosis canine cases.
    • According to 2024 data YTD, Florida is considered moderate risk for Lyme and high risk for both Ehrlichia and Anaplasma. Notably, the Lyme incidence changed from 1/200 in 2023 to 1/100 for 2024 YTD.
    • The CAPC estimates its data represents “less than 30% of the activity in the geographic regions.” Applying this factor to the 4,284 cases in 2022, CAPC would estimate 14,280 canine cases which is >61x the human reported cases for the same year (4,284/.3 = 14,280).
  • MyLymeData statistics for “low incidence” states like Florida likewise show a large disparity between reported and actual cases. See Why Doesn’t the CDC Count Lyme Disease Cases in the South and the West? Everybody Else Does. | LymeDisease.org

The one-size-fits-all IDSA treatment guidelines fail countless patients, particularly those who are not timely diagnosed/treated or present with co-infections such as Babesia, Bartonella, or rickettsial infections.

  • A significant percentage of patients suffer persistent symptoms after antibiotic treatment. The CDC previously estimated 10-20% of patients, but now they claim “following antibiotic treatment, about 5-10% of people with Lyme disease have prolonged symptoms of fatigue, body aches, or difficulty thinking as a result of their infection.” We are unaware of any rationale or scientific basis for this change. To the contrary, research demonstrates a higher percentage. See e.g. Post-treatment Lyme disease syndrome symptomatology and the impact on life functioning: is there something here? (at six months, 36% of patients reported new-onset fatigue, 20% widespread pain, and 45% neurocognitive difficulties). It is widely accepted that patients who are not timely diagnosed and treated are more likely to suffer from persistent symptoms after IDSA-recommended treatment.
  • Lyme persists due to biofilms, round bodies, inability of antibiotics to penetrate tissues/organs. See Lyme Persists
  • Studies at Johns Hopkins showed doxycycline failed to eradicate the Lyme bacteria Borrelia burgdorferi in vitro. However, triple antibiotic combinations were effective in a mouse model. See also Superior efficacy of combination antibiotic therapy versus monotherapy in a mouse model of Lyme disease
  • Studies showing “long term antibiotics are not effective” used a single antibiotic, did not have a true placebo (i.e. giving IV rocephin to the control group), and/or ignored improvement of symptoms such as fatigue. Studies were designed to fail and then were widely reported without mention of study limitations/flaws.

The failure to timely diagnose and adequately treat Lyme disease comes at a tremendous economic burden. Lyme patients had 87% more visits to the doctor and 71% more visits to the emergency room within the year following diagnosis. This does not take into account additional economic costs due to missed work and long term disability. See Johns Hopkins study Lyme Disease Costs Up to $1.3 Billion Per Year to Treat, Study Finds and Health Care Costs, Utilization and Patterns of Care following Lyme Disease | PLOS ONE; see also The Financial Implications of a Well-Hidden and Ignored Chronic Lyme Disease Pandemic – PMC

Requested Action Items:

  1. Transparency on CDC positive cases. What are the reported case counts for each of the labs who test for Lyme disease in Florida and what percent are being reported to the CDC? Why are such a large percentage of cases not being counted? Why are canine cases an estimated 61x higher than human cases?
  2. Mandated education of clinicians in the state and alerts to medical care providers advising of increase in cases of Lyme, Ehrlichia, and Anaplasma in the state. Babesia and Bartonella can also cause overlapping symptoms. There are free CME webinars available on Invisible International.
  3. Educate residents about the risk of tick bites, including education of children in schools. See e.g. A School-Based Intervention to Increase Lyme Disease Preventive Measures Among Elementary School-Aged Children
  4. Since 2017, Babesia has been reportable in Florida. Please share the reports.
  5. Similar to the federal Tick-Borne Disease Working Group, we request that a Florida task force be formed, composed of members who have a diversity of backgrounds and perspectives (i.e. patients, researchers, health practitioners, public health).
  6. Explore potential legislation in the state promoting tick-borne disease awareness, mandating insurance coverage outside of IDSA guidelines when deemed medically necessary, and protecting doctors who prescribe medications in accordance with the ILADS standard of care. See Reviewing Current Lyme Legislation
  7. Fund research within the state, including widespread tick testing and patient-centered studies (i.e. efficacy of emerging combination therapies, screening of at-risk pregnant women, etc.).
  8. Update Florida Department of Health website on Lyme disease. In particular (but not limited to):
    • The FL DOH page discussing Lyme rashes under the symptoms and treatment tab is outdated and inconsistent with the CDC website. It is critical to communicate that there are many forms of erythema migrans rashes, not just the classic bull’s-eye. The current page states “between 60 and 80% of people will develop a red, “bull’s-eye rash” which is not accurate. In this study, researchers discovered most rashes were uniform in color (51%), pink (74%), oval (63%), and with clear borders (92%). Only 6% had the classic bull’s-eye pattern.
    • Under the symptoms and treatment tab, it states “a few patients, especially those diagnosed in the later stages of disease, may have persistent or recurrent symptoms.” (emphasis added). For many years, the  CDC had recognized that 10-20% of patients continue to suffer symptoms after antibiotic treatment. Without explanation, the CDC recently changed this estimate to 5-10% without any clear rationale for the change. Research from Johns Hopkins demonstrates a higher percentage than the CDC. See e.g. Post-treatment Lyme disease syndrome symptomatology and the impact on life functioning: is there something here? (at six months, 36% of patients reported new-onset fatigue, 20% widespread pain, and 45% neurocognitive difficulties); see also Health Care Costs, Utilization and Patterns of Care following Lyme Disease | PLOS ONE (“over 63% of the Lyme disease cases had at least one diagnosis associated with PTLDS, which is 36 percentage points higher a rate than the prevalence of the same symptoms in our control population”). Whatever estimate is used, it is certainly more than “a few.”
    • Under the transmission tab of the FL DOH website, it states “studies have shown that both nymph and adult ticks need to be attached for more than 24 hours to effectively transmit the infection.” However, a literature review has determined that in animal models, transmission can occur in less than 16 hours, and the minimum attachment time for transmission of infection has never been established. See Lyme borreliosis: a review of data on transmission time after tick attachment – PMC. In particular, if a tick is only partially fed and then attaches to a human, spirochetes can be found in the salivary glands increasing the risk of disease transmission after shorter attachment periods. Additionally, if a tick is not removed properly (i.e. if the body is squeezed or if heat or oils are used), then this increases the risk of disease transmission.
    • There is a growing body of research showing that ticks can also spread Bartonella infections to humans. See Can Ticks Transmit Bartonella? – Project Lyme.
    • Include acknowledgement that Lyme can spread from mother to baby during pregnancy. See e.g., CDC “Untreated Lyme disease during pregnancy can lead to infection of the placenta; spread from mother to fetus is possible but extremely rare.” While we disagree with the term “extremely rare” absent scientific studies proving this point, at least the CDC is now publicly acknowledging maternal-fetal transmission. See also Congenital Lyme disease is under-recognized by medical professionals (50% of Lymelight grant recipients were born with Lyme disease); Ongoing study Pregnancy and Early Neurodevelopmental Outcomes Following In Utero Lyme Disease Exposure funded by the Clinical Trials Network for Lyme and other Tick-borne Diseases (CTN); Lyme Disease and Pregnancy – LYMEHOPE
    • Provide an acknowledgement that existing laboratory tests for Lyme disease often result in false negative results such as: “if you are tested for Lyme disease and the results are negative, this does not necessarily mean you do not have Lyme disease. If you continue to experience unexplained symptoms, you should contact your health care provider and inquire about the appropriateness of retesting or initial or additional treatment.” See e.g., Maryland legislation.
    • Provide links to both the ILADS and IDSA standards of care for treating Lyme disease and related infections. See Schools of Thought about Lyme Disease

Melissa Bell, Esq. founded the Florida Lyme Disease Association in 2013, after several members of her family were severely impacted by Lyme disease. She also serves on the Executive Board of Project Lyme.

_______________

Great article!  

For more:

The take home: Clark is finding borrelia (Lyme) strains in the South that the current CDC two-tier testing will never pick up in a thousand years.

https://www.researchgate.net/publication/285584725_Isolation_of_live_Borrelia_burgdorferi_sensu_lato_spirochetes_from_patients_with_undefined_disorders_and_symptoms_not_typical_for_Lyme_diseases

The take home: Clark found live Bbsl (bissettii-like strain) in people from the Southeast who had undefined disorders not typical of LD, and were treated for LD even though they were seronegative, proving that B. bissetti is responsible for worldwide human infection.

He also showed DNA of Bbsl in Lone Star ticks which might be a bridge vector of transmission to humans.

Dr. Clark was the first to report finding LD spirochetes in animals and ticks in South Carolina, as well as in wild lizards in South Carolina and Florida. He has documented the presence of LD Borrelia  species, Babesia microti, Anaplasma phagocytophilum, Rickettsia species, and other tick-borne pathogens in wild animals, ticks, dogs, and humans in Florida and other southern states.

Category:

Activism, Bartonella, Lyme, research, Testing, Ticks, Uncategorized

Plum Island History

http://  Approx. 12 Min

Why New York’s Plum Island is Totally Forbidden

3/24

Plum Island, located off the coast of Long Island, has a rich history spanning centuries. Originally known as “Isle des Plumes” by early French settlers due to its abundant bird population, it later became a haven for pirates and smugglers during the colonial era. In the 19th century, it was used as a quarantine station for diseased livestock, helping prevent the spread of diseases to mainland farms. During World War II, the island was taken over by the U.S. government and used for military purposes. In 1954, the Plum Island Animal Disease Center was established by the U.S. Department of Agriculture, where research on infectious animal diseases, including foot-and-mouth disease, was conducted. Today, the island remains a site of scientific research, though its future is uncertain amidst discussions of potential closure and redevelopment.

The video explains that as of 2023 the island was slated for closure and to be sold at private auction, while the facility itself would move to Kansas City University. As a part of the Consolidated Appropriations Act of 2021, and the response to the most recent ‘pandemic’ outbreak, the island was offered to federal agencies first. As of Feb. 2024, the facility still operates at Plum Island.

While the author of the video emphasizes the safety of the lab, the book Lab 257 paints quite a different picture with virus outbreaks, infected workers, flushing of contaminated raw sewage into area waters and the insidious connections between the island and Lyme disease and West Nile Virus.

For more:

Category:

Activism, Lyme, research, Ticks

Atypical Babesia Symptoms in Elderly Man

https://danielcameronmd.com/babesia-symptoms-elderly-man/

ATYPICAL BABESIA SYMPTOMS IN ELDERLY MAN

babesia-symptoms

Babesiosis is a tick-borne illness that can cause a wide variety of symptoms, making it difficult to diagnose. The number of cases in the U.S. has been rising – particularly concerning given that Babesia can be transmitted immediately following a tick bite or unknowingly through a tainted blood transfusion. Furthermore, this illness can be deadly or cause serious complications in immunocomprised patients.

By 

In the article “An Atypical Case Presentation of Babesiosis,” Allen and colleagues describe a unique patient who contracted Babesiosis but did not exhibit many of the typical Babesia symptoms, such as night sweats, chills, shortness of breath and weight loss.¹ Instead, his symptoms were limited to weakness, fever, tachycardia and leg pain.

CASE REPORT

A 75-year-old man was admitted to the emergency department with generalized weakness that had been ongoing for one week, a fever and tachycardia. He also had mild swelling of his left leg and leg pain, which he described as intermittent stabbing pain in his left thigh.

The man had a past medical history of hypertension and hyperlipidemia. His initial laboratory test results revealed mild anemia, thrombocytopenia, and renal dysfunction. All other testing was normal.

The patient was treated empirically with acetaminophen and intravenous ceftriaxone and vancomycin.

“On the first day of hospitalization, blood parasites were noted to be present on the patient’s complete blood count (CBC),” the authors’ state.

His treatment was switched and he was prescribed a 10-day course of azithromycin and atovaquone for a possible diagnosis of Babesiosis. However, the patient’s condition deteriorated rapidly.

“The patient’s renal function, anemia, thrombocytopenia and mental status progressively worsened and by hospital day 3 the patient was transferred to the Intensive Care Unit.”

He was then treated successfully with a red blood cell exchange and plasma exchange therapy.

“The patient’s kidney function improved, along with his anemia and thrombocytopenia,” the authors’ state. “The percentage of parasitemia had decreased to 1% from a maximum of 22% on Day 1 of admission.”

Subsequently, PCR testing for Babesiosis was positive for Babesia microti.

Authors’ conclude:

  • “Tick-borne illnesses should be included in the differential even in low-risk populations and non-endemic regions due to the severity of disease complications.”
  • “When patients present with vague symptoms, it is important to keep a broad differential.”
  • “In this case, it could have been beneficial to inquire if the patient spent time outdoors or had any pets or other means by which he may have been exposed to a tick.”
Related Articles:

How long does it take for a tick to transmit Babesia?
Neurologic complications of Babesia
Patient contracts Babesia from a blood donor

References:
  1. Allen D, Getto L (May 10, 2024) An Atypical Case Presentation of Babesiosis. Cureus 16(5): e60036. doi:10.7759/cureus.60036

_______________

**Comment**

Babesia parasitemia load can vary from 1%-80%, but >10% is considered high, and those who have one of the following: severe hemolytic anemia and/or severe pulmonary, renal or hepatic compromise should be considered for exchange transfusion.

Since this poor man had a high level of parasites and was going downhill in a hurry, lowering the parasite load was crucial to his turnaround.  Just shows you how quickly these cases can escalate.  I’m thankful the authors remind doctors to consider TBIs even in non-endemic regions, although, these are becoming less and less by the day.

For more:

Category:

Babesia, research, Testing, Ticks, Treatment

County-Level Tick-Borne Disease Data in the U.S.: A Comprehensive Guidebook

https://lymediseaseassociation.org/blogs/lda-guest-blogs/sarah-maxwell-county-level-tick-borne-disease-data-in-the-usa/

May Awareness LDA Guest Blogger

Dr. Sarah Maxwell, Ph.D.

Dr. Sarah Maxwell, Ph.D., Associate Professor, Public Health and Public Policy, University of Texas at Dallas.  Dr. Maxwell is an expert on tick-borne disease surveillance and the use of triangulation and thematic mapping to assess tick-borne disease risk, particularly in perceived non-endemic areas and among vulnerable populations. Her recent work includes a grant from the Rita & Alex Hillman Foundation, titled Nursing in the Fields: Vector-borne Illness Prevention and Detection among Migrant and Seasonal Farmworkers. She has numerous publications on tick-borne diseases in high-impact journals. Dr. Maxwell served as a Fellow and continues her role as Faculty Affiliate at Boston University School of Medicine, Laboratory for Human Neurobiology. She is also a Research Affiliate, Center for Science, Technology, and Innovation Policy, George Mason University and founding member of Integrate, Communicate, Inform (ICI)-Vector-borne Disease Working Group.

County-Level Tick-Borne Disease Data in the U.S.: A Comprehensive Guidebook for Researchers

by Dr. Sarah Maxwell, Ph.D.*

Challenges Associated with Tick-Borne Disease Data

Navigating tick-borne diseases (TBDs) in the United States is analogous to traversing a labyrinth, filled with obscure pathways and blind alleys. These complex passageways found throughout state public health websites fail to provide researchers, public health officials, and medical practitioners with a quick reference to assess locally-acquired disease risk. Additionally, the Centers for Disease Control and Prevention generally do not provide county-level data on tick-borne diseases in the U.S., other than Lyme disease.[1] State public health departments offer limited TBD data, while the presentation of data is typically unhelpful at best. State reporting skips years; is inconsistently presented; or is presented in formats that make it very difficult to build a dataset, even for just one state.

For states with emerging tick-borne diseases, large states with varying eco-systems, and counties outside of the Northeastern U.S., TBDs other than Lyme disease are largely ignored. At the state level, data are often located in various formats (e.g., PDF or maps) and are inconsistently presented, particularly across years and among groups (e.g., age, gender). Knowledge of county-level disease presence is key to improved testing and diagnosis. A national data guidebook that documents all county-level TBD data is needed to assist medical practitioners in determining disease risk and travel-acquired TBDs, and to provide data access to TBD researchers so desperately need.

I therefore, reached out to the Lyme Disease Association, Inc. (LDA) with the goal to create a one-stop, quick-reference online, easy-access data guidebook. The overarching goal of this grant-funded initiative is to create a national, county-level guidebook on all tickborne diseases. The Data Guidebook will contain links to all state public health department pages related to TBDs, with a comprehensive summary of all available data. As I have begun this daunting task, however, I have also been downloading all PDFs, maps, written reports, and anything I can locate that will assist researchers to improve tick-borne disease surveillance and public health communication. These reports provide historical and fixed information so that links and changes to state public health department websites do not negatively affect the main goal, i.e., to secure TBD, county-level data in the United States over as many years as possible.

The products of this LDA-funded grant will allow researchers, epidemiologists, summer camps, schools, medical practitioners, and anyone requiring local information to obtain official data via a quick-reference manual. Researchers can quickly assess, for example, if a state offers downloadable data; if county-level data are available, and in what format; and what those data offer (see detailed description below). 

Measurable Objectives Contained within the Data Guidebook Grant Proposal:

a) By March, 2024: A complete directory of state TBD state public health links and information will be entered into an excel file. Note: many states have data that are only publicly available through very detailed search criteria and may not appear on the main public health websites, underscoring the importance of a one-stop source for TBD data.

  • Texas is an example, depending on year: Texas has changed its TBD reporting multiple times, resulting in data that are completely disconnected and not available to researchers in any single database. In 2017, Texas reported TBDs via PDF by region. In 2023, the website was updated to direct visitors in search of TBD data to the CDC. County-level data are no longer available. https://healthdata.dshs.texas.gov/# However, a search for specific diseases produces a dataset from 2000-2019, but does not provide county-level data. This muddled reporting structure requires a researcher to become a detective, and limits data availability to all TBDs.

b) By December, 2024: complete an analysis by state that is ready for preparation into a professional report. Examples of full report information include the following descriptive information for each state, allowing researchers and others to effectively locate and analyze TBD data:

  • Executive summary of each state’s data and data availability
  • County vs only state level data availability
  • List of reportable tick-borne diseases (with county data)
  • List of reportable emerging TBDs, if any
  • Usability and presentation of data – e.g., maps, excel, Word, PDF (links provided)
  • Available dates for each disease
  • Does public health identify imported/non-locally acquired identified in maps or data? Y/N
  • Data by age, gender, seasons Y/N and at the county or state level Y/N

c) By March 15th, 2025: a professional, 50-page report is prepared with one page per state. Information will be presented for quick reference by any researcher or end user, allowing open access, once and for all, to TBD county-level data in the U.S.

d) By December, 2025: publish a research note in a peer-reviewed journal outlining the report and presenting an overview and analysis of TBD public health data in the United States. This peer-reviewed research note will describe the state-of-the-states’ TBD data availability, presented in both written and summary form, similar to a health dashboard.

Preliminary Findings:

To fully comprehend the daunting task of mismatched data facing tick-borne disease researchers, visual illustrations are necessary. The grant launched in January, 2024, and as I now assemble the County-Level Tick-Borne Disease Data Guidebook, I can attest that it is worse than I first anticipated. States may or may not provide county-level data. If they do, it is often located in a PDF and, within that PDF, data may or may not be organized. In fact, many states present data in written paragraph form, rather than data that can be cut and pasted, and data across the board cannot be easily downloaded or converted to Excel. Additionally, within these PDFs are multiple other reportable/communicable diseases. A researcher might spend a full day pulling data from multiple links, PDFs, past reports, or even in Word documents, and most of these data are not necessarily located on one easy-to-locate website. Tick-borne diseases must be sorted out from other reportable diseases in the process. Historical data reports, if ever collected in the first place, often require significant sleuthing, digging, and searching.

Let’s face it, the United States tick-borne disease data situation is so inconsistent and complex, ChatGTP cannot even fix the problem. The complexities are shown below with examples of reports from selected states.

Sample State Tick-Borne Disease Data Reports

Sample Draft Data Guidebook: Arkansas

The Tick-Borne Disease Data Guidebook provides a summary for each state. The Excel file screenshot below highlights available data in Arkansas, one of the few states I have reviewed thus far that offers downloadable or cut-and-paste raw data that includes emerging TBDs. Good job, Arkansas!  But, my request to you, Arkansas Department of Public Health, can you please start posting county-level data? With so many summer camps in Arkansas, along with countless state and national parks, historical sites, campers, backpackers, and hikers…along with notably high (and increasing) cases of diseases such as Tularemia and Rickettsiosis, Spotted Fever (RMSF), those who are unaware or are visitors to the state, may find themselves with flu-like symptoms and no explanation from their medical provider.

(Low resolution sample)

County Level Tick Borne Disease in Arkansas

What Comes Next:

Will this grant fully solve the data problem? Sadly, no, but the Lyme Disease Association, Inc. has just funded the platform on which our collective work can now change the entire field of tick-borne disease research. We must continue to address the lack of public health information, and particularly, communication. What comes next is simple: The data will be held in separate files for each state, along with the Data Guidebook. The LDA will offer all collected information, along with the Data Guidebook entries online for anyone to access. From there, we, collectively, must develop a dashboard of all known TBDs at the county and state-levels across the United States. I am committed to this project, and the next step will be accomplished. Do you have ideas? Are you an institutional prospective partner? Feel free to reach out: sarah.maxwell@utdallas.edu Let’s support the LDA and the University of Texas at Dallas in taking that next step so that disease surveillance becomes easy and accessible, and let’s work together so that patients can be diagnosed quickly and properly with local data.

[1] The CDC offers one county-level data set for selected tick-borne diseases from 2016-2019 https://www.cdc.gov/ticks/resources/Reported-Tickborne-Disease-Cases-by-County-of-Residence_2016-2019.xlsx

*Author Note: The opinions expressed in this Blog are personal opinions of author Dr. Sarah Maxwell only and do not necessarily reflect those of any other entity.

Category:

Activism, Ticks