Lori Dennis is the definition of a Mama Bear in the Lyme community. She is a fierce advocate for better treatment of Lyme patients and recognition of chronic Lyme disease by the CDC and IDSA. Her son was diagnosed with Lyme, and as a mother she fought with him for an accurate diagnosis and satisfactory treatment. As an intelligent and thoughtful person, the bureaucracy surrounding Lyme disease made her intensely angry and frustrated. She channeled her feelings into her book Lyme Madness: Rescuing My Son Down the Rabbit Hole of Chronic Lyme Disease, which is available on Amazon. Follow Lori on her Facebook page and visit her website. Enjoy the interview. I especially like what she has to say about Googling symptoms and the quote she shares.
Tell us a little about who you are and what you do:
I am a Registered Psychotherapist in private practice in Toronto.
Your son has Lyme disease. Tell us about his Lyme story, how do you think he contracted Lyme?
I was forced to plunge myself into the world of Lyme four years ago when my adult son, who lives and works in New York City, became acutely ill. I could see for four years prior to that time, in his last semester at Brown University in Providence Rhode Island, that he was just not himself. He began to exhibit symptoms that were outsized - he lost a lot of his hair quickly at the age of 22 and he was experiencing anxiety that was not easy to explain. His light seemed dim. It was not until one week after he had a flu shot in the fall of 2012, that he fell acutely ill.
Like most chronic Lyme sufferers, we don't know how or when he contracted Lyme. It could have been a tick bite at overnight camp in northern Ontario where he spent his summers from ages 12-17. Or it could have been at Brown University where Lyme is also endemic. He never saw the bullseye. He never saw the tick that apparently bit him, if in fact that is how it was actually transmitted. We just don't know. After he got a flu shot he fell ill and the symptoms just cascaded from that point on.
How long did it take him to get a diagnosis?
It took 18 months and 20 medical specialists in Manhattan to completely miss his diagnosis altogether - I remain outraged at this fact to this day. I obviously came to learn that most chronic Lyme sufferers have experienced the same thing, give or take a detail or two. This is honestly what has driven me to write Lyme Madness. I have been propelled by my outrage at the medical system. The lack of interest, the denial, the neglect, the invalidation that people are experiencing worldwide is unconscionable to me.
At my son's lowest and most desperate place in May 2014, my intuition kicked in and I Googled Lyme (I certainly wish that my intuition had kicked in sooner). Despite what doctors have to say about Google, I feel blessed to have had this resource. It was the only way we could have figured it out as none of these hot shot specialists even had it on their radar. So, if this hurts their egos or causes them to mock us, so be it. I can live with that. Until they begin to do their job properly, we are left to be our own diagnosticians, microbiologists, immunologists, rheumatologists, neurologists, infectious disease specialists, and so on. As Kris Newby of Under Our Skin fame told me when I interviewed her, chronic Lyme is a "do it yourself" disease. Rings true.
Once I knew in my heart that it was Lyme he was suffering from, I Googled (once again) "Lyme specialists" and learned for the first time that there was such a thing as a Lyme Literate MD. We were fortunate to get in to see one in NYC very quickly - on a cancellation. And so our medical odyssey with chronic Lyme disease began.
I look back to that watershed moment and think about how little we understood then. How we had no idea how long and arduous this road would be. How I would be compelled to write a book on the subject. How this disease is so much more than ticks and bulls-eye rashes as the media would have us believe.
As you stated, you wrote a book entitled Lyme Madness. What compelled you to write the book?
Lyme Madness was derived from my sense of chronic outrage, confusion, isolation, worry and overwhelm. I was busy reading about chronic Lyme disease at every moment I could find. And the rabbit hole just got deeper and deeper, darker and darker. No one in my world understood or had the capacity to listen to everything I was learning. So I needed to find an outlet for all of this information that I was gathering and the madness of it all. Thus Lyme Madness was born.
I am hoping that my book will help others be able to navigate this journey a little bit more easily, and that it will help them to feel a little bit less isolated and "crazy" by their experience which is being negated by so many. I hope that their loved ones will think twice before rolling their eyes or offering ridiculous platitudes. I hope that some doctors (including psychiatrists) will wake up and join us in this nightmare called chronic Lyme.
What do you want people to know about Lyme disease?
Last spring, I wrote a post on my Lyme Madness Facebook page that read:
"Lyme sufferers are victimized in five different ways: by the disease itself; by doctors who turn their backs; by loved ones who roll their eyes and walk away; by insurance companies who refuse to provide coverage; and by the CDC and IDSA who say that 'chronic Lyme disease does not exist.'"
This post had 104,000 views and more than 1,000 shares. What this tells us is that it hit a nerve far and wide. I’ve since been told that Lyme sufferers are also victimized by schools that require ongoing paperwork for academic accommodations - something I hadn't thought about as my son is an adult.
When I read your post on your hospital stay, I realized, not for the first time, that hospitals victimize Lyme sufferers too, of course, by forcing them to explain and justify their illness at each and every emergency visit, clouding sufferers with a sense of shame, as if they are fabricating their experience.
Do you have any advice for the newly diagnosed?
What I want Lyme sufferers to know is that they are not alone. That there are millions suffering, and few listening. But that they can get support and validation from the other chronic Lyme sufferers all over the world. I have spoken to people in the Netherlands, in the UK, in Australia, in Japan, in Scotland, in Ireland, in Germany, across Canada, and the US. It is the very same story world-over. The medical powers that be insist that chronic Lyme disease is "difficult to catch, easy to diagnose, and easy to treat."
Nothing could be further from the truth.
I want Lyme sufferers to know that we are making strides. With every book, every blog, every protest, every petition, we are being heard. But it will take time to steer this ship in the right direction. In the meantime, we all have to find "workarounds" - doctors and protocols that are outside of the box of conventional medicine. I believe that chronic Lyme is now at the forefront of a paradigm shift in medicine. In time, we will continue to move far more toward homeopathic, naturopathic and energy medicine as allopathic medicine has rendered itself ineffectual for chronic Lyme sufferers.
Please share a quote or mantra that inspires you:
The quote that keeps me going and helps me to gather more and more courage as I move toward publishing this book is: "All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident." - Arthur Schopenhauer
Lyme patients often hear the words, "But you Don't Look Sick." It's a source of confusion and pain. Of course we don't want to look sick, but we want others to look past how we look to how we feel.
This phenomenon is not only experienced by Lyme patients. It's a common occurrence for anyone who has an "invisible illness," or an illness you can't see based on outward appearance.
I try to live by the quote, "Be kind for everyone you meet is fighting a hard battle." Even if you don't have an illness, you might be going through a divorce, someone important to you may have passed away, or any number of other difficulties. Everyone is battling something and we need to remember that when we talk to each other.
Here is a link to my article:
The High Cost of Telling Someone 'You Don't Look Sick'
I will be a regular contributor on the Global Lyme Alliance blog. I will post future articles here and on social media.
I would love to hear other stories about being told you don't look sick and publish them as a guest post. If you have a story, reach out to me on my connect page.
"Be kind whenever possible. It is always possible." - Dalai Lama
Many people with Lyme disease talk about how they don't recognize themselves before and after Lyme. I wanted to write a post to capture that feeling.
I thought about the things that are different about my personality since I got sick. When I examined the changes, I realized that some were positive and some were neutral, not good or bad, just changes.
All change is hard when you have to let a part of yourself go.
You can my thoughts on this topic here:
How Lyme Disease Changed My Personality
How has Lyme changed your personality?
"The changes we dread most may contain our salvation." - Barbara Kingsolver
I'm Kerry and I was diagnosed with chronic Lyme disease in 2016. This is a positive space for those of us coping with Lyme disease and other invisible illnesses.