A Board of Education Member on Lyme in Schools

Lyme Disease in the Schools: From a Board Perspective

By: Pat Smith, President, Lyme Disease Association

January 20, 2006 – Twelve years on the Board of Education in my community in New Jersey taught me one thing:  board members do not know, cannot know and should not know everything that happens in a school district.  Their job, by and large, at least in New Jersey, is to ensure that the superintendent runs the district well and administers board policy.

Parents can use the board in the process of obtaining a proper education for their child, especially one who is classified with an IEP or is under a 504 plan. However, there are things you need to know first, and steps you need to take before you consider approaching the board.  I am familiar with the legal process governing school districts in New Jersey, NJSA Title 18A.  Each state has its own set of statutes to govern the operation of school districts and boards of education, which can probably be found online if you need to refer to them.

Before you approach your board, get a list of procedures that the may district have in place for parents who want to complain about an issue, and also get the “chain of command.”  It tells you who is supervised by whom. Follow it before taking other actions.  For example, if your complaint is with the teacher, your first step should be to sit down with the teacher and try to work things out.  Explain to him/her in a non-confrontational way the problems your child is having in school due to Lyme disease.  If the issue is not resolved with the teacher in a face-to-face, write a letter.  Always document complaints in writing.  Next step up is usually the building principal  A personal meeting is good, then put complaint in writing if not resolved. At this stage, you should also be copying any communications to the person in the special services department who is the case manager if your child has an IEP (Individualized Educational Program) or to the 504 coordinator if your child is covered under 504.  Every district in the country must have one. Ask for a parental rights booklet, NJ has one and most other states do, too.

If your problem is with the child study team/504 coordinator, then you meet with them to discuss the issue.  If it is not resolved at the table, your complaint should be put in writing and copy whoever oversees the child study team, e.g.,  a special services director, an assistant superintendent, or in small districts, the superintendent  him/herself or your state’s equivalent (chief school administrator, CSA).

Explore help options from other entities. Check if there is a parent teacher organization specifically for students with special needs.  They may be able to guide you.  If there is not one in your school, check the other schools in the district.  Also check to see if you have a county office of education, or perhaps your state has another governmental jurisdiction (e.g. parish) which may have jurisdiction over the district and it may be able to help you. Call them to see what they can do.  Copy them on correspondence from this point forward. Sometimes they will step in and investigate a district’s special education department if the complaint is serious enough, or if others have similar complaints. Write to and/or call the office of the State Commissioner of Education at your state department of education. 

If your issue is with board policy─the policy is interfering with your child’s ability to get accommodations─ask for the written policy, do not accept the district’s word there is a policy. Make sure the policy applies to special educations students, sometimes there are separate policies for them.  If it appears your student is covered under a district policy and you feel it is discriminatory because of your child’s condition, write to the board and state that. Find out how to get school policies changed.

Your next option might be to go to the elected or appointed board of education.  If time is not a factor, you might want to sit in on a few board meetings to see how they operate.   Check out the board committees.  There may be a special education committee or policy committee who can help you.  Remember that board members are people like you, members of your community who are trying to make sure children get a proper education. An elected board will probably be more responsive than an appointed one, since they answer to you and to your neighbors.

Most, if not all states, have privacy laws, so boards cannot discuss your child’s case publicly.  You can first try to call some of the board members (districts have listings of members) and explain your problem to see if you can find a sympathetic ear.  If that does not work, see if you can attend a committee meeting.  If not, you may want to go to a meeting of the board and during the public comment time, stand up, and speak generally about your child’s problem.  Some districts require you to state name and address for the record. Ask if that can be waived for privacy reasons, but you may have to give it. Remember this does expose your child to public scrutiny, although you are not giving your child’s name, so you need to weigh the pros and cons. Often however, when you begin to speak and say that you feel your child’s rights are being violated, or the district is not providing appropriate services to your child, the board will immediately say it cannot discuss this issue in public, and it will often direct the CSA to set up a private meeting with you.  Now you are in a stronger position, because the board is aware there is a problem and it is going to want to hear from the CSA that the issue has been favorably resolved.   You have put them on notice that you are not afraid to confront them about the issue in public, and they do not want you to come back publicly again.

Contacting the press is sometimes a last resort parents use when they feel they have exhausted all other possibilities and still cannot get their child’s situation resolved. Districts do not like adverse press.  Children with problems who are not being helped make a great story for them. Again, there are privacy issues involved so before even considering this action, assess those factors and the impact on your child.

Remember, every state has an address for appeal of 504 cases, since this is federal legislation. Under an IEP, many states have an appeal or mediation process you can go through. Use it. Bottom line, if things go totally awry, you can consider taking the district to court.  Districts do not like to go that route because of expense and their fear of precedence.  Often they will settle out of court.

The choice is yours to make, no one can recommend or say which of these actions, if any, will bring positive results, but inaction or allowing an uncooperative district to control your child’s fate will not get the services your child is entitled to and needs.  “The squeaky wheel gets the grease” is a truism in the educational world.

Editor’s note: Ms. Smith is a former 12 year member of the board of education in her community and former board president.  She was an officer in the Monmouth County School Boards Association, active in the NJ School Boards Association committees and at the federal level. She also sat on the [NJ] Governor’s Lyme Disease Advisory Council when it worked on the NJ Lyme disease curriculum, Making a Difference: Lyme Disease Prevention and Education Guide, which was adopted statewide by the NJ State Department of Education. It is the only statewide curriculum in the country for Lyme disease.  Former presidents of the LDANJ, Kerry Fordyce, and of the NJ Lyme Disease Coalition, Peggy Sturmfels, were instrumental in this process.

The Lyme Disease Association of New Jersey, now LDA, was successful in having the following laws adopted in New Jersey.
New Jersey Statutes Annotated 18A

18A:35-5.1.    Lyme Disease curriculum guidelines 
   1.     The Commissioner of Education, in consultation with the Commissioner of Health, shall develop curriculum guidelines for the teaching of information on the prevention of Lyme Disease within the public school health curriculum. The guidelines shall emphasize disease prevention and sensitivity for victims of the disease.  The Commissioner of Education shall periodically review and update the guidelines to insure that the curriculum reflects the most current information available.    L.1991,c.488,s.1. 

18A:35-5.2.    Availability of guidelines 
   2.     The commissioner shall make the curriculum guidelines available to all school districts in the State and shall encourage their adoption by those districts which are located in areas of the State which have a high incidence of Lyme Disease.    L.1991,c.488,s.2. 

18A:35-5.3.    Guidelines for, training of teachers instructing infected students 
   3.     The Commissioner of Education, in consultation with the Commissioner of Health, shall also provide curriculum guidelines for the training of all teachers who instruct students with Lyme disease which emphasizes the special needs and problems of students with the disease, in order to provide information about how best to teach those students.  Each school district shall annually provide training to all teachers who instruct students with Lyme disease, based upon the guidelines.   L.1991,c.488,s.3. 





Permethrin Susceptibility for Blacklegged Ticks on Shelter Island

In this recent study by Burtis et al. published in the Journal of Medical Entomology, researchers assessed susceptibility of Ixodes scapularis ticks to Permethrin treatment on Shelter Island, NY where 4-poster devices have been implemented for deer topical treatment from 2008 to 2019. The 4 -poster method has effectively reduced questing tick densities, but authors question whether the resulting selection pressure is strong enough for resistance to emerge in tick populations .

The researchers compared susceptibility of I. scapularis ticks from Shelter Island with I. scapularis ticks collected from deer at the Cary Institute of Ecosystem Studies (CIES) in Millbrook, NY where no 4-poster devices are in operation and pesticides are not widely applied applied, as well as I. scapularis larvae reared from a long-term laboratory-reared colony maintained by CDC.  .

Authors found that I. scapularis ticks collected from Shelter Island and Cary Institute were less susceptible to permethrin than the CDC colony reared ticks. They also found that ticks from Shelter Island were significantly less susceptible than those from Cary Institute, but noted difference in resistance ratios was relatively small. Researchers also found that field populations of I. scapularis ticks may be less susceptible to Permethrin than the CDC laboratory colony, regardless of selective pressure from 4-poster devices.

Authors suggest that Permethrin susceptibility of tick populations should be monitored from other 4-poster control areas regionally to support the development of guidelines for managing pesticide resistance in the field. 

Read full text article here.

Read more LDA prevention posts here.

Lenzilumab: Proven Effective COVID Treatment

According to a Dartmouth-Hitchcock press release, Dartmouth-Hitchcock Medical Center (DHMC) was one of 18 sites that conducted patient trials with lenzilumab and found this drug to be a safe, well-tolerated, and highly effective treatment against COVID-19.

Lenzilumab works by preventing and treating “cytokine storms,” an immune hyper-response, which is a life-threatening, systemic inflammatory response in the body triggered by the COVID-19 virus. Results of the trials showed that patients who received lenzilumab and other treatments (including steroids and/or remdesivir), had  greater relative likelihood of survival (54%), without the intervention of a ventilator. 

Humanigen, Inc., is the biopharmaceutical company that makes lenzilumab. The Food and Drug Administration (FDA) is soon expected to review lenzilumab for treatment of COVID-19.

Read full Dartmouth-Hitchcock News Release here

Read more LDA Articles on COVID here

Advantages of Multiplex Immunoblot Assays for COVID

In this study, researchers found that multiplex COVID-19 Immunoblot (IB) assays offer many advantages for evaluating antibody responses to multiple SARS-CoV-2 proteins in a single sample in COVID-19 patients. 

The authors found that IB assay results can be obtained in less than 3 hours after serum or plasma collection using pre-prepared IB membrane strips and require minimal washing and reagent addition steps. The IB assays also maintain visible signals that remain stable for several weeks and are easy to interpret. The IB assay can also be adapted to detect antibodies of other immunoglobulin classes, and in other bodily fluids such as saliva and tears, which is important because the mucosal IgA and blood IgG and IgM antibody responses in COVID-19 can differ significantly. The COVID-19 IB assay is also easily expanded to include additional virus antigens.  

Results of the study confirmed other common observations in COVID-19 in regard to IgM and IgG antibody levels being variable with time after infection.  Additional findings of the study suggest that determining both IgG and IgM antibodies early in an infection, before approximately 10 days from onset of disease, and IgG antibodies later (at about 8 weeks after infection), provide the best sensitivity for detecting antibody responses in COVID-19 IBs.

The clinical sensitivity and specificity of the COVID-19 IB assays meet the United States recommendations for laboratory serological diagnostic tests however, authors noted may be most useful for large seroepidemiological studies in specific populations with a high prevalence of COVID-19.

Read the full text article here.

Read additional LDA posts on COVID here

Surveillance of Babesiosis in the US

New study summarizes human surveillance data from 2011-2018 in the United States for Babesia infections reported to the Centers for Disease Control and Prevention (CDC) through the National Notifiable Diseases Surveillance System (NNDSS). Data shows an increasing trend of reported Babesia cases (14,159 total) during this time period, with white men in the middle and elderly age groups most affected. Data also shows that the New England and the Mid-Atlantic regions of the US reported highest numbers of Babesia cases. 

Access to full article can be found here

Read more LDA articles on Babesia here. 

New Test: Detecting Lyme With “Footprints” of Bacteria

New study shows that detection of Borrelia prophages, equated as “footprints” of Borrelia, can be used to identify the bacteria due to the close correlation between them and the exact prophages found in each Borrelia host. Evidence presented in this study shows that prophages can be released outside the bacterial cell following stressors such as antibiotic use and are easier to detect than the bacteria itself. 

Testing for prophages rather than the bacteria in blood samples, when bacteria may not be present or present in very low numbers, yields a higher chance of detection. The study further states that this test can be developed not only as a diagnostic marker for accurate identification of Lyme disease, but also to differentiate Lyme disease from related infections and coinfections such as relapsing fever.  

Read full article here. 

Read more LDA articles on Lyme testing here.

Periodontitis Associated With Severe COVID

Case study shows that periodontitis was associated with COVID-19 complication including death, ICU admission and need for assisted ventilation. Findings also show COVID patients with periodontitis to have higher white blood cell counts, D-dimer and C Reactive Protein levels, biomarkers that are linked to worse disease outcome.

Read full case study here.

Read more LDA posts on COVID here. 



Lyme Activities by State

The section contains articles of individual state activities and multi state activities related to government actions or patients’ or advocates’ action to legislate or educate. Click on the picture of your state or click on USA for multistate actions or information.












New Hampshire  
New Jersey  
New York  
Rhode Island 


West Virginia

















































NIAID Webpage on Lyme Vaccines

The National Institute of Allergy & Infectious Diseases (NIAID), National Institutes of Health (NIH), has a page on Lyme vaccines including its information on what occurred with the first Lyme vaccine, LYMErix, and what is happening with some current vaccines and vaccine research.


Congressional Lyme Caucus 2021

The Congressional Lyme Disease Caucus is a bi-partisan group working together in the U.S. House of Representatives to take action on Lyme & tick-borne diseases. Under the continued leadership of Congressmen Chris Smith (NJ) and now with the new 2021 co-chair, Henry Cuellar (TX), the Caucus will help the Lyme Community by focusing on Lyme & TBD issues in Congress.

Any interested Representative can contact the office of Congressman Christopher Smith (NJ) for more details or to sign onto the Caucus. Check the list to see if your Congress Member has signed on.

Rep. Chris Smith, Pat Smith, Rich Smith discussing actions to take for House Lyme Caucus
Lyme Disease Association’s President, Pat Smith, and Vice President, Richard Smith, met  with House Lyme Caucus  Co-Chair Cong. Chris Smith,  to discuss actions to take in DC to help those with Lyme and to stop the spread of Lyme & TBD.

List of Current House Lyme Disease Caucus as of 6/16/21
Smith, Christopher H. (R-NJ-04), Co-chair
Cuellar, Henry. (D-TX-7), Co-chair
Cohen, Steve (D-TN-9)
Connolly, Gerald E. (D-VA-11)
Courtney, Joe (D-CT-2)
DeGette, Diana (D-CO-1)
Delgado, Antonio (D-NY-19)
Deutch, Ted (D-FL-22)
Fitzpatrick, Brian (R-PA)
Gottheimer, Josh (D-NJ-5)
Hartzler, Vicky (R-MO-04)
Higgins, Brian (D-NY-26)
Holmes Norton, Eleanor (D-DC)
Keating, William R. (D-MA-9)
Krishnamoorthi, Raja (D-IL-08)
Langevin, James R. (D- RI-02)
Lofgren, Zoe (D-CA-19)
Malinowski, Tom (D-NJ-7)
Maloney, Sean Patrick (D-NY-18)
McCaul, Michael (R-TX)
McGovern, James P. (D-MA-02)
Moulton, Seth (D-MA-06)
Peters, Scott (D-CA-52)
Pingree, Chellie (D-ME-01)
Pocan, Mark (D-WI-02)
Posey, Bill (R-FL-8)
Reed, Tom (R-NY)
Stefanik, Elise (R-NY-21)
Steil, Bryan (R-WI-01)
Thompson, Glenn (R-PA-15)
Tonko, Paul (D-NY-20)
Wexton, Jennifer (R-VA-10)
Wild, Susan (D-PA)
Wittman, Robert J. (R-VA-01)

More about the Caucus
The bipartisan Congressional Lyme Disease Caucus is dedicated to educating Members of Congress and staff about Lyme and other tick-borne diseases, as well as advancing initiatives that are designed to help the estimated 476,000 Americans who develop Lyme disease each year and all of those individuals living with the disease long term.

The Caucus co-chairs have led annual appropriations requests in support of Lyme disease research through the Labor-HHS Appropriations Act and also the Defense Appropriations Act. In 2015, the Caucus secured for the first time ever, inclusion of tick-borne diseases (TBD) into the Congressionally Directed Medical Research Program,  (CDMRP).  $5 million from the Department of Defense (DoD) budget  was included through the Defense Appropriations Act for Lyme disease research through the  CDMRP.  Subsequently, the TBD CDMRP continued to be funded each year at that level, and then $7 million was secured for the program in 2020.

The Caucus helped advocates secure another major win for Lyme disease. In December of 2016, the United States House of Representatives passed, and former-President Obama signed, the 21st Century Cures Act. The Cures Act included language – similar to a bill that Rep. Smith introduced previously – which created the HHS Tick-Borne Disease Working Group (TBDWG). Specifically, the TBDWG under the auspices of HHS, is comprised of federal and non-federal members tasked with reporting to Congress every two years for 6 years on scientific advances, research questions, surveillance activities and emerging strains in species of pathogenic organisms. Patients, advocates and treating physicians sit at the same table with government officials. In 2018, the WG sent a report to Congress with recommendations on Lyme and other tick-borne diseases. The 2020 Working Group report was submitted early in 2021 with its recommendations.

See 2018 WG Report

See 2020 WG Report