Scientific evidence for “Lyme Rage”
In light of the tragic shooting in Illinois, we’d like weigh in on the issue of whether the shooter’s case of late-stage Lyme disease could have caused violent behavior. First, during our four years of research for the film, UNDER OUR SKIN, we interviewed a number of patients who had bouts of “Lyme Rage” before appropriate treatment. While it doesn’t seem that common, it does seem possible. In addition, many of the physicians we interviewed, specifically the ones who treat a large number of Lyme patients, acknowledge that they have had patients with Lyme Rage. And finally, there are over 100 peer-reviewed medical journal articles linking tick-borne diseases to mental symptoms and quite a few that reference Lyme-induced rages. For your convenience, I’ve cited some of these articles at the bottom of this post.
In this morning’s press, the IDSA and CDC came out with guns blazing, denying the possibility of Lyme Rage.
Dr. Gary Wormser, the lead author of the controversial Infectious Disease Society of Americe (IDSA) Lyme guidelines, said, on WebMD:
“I don’t know of any convincing evidence that Lyme disease can cause violence or psychosis.”
Paul Mead, a medical epidemiologist with the CDC, said in an article by Roger Schlueter of the News-Democrat:
“So the spirochete certainly can, in the lab, attach to nerve cells, and it certainly causes acute inflammation of nervous tissue,” Mead said. “But whether that would cause psychiatric illness is, as far as I know, impossible to say.”
While I personally find their Lyme denialism baffling, I encourage those of you interested in the science to read the peer-reviewed journal articles listed below, and decide for yourself.
The News-Democrat also cites the Prague study, which says:
“In 2002, a study at the Prague Psychiatric Center involving 1,900 people found that people with psychiatric illness had about a 30 percent increased incidence of Lyme disease antibodies in their blood compared to other study participants.”
Isn’t it worth keeping our minds open to the emerging evidence that the Lyme bacteria — a neurologically invasive spirochete just like syphilis — could be the root cause of a myriad of psychiatric disorders that are currently considered incurable? How costly to our society and inhumane to medicate and lock up thousands of supposedly mentally ill people, when they may have a treatable bacterial infection.
Lyme-Induced Psychiatric Disorders
Peer-Reviewed Literature from Around the World
Lyme disease: a neuropsychiatric illness.
Fallon BA, Nields JA. Am J Psychiatry. 1994 Nov;151(11):1571-83.
“A broad range of psychiatric reactions have been associated with Lyme disease including paranoia, dementia, schizophrenia, bipolar disorder, panic attacks, major depression, anorexia nervosa, and obsessive-compulsive disorder.”
Late-stage neuropsychiatric Lyme borreliosis. Differential diagnosis and treatment.
Fallon BA, Schwartzberg M, Bransfield R, Zimmerman B, Scotti A, Weber CA, Liebowitz MR. Psychosomatics. 1995 May-Jun;36(3):295-300.
“Although dermatologic, articular, cardiac, ophthalmologic, and neurologic manifestations are well known, it is less well known that psychiatric disorders may also arise. Depression, panic attacks, schizophrenia-like psychotic state, bipolar disorder, and dementia have been attributed to Lyme borreliosis.”
Functional brain imaging and neuropsychological testing in Lyme disease.
Fallon BA, Das S, Plutchok JJ, Tager F, Liegner K, Van Heertum R.
Clin Infect Dis. 1997 Jul;25 Suppl 1:S57-63. Review.
“Patients with Lyme disease may experience short-term memory loss, severe depression, panic attacks, unrelenting anxiety, impulsivity, paranoia, obsessive compulsive disorder, personality changes marked by irritability and mood swings, and rarely, manic episodes or psychotic states.”
The underdiagnosis of neuropsychiatric Lyme disease in children and adults.
Fallon BA, Kochevar JM, Gaito A, Nields JA.
Psychiatr Clin North Am. 1998 Sep;21(3):693-703, viii.
“In addition to the disorders listed by Kohler and Omasitis, Lyme disease appears to be capable of causing syndromes that manifest as personality change, depersonalization, mania, hallucinations, (auditory, visual, and olfactory), paranoia, cataonia with stupor and mutism, somatization disorder, obsessive compulsive disorder, violent outbursts, panic attacks and disorientation.”
The neuropsychiatric manifestations of Lyme borreliosis.
Fallon BA, Nields JA, Burrascano JJ, Liegner K, DelBene D, Liebowitz MR.
Psychiatr Q. 1992 Spring;63(1):95-117. Review.
“Lyme disease is aptly called the “new great imitator,” and it can imitate psychiatric disorders no less than medical ones. Psychiatrists working in endemic areas are well advised, then, to keep Lyme disease in mind as part of their differential diagnosis for a broad range of disorders including, for instance, panic attacks, somatization disorder, depression, and dementia.”
A 25-year-old woman with hallucinations, hypersexuality, nightmares, and a rash.
Stein SL, Solvason HB, Biggart E, Spiegel D.
Am J Psychiatry. 1996 Apr;153(4):545-51.
“The [Lyme] patient expressed a delusional belief that she was controlled by an attractive popular male former high school teacher who had put a curse on her family before her birth and was now sexually obsessed with her.”
Germany: Neurologische Klinik mit Poliklinik, Universität Freiburg.
Lyme borreliosis in neurology and psychiatry
Kohler J. Fortschr Med. 1990 Apr 10;108(10):191-3, 197.
“Involvements of the CNS are expressed not so much in focal deficits, as in diffuse psychopathological disorders… The clinical symptomatology may be dominated by severe psychiatric syndromes.”
Czechoslovakia: Prague Psychiatric Center
T. Hajek: hajek@pcp.lf3.cuni.cz
Higher prevalence of antibodies to Borrelia burgdorferi in psychiatric patients than in healthy subjects.
Hájek T, Pasková B, Janovská D, Bahbouh R, Hájek P, Libiger J, Höschl C. Am J Psychiatry. 2002 Feb;159(2):297-301.
“These findings support the hypothesis that there is an association between Borrelia burgdorferi infection and psychiatric morbidity. In countries where this infection is endemic, a proportion of psychiatric inpatients may be suffering from neuropathogenic effects of Borrelia burgdorferi.”
Poland: Klinika Psychiatrii, Białymstoku.
Rudnik I, Konarzewska B, Zajkowska J, Juchnowicz D, Markowski T, Pancewicz SA.
Pol Merkur Lekarski. 2004 Apr;16(94):328-31.
“Mental state examinations and psychometric testing revealed in majority of the patients, mainly in those suffered from neuroborreliosis and erythrema migrans evidence of various psychiatric symptomatology. The range of psychiatric presentations included: mild cognitive deficits, organic mood disorders, mild dementias, depressive and anxiety episodes with non organic etiology.”
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An email we just received:
My brother has suffered for the past 5 years with the effects of CNS Lyme and all of the confusion that surrounds it. He had the rash, tested negative, a few months later developed facial palsy, tested positive, was treated…and retreated…and continues to be treated but the damage has been done. Mentally, he is not the same and I fear that he never will be. It is like trying to solve a medical puzzle that the medical community does not want you to help you solve!! I also have written to Oprah, Dr. Oz, and ABC news in hopes that they will do a show about all of the conflict that is associated with getting proper treatment. I felt such a tightness in my chest when I saw that the Illinois pastor shooter was a Lyme sufferer. I do not believe that most Lyme patients have the capabilities to murder, but, after seeing what if has done to my brother’s mental state and the lack of resources to get help, I can say that I was not shocked. Sadly, maybe this will bring some attention to what Lyme truly does to a person’s mental health.
I too am dealing with a relative who has neuro-psychiatric Lyme. My beautiful 24 year old son was dxd with Lyme at age 13, and again at age 14 with Lyme (swollen knees), treated both times with 30 days of abx. At 15 he started having tonic clonic (grand mal) seizures. We were told it was epilepsy and no one ever made the connection with Lyme. By the time he was 20, he had gone from an artistic, articulate, affectionate,athletic, funny, good student with a lot of friends to an overweight hermit, spending most of his time in his room, listening to rap music and communicating in monosyllables. He started hearing voices when he was 20. At 21 he had an episode where he was almost catatonic. During the next 7 mos., he had Elyssa and Western Blot tests done at 3 major LI hospitals. He was CDC positive on all of the tests, yet we were told that he did not have Lyme. He had a spinal tap done a well-known teaching hospital which was also CDC positve—still “no lyme”. He had started to attack family members by this time! These episodes would usually roll right into a tonic clonic seizure after which he was extremely remorseful and apologetic.
He has been on abx and psychotropic drugs for 2 years now and the only time the violence has returned was when we tried to transfer him from abx to an herbal protocol. Because of the continuing seizures and fatigue, he is still unable to work or go to school, but we are hopeful that as treatment continues he will get some semblance of a life back again
My prayers are with the shooter and his family, whose lives have been ruined by this disease. We have to get the word out there that while these are not the common symptoms of Lyme, left untreated it can come to this! Many thanks to Kris Newby and all the folks at Open Eye Pictures for all your hard work!
When are Doctors going to realize that this is a major epidemic! I have been told there are no tics in TX by my medical doctor. I have lived in more than 30 places before moving here only to be told this!
Our daughter is totally incapacitated and unable to work. Our medical system is reviewing whether to help her (6 months) or let her loose everything.
Wake up!
I was diagnosed with psychosis, before doctors in Germany and Belgium, diagnosed me with neurological late stage lyme decease. Blood test have showned a weakly positive result of antibodies (western blot) on p30, p41, p20 and Ospc. I have been bitten by ticks around 20-30 times, where we spend our summer holidays in our house on a island.
I can imagine that a chronic inflammation in the brain, because of for example lyme decease, can in some people lead to different kinds of violent behaviour.
My symtom are eg that I find it hard to experience distances in space (3-demensions)- so the surrounding is a bit as a paiting to me. My whole body is numb, and I feel as if I am floating, or that I am sinking through the ground. I also find it hard to imagine how object look on the sides that I can not see, eg the back side of a coffe cup. I am also very dizzy.
please, let doctors take lyme decease seriously.
First of all, I have to ask the question–How many late stage neuro-lyme patients has Dr. Wormser actually successfully resolved? The man should be in jail and not posting on any respected medical websites.
Second of all, lyme rage and psychosis are definitely a possibility. I had myself hospitalized several times because I thought I was either becoming schizoprenic or had a brain tumor, etc. My experience was so traumatizing I have blocked most of it out. My psychologist wants me to write a book about it, but its too painful to even think about. Maybe down the road when my youngest child is older.
Funny thing is, I obtained Social Security disability based upon my myriad of neurological symptoms well before finally being properly diagnosed with Lyme. I wonder had I been diagnosed if I would have qualified.
I am positive that the lyme disease had something to do with this young man’s crime, and maybe was triggered by psychiatric meds that weren’t doing what they were supposed too.
Thank god for Daniel Cameron of Mt. Kisko, NY and my local lyme treating physician for saving my life and my mental status. I would love to go toe to toe in a debate with so-called “Dr.” Wormser. How terrible it must be to live in such a web of lies and fraud.
My thoughts and prayers to everyone involved in this tragedy–you are all victims.
Angela
Lyme-Induced Psychiatric Disorders
Peer-Reviewed Literature from Around the World
Arthritis Rheum. 2008 Dec 15;59(12):1742-9. Links
Role of psychiatric comorbidity in chronic Lyme disease.
Hassett AL, Radvanski DC, Buyske S, Savage SV, Gara M, Escobar JI, Sigal LH.
OBJECTIVE: To evaluate the prevalence and role of psychiatric comorbidity and other psychological factors in patients with chronic Lyme disease (CLD).
METHODS: We assessed 159 patients drawn from a cohort of 240 patients evaluated at an academic Lyme disease referral center. Patients were screened for common axis I psychiatric disorders (e.g., depressive and anxiety disorders); structured clinical interviews confirmed diagnoses. Axis II personality disorders, functional status, and traits like negative and positive affect and pain catastrophizing were also evaluated. A physician blind to psychiatric assessment results performed a medical evaluation. Two groups of CLD patients (those with post-Lyme disease syndrome and those with medically unexplained symptoms attributed to Lyme disease but without Borrelia burgdorferi infection) were compared with 2 groups of patients without CLD (patients recovered from Lyme disease and those with an identifiable medical condition explaining symptoms attributed to Lyme disease).
RESULTS: After adjusting for age and sex, axis I psychiatric disorders were more common in CLD patients than in comparison patients (P = 0.02, odds ratio 2.64, 95% confidence interval 1.30-5.35), but personality disorders were not. Patients with CLD had higher negative affect, lower positive affect, and a greater tendency to catastrophize pain (P < 0.001) than comparison patients. All psychological factors except personality disorders were related to level of functioning. A predictive model based on these psychological variables was confirmed. Fibromyalgia was diagnosed in 46.8% of CLD patients.
CONCLUSION: Psychiatric comorbidity and other psychological factors distinguished CLD patients from other patients commonly seen in Lyme disease referral centers, and were related to poor functional outcomes.
Most of your examples are from Fallon and not many people believe his studies. He should have stuck with hypochondria.
Anyway, how do you know any of the patients in your examples actually had Lyme. After all, Lymees claim the standard ELISA and WB assays are wrong half the time. And can’t the mentally ill become mentally ill without first contracting Lyme? More often than not, it’s likely to be a case of which came first, the nut or the Lyme.
I finally had to leave my wife of 25 years after her rage became frequent and uncontrollable, after she stopped long-term lyme treatment, and refused to go back on. There is no doubt in my mind that lyme may be a factor in this shooting.
No one can ever comprehend the scope of damage and suffering that industry-driven entities like IDSA and ALDF are wreaking on our population by dismissing this disease. Kudos to UOS for helping to break these criminals’ grip on all of us.
Keep pushing, everyone!
While a Dementor Troll is pacing the floor at two in the morning in Maryland wondering which came first-the Lyme or the nut-the rest of us can sleep peacefully with the knowledge that we all know who comes last-an under worked but overpaid and on the public dole would be NIH Internet Troll. Ponder on sweet prince-we all wish you would go the way of Hamlet.
Thank-you anon (hv808ct) for joining the discussion on neuropsychiatric Lyme.
Open Eye Pictures would like to weigh in on some of your comments above.
hv808ct: “Most of your examples are from Fallon and not many people believe his studies. He should have stuck with hypochondria.”
Open Eye: While many of your friends may not appreciate Dr. Brian Fallon’s research, the distinguished peer-reviewers of the American Journal of Psychiatry, Psychosomatics, Psychiatr Clin North Am., Clinical Infectious Diseases, and Psychiatr Q. think it has merit.
hv808ct: “Anyway, how do you know any of the patients in your examples actually had Lyme. After all, Lymees claim the standard ELISA and WB assays are wrong half the time. And can’t the mentally ill become mentally ill without first contracting Lyme? More often than not, it’s likely to be a case of which came first, the nut or the Lyme.”
Open Eye: Given that Dr. Fallon was a leading authority on hypochondria before he started testing for Lyme disease; and he uses a meticulous screening process, using multiple objective measures, before admitting subjects into his trials; I would trust his judgement on whether someone has LD or not. He has an excellent slideshow on his study selection process, which I’m sure he’d share if you emailed his assistant at Columbia.
COLUMBIA UNIVERSITY
Brian Fallon, M.D., M.P.H., M.Ed.
Director, Lyme Disease Research Program
http://www.columbia-lyme.org/
My whole family of 6 has been affected by Lyme Disease. My son, now 18 has been out of high school for over 2 years and has just returned after years of treatment, with years to go. My husband, myself and my 26 year old son are also under treatment. My other children need to be check because they are showing symptoms as well.
As far as rage with Lyme, that is true, My daughter was raped by her best friend several years ago. She could not understand why he turned on her. He was having severe anxiety problems and then he turned on her. She could not understand why, until we found out that he had been in and out of psych wards, and had been diagnosed with Lyme Disease.
So while my daughter may not have Lyme Disease, it also destroyed her life.
This disease IS a brain disease-so any and all brain related dis-functions/diseases can and will happen when lyme is at play. I know, I have had lyme for 25+ yrs and was severely annorexic, depressed, even suicidal for years before I got the correct diagnosis of lyme, bartonella, etc.
I too can attest to lyme rage..and have seen it in most of my lyme friends too. I think it’s more of the norm than not. I just believe that the stigma of having this problem keeps patients from talking about it and family too. But it is very real and often times will happen all through treatment, during “herxing”, and until the body burden of bartonella, lyme, mercury is lessened in the body.
I was originally disheartened by UOS that you did not show anyone with severe mental illness from lyme in the movie…I think it’s the missing link to MOST if not all mental illness going on. It’s so sad… But thank you now for opening the discussion. I often wonder if we tested inmates in just one jail, if we would find a large number of lyme/bartonella infected individuals.
Thank you for your continued help for and within the lyme community!!
the symptoms associated with “lyme rage” are common symptoms for people with brain injuries.
our entire family has lyme disease. many of the cognitive difficulties my “lyme family” experiences are very similar to the symptoms people with head injuries experience.
in a way, having lyme disease is much like having a brain injury. the brain is just “ailing” rather than having an injury, or maybe there is injury to the brain in some cases.
i’d like to re-state that last paragraph for clarity…someone was talking to me while i typed it and now it doesn’t say exactly what i was trying to say.
restated:
living with lyme disease is like living with a brain injury in many ways. in lyme disease, the brain is just “ailing” or oxygen deprived; in head injuries, there is damage to the brain tissue. Perhaps in extreme cases of lyme disease, the disease may even actually “injure” the brain tissue.
http://www.ilads.org/PsychiatristBrochure.pdf
I was diagnosed with late stage lyme disease about a year ago from a naturopathic doctor. They treated me and it indicated that I was clear. I still have the symptoms and am unclear still as to whether or not I still have it. I am off work repeatedly due to chronic disorders with my body and have been prescribed doxipin due to mental/emotional problems which affect my skin, etc. Any information is always appreciated! Thank you!
I had such chronic arithritis from Lymes diease that I had to walk with a cane – I also had severe insomenia, which made me not able to think straight from lack of sleep, along with headaches & parkinson’s like symptoms.
Thank God I found Dr S, an LLMD who had helped me tremendously – Through testing he found I have Lyme Disease, Erlichia, Babesia & Bartonella.
Since treatment beginning in 10/08 the cane is gone, about 1/2 the arithritis pain is gone & I now sleep at night & think much straighter and my parkinson’s like symptoms are almost gone. I have a long road of treatment ahead of me but I AM improving tremendously.
The movie Under Our Skin has opened so may eyes to this disease & I thank them.
sharon, i am not a doctor, but from one lyme patient to another, i would say to you that lyme disease i very stealthy and doesn’t show up on many tests…so any indication that it is gone is not only unlikely but could also be a false indication.
if i were you, i would get to a lyme literate m.d. for evaluation.
i ascribe to natural methods of healing, but i believe, based on years of experience, beating lyme requires a mix of both. there are very many physicians who use combinations of traditional medicine and other healing arts. they may be in another town or another state, but with lyme disease, it is worth whatever it takes to control it.
lyme disease, once established, does not go away easily.
i suggest a good LLMD for a second opinion at the very least.
good luck with your fight! i am sorry you have this and my heart goes out to you! God bless!
As far as lyme in the brain, I have a scan that shows where lyme was affecting my brain, functionally. The big problem is that many drugs used to treat lyme do not pass the blood brain barrier. Thankfully I found a doctor who understood this, and helped me beat the disease. Definitely it affects thinking and behavior, as I experienced suicidal thoughts and dyslexia, as well as problems with sight.
Patti, I have neuro lyme and have lived with these rages as well as other brain issues. what drugs did you get treated with that were able to cross blood brain barrier, my Dr always willing to listen to new treatments
I am always glad to see that progress is being made on any part of the Lyme front, but I have mixed feelings about these neuro findings. For example: To date, I’ve lost over $100,000 of my own money (from the sale of my house) to Lyme: Money spent on attempts to get diagnosed (even after I went to the ER with a tick that had been embedded in my ankle for 4 days)- lost work time, inability to support myself singlehandedly in a high cost of living area/too ill to move to a cheaper area/family&friends not realizing how ill I was and that I desperately needed help — a dynamic which had the effect of leaving me with almost no support system, deeply in debt and very, very ill. (Fortunately or unfortunately, depending on your viewpoint, no matter how bad it got, I still appeared sane enough to manage on my own, although my quality of life got so bad that at times, I wished suicide was an option.) I did maintain good credit and have avoided filing bankruptcy, because this is the only means by which I can pay for my LLMD. I have painstakingly (literally) begun piecing my life back together, “bailing with a teaspoon,” as it were. My recovery has been hampered from the get-go by a “must bust my butt working to repay debt” vs. “must rest to recover” conundrum. This, along with much of the other Lyme fallout (the list is long…lost years of my life; lost friends; lost health…..), often leaves me angry, depressed, despairing, and anxious. It may well take the rest of my life to pay off this debt, even while shortening my life with overwork and lack of rest. My current life consists of: Working to pay off the Lyme debt. Collapsing because I’m working too hard. Not a lot else. You bet I’m angry and depressed. Are these feelings “just Lyme neuro manifestations?” Aren’t many of these feelings NORMAL reactions to a horrific chain of events and unrelenting extreme stress? I concede that I do exhibit “Lyme PTSD” — but a great deal of this has been circumstantial. I am concerned that these neuro findings will get twisted around somehow to further discredit those of us who are fighting for our lives against huge odds. (Odds which might push the sanest person over the edge.) I do hope that this angle will get a bit more airtime. My story is far from rare. Who would not be depressed, anxious, angry, etc, at seeing this kind of wreckage to what was once a very full, productive life? Grrrr! (Just another Lyme rage attack, I suppose.)
There are times before my period that I become a totally different person. Its not your typical PMS, its soooo much worse. Like 1000 times worse. I understand Lyme Rage. I feel like many times, not all, I am supressing this rage. I feel like there are times, and there have been in the past, where I want to scream at the top of my lungs at or to someone, which is why I suprress it. The spirochetes do a lot of damage. I eradicate them.
I have no doubt that people who suffer from lymes disease have a hard time.The issue I have with one of my family members who “has” it, is that, she talks about it NON STOP!!! And to anyone she comes in contact with, even complete strangers. I would guess that this is the issue with the people who dont have it. Its not that we dont believe the patient has it, its that we are sick of hearing about it over and over. I have personally had health problems, but I dont relay them to complete strangers on the street. I also realize that when someones says “how are you?” they dont mean it literally, and they dont want my medical history. I have no doubt that lymes disease is real, and I hope they find some sort of cure and/or preventative measures.
I am actually afraid my husband may be suffering from this. I was diagnosed with Lyme and over the past 5 to 7 years he has become a more angry person so that I can only describe it as rage rather than anger. He has communication problems in that you can say something very clearly but he will misunderstand what you have said and become extremely defensive. It would be easy to think that it was me except that when we converse with others in a group they understand what I’m saying and often have to explain to him what I meant. I am also CDC positive, but my Lyme has made me much more calm for some odd reason. I seem to be experiencing the apathy. I should say he has not yet been tested for Lyme but because there is so much uncertainty to whether this disease can be transmitted to a spouse, it would not surprise me if he has it.
He is testing soon, so we will see. If not, then maybe it’s the stress of being married to someone with Lyme disease.
Interesting comments. It’s easy to see a connection between Lyme and Syphilis spirochetal brain involvement. But still wondering if the brain lesions/”Lyme rage” might otherwise be caused by drugs crossing the blood brain barrier (antibiotic induced lupus). Tetracyclines have been known to cause this since the 1950’s. And with so much out there crossing the blood brain barrier (MSG, anti-histamines, anti-depression drugs, anti-psychotics, etc., [even Taurine in energy drinks]), it could be a matter of sending neuro-toxins deep into the brain where they don’t belong thereby causing over-excitability of neuro-transmitters/inflammation/lesions/vertigo/seizures/rage.
Just someone diagnosed with Lyme in 2002 making a hypothesis. Can anyone affirm that or disprove it? Thanks….
Interesting theory. I don’t know the answer. I do think the energy drinks are bad news, and it’ll be a matter of time before they’re regulated.
Lately I have had less and less patience at work and find myself having “meltdowns”. Today I realized that I was over reacting and felt very confused. I am apparently losing the ability to put things in perspective. I am afraid I will end up being fired since I can’t seem to control these episodes. It is now clear to me that these overwhelming rushes of negative emotions are one of the symptoms of Lyme Disease.