Reprinted and edited from a 2009 newsletter
Psychoses, hallucinations, dementia, delusions, paranoia, rage, aggression, suicidal thinking, anxiety attacks, ADD, ADHD, OCD are words that would make any patient, physician, family member or researcher recoil when reading about the possibility that Lyme disease can cause one or more of these or other psychiatric issues. Anecdotally speaking, psychiatric issues, and in particular those connected with tick-borne infectious diseases, are something that is rarely, if ever, discussed. The topic has been largely overlooked until the recent mainstream media coverage of a Lyme-suffering chimpanzee named Travis that attacked its Connecticut owner and a friend. This startling story was quickly followed up by a March 9, 2009 human tragedy where an Edwardsville, Illinois man went on a shooting spree, killing a southern Illinois pastor during Sunday services.
The firestorm of debate over whether Lyme disease could be responsible for psychiatric issues including homicide quickly ensued. One Yahoo news release indicated that according to Yale University Lyme disease specialist Dr. Eugene Shapiro, the disease does not cause someone to commit this kind of an attack. But in reading that statement, the first question that came to my mind as a Lyme patient, was “where is the scientific data to suggest that it does not cause this kind of behavior?” As I said in my book on Lyme disease, The Baker’s Dozen & the Lunatic Fringe: Has Junk Science Shifted the Lyme Disease Paradigm? (Amazon.com) “An absence of proof is not proof of absence.”
Over a few days, I performed a short review of an assortment of peer-reviewed articles, abstracts, and several published resource books lying on my shelf; all pertaining to neuropathies, psychiatric issues, and Lyme disease. While many publications referred to psychiatric manifestations of Lyme disease, the common theme in most of them was that Borrelia burgdorferi, the spirochete that causes Lyme disease (a close relative of Syphilis), does cause psychiatric problems such as mood disorders, paranoia, depression, OCD, ADD, ADHD, hallucinations, cognitive problems, and at times, dementia. Typically however, these “syndromes” were described by academic publishers as “mild”. That description certainly felt curious, if not dismissive, to me.
The first book I wrote in my It’s All In Your Head series on Lyme disease (Patient Stories From the Front Lines), revealed stories about neuropsychiatric Lyme disease. When I was researching patient stories for use in the second book in the series (Around the World in 80 Lyme Patient Stories), one of the most common symptoms reported by Lyme patients and their families was a symptom called “Lyme rage”. Indeed, the book series, which was released in January 2008, is dedicated to two patients who took their own lives specifically as a consequence of having Lyme disease. There have been reports that Lyme rage is “uncommon” or that it is an “atypical” presentation of Lyme-induced brain infection. What I found, which is not yet backed by clinical trials or lengthy scientific studies, is that most Lyme patients who have had the illness for several months to many years have experienced at least one episode of Lyme rage, if not many more frequently in number.
To describe the sudden emergence of this overwhelming rage is to say it is similar to turning on a light switch. Just as quickly as it manifests, it ceases entirely to exist. The sudden flare-up and intensity of this bizarre brain dysfunction can be described as a kind of seizure or malfunction (having experienced these myself). The triggers of Lyme rage are very small, and can be anything that feels irritating to the sufferer. The incidents can be as simple as a verbal attack against a party, or more aggressive, physical contact-sport like activities such as throwing objects, hitting, kicking, or punching inanimate objects like walls or furniture. It can even encompass road rage or physical abuse, according to some patients (fortunately, not in me).
In those moments where the control center of a Lyme-infected brain ceases to function and momentarily “stop” untoward behavior from happening, the patient is often barely aware of the intensity of their aggression, let alone able to control it meaningfully. It is within this moment that I and many others have found ourselves caught by the Lyme bug. For myself, it has been one symptom that required due diligence to control when I was at my sickest, which was years ago. The best method of avoidance is to avoid even minor irritations, and certainly any stressful situations or individuals. A Lyme patient can become quickly overwhelmed and this can lead to episodes of unintentional rage. Patients describe the episodes as “coming from out of left field.”
Another aspect of brain infection is that at times the patient is aware of their own activities, but for some reason they feel like an unwitting participant, as if observing their own activity with complete apathy or indifference. I’ll call this “Lyme-induced indifference”, or LII, just to provide a label. Just for the record, there is no history of mental illness in my family, despite the best efforts on three occasions over years for an ex-husband through psychiatric and other experts to accuse and attempt to determine whether or not I had mental illness through rigorous and extensive psychiatric testing. Fortunately, I was always declared quite sane, so I cannot be accused of having previous or existing mental illness.
Despite those declarations, an example of LII came about years ago when I was feeling particularly irritable (Lyme causes brain inflammation with intense headaches – think PMS x 1,000). I was about to eat an apple and decided to cut it into slices. I opened the cutlery drawer and removed a new Ginsu® knife. Wondering if it was as sharp as it was advertised to be, without pausing for a moment to think about the consequences of the action, I drew the knife across my left arm, three times in quick succession. Mind you, under normal circumstances, no person would do such a thing. But on that day, under those conditions and with severe brain inflammation, my startling and unanticipated behavior left no other explanation except that I was aware of what I was doing physically, but the filter in my brain that normally says “that’s probably a bad idea” was momentarily and entirely absent, only to return immediately upon completion of the behavior, shaking me back to reality. Some might call this a momentary lapse of reason.
Good fortune was on my side as I had not put much pressure upon the knife, and so the cuts were reduced to deep scratches. They could have been far worse. The incident frightened and embarrassed me. “What is wrong with me?” is a question many Lyme patients ask themselves on a nearly daily basis and, that day, I was first in line. Both of my children, who have documented positive exposure to Borrelia burgdorferi, have experienced episodes of Lyme rage and depression.
I tell you these episodes because I never shared this with a physician in a clinical setting for fear of myself or my children being labeled “crazy” – a term which does not describe us on any given day. And I am willing to bet that most patients don’t share their more intimate, dysfunctional details with members of the medical profession, either. Naturally, we worry that our doctor may jump to a conclusion that a patient exhibiting this kind of behavior is “depressed”, or worse, certifiable. Further, I know of a few Lyme patients who have thought of killing themselves, spoken openly about it, and tragically a few who have been successful at it. Were those patients “crazy?” My guess is no, or only momentarily due to brain inflammation. Family members can attest that “this kind of behavior” never occurred in their loved one before tick-borne infection. Were they likely suffering from severe brain inflammation and/or chemical imbalance due to infection, neurotoxins or other effects of Lyme on the sensitive brain and nervous system? You bet.
When the inflamed brain or central nervous system (CNS) is in the middle of an attack of meningitis or encephalitis, the pain can be intractable, and even “standard” pain medications can have no effect. This kind of pain, when endured over a period of time, can certainly make someone feel “crazy” – crazy out of their mind with pain; especially when there is no relief, or worse, no credence from doctors, scientists, or family members. And I contend that these people are not the minority of chronically infected Lyme patients. Read the stories in books 1 and 2 of my series, and see how common these symptoms are in Lyme patients all over the world. Various symptoms of brain dysfunction occur all too frequently within the population, whether those patients are diagnosed with tick-borne illness or not. Similar types of dysfunction have been documented to occur due to Syphilis infections, a close spirochetal cousin of borrelia. Secondary, or co-infections by other organisms such as bartonella, babesia, or mycoplasma that occur in the body or are introduced at the time of Lyme infection through tick or other insect bite or transmission route, can magnify existing or cause new psychiatric symptoms on their own.
Unfortunately, medical science has not kept pace with emerging infections, as I outlined in my book The Baker’s Dozen. Evidence reveals: “…direct patient experience is rapidly overruling clinical research, and one reason why infectious disease doctors and treating physicians need to listen to the patients, the voices of those doing the practical ‘field work.’ Academicians and physicians, your ‘anecdotes’ have a lot to teach you, and we are asking for you to listen.”1 Nevertheless, academic scientists are the first to point the finger at patients, and disassociate Lyme disease as a cause for “socially unpalatable” symptoms, the existence of which these scientists appear to be at least peripherally, if not openly, aware.
An interesting comment from an Infectious Disease Society of America (IDSA) clinical practice guidelines author Dr. Steere and his associates, had this to say about whether patients were inventing their symptoms. From a 1992 peer-reviewed article in Neurology, Lyme encephalopathy was recognized as a common late manifestation in patients who were affected by sleep, mood or memory. The conclusion of this study was a hypothesis that “…Lyme encephalopathy is caused by CNS dysfunction and cannot be explained as a psychological response to chronic illness.”2
Another article referred to “chronic” Lyme disease and indicated that two of the three stages of Lyme “potentially” involve the CNS; stage 2 causes cranial neuritis, meningitis or radiculoneuritis. The third stage was referred to as “chronic neuroborreliosis”, and it included parenchymal involvement (the functional part of an organ, including the brain). The article said that in the infection’s tertiary stage, symptoms could mimic many illnesses such as MS, viral encephalitis, brain tumors, vasculitis, viral encephalitis, myelopathy, and psychiatric illness.3
In The Baker’s Dozen book under a chapter titled A Restrictive Approach to Treatment, I discuss research evidence that reveals there may indeed be a causative link between infectious diseases and psychiatric manifestations. Quoted from a patent we read the following: “…Behavioral symptoms have previously been associated with certain infectious diseases. Specific examples of bacteria that may cause psychological symptoms are the causative agents of syphilis… and… Lyme disease, Borrelia burgdorferi…. The association of certain gastrointestinal illnesses with neurological and psychological symptoms is also recognized, as in d-lactic acidosis…. In spite of the recognized association between bacteria and neurological and psychological symptoms in certain conditions, the possibility that the vast majority of mental illnesses [sic] symptoms are caused by a bacterial infection of the intestinal tract is a paradigm shift.”1,4
Strong words to be sure, and a point of view for physicians and researchers to consider carefully.
Later on in the text of this same patent we learn the following: “The pathogenic proliferation of microbes in the gut can at least partially cause deleterious mental symptoms and syndromes of many disorders, including at least some forms of Attention Deficit/Hyperactivity Disorder (ADHD), Autistic Disorder, Childhood Disintegrative Disorder, Conduct Disorder, Oppositional Defiant Disorder, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), Anxiety Disorder, Mood Disorders including Major Depressive Disorders, Bipolar Disorder (I and II), Psychotic Disorders including Shizophreniform, Schizoaffective Disorder, Schizophrenia (all types), and Psychotic Disorder Not Otherwise Specified. The common etiology of these mental symptoms and syndromes makes possible a common therapeutic and preventative concept, embodied in the present invention.”4
Lyme patients have long had to endure claims by a handful of scientists who are considered experts in infectious diseases that Lyme symptoms are perhaps not as severe as patients are reporting. Nevertheless, my book The Baker’s Dozen is packed full of research that illustrates that Lyme disease spirochetal infections persist within the human body, even after antibiotic treatment. Further, that these infections require longer antibiotic treatments than what current IDSA guidelines recommend. And the acknowledgement by some of the IDSA guidelines authors and their associates in earlier published research, grants and patents, of the chronic, persistent and potentially severe or deadly nature of Lyme disease, along with its myriad of manifestations, is explored extensively within my book. I also examine the potential conflicts of interest, and other affiliations and relationships of many individuals who are quick within the media, and perhaps within medical guidelines to discount Lyme patients, and their symptoms; psychiatric or otherwise.
One statement made during a physician continuing education video course that I cited within my book was made by IDSA 2000 guidelines author Dr. Benjamin Luft, where he said with regard to antibiotic treatment of Lyme disease, “Duration of therapy is based on the severity of infection and the patient’s response to treatment.”1
This does not seem to reflect current guidelines recommendations on treatment duration. Indeed, in another resource, under a heading titled Late infection, stage 3 (persistent infection), we find that “two to three years after infection” is when patient symptoms become more noticeable. “CNS symptoms may be quite variable…” The book describes that this is determined by location of lesions and whether or not there appear symptoms such as “…chronic progressive encephalomyelitis, cerebellitis, spastic paraparesis, ataxia, transverse myelopathy, cranial nerve palsies, and mental disturbances.” Last, the publication indicates that the organisms “…may persist in the CNS despite antibiotic therapy.”5
As I stated previously, it says that treatment is dependent upon stage, and localization. The text says that treatment failure “is possible, and resumption of therapy may become necessary. The duration depends on the disappearance of symptoms.”5 Again, I have not found these same sentiments within the 2006 IDSA guidelines for Lyme disease, a document that insurance companies are quick to cite in order to deny benefit coverage for Lyme patients.
Deciphering the truth about a rapidly emerging epidemic such as Lyme disease may be difficult, especially when the dissemination of scientific information appears to lag far behind the clinical experience. In addition, patients and their physicians must question the validity of claims made by a handful of infectious disease experts and their associates when we look closely at the available research evidence. At times, the current experts appear to contradict their own published research and spout conjecture rather than scientific fact. When the information supplied to the media does not reconcile with their own research or the patient experience, then something is amiss.
Indeed, science-based medicine is useful in many ways to test validity of hypotheses, but what happens when this kind of analysis is outpaced by the infections present within the general population? The patients whom these experts are not privileged to see within a clinical practice setting are revealing a very different experience than the scientific one currently promoted.
And what happens to patients if the same experts who dictate current information to the media, to the Centers for Disease Control (CDC), or through clinical practice guidelines that might dismiss various aspects of an illness, are motivated by private or federal research funding acquisitions, societal agendas, patent interests, or other potential conflicts of interest – including when they act as paid consultants to the insurance, legal, or pharmaceutical industries? These very questions are explored throughout the book The Baker’s Dozen, and the information compiled there may surprise everyone. For example, in the 2006 IDSA guidelines for Lyme disease, the antibiotic doxycycline is promoted as a useful treatment for Lyme infections but is contraindicated for prophylactic treatment encompassing the first 72 hours of tick exposure.
However, in my book I printed a statement from a grant issued to Dr. Gary Wormser that states the following comment that appears to refute the guidelines statement about doxycycline’s usefulness, and underscores the importance of its implementation in prophylactic treatment: “…the medication must be obtained within 72 hours of tick removal for the treatment to be effective.”6
I don’t know about you, but as a Lyme sufferer who had to wait nearly 13 years before a physician was willing to provide my family with an accurate diagnosis of Lyme disease, due in part to physician ignorance or the inaccessibility of practical scientific information my physician could use in a real-time clinical setting, I can’t afford to wait out the debate. Imagine waiting more than a decade to obtain life-saving, necessary treatment due to not being diagnosed with an illness I knew we had at onset, which could have easily been treated and halted at tick exposure.
Something about the IDSA guidelines, the dismissive-sounding statements being broadcast to the media and the entire Lyme disease paradigm, appears highly suspect to me. Might I recommend you run, do not walk, to get a copy of my book, The Baker’s Dozen & the Lunatic Fringe: Has Junk Science Shifted the Lyme Disease Paradigm?
Because it is only when we closely examine the published research by this handful of highly respected, powerful individuals who apparently hold the purse-strings of information censorship, will we find exactly who, or what, may be keeping Lyme patients ill and their physicians’ hands tied. And like that which I saw my own child post on the Internet over two years – warnings of potentially homicidal or suicidal intentions– and having learned of suicides that friends have successfully and tragically achieved, I don’t need a scientific finding nor an infectious disease expert to tell me that Lyme disease can cause psychiatric behaviors as severe as a shooting incident. I’m the mother of a child who could very well have had that potential just a few short years ago. I absolutely believe it is possible, despite the absence of scientific “evidence.”
Please contact the author if you need a list of the references from this archive.