Every day, in doctors’ offices across the US—as well as in Canada, the UK, Ireland, Amsterdam, Australia, Sweden, in 80 countries and on every continent—chronic Lyme disease sufferers are being told that their debilitating, destructive, multi-systemic illness is nothing more than a small nuisance condition that is really just ‘all in their head’.
For more than forty years, mainstream medicine has kept chronic Lyme disease in the shadows. The disease itself, as well as the political machinations of this disease, plunges sufferers down a complicated, confusing, and terrifying abyss—a black hole of personal anguish, conflicting medical views, widespread corruption, and unrelenting health care navigation.
Today, chronic Lyme disease has reached pandemic proportions, with a grossly underreported 300,000 cases in the US alone, and millions suffering worldwide. This is a critical time for mental health professionals to step up for the sake of millions who are chronically ill, infirm and medically abandoned.
As mainstream medicine continues to turn its back, invalidating, denying, ignoring and even mocking the sufferers of this very real chronic illness, the mental health profession has a moral and ethical obligation to create a system of care for those who are sick and dying, who are without medical support and are left to struggle entirely on their own. What we desperately need is a wake-up call to psychiatrists and all mental health care providers, asking you to become educated about this infectious disease and be aware that it must be used as a differential diagnosis.
How have I come to know this Lyme world so intimately?
For more than four years now I have been immersed in the land of chronic Lyme, driven by my adult son’s illness. I am a Registered Psychotherapist in private practice in Toronto, Canada where I support chronic Lyme sufferers firsthand. And I am the author of the newly released book Lyme Madness: Rescuing My Son Down the Rabbit Hole of Chronic Lyme Disease.
We entered ‘Lymeland’ in October of 2012, when we were forced to go on a long, terrifying and overwhelming medical odyssey starting with a grueling 18-month journey into the offices of 20 medical specialists in NYC, each of whom missed my son’s diagnosis altogether. This hero’s journey required us to navigate my son’s declining health issues entirely on our own. We were forced to do our own research and use our intuition, determine the diagnosis for ourselves, and then traverse the slippery slope of this foreign land—an upside down, inside out, mad world where most doctors are not there to support you save for a handful of ‘believers’. On this expedition, just like all Lyme sufferers and caregivers, we were forced to become our own microbiologist, neurologist, immunologist, gastroenterologist, infectious disease specialist and so on, in order to map out a treatment plan, all without a GPS.
Our story is by no means unique. Most chronic Lyme sufferers are ill for months, years or even decades before they come to understand the root cause of their dis-ease. Most sufferers consult with a multitude of doctors only to have to figure it out for themselves.
So this has now become part two of my mission: to educate my colleagues about the devastating neuropsychiatric, bio/psycho/social, and physical effects of this illness.
When patients present with intractable depression, intractable anxiety, and a myriad of other symptoms, mental health professionals must consider that infectious disease can potentially be a root cause. It’s not enough to only consider childhood trauma when assessing mental health. And it’s no longer acceptable or appropriate to make a bee line to the prescription pad as the first line of defense. First, the potential underlying mechanisms of neurological inflammation, immunosuppression, and infectious disease need to be more widely considered.
Chronic Lyme disease is a neurological, bacteria driven, multisystem, immunosuppressive, post sepsis illness. And it’s a disease that for more than forty years has been kept in the shadows by mainstream medicine, forcing sufferers to go it alone and navigate this life-altering illness without adequate support. Many are losing their health, their livelihoods, their relationships, their homes, and their dignity.
Yes, it’s true. Chronic Lyme disease is, in fact, in your head. But not in the way that doctors intend that to mean. Contrary to medical consensus, chronic Lyme disease is not a made-up illness. It is NOT a case of malingering, Munchausen, hypochondria, laziness, or “craziness.”
Chronic Lyme disease is all in your head because it is primarily a neurological disease, wreaking havoc on your brain and your nervous system—as well as your heart, your liver, your kidneys, and so many other organs. Lyme disease patients can, and most often do, experience anxiety, depression, panic attacks, rage, attention problems, short-term memory loss, personality changes, mood swings, and learning disabilities.
Chronic Lyme sufferers can also experience detachment, dissociation, depersonalization, psychotic episodes, and obsessive-compulsive disorder. As with any cognitive impairment, chronic Lyme sufferers may have trouble keeping track of their daily tasks, they may lose things easily, including words and objects, they may have trouble retrieving information, forget appointments, and struggle with holding a conversation.
Sufferers are desperate for mental health professionals (along with all other medical specialists) to understand Lyme so that they will know to consider it as a potential differential diagnosis before plying a patient with psychotropic meds that may make matters worse. There have been so many Lyme sufferers misdiagnosed as bipolar or schizophrenic and then institutionalized when, in actual fact, the patient who has been committed to a psych ward is suffering from Lyme encephalitis.
Suicidal ideation and completed suicides are not uncommon among Lyme sufferers. I understand why this is the case, having personally witnessed the intolerable suffering of those who have wanted to end their lives. I have also read plenty of stories about those who have taken their own lives as a result of Lyme—stories that are heartbreaking and tragic, and perhaps could have been prevented.
There are a number of reasons why people commit suicide. And chronic Lyme is the perfect storm. It’s a disease that matches up with so many reasons for not being able to see a way out of the darkness. It is clear to me how and why chronic Lyme sufferers, in particular, so often succumb to this disease by their own hand.
Anxiety and depression are commonly experienced neurological symptoms of Lyme. After all, with Lyme, the brain is inflamed and therefore subject to all sorts of neurological imbalances. This, compounded by the lack of (and often outright negation of) medical attention, can lead to discouragement, fear, helplessness, frustration, loss, grief, loneliness, and, at times, little hope for recovery. When an illness is chronic and there is unrelenting suffering and inadequate relief from the myriad of debilitating symptoms, anxiety and depression can become even more pronounced.
Lyme depression is often intractable—that is, resistant to treatment. Lyme can also affect the endocrine system, potentially creating mood disorders. The collection of symptoms—including brain fog, headaches, fevers, joint pain, nerve pain, shakiness, instability, dizziness, vision and auditory disturbances, hallucinations, seizures, paralysis, and more—experienced day in and day out, can wear you down, making even the most resilient warriors eventually want out.
Lyme sufferers are socially isolated, medically denied, crying out for help, and no one is listening. Family and friends don’t know how to help. Some loved ones all but abandon the Lyme sufferer because they get fed up with the constant complaining and limitations. As doctors are showing Lyme sufferers the door, it becomes more and more difficult for loved ones to understand and support those with Lyme. Lyme sufferers feel like a burden. They can lose their independence, their livelihoods, and their ability to function. They feel like they’re losing their minds at times. They live with constant brain fog and cognitive limitations, making every task far more difficult. They get worn down by the chronic pain and illness, by the fear, the inactivity, and the inability to plan or have anything to look forward to.
Lyme sufferers have to face loss every day. Loss of health, loss of the person they once were, loss of independence, loss of dreams and goals, loss of missed opportunities, loss of the life they once had, loss of an identity, loss of self-esteem, loss of loved ones who abandon them, loss of hope, loss of finances, loss of employment, and loss of a future. Lyme sufferers are victimized many times over—by the disease itself, by doctors who turn their backs, by family and friends who roll their eyes and walk away, by insurers who refuse coverage, and by a medical system that negates the very existence of this disease.
I would give anything to un-learn, un-know and un-see the ugly and devious underbelly of mainstream medicine and all of its political machinations. And I would of course give anything to see my son fully recover from this life-altering illness. We continue to work at it every single day.
Please know that chronic Lyme disease is about so much more than ticks and bulls-eye rashes—which only 20% of sufferers ever get to see as proof positive of their disease. Chronic Lyme is the new B-cell AIDS. And if that’s not madness enough, it is also known as “the New Great Imitator,” mimicking more than 350 medical conditions including chronic fatigue syndrome, fibromyalgia, Alzheimer’s, Parkinson’s, Rheumatoid Arthritis, Multiple Sclerosis and more. If only chronic Lyme disease were just about ticks and rashes. Those were simpler times when we thought this was the case.
If all that I’ve shared about this disease is overwhelming, confusing or frightening, you will understand why I’ve called my book LYME MADNESS. There is no other way to describe this journey that we’ve been forced to take. And as a therapist, an empath, and now a Lyme advocate, I know that it’s my calling to tell this cautionary tale—to be one of many voices out there working to wake up the world to what is happening.
Make no mistake: healing from chronic Lyme is a complex, multilayered, do-it-yourself guessing game, with a daily and sometimes hourly hyperfocus on what is causing the symptoms and how best to address them. And while my son has some very good non-mainstream doctors on board to help him heal, the constant shifts in his health require us to continue to be our own sleuths, researchers, doctors, and diagnosticians at all times.
Several years later, we are still searching and filing away new ideas as my son’s various symptoms wax and wane. Without question, this process is expensive and draining, as it requires throwing all kinds of stuff against the wall to see what may or may not stick. If the medical system would just do its job, the job that it’s supposed to do by training and by the very meaning of the Hippocratic oath, then perhaps this journey could be a little less do-it-yourself with a lot more certainty.
My hope is that the blaming and the discrediting of millions of patients worldwide ends now and that mainstream medicine starts to do its job and stops sick-shaming the sufferer with the statement that “it’s all in your head.”
As Dr. Kenneth B. Liegner, a US Lyme-Literate MD, one shining light in a small community of doctors who support and treat Lyme sufferers, says: “In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government, and virtually the entire insurance industry have colluded to deny a disease. This has resulted in needless suffering of many individuals who deteriorate and sometimes die for lack of timely application of treatment or denial of treatment beyond some arbitrary duration.”
He has also generously reminded me, “If it were not for mothers, we would be nowhere with Lyme disease. It is MOTHERS, concerned about their families, their children, that have sparked ALL progress in this field!”
That’s because mothers know that when our kids are suffering—even our adult kids—we must trust that it is not necessarily all in their head. Mental health professionals must trust this too.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.