by Stephanie Eckelkamp
We’ll get right to the point: Unless you have one of those “ideal” cases of Lyme disease that is promptly diagnosed and treated, things can get expensive.
To even get a diagnosis, many patients require more comprehensive testing than what’s done in many doctor’s offices, which can run upwards of $1,000. Plus, insurance companies generally don’t pay for the prolonged treatment necessary to resolve a chronic infection — since these companies follow the Centers for Disease Control and Prevention’s (CDC) guidelines that says Lyme can be sufficiently treated with a 28-day course of antibiotics.
This leaves many people sick and struggling to navigate the world of private practitioners who may be able to help — but at a higher out-of-pocket price point. According to a 2019 survey of 198 patients with Lyme and other tick-borne diseases, 35% percent said they had spent more than $10,000 on tests, treatments, appointments, and additional costs associated with their illness, while 27% said they spent somewhere between $5,000 and $10,000. Additionally, most of these people were forced to quit or cut back on work due to their symptoms.
Thankfully, several non-profit organizations have stepped up to help ease the burden for patients with the greatest financial need. If you or a loved one are battling Lyme disease and unsure how to pay for treatment, explore the Lyme treatment grants and services below.
Lyme Treatment Grants for Adults and Children
1. Lyme Treatment Foundation
The Lyme Treatment Foundation is an organization that offers $1,000 testing grants to be used toward comprehensive Lyme and coinfection testing through labs such as IGeneX and Armin Labs. They also offer treatment grants of up to $4,000 to help cover treatment costs from a Lyme-literate practitioner (MD, ND, DO, PA-C, or NP). In addition to its patient-focused mission, the Lyme Treatment Foundation funds biomedical research on new treatments and therapies for chronic Lyme.
Who can apply? Testing grants are open to people of all ages living in the U.S. (and several other countries) who can demonstrate financial need, while treatment grants are open to those who have been diagnosed with Lyme disease.
When to apply: Grant applications open at the start of each year.
2. LivLyme Foundation
Around 200 children a day are diagnosed with Lyme disease — including Olivia Goodreau, the young Lyme warrior who created the LivLyme Foundation at the age of 12, along with her parents. Their mission: To help other families avoid some of the pain and frustration they went through by providing grants for Lyme treatment and medication and funding research for a cure. (Fun fact: Olivia is also the brains behind TickTracker, a tick reporting and tracking app.)
Who can apply? Grants are open to U.S. residents aged 21 and under who can demonstrate financial need. Parents should fill out the application if their child is still a dependent.
When to apply: Grant applications open at the start of each year.
3. Lyme Light Foundation
Lyme Light Foundation was started by two families who had children suffering from Lyme disease — and who became acutely aware of its staggering expense. The organization offers grants to be used toward Lyme treatment for children and young adults. Grants are distributed based on financial need up to a lifetime maximum of $10,000 per person or $30,000 per family and may be used on medication, supplements, doctor visits, lab testing, alternative practitioners (e.g., acupuncturists), and transportation to and from appointments.
Who can apply? Grants are open to U.S. residents age 25 and under who can demonstrate financial need and are current patients of a Lyme-literate practitioner (MD, ND, DO, PA-C, or NP). Parents should fill out the application if their child is still a dependent.
When to apply: There are three separate grant application deadlines per year (April, August, and December), and funds are also distributed three times per year.
4. LymeAid 4 Kids
The Lyme Disease Association’s LymeAid4Kids program was started when Lyme patient and acclaimed author Amy Tan — who wrote the bestseller The Joy Luck Club — asked if the organization could do more for children battling Lyme. Now, LymeAid 4 Kids distributes grants of up to $1,000 for children and young adults under 21 to be used for diagnostic testing and treatments through licensed physicians. To date, they’ve distributed more than $419,000.
Who can apply? Grants are open to U.S. residents age 21 and under who can demonstrate financial need and are current patients of a Lyme-treating physician (the physician must fill out a portion of the application and submit it). Parents should fill out the patient portion of the application if their child is still a dependent.
When to apply: Grant applications are accepted on a rolling basis.
5. State-Specific Lyme Grants
We encourage you to look into Lyme grants available in your specific state. Here are two notable non-profits in the Northeast that may be able to offer assistance:
Partner in Lyme (Connecticut residents)
Partner in Lyme offers $1,000 grants to Connecticut residents of all ages with Lyme disease. Applicants must submit an email detailing their Lyme journey, a letter from their practitioner (MD, ND, DO, PA-C, or NP) confirming a diagnosis, and proof of residence. Funds can be used for treatments, medications, doctors visits, physical therapy, massage, and even healthy foods. Grant applications are accepted on a rolling basis.
Sam’s Spoons (Pennsylvania residents)
Sam’s Spoons, founded by a former Lyme patient, provides grants ranging from $500 to $2,000 to Pennsylvania residents of any age to help curb out-of-pocket treatment costs for Lyme and tick-borne diseases. Applicants must provide receipts of provider services, treatments, supplements, or other wellness interventions to be eligible. Grant applications are due in November of each year.
6. Lyme Test Access Program (Lyme TAP)
The Lyme Test Access Program, or Lyme TAP, is a nationwide assistance program for U.S. residents to help offset the costs of initial Lyme-related lab tests. Funding comes from donations from IGeneX, the Rotary Club of Southwest Eureka, and other sources. How it works: Patients submit an application along with lab testing receipts (from qualified labs) and tax returns — and if approved, they may be reimbursed up to 75% of the cost of testing.
Who can apply? Any U.S. resident may submit lab testing receipts for reimbursement, but preference is given to children under 18. Applicants must demonstrate true financial hardship.
When to apply: Applications are accepted, and funds are dispersed on a rolling basis, but receipts older than 12 months are no longer eligible for reimbursement.
Without a doubt, paying for Lyme treatment can be an enormous challenge. If you need some financial support for yourself or a member of your family, consider looking into whether or not you may be eligible to receive a treatment grant from one of these charitable organizations working to better the lives of Lyme patients throughout the country and beyond.