Hydroxychloroquine for Early COVID Studies: Participants Needed

The following is a list of studies using Hydroxychloroquine for early COVID disease compiled from ClinicalTrials.gov on April 24, 2020.

Studies using Hydroxy + Azithromycin:

  • Rutgers, The State University of New Jersey
    Hydroxy + Zith vs Hydroxy alone vs. no treatment
    PCR + with T 100.6 or more
    Inpatient or outpatient
    Recruiting
  • LCMC Health (New Orleans)
    Hydroxy + azith vs. hydroxy alone vs supportive
    Early disease (<7 days of symptoms, PCR +) in 2 groups-
    Early moderate (O2 sat 94+) to severe disease (O2 sat<94)
    Viral load and clinical
    Recruiting

Hydroxy only studies (without azithro):

  • ProgenaBiome (CA-based PCR lab)
    Pre-exposure in health care workers
    Hydroxy + vite C + vite D = Zinc vs. no treatment- no doses listed
  • Baylor
    Hydroxy only
    Pre-exposure professional healthcare workers
    PCR q wk X 7; weeks, enroll by invitation
  • Elizabeth Oelsner, Columbia University
    Hydroxy only; placebo-controlled
    Post-exposure professional to housemates
    Not yet recruiting
  • Hackensack Meridian Health
    Hydroxy only, open-label, no placebo
    Pre-exposure professional health care workers
  • Washington University School of Medicine
    Hydroxy only- testing 3 different doses
    Pre-exposure; healthcare workers
    Not yet recruiting
  • University of Minnesota
    McGill University Health Centre/Research Institute of the McGill University Health Centre
    University of Manitoba
    University of Alberta
    Exposure or early disease <4 days of symptoms
    Hydroxy only vs. Placebo
    Recruiting
  • Montefiore Medical Center
    Early disease, confirmed + or suspect
    Hydroxy only
    Not yet recruiting
  • Providence Health & Services
    Hydroxy vs. Vitamin C
    Early disease- outpatients, PCR + By invitation
  • GeoSentinel Foundation
    Pre-exposure professional health care workers
    Hydroxy vs. placebo
    Not yet recruiting

Thank You Joseph Burrascano, MD for compiling this reference list.

Disclaimer: The Lyme Disease Association Inc. (LDA) provides this information as a public service. LDA does not necessarily endorse any of the studies or recommend participation in any studies. Participants need to review the information on the studies and make their own decisions regarding participation.




Lyme Campaign Seeks Participants ‘Resilient’ to Lyme & TBD

Lab Technician working with petri dishesMount Sinai researchers have launched a new app in conjunction with the Lyme and Tick-borne Disease Campaign, a project to identify people who seem to be resistant or resilient to ticks and tick-borne diseases including Lyme disease. The Lyme Campaign is seeking thousands of participants, in an effort to find new prevention or treatment strategies for Lyme and tick-borne diseases.

Below are examples of people the Lyme Campaign is interested in:

    • Individuals with laboratory test results that indicate an exposure to the bacteria that cause Lyme disease (positive Lyme disease blood test), but who have never been treated with antibiotics and lack typical signs and symptoms of the disease.
    • Individuals with high exposure to ticks—such as forestry workers, gardeners, or landscapers—who either experience bite reactions including pain, swelling, and itching, or those who become immune to ticks and are no longer bitten by bugs.

The campaign will be collaborating with Ben Luft, MD, at the Stony Brook University School of Medicine; Uri Laserson, PhD, Assistant Professor of Genetics and Genomics Sciences at the Icahn School of Medicine at Mount Sinai; and George Church, PhD, and Ting Wu, PhD, Professors of Genetics at Harvard Medical School.

The Lyme Campaign is the first effort of The Resilience Project, which studies individuals who believe they are resilient to a specific disease or health condition. These are people who seem protected against illness or more able than most to recover. These individuals may have been exposed to a germ or have genetic predisposition for a disease—but lack typical signs or symptoms.

Read the Mount Sinai Press Release

Disclaimer: The Lyme Disease Association Inc. (LDA) provides this information as a public service. LDA does not necessarily endorse any of the studies or recommend participation in any studies. Participants need to review the information on the studies and make their own decisions regarding participation. 

 




One Health Lyme: ILADS Launches New Research Database

Medical staff discussing over medical reports. Healthcare professionals having discussion in hospital corridor.

The International Lyme and Associated Diseases Society (ILADS) announced they are launching One Health Lyme, a new registry and crowd-solving platform for medical care providers treating Lyme and other Tick-borne diseases (TBD). This repository is exciting news for the Lyme community! 

One Health Lyme is designed to provide valuable resources to clinicians who are treating this patient population. Due to the COVID-19 pandemic, this effort is being pushed forward quickly to provide clinicians the best available resources at this critical time. Clinicians will have a unique opportunity to both track and communicate the impact of COVID-19 on patients with Lyme, allowing important insight from unique immunological legions of these patients to be gathered in the fight against COVID-19. 

Through this platform, data regarding patient experience and treatments will be collected from medical care providers to create a vast repository of information about Lyme that physicians and researchers can use to study and treat it and related diseases.

The platform will also be used to provide educational material and act as a support for crowd-sourcing solutions that face physicians treating this patient population.

ILADS plans to seek a partnership with other organizations such as Lymedisease.org, who have been collecting patient data for years, allowing medical professionals to benefit from both initiatives.

Collaboration with Groopit.co, a crowd solving organization, has provided software that allows for the collection of data in realtime from a vast team which allows for more efficiency.   

The hope is that One Health Lyme will be able to both inform clinicians on how Lyme disease patients are cared for as well as provide potential insight into COVID-19 itself and the public at large.  

*ILADS is a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme through research and education and strongly supports physicians and other healthcare professionals dedicated to advancing the standard of care for Lyme and its associated diseases.

For more information, visit: www.ilads.org




ClinicalTrials.gov

ClinicalTrials.gov is maintained by the National Library of Medicine (NLM) at the National Institutes of Health (NIH). Clinical trials are scientific studies conducted to find new treatments and drugs for diseases, as well as ways to prevent, detect, or diagnose diseases. They can show which approaches are most effective and safe for certain illnesses or groups of people. The research in these clinical trials need human participants, as the information cannot be learned from the laboratory or in animals.

When searching ClinicalTrials.gov website for “Lyme” in the “Condition or disease” search box,
you can find currently recruiting and completed clinical trials, and can narrow the results to your geographical area.

You will see clinical trials such as those conducted by The Lyme and Tick-Borne Diseases Research Center at the Columbia University Irving Medical Center listed, as well as others.

There are eligibility requirements for clinical trials.

ClinicalTrials.gov does not contain information about all the clinical studies conducted in the United States because not all studies are required by law to be registered (for example, observational studies and trials that do not study a drug, biologic, or device).

Disclaimer: The Lyme Disease Association Inc. (LDA) provides this information as a public service. LDA does not necessarily endorse any of the studies or recommend participation in any studies. Participants need to review the information on the studies and make their own decisions regarding participation. 

Click here to find clinical trials on ClinicTrials.gov

 

 

 

 




Two Columbia Studies Need Participants!

Researchers at Columbia University Lyme and Tick-Borne Diseases Research Center are seeking research study participants for two studies. Women to serve as healthy controls are critical to conducting this first study on metabolomics, and patients with confirmed Lyme disease are needed for the second study on Lyme disease and Disulfiram. Please support these clinical studies. 


Dr. Brian Fallon
Dr. Brian Fallon, Investigator

Metabolomics study of Lyme disease: Columbia (Brian Fallon, MD) in collaboration with UCSD:

  • Women in Manhattan NY area over next four weeks
  • 6-10 healthy women ages 40-60 for controls come to Columbia lab for blood & urine testing, questionnaire, clinical evaluation, sensory testing
  • Participants receive $75 & free copies of their bloodwork
  • Email Lily Murray for details  lm3448@cumc.columbia.edu

 

 

Lyme patient Disulfiram study:

  • 14 week disulfiram study (Brian Fallon, MD)
  • Ages 18-65 with confirmed Lyme disease, persistent fatigue, don’t have other major medical comorbid problems, acquired Lyme within prior 16 years
  • All research treatment is provided free of charge
  • Inquiries on disulfiram study can be sent to: lymecenter@cumc.columbia.edu      or can be made by phone 646-774-7503
  • Weblink for this study https://recruit.cumc.columbia.edu/clinical_trial/1661#

For details on these studies and other clinical research opportunities please visit Columbia University, Lyme and Tick-Borne Disease Research Center here.

 

 




LymeAid 4 Kids Provided $383,000 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. Click here for application

LymeAid4Kids Logo2014Small

 

 

Total Funds distributed since 2004 totals $383,000

 

 

 

In 2019, 38 applicants were awarded grants for a total of $38,000:
1 California
2 Connecticut
1 Florida
1 Idaho
8 MD
1 NY
23 PA
1 VA

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




Study Shows Increase of Non-Lyme Tick-Borne Diseases

A study by Elizabeth Lee-Lewandrowski, PhD, MPH, et al, published in The American Journal of Clinical Pathology from the Department of Pathology, 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 New Jersey.

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 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 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




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




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.