Study Shows Increase of Non-Lyme Tick-Borne Diseases

A study published in The American Journal of Clinical Pathology from the Department of Pathology, Division of Clinical Laboratories & Molecular Medicine at Massachusetts General Hospital and Harvard Medical School evaluated trends in non-Lyme disease tick-borne disease (NLTBI) blood testing at Quest Diagnostics laboratory located in Secaucus, NJ. The study took place over the course of seven years and included polymerase chain reaction (PCR) and serological tests. Testing data from Quest Diagnostics were analyzed both nationally and at the state level from a large reference laboratory beginning in 2010 through 2016.

The study showed that:

  • testing and positivity for most NLTBIs increased dramatically over the course of the study,
  • testing criteria was not as stringent as required for public health reporting, but the study showed that the number of positive cases generally exceeds those reported by the Centers for Disease Control and Prevention (CDC),
  • frequency of NLTBI in US is seasonal but testing activity and positive test results are present throughout all months of the year, and
  • positive results for NLTBI testing originated primarily from a limited number of states, signifying a geographic concentration and distribution.

The study shows a significant increase in the number of reported cases of many NLTBI from 2004 to 2016, including a 6.6-fold (875 to 5,750) increase in anaplasmosis and ehrlichiosis combined. It also uncovered a significant underreporting of Lyme disease and Q fever to the CDC. Since reporting for tick-borne illnesses (TBI) generally use the same reporting system as Lyme disease,  the researchers indicate the possibility that underreporting also occurs for other TBI.

The study outlines laboratory-developed tests (LDTs) that have not been cleared by the US Food and Drug Administration (FDA) but have been approved by Clinical Laboratory Improvement Amendments (CLIA) regulations.

Said LDA President Pat Smith, “Although the findings are not surprising to many in the Lyme community, it is imperative that we have this data to support the increases in many of these non-Lyme tick-borne diseases. Increased awareness will result in medical professionals being more likely to consider other tick-borne diseases in people who have been bitten by ticks.” 

See entire AJCP article here.




2018 Reported Lyme Cases – Top 15 States

The LDA has used CDC total reported Lyme case numbers (includes “confirmed” and “probable”) to create a pie graph of the 15 states in the US with the highest case numbers for 2018. 

Click here for pdf version of pie graph




2018 US Reported Lyme Disease Cases Featuring Top 15 States

Lyme Disease Association Announces 2018 Final Lyme Cases Reported by CDC.

The Centers for Disease Control & Prevention (CDC) has just released the 2018 final Lyme disease reported cases numbers. Total US reported cases was 33,666 ─ CDC has reported that only 10% of cases are actually reported─ that translates into 336,660 actual new Lyme cases in the US in 2018.

Lyme Disease Association, Inc. (LDA) has ranked the top 15 states based on those CDC reported Lyme case numbers below.

 

 

 

 

*

 

 

 

 

 

 

 

 

 

 

 

*In recent years, an increasing number of NY Counties have used estimating to determine Lyme case numbers. The Council of State & Territorial Epidemiologists, in charge of surveillance, doesn’t permit estimation to be reported by CDC in the national counts. In 2018, NY State reported it had 7,320 Lyme cases including those 30 estimated county numbers. CDC reported 3,638 Lyme cases for NY State, which excluded the 30 counties’ estimated numbers.
https://www.health.ny.gov/statistics/diseases/communicable/2018/docs/cases.pdf

Note: In 2016, MA changed reporting requirements and very few MA cases are now able to be included in the CDC reported Lyme cases (in 2018 CDC reported 16 cases in Massachusetts)

Click here for Ranking of all US states/DC

Click here for pie chart of 2018 Reported Lyme Cases – Top 15 States

Click here to go to LDA’s Interactive Lyme Disease Case Maps




Rockefeller University Hospital Seeks Participants for Powassan Study

Researchers at The Rockefeller University Center for Clinical and Translational Science are conducting a paid study to learn more about the immune systems of people who have been previously infected with Powassan virus. The research team seeks participants who are at least 18 years of age with documented proof of a prior Powassan virus infection. Participation in the study includes up to two outpatient visits to The Rockefeller University Hospital and blood work. Compensation is provided.

If you are interested in participating in this study and would like to learn more, please contact The Rockefeller University Hospital Recruitment Office at 212-327-7722 or send an email to RUCARES@Rockefeller.edu

This study article is provided for informational purposes only. Please do not contact the LDA about the study. Thank you. 

 




LDA Analysis of Lyme Disease Data by Age from 2001-2017

Click here for pdf of pie graph




LDA Materials

The Lyme Disease Association has published many brochures, which can be ordered for free, that contain information about tick-borne diseases including symptoms, testing and tick removal.  LDA has also published several books, one especially for children with chronic Lyme disease.

In addition, LDA has created many charts, graphs, reports and hand-outs about tick-borne diseases, some specific to individual states, and you can download all of them for presentations or handouts.

DVDs/videos have been produced by the LDA over time, featuring prominent scientists in the field of tick-borne diseases talking about research break-throughs.

A number of publishers have donated books from authors who have Lyme disease, aka, Literati with Lyme, for the LDA to sell to provide program funding.

 




LymeAid 4 Kids Provided $381,000 in Grants Since 2004

About LymeAid 4 Kids (LA4K) – The Lyme Disease Association started LA4K fund in 2003 and has helped children all over the U.S. and in Canada. Developed with the help of author Amy Tan, the fund is for children who do not have/receive insurance coverage for Lyme disease treatment for children and have economic difficulties. Donations can be made on-line to LDA help this LA4K fund as there are so many applicants, the fund does run out of money frequently.

LymeAid4Kids Logo2014Small

 

 

Total Funds distributed since 2004 totals $381,000

 

 

 

In 2019, 36 applicants were awarded grants for a total of $36,000:
States TBA

In 2018, 7 applicants were awarded grants for a total of $7000:
1 Pennsylvania
2 Maryland
1 North Carolina
1 Tennessee
2 Mississippi

In 2017, 18 applicants were awarded grants for a total of $17,400:
4 Oregon
5 Connecticut
1 New York
1 Pennsylvania
4 Maryland
1 Indiana
1 Kansas
1 Idaho

In 2016, 45 applicants were awarded grants for a total of $45,000:
6 New York
2 Ohio
2 Oregon
1 Texas
5 California
1 Illinois
2 North Carolina
1 Michigan
1 Mississippi
2 Tennessee
5 New Jersey
7 Virginia
4 Pennsylvania
3 Massachusetts
1 Maine
1 Connecticut
1 Florida

In 2015, 26 applicants were awarded grants for a total of $26,000:
6 Maine
4 Ohio
1 Connecticut
1 Michigan
2 Washington
2 New York
1 Illinois
1 North Carolina
3 Indiana
1 California
1 Oklahoma
3 Oregon

 

In 2014, 9 applicants were awarded grants for a total of $9000:
1 Texas
1 Washington
1 Wisconson
1 Maryland
1 Illinois
2 Connecticut
1 New York
1 California

 

In 2013, 11 applicants were awarded grants for a total of $9,000:
5 California
1 New Jersey
2 New York
1 Wisconsin

In 2012, 11 applicants were awarded grants for a total of $11,000:
3 Idaho
1 Illinois
1 Iowa
2 New York
1 Massachusetts
1 Tennessee
1 Wisconsin
1 Florida

In 2011, 35 applicants were awarded grants for a total of $35,000:
1 British Columbia
3 California
2 Connecticut
2 Georgia
5 Iowa
4 Illinois
2 Massachusetts
2 Missouri
1 New Hampshire
4 New Jersey
1 New York
3 Ohio
2 Pennsylvania
1 Rhode Island
1 Texas
1 Washington

In 2010, 29 applicants were awarded grants for a total of $29,000:
3 California for a total of $3,000
5 Connecticut for a total of $5,000
1 Georgia for a total of $1,000
3 Illinois for a total of $3,000
1 Maine for a total of $1,000
1 Missouri for a total of $1,000
2 New Hampshire for a total of $2,000
3 New Jersey for a total of $3,000
4 New York for a total of $4,000
1 Pennsylvania for a total of $1,000
1 Rhode Island for a total of $1,000
1 South Carolina for a total of $1,000
3 Virginia for a total of $3,000

In 2009, 20 applicants were awarded grants for a total of $20,000:
4 Connecticut for a total of $4,000
3 Massachusetts for a total of $3,000
1 Rhode Island for a total of $1,000
2 New Jersey for a total of $2,000
2 California for a total of $2,000
2 New York for a total of $2,000
3 Pennsylvania for a total of $3,000
2 Nevada for a total of $2,000
1 British Columbia for a total of $1,000 

In 2008, 36 applicants were awarded grants for a total of $36,000:
1 Ohio for a total of $1,000
1 Rhode Island for a total of $1,000
1 Maine for a total of $1,000
3 Massachusetts for a total of $3,000
6 New York for a total of $6,000
1 Tennessee for a total of $1,000
2 California for a total of $2,000
2 Pennsylvania for a total of $2,000
4 Connecticut for a total of $4,000
1 Florida for a total of $1,000
4 Kansas for a total of $4,000
1 New Hampshire for a total of $1,000
4 Texas for a total of $4,000
3 Georgia for a total of $3,000
2 New Jersey for a total of $2,000

In 2007, 45 applicants were awarded grants for a total of $45,000:
1 California for a total of $1,000
6 Connecticut for a total of $6,000 
1 Florida for a total of $1,000
2 Georgia for a total of $2,000
4 Illinois for a total of $4,000
3 Indiana for a total of $3,000
1 Iowa for a total of $1,000
2 Massachusetts for a total of $2,000* 
3 New Hampshire for a total of $3,000 
1 New Mexico for a total of $1,000 
5 New York for a total of $5,000
2 Ohio for a total of $2,000
8 Pennsylvania for a total of $8,000
1 Rhode Island for a total of $1,000
1 Texas for a total of $1,000 
1 West Virginia for a total of $1,000 
1 Wisconsin for a total of $1,000
2 Canada, (have US doctors) for a total of $2,000

*$780 of this total was not used and returned to the fund

In 2006,19 applicants were awarded grants for a total of $19,000:
1 Connecticut for a total of $1,000 
3 Pennsylvania for a total of $3,000 
8 Massachusetts for a total of $8,000 
3 New York for a total of $3,000
1 California for a total of $1,000
1 Arizona for a total of $1,000
1 Maryland for a total of $1,000
1 Illinois for a total of $1,000 

In 2005, 28 applicants were awarded grants for a total of $28,000: 
2 Rhode Island for a total of $2,000
1 Texas for a total of $1,000
2 New Jersey for a total of $2,000
1 Maine for a total of $1,000
6 California for a total of $6,000
3 Massachusetts for a total of $3,000
5 Connecticut for a total of $5,000
2 New York for a total of $2,000
4 Pennsylvania for a total of $4,000
2 Canada (have US doctors) for a total of $2,000

In 2004, 9 applicants were awarded grants for a total of $9,000: 
1 West Virginia for a total of $1,000
3 Texas for a total of $3,000
2 Connecticut for a total of $2,000
1 Massachusetts for a total of $1,000
1 Illinois for a total of $1,000
1 North Carolina for a total of $1,000

For more information on LymeAid 4 Kids click here




Nov. 14: HHS Tick-Borne Disease Working Group Announces Release of Report to Congress; Centers for Disease Control & Prevention Announces Higher than Ever Lyme Disease Cases

2017 HHSworkingGroup closerTwo major releases from the US Government today confirm what advocates and patients have long known — there is a growing Lyme & tick-borne diseases problem sweeping the land and Congress needs to take action to curb the spread.

In a release long awaited by the Lyme community, the US Department of Health & Human Services announced today that the federal Tick-Borne Disease Working Group (WG) issued its first report to Congress, the Secretary of the Department of Health & Human Services, and the public—with 2 more reports to follow over the next four years.

Recommendations to Congress include improvement in diagnosis & treatment including new rapid & accurate tests; development of antibiotic combinations and/or therapeutic options for acute and persistent illness; strengthening national surveillance; pathogen-host interaction; federal strategic plan development; funding for TBD; and effects of TBD on national security/service members/veterans/families.

According to Lyme Disease Association, Inc. (LDA) President Pat Smith–one of the 14 members of the Working Group–speaking on behalf of the LDA, “Patients and advocates have waited decades for a government report that contains insights from Lyme patients/family members and advocates as this report does, both from WG members and from the public at large. The report is a first step to unlocking the political gridlock surrounding tick-borne diseases, particularly Lyme.”

She added, “Many of us are horrified that after 45 years of Lyme disease, new generations of babies continue to become infected and not receive the proper diagnosis and treatment needed to prevent lifelong suffering. Now this document, prepared using expert and “real world” input, will be used to inform Congress so they can act to provide the necessary funds to stop this tick-borne disease epidemic sweeping our country.”

Click here for Working Group Press Release

Click here for Working Group Report to Congress  (Click on “2018 TBDWG Report to HHS Secretary and Congress – PDF”)

Click here for story on report & new CDC numbers

Click here for Congressman Chris Smith’s Press Release

Click here for Asbury Park Press – Lyme Disease: Federal panel recommends testing overhaul, more changes to Congress

CDC Report on Case Numbers
In a separate release by the Centers for Disease Control & Prevention (CDC) on the state of tick-borne diseases in the US, CDC introduced its new platform for reporting Lyme disease statistics. The release indicates that there has been an increase in all tick-borne diseases, not just Lyme disease, and that it is the highest total annual number of Lyme cases ever reported at 42,743 cases, and a total of all reported tick-borne diseases of 59,349, which includes Lyme, anaplasmosis/ehrlichiosis, spotted fever rickettsiosis, babesiosis, tularemia, and Powassan virus.

The Lyme Disease Association, Inc. reminds the public that Lyme is underreported by a factor of 10, therefore, 427,430 cases of Lyme disease probably occurred in 2017 in the U.S. alone.

Click here for CDC Report

 

 




Order LDA Brochures

The Lyme Disease Association provides the following brochures: LymeR PrimerTM, TickmarksTM, The ABC’s of Lyme DiseaseTM. Any combination of free brochures can be ordered in quantities from one (1) to 200 maximum order. Sorry we cannot honor larger orders and no out of country orders. ($10 Shipping & Handling)


The Lyme Disease Association provides the following brochures:

CombinedFronts 2013 BorderSm

LymeR PrimerTM (pdf) Awareness Brochure: symptoms, tests, tick identification, diseases ticks carry, prevention, tick removal, tick testing, general facts and symptoms about Lyme and many tick-borne diseases.

TickmarksTM – Bookmarks (pdf) Awareness Bookmark: pictures of ticks, diseases they carry, proper tick removal.

ABC’s of Lyme DiseaseTM (pdf) Brochure For Parents & Educators: specialized information on children in areas of ophthalmology, psychotherapy, neuropsychiatry, gastroenterology, pediatrics, rheumatology, co-infections, education.

TickCardTM (pdf) Business Sized Awareness Card pictures of ticks, diseases they carry, symptoms and tick removal

 

Order Limit –

Any combination of free brochures can be ordered in quantities from one (1) to 200 maximum order. Sorry we cannot honor larger orders and no out of country orders.

(TickmarksTM are no longer available for order. PDF can still be downloaded & printed)

For Example:

  • 100 LymeR PrimerTM & 100 The ABC’s of Lyme DiseaseTM = 200 brochures OR
  • 75 LymeR PrimerTM, 75 The ABC’s of Lyme DiseaseTM, 50 TickCardsTM = 200 brochures

Please email brochures@LymeDiseaseAssociation.org with any questions or problems regarding your order.


Order Online –

ORDER FORM

  • No out of country orders
  • Brochures only available via online order form (mail-in and phone requests not accepted)
  • Allow 4 weeks for delivery
  • Unfortunately due to recent postal changes, our shipping rates have increased & we now have to charge $10 per order.
  • Sorry, we do not invoice.

Sponsorship Opportunities for Brochures

IGeneX, Inc. IGeneX, Inc

Reference Labs
Palo Alto, CA

Clongen 2013 Clonogen Laboratories, LLC

Gaithersburg, MD

Rynoskin-logo Rynoskin

Protection Clothing
Midwest City, OK

galaxy diagnostics lyme bartonella testing Galaxy Diagnostics

Morrisville, NC

CTtickControl Connecticut Tick Control

Norwalk, CT

Tick Box Technology Corporation tick control Tick Box Technology Corporation

Norwalk,CT

sawyer outdoor protection from ticks Sawyer Products, Inc.

Safety Harbor, FL

NJLab 2013 New Jersey Laboratories

New Brunswick, NJ

Note: LDA does not endorse products or services.




Lyme Cases – Top 15 States

Click here for high quality pdf printable

The LDA has used CDC total reported Lyme case numbers (includes “confirmed” and “probable”) to create a pie graph of the 15 states in the US with the highest case numbers for 2015.

LDA Top 15 States for Reported Lyme Cases