Indianapolis Support Groups
ILC hosts a monthly in-person Lyme support group in Indianapolis on the first Saturday of each month from 10-11 am ET. We also host a virtual Lyme support group on the third Tuesday of each month from 7-8 pm ET.
Please sign up for ILC’s newsletters or check our FB page for any meeting updates or cancelations.
Financing Treatment
The Lyme Treatment Foundation – offers grants to any age patient receiving treatment from a Lyme-literate physician. Grants up to $4000 towards treatment.
Ticked off Foundation – A foundation offering grants and counseling services to Lyme patients in crisis who are at least 27 years or older.
Lyme Test Access Program (TAP) – This nationwide program provides patients who demonstrate a true financial need with assistance in paying for diagnostic tests for Lyme and other tick-borne diseases.
LymeLight Foundation – This organization offers grants to anyone between the ages of 3 and 25 year old who has been diagnosed with Lyme disease, and demonstrates a qualified financial need.
Patient Advocate Foundation – This nonprofit organization provides a variety of services to patients with chronic, debilitating, or life-threatening illnesses that are experiencing financial hardships or access to care issues related to their conditions.
ModestNeeds.Org – This organization offers temporary financial help to working people whose income is just above the poverty level, as well as information on affordable healthcare and medication.
LymeAid 4 Kids – This fund is provided by the Lyme Disease Association,and offers financial assistance to Lyme patients under age 21.
LivLyme Foundation – LivLyme Foundation. Financial grants for treating children under 21.
Social Security Disability & SSI Disability Claims – This is a private, nationwide disability law center that offers assistance filing disability claims.
Needy Meds – This nonprofit organization connects people with assistance programs that help cover medication and other healthcare costs.
GoodRx – This site allows patients to compare drug pricing among various pharmacies in their local areas to save money using printable or virtual coupons.
BLINK – BLINK uses technology to give “access to one, low negotiated price on over 15,000 medications. Simply pay online before you pick up at your pharmacy to save.” No membership fees. Refundable purchases. Order on-line. How it works.
Partnership for Prescription Assistance – This organization helps patients access prescription drug assistance programs.
Direct-Access Lab Testing – This lab offers discounted testing for those paying directly out of pocket.
finances, financing treatment
Documentaries & Videos
Lyme Disease: The Threat is Real
This brief animated video shows how easy it is for anyone to get a tick bite. yet how difficult it can be to get an early, accurate diagnosis for Lyme disease. You will also see the profound impact Lyme disease can have on children, who are the most at risk for contracting this often debilitating disease.
The Quiet Epidemic
The Quiet Epidemic is a documentary about a young girl and a Duke University scientist who are both diagnosed with chronic Lyme disease, and the pair search for answers surrounding the disease. Watch it on Apple TV, Amazon Prime Video, Tubi, or Vimeo.
I’m Not Crazy, I’m Sick
I’m Not Crazy, I’m Sick is a powerful documentary that chronicles three families who are fighting for survival against Lyme disease. The film highlights the physical, emotional, and financial toll the disease takes on their lives, as well as the urgent need for greater awareness, testing, and treatment options.
Under Our Skin: Emergence
Revisiting the unforgettable characters from Under Our Skin, in this follow up documentary we see that they have moved from horror to hope, arriving at better health and reclaiming their lives.
Books
The Lyme Disease Solution – Kenneth Singleton, M.D., M.P.H.
Why Can’t I Get Better? – Richard Horowitz, M.D.
Design: David Baldeosingh Rotstein – Why Can’t I Get Better?
How Can I Get Better? – Richard Horowitz, M.D.
Cure Unknown: Inside the Lyme Epidemic – Pamela Weintraub
The Deep Places: A Memoir of Illness and Discovery by Ross Douthat
Caregivers & Family
Caring for and loving a friend or family member with Lyme Borreliosis can be a humbling and frustrating experience. The Lyme journey is filled with many dark hollows and unexpected detours, and it can be hard to anticipate the needs of a Lyme patient – because the disease is so elusive and unpredictable that the afflicted person may not even know what he or she needs at any given moment.
Another layer of difficulty for caregivers and family members is watching someone you love go from being vibrant and full of life to suffering and struggling just to make it through the day. This illnesses strains relationships, and makes events like holidays and vacations tough to coordinate and enjoy. And, it can often feel like a second full-time job just helping a Lyme patient simply survive – much less have a good quality of life.
Indiana Lyme Connect was founded for both Lyme Borreliosis patients, as well as those who care for them and are trying to help them overcome this debilitating disease. Our monthly support group meetings are always open to caregivers and family members who wish to learn more about this disease that is so profoundly affecting their loved ones. Beginning in August 2020, ILC will also offer a monthly support group meeting just for you! Meetings will be posted on ILC’s FB page with instructions.
Also, stay tuned to this page for ILC events that focus on (and resources for) caregivers and family members of Lyme sufferers.
The Beginner’s Guide to Lyme Disease – Nicola McFadzean N.D.
Children & Lyme
Caring for a child with Lyme is a unique and unenviable situation – even among parents caring for children with other illnesses. You have to advocate for your child to get an accurate diagnosis and the appropriate treatment from a medical community that, at best, views the disease as controversial. You have to explain to school officials why your child misses so many days of class, and negotiate a way to make sure he or she keeps up with the work and doesn’t fall behind.
And, in addition to all of that, you need to be there for your child, to help him or her cope with the isolation and quality of life issues that come with this debilitating disease. As hard as it is for an adult to struggle with Lyme, for children, the disease can feel like a life sentence. For some, it might feel like all that they’ve ever known in their lives – a state of constant, chronic illness.
Here at ILC, we are hyperaware of how this disease affects both the children who contract it and the parents who have to care for and fight for them. Our monthly support group meetings are always open to parents and other family members who wish to learn more about this disease that is so profoundly affecting their child or sibling.
When Your Child Has Lyme Disease: A Parent's Survival Guide
Tick Busters
Helping kids learn about ticks and Lyme Disease can be tricky! Ticks are NOT a fun topic but it’s vital to help them understand how to stay safe when they’re enjoying the outdoors.
The Nataional Capital Lyme Disease Association recently created some excellent resources. Check out the Tick Busters: Tickula Wanted Dead or Alive Bundle that they have available.
Story Time Video
- Tickula: Dead or Alive Booklet
- Fun coloring book
- Tri-fold brochure & rack card
- Tick identification/membership card
- Temporary Tattoo
These are available in the “Tick Busters Bundle,” either individually or in large packs for classrooms or community groups.
Your Support Matters
Was the information on this page helpful to you? Please consider making a financial gift to Indiana Lyme Connect to enable us to continue our work in providing tick bite prevention and Lyme disease education to citizens, patients, and medical professionals throughout Indiana.
Indiana Lyme Connect is an all volunteer 501(c)3 tax-exempt nonprofit. 100% of your donations advance the mission of ILC.