Lyme disease can
feel very isolating but it?s important to know that you?re not alone.
Having support is
an essential part of managing Lyme disease, and it can come in many shapes and
The support of your friends and family is
an important part of your journey but friends and family may not have the same understanding
as another patient. Having other patients who understand what you may be going
through is very helpful. You?ll hear this referred to as having a ?lived
A wide range of patient support groups
and resources are available. Some online groups support patients in any
location, others are location specific and meet in person.
If you?re looking to
meet other patients, we encourage you to join the online groups:
Lyme disease can present a range of invisible, but debilitating symptoms. This makes it tricky for those around you to understand how unwell you are.
Worsening symptoms can lead to changes in friendships and relationships as declining health may prevent you from doing the things you were once capable of. This often results in feelings of guilt, rejection and even isolation.
It is important to have tools that explain what you are going through. Managing expectations that people have of you can also help to avoid those negative feelings.
Christine Miserandino developed a useful resource called ?The Spoon Theory?, which many people with Lyme disease find valuable when talking about their health.
?The Spoon Theory? is an analogy that assists to explain to others what living with a chronic illness is like. The idea behind it is that a person managing a chronic illness has a limited number of spoons to use on any day. ?Spoons? represent the amount of effort required; tasks like showering or making dinner need a collection of ?spoons?.
Once the spoons are used up for the day, you?re not able to do anymore. This means that you must prioritise, sacrifice and compromise things every day. This concept is helpful when visualising the limitations of Lyme disease.
If you?re having trouble coping, we encourage you to read ?The Spoon Theory?. Sharing it with your family, friends and support networks will help them to better understand your limitations.
you have recently been diagnosed, you?re caring for someone with Lyme disease
or you?re curious to learn more about this condition, there?s an abundance of
information, personal stories and knowledge among the resources below.
From story books for children through to extensively researched medical accounts, there?s a book here for everyone ? no matter what stage of the journey.
General and medical information
Lyme disease in Australia By Dr Nicola McFadzean
Naturopathic Physician, Dr Nicola McFadzean, provides readers with a current snapshot of Lyme disease in Australia. Covering the history, politics and science behind the illness, as well as practical diagnostic and treatment guidelines from both a holistic and pharmaceutical perspective.
Lyme Natural By Amina Eastham-Hillier
Amina Eastham-Hillier brings 15 years of Naturopathic clinical practice and 25 years of nutritional practice together, to offer insight on treatment protocols for chronic Lyme disease, Lyme-like infections, co-infections and mould illness.
Why can’t I get better? By Richard I. Horowitz MD
World-renowned Lyme disease medical practitioner, Dr Richard Horowitz, shares his overarching approach to Lyme and chronic illness in this revolutionary book. Dealing with everything from symptoms to scientific research, treatment plans and politics, this is a must-read for anyone impacted by Lyme disease.
How can I get better? By Richard I. Horowitz MD
Following on from the success of his ground-breaking book, ?Why Can?t I Get Better??, Dr Richard Horowitz returns with a new handbook featuring updated research and an actionable step-by-step plan for implementing his 16 Multiple Systemic Infectious Disease Syndrome (MSIDS) Diagnostic Map to ensure better health.
Lyme: The First Epidemic of Climate Change By Mary Beth Pfeiffer
In this book, Mary Beth Pfeiffer explores the idea of Lyme disease being the world?s first epidemic as a result of climate change. Previously contained to certain areas thanks to the cooler climates, Lyme disease is now rapidly spreading and affecting an increasing number of people around the globe. This well-research account shares the stories of individuals and their families impacted by the disease.
Autobiographies & personal stories
Gone in a Heartbeat: A Physician?s Search for True Healing By Neil Spector MD
Leading American Oncologist, Dr Neil Spector pens a compelling memoir about his experience with Lyme disease. Sharing stories of courageous patients, he challenges us to look beyond the medical industry and become more informed about our health. ?To recognise that we are in control of our own bodies and destinies can be a powerful step towards true healing.?
Believe Me: My Battle with the Invisible Disability of Lyme Disease By Yolanda Hadid
Dutch-American television personality, Yolanda Hadid, candidly opens up about her experience with Lyme disease in her book ?Believe Me?. Navigating the complexities of diagnostic testing, conflicting medical opinions and mysterious symptoms, Yolanda provides an emotional but inspiring story that many people with Lyme disease will relate to.
Bite me: How Lyme Disease Stole My Childhood, MadeMe Crazy and Almost Killed Me By Ally Hilfiger
Following years of undiagnosed health issues and an eventual crisis at just eighteen, Ally Hilfiger was diagnosed with Lyme disease. In this compelling narrative, she shares the highs and lows of her journey back to health; offering readers hope and courage to transition from victims to survivors.
For family, friends & carers
The Lyme Book for Family, Friends and Caregivers By David Kent
Learning that a friend or family member has been diagnosed with Lyme disease can be a tricky time. What is Lyme disease anyway? How do you treat it, and how does it affect them? All of these are common questions that David Kent does a great job of addressing in his book specifically written for family, friends and caregivers.
When Your Child Has Lyme Disease: A Parent’s Survival Guide By Sandra Berenbaum and Dorothy Kupcha Leland
Lyme disease can cause puzzling symptoms in children, including pain, fatigue, gastrointestinal upsets, learning disabilities, behavioral issues and psychiatric problems. The illness can be hard to diagnose, however, and Lyme-related controversies in the medical world complicate the picture even more. Parents trying to find help for their suffering children often don?t know where to turn.
Nick, the No Good, Icky Tick By Karen Gloyer
Written by Lyme disease survivor, Karen Gloyer, Nick, the No Good, Icky Tick is an informative picture book following Abby and her dog as they discover a tick out on a walk one day. The book is designed to teach children and their families about tick bite prevention and awareness while outdoors, and provides some helpful tips to keep safe.
Grace and Scout By Michele Morgan and Lauren Lovejoy
This children?s story, written by Michele Morgan and Lauren Lovejoy, is about Grace and Scout who are best friends. One day Grace gets sick from Lyme disease and the pair have to navigate the changes in their friendship. This book is a wonderful tool to teach children the importance of true friendship especially in the face of illness.