Lyme is ‘All in Your Head’ – A Wake-up Call to Mental Health Professionals

Lori Dennis
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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.

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25 COMMENTS

  1. Not sure this belongs on MIA. Lyme disease is not what people call “mental illness.” It is caused by an actual pathogen carried through the bite of a deer tic. This attacks the brain and CNS. Awful neurological problems.

    Of course the psych “meds” don’t help. They alter normal brains; they don’t restore chemical balance in the cases of real brain disorders like Alzheimer’s, Parkinson’s, or Lyme Disease.

    That said, I’m sorry for what your son and you have and are still enduring Dr. Lenhardt. He might benefit from certain types of therapy or symptoms control people suffering from immunity disorders use. I’m sure you’ve both done a lot of research already though and looked into a bunch of stuff.

    I believe Lyme Disease is a real neurological condition. I have a friend with it; very sweet woman, rather edgy from trauma to her CNS. A little eccentric and sickly. As someone with iatrogenic trauma, I can sympathize with folks who have nerve and brain damage.

  2. An interesting article. I do see the relevance to the MIA community, and I welcome the inciusion on this site of articles about diseases that mimic, in part, mental illnesses such as schizophrenia and bipolar. We’re all in the same boat when it comes to dealing with the medical community. Mania or hallucinatiions, whether the result of Lyme disease or a problem in living, are well, mania and hallucinations, and pretty scary to those experiencing them and to those who love them. One day, who knows, the more serious mental health conditions may turn out to be the result of a bacteria – it happened with ulcers (it’s the anxiety in your head, see a psychiatrist and drink plenty of cream). My son recently saw a neurologist in order to cross Lyme disease off the list of suspects for his “schizophrenia”. (We didn’t really think his symptoms were Lyme related, but again, he had not been tested early on when he developed psychosis, so why not rule it out? The neurologists ran him through a series of observational tests (no blood tests), and pronounced that he didn’t have the symptoms of Lyme disease. He was normal in all of the other tests, yet the neurologist still said he is “schizophrenic.” (No doubt because he carries the label around him like a scarlet A.) I would love it if one day it turns out a germ did cause this and a simple antibiotic would clear this up, but until and if science comes up with an answer, he continues to make progress through psychotherapy and alternative treatments.

    • Just like Jalvert told the hero of Les Miserables, “Once a thief, always a thief!” Because Jean Valjean stole a loaf of bread to feed his sister’s starving children he was branded a thief for life. Even after several years paying back his debt to society. Even after many years of living an exemplary life and helping countless others, he was nothing but a thief.

      Only in the case of your son, myself, and many other psych victims, we have done nothing wrong. Hallucinating, having unusual beliefs, prolonged sadness, etc. are not crimes. Yet people treat us worse than convicted felons. And they NEVER allow us to recover!

    • Agree with everything you said Rossa. My son is in the same situation and I too am waiting for the day when someone discovers what is causing his problems. His grandmother who has very similar symptoms as he does (both have been diagnosed bi-polar) was recently diagnosed with Lyme although she has never been bitten by a tick.

      • I am reading Lori Dennis’s book now, and she mentions the flu vaccine that her son was given a week before he started getting symptoms. I am shocked that the CDC recommends flu shots for everyone 6 months of age and older. Babies and young adults don’t need flu shots. They need to give their immune systems time to strengthen. When did it become standard practice to push unnecessary vaccines on the young? I don’t remember them when my chiildren were young. There’s huge amounts of money to be made by the vaccine manufacturers, of course, and public heath agencies make it standard practice. Canada, as usual, follows U.S. practice. One may well question why Lyme disease is becoming so prevalent.
        From the CDC website:
        When and how often should I get vaccinated?
        Everyone 6 months and older should get a flu vaccine every year by the end of October, if
        possible. However, getting vaccinated later is OK. Vaccination should continue throughout the
        flu season, even in January or later. Some young children might need two doses of vaccine. A
        health care provider can advise on how many doses a child should get.

        • I was astounded to find out that most kids have had DOZENS of “vaccinations” by the time they finish grade school. It explains a lot. We had two — polio and smallpox. This could be lowering our collective immunity. And they want to make some of them mandatory for everyone. This may be one way to find support and alliances in the fight against forced psych drugs.

  3. Thank you, Lori, for writing this poignant piece and I can fully attest to the overlap for mental health professionals. I have late stage Lyme, going 30 years undiagnosed. I am beyond lucky I survived and am only at the beginning of my treatments.

    As for this connection of Lyme to mental health, one of my first symptoms at age 12 was crushing anxiety over school work, social interactions, and my mom said I shut down one day, staring off and paralyzed, so worried I had an uncool costume for my birthday party. She said it was like I was possessed for the day–a state of being I have now episodically known throughout my life. I also began to show signs of severe depression, including not being able to see any “way out” as it felt to me. Out of what, only now do I know. I can’t remember a time that death didn’t seem like the ideal option until now.

    I was a well-adjusted and bright child. I set the bar/high scores on standardized tests for years over at school, excelled at sports, was out-going, happy, and had also loved to be on stage, performing all the time all over the city singing and acting (some of my performances are still aired on public access TV). I was a powerhouse. I would coach other kids on how to overcome stage fright, something I had never experienced. I knew I wanted to be a stage actress.

    All of that changed overnight. I lost my passion of acting because I couldn’t do it; I was crushed with stage fright. I couldn’t concentrate on schoolwork or would stare at it paralyzed with anxiety (although I still made good grades without much effort).

    I also, very relevantly, developed trichotillomania and skin picking (BFRB’s) about a year after being infected. Throughout my life, I have done all sorts of therapies from cognitive behavioral, EMT, psychotherapy, to all sorts of pharmaceuticals with no help. I have never stopped pulling. Only with Lyme treatments have I seen a reduction in my trich, amazingly! It’s overwhelming really. I mean, come on. I had a lifetime of insecurity and extreme anxiety about it (and a huge bald spot on the crown of my head) and antibiotics are actually helping??! Makes me want to vomit in my mouth that I was allowed to suffer through that. I’m on month two of not pulling.

    I also have had three diagnoses of PTSD over the years, including complex PTSD; HOWEVER, I now am seeing that trauma is processing differently in me during treatment. It’s softening. I know the trauma of being ill and other life events are real, but I truly am seeing and feeling my “true-self” come out and handle these memories in a well-adjusted manner now that my vector load is being reduced. There is no question. I know my processing is changing with Lyme treatment, thus absolutely tying it to mental health in a professional manner.

    Again Lori, thank you for your words. I cannot wait to read your book, but it may be slow-going since my ability to remember page-to-page, my attention span, and visual issues (words severely flash on a page, double-vision, etc.) keep me creeping along. If it isn’t already, I would suggest your publisher make an audiobook available for Lyme patients like me! (wink, wink)

  4. Lori,

    Thank you for sharing your family’s very important story.

    By doing so, you are being a voice for others in need of help.

    Underlying conditions, such as Lyme Disease, that go overlooked are a large piece of the “epidemic of mental illness” puzzle.

    We never know who we might help down the road by sharing our experiences with others, so your effort is very important to those involved in advocacy, treatment, journalism or other causes. I am glad that you were able to share your story on MIA.

    I have met many individuals originally diagnosed with a “mental illness” and later found to be suffering from Lyme Disease or other underlying medical conditions.

    A serious flaw in our mental health system exists because psychiatry uses the DSM5 with what they refer to as a “Chinese menu” approach.

    “Mental Disorders” are nothing more than descriptions of moods, thoughts, behaviors, emotions, etc. that are perceived to be “abnormal”.

    While the descriptions of states of anxiety, depression, mania, psychosis, etc. are very accurate, the labels of “mental illness” are worthless. The psychiatric labeling process is unscientific, unethical and has created a medication management monopoly.

    “By consensual agreement within the APA, psychiatric diagnoses are descriptive labels only for phenomenology, not etiological or mechanistic explanation for syndromes. Thus, a psychiatric diagnosis labels a pattern of signs and symptoms, but offers no hypothesis concerning the mechanism(s) of the clinical phenomena.(Davidoff et al., 1991).”

    All individuals who claim to be advocates for others should support a unified advocacy agenda that will advance testing for and treating the many known underlying causes of “mental illnesses”.

    Recently, an acquaintance confided in me that after undergoing routine surgery, she suffered for months with what was diagnosed as severe anxiety/depression.

    She was treated by a number of specialists and her bloodwork/MRI/other tests came out in the normal range.

    She ended up on psych meds, seeing a psychologist once a week for therapy and was completely debilitated by her condition.

    Finally, her primary care suggested checking her ferritin levels.

    Her levels came back extremely low.

    After 3 months of taking an iron supplement, she is back to her normal self, off of all psych meds and no longer in therapy.

    Sharing her story was a blessing to my family.

    For the past eight months two of my family members have been suffering from dementia-like symptoms and labeled with depression/anxiety.

    I suggested they have their ferritin levels checked and labwork just came back for one of them that their ferritin levels are 3 times higher than the normal range.

    Among the possible causes is hemochromatosis, a hereditary conditions considered a “silent killer”.

    It’s heartbreaking to know how much unnecessary suffering is caused by doctors who rely on quick assessments, rubber-stamp psychiatric labels and reach for a prescription pad before considering running even just routine bloodwork on their patients.

    On top of the physical/mental suffering and the stigma of being dx’d with a “mental illness”, there are the mounting financial costs that cause additional burdens to the patient and their family members.

    Ignoring underlying medical conditions and labeling individuals “mentally ill” is not a best practice standard of care. It is cruel and unacceptable. I am outraged every time I find out of a case like this.

    As a long-time mental health advocate, my goal is to advance a uniform advocacy agenda that promotes best practice standards of care.

    To support this goal, I maintain membership and support the mission of the International Society for Ethical Psychology and Psychiatry, engage in community volunteerism, send information to our lawmakers, have shared my own experiences through a narrative that was published in the Journal of Participatory Medicine and given presentations at local NAMI and CCHR events.

    Kind Regards,
    Maria

    • Thank you, Maria. A lot of MIA commenters get their backs up at the mention of “mental illness” unless you have quotation marks around it. I think acute emotional distress is more accurate; but hallucinating, delusional thoughts, depression, and manic fits make it hard to function in today’s world. These are atypical and problematic.

      Where I disagree with the psychiatric system is that there is any benefit to labeling the patient as permanently “bipolar” or “schizophrenic.” I also disagree with the long-term altering of the patient’s normal brain chemistry with drugs or surgical procedures. Until they know what a normal brain chemical balance is supposed to be and can figure out what the brain chemistry of each particular patient consists of they really should leave well enough alone!

      Dr, Pies has published an article saying the chemical imbalance theory was “only a metaphor.” I call it a lie.

      Metaphors are the domain of poets, not practitioners of medicine who want to be taken seriously as real scientists.