When Lyme Is Misdiagnosed As Mental Illnessa Road To Nowhere
Depression, anxiety, and other mental symptoms are frustratingly common in people with long-term Lyme disease. Why is this?
Some might attribute it to the fact that the patients life has gotten so tough lately. Pain, fatigue, insomnia and other gifts of Lyme disease can certainly contribute to a negative frame of mind.
However, an article in the latest issue of the journal Monitor on Psychology delves into the question of how tick-borne infection may directly cause mental disorders.
Reporter Charlotte Huff notes that researchers are still unraveling the precise mechanisms involved, but there is clearly an inflammatory connection.
She quotes psychiatrist Dr. Brian Fallon, head of Columbia Universitys Lyme and Tick-Borne Diseases Research Center:
Its definitely very well accepted to say that any infection that can cause an encephalitis, which means inflammation in the brain, can cause psychiatric disorders, Any infection can do that, and Borrelia can do it as well.
According to Huff, Fallon and others who treat these patients point out that their mental health symptoms can manifest in ways that may differ from individuals who havent contracted Lyme. Joseph Trunzo, PhD, says that one notable hallmark in Lyme patients is the duration and acuity of anxiety without any apparent underlying triggers.
Lyme Disease And Mental Disorders: Its Not All In Your Head
byMayla Hsu, Ph.D.on July 29, 2021
New Study Analyzes Patient Data
Mental disorders are among the most poorly understood symptoms of Lyme disease. Early on, it was recognized that Lyme disease in late stages includes neurologic symptoms like chronic pain and cognitive dysfunction. Psychiatric illnesses associated with Lyme disease, like depression, bipolar disorder, and suicide, have also been documented. However, these studies have had limitations, such as lacking proper control groups as comparisons, small study size, and short-term follow-up. These shortcomings may explain why mental illness, particularly the mood disorders, have not been broadly accepted as outcomes of Lyme disease. A perception persists that affected individuals are only a small proportion of Lyme disease patients.
Lyme Disease and Mental Health
They found that Lyme patients had elevated risk of any mental disorder and affective disorders, by calculating incident risk ratio the ratio of risk for Lyme-diagnosed people compared to those without Lyme. Using fully-adjusted data, the researchers found that a Lyme disease diagnosis overall increased the risk of any mental disorder by 28% compared to those without Lyme disease.
Suicide and Lyme Disease
Borrelia Infection and Psychiatric Disorders
Lyme Disease and Mental Disorders Merits Greater Study
The Role Of Coinfections
Ticks carry more diseases than just Lyme and TBRF, and its not uncommon for patients to be infected with more than one type of disease-causing bacteria.
Common coinfections such as Babesiosis and Bartonellosis can not only cause neurological and psychiatric symptoms of their own, but they can also complicate the diagnostic process, delaying proper diagnosis and treatment all of which increase the risk of developing emotional, behavioral, or cognitive problems from the infection.
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Neuropsychiatric Presentationsof Lyme Disease
Both adults and children can suffer from a broad range of neuropsychiatric manifestations due to tick-borne diseases. Theres particular concern, since studies have indicated that the Lyme bacterium, within weeks of infection, can disseminate to the Central Nervous System where it can remain dormant for months, even years before producing symptoms.
Children and Adolescents can suffer from a broad range of neuropsychiatric manifestations due to Lyme disease.
A study conducted in 2004 at Columbia Universitys Lyme and Tick-borne Disease Research Center found children with Lyme disease had substantial cognitive and psychiatric disturbances. And, cognitive impairments were still present after controlling for anxiety, depression and fatigue.
Neuropsychiatric symptoms may be the first symptom recognized or can surface months or years later. One study found Lyme encephalopathy in children presented with memory impairment, irritability and somnolence months to years after the initial classical presentation of Lyme disease. Another study found 4% of children with Lyme disease developed encephalopathy more than 10 years after onset of the disease.
In a well-designed controlled study investigating cognitive impairment in children havingalready received antibiotic therapy , a significant number continued to experience problems.
Get Tested And Treated Early
Studies acknowledge that up to 30% of patients go on to suffer further Lyme symptoms even after treatment, sometimes called Post-Treatment Lyme Disease Syndrome . One of the biggest risk factors for this condition is delayed treatment.
Research is finally, if slowly, catching up to the reality that letting Lyme disease slip through the cracks of insufficient diagnostic testing causes real suffering for patients. IGeneX is at the forefront of solving this problem, offering more sensitive and accurate testing for Lyme disease and other tick-borne diseases that can cause mental health problems when left untreated. Learn more today.
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New Treatments For Psychiatric Lyme Disease
We generally think of Lyme disease as an infection associated with rashes, fevers, and joint pain. If the infection goes untreated, however, it can attack the central nervous system over time and lead to several psychiatric symptoms like panic attacks, depression, and OCD.
As many doctors dont consider the role of chronic infections like Lyme disease in mental health conditions, these patients usually receive treatments that only address symptoms and give them partial relief. In this keynote presentation from the 2018 Mount Sinai Conference on Lyme Disease in the Era of Precision Medicine, Dr. Suruchi Chandra discusses a new framework for understanding and treating brain-related Lyme disease.
Controversy: Split Over Treatment For Persistent Symptoms
Medical groups continue to disagree about the optimal approach if a patients symptoms persist after the initial antibiotic treatment. A recent Lyme disease overview summarizes the differing guidelines .
- When patients have persistent or recurrent symptoms following recommended antibiotic treatment but no evidence of reinfection, further treatment is not recommended .
- While other potential causes for persistent symptoms should be investigated first, additional antibiotics are recommended if a chronic Lyme infection is believed to be a possible cause for ongoing symptoms and the patient has an impaired quality of life .
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Sudden Onset Of Symptoms
Statlender advises psychologists to look out for any sudden onset of symptoms. For instance, she notes that an adult patient may experience panic attacks or anxiety for the first time, or a high-achieving student may begin to struggle in school.
The underlying cause of the symptoms matters. If the root of the problem is an underlying infection, treatments that dont address the infection wont help.
Huff also spoke with Lorraine Johnson, CEO of LymeDisease.org and Principal Investigator of the MyLymeData patient registry. Johnson describes her own experience with having Lyme disease misdiagnosed as major depression.
If you are misdiagnosed with a psychiatric illness, you will be treated with psychotropic medications, and those are not without side effects, said Johnson. And they may lead you on a road to nowhere. Thats basically what happened to me for about five years.
Lyme’s Effect On The Brain
When Lyme disease affects the brain, it is frequently referred to as Lyme neuroborreliosis or Lyme encephalopathy. Neuroborreliosis is an infection within the brain that can mimic virtually any type of encephalopathy or psychiatric disorder and is often compared to neurosyphilis. Both are caused by spirochetes, are multi-systemic and can affect a patient neurologically, producing cognitive dysfunction and organic psychiatric illness .
The causative agent of Lyme disease, Borrelia burgdorferi, is a highly neurotropic organism that not only can produce neurologic disease, but also can exist dormant within the central nervous system for long periodseven months or years. It is an evolved pathogen that uses several strategies to survive in both human and animal hosts, including using a screw-like mechanism that allows the bacteria to embed in the cells membrane.
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How Lyme Progresses Neurologically
Lyme disease starts with the bite of a deer tick infected with the bacteria Borrelia burgdorferi. The infection gets into your bloodstream and is transported to all the places your blood flows. It finds different spots on the body to stop and hide. A favorite site is in the scar tissue surrounding joints.
They can also live in areas close to your spine. The longer they stay in that area, the more neurological symptoms can develop. Symptoms occur due to inflammation. But in the case of Lyme disease, the inflammation process is distorted mainly because Lyme bacteria are very good at hiding.
When Lyme bacteria is in your bloodstream, your body senses a foreign substance. It triggers your immune system to produce inflammation to find the bacteria and eliminate them quickly. Only Lyme bacteria are strong, stealthy, and often have biofilms protecting them from being seen. Your body doesnt stop searching for them, however. It never gives up. Usually, this would be a good thing. But with Lyme disease, that means your body is in a constant state of inflammation.
When your body is chronically inflamed, it can lead to debilitating symptoms and other diseases, including Lyme disease brain.
Research On Lyme Disease And Mental Health
Since the early 1990s, research has demonstrated a clear link between psychiatric conditions and Lyme disease, and continues to signify a connection. In 2002, Tomá Hájek, MD and colleagues found that 33 percent of screened psychiatric patients showed signs of an infection with the Lyme spirochete, Borrelia burgdorferi. Many mental health issues have been linked to tick-borne bacteria, including: depression, mood lability, bipolar disorder, irritability, anxiety, panic attacks, obsessive compulsive disorder, attention and executive functioning problems, memory issues, word finding difficulties and even psychosis.
A 2018 study by Shreya Doshi, MA and colleagues found that in patients with post-treatment Lyme symptoms, they had depression symptoms 8 to 45 percent of the time, and suicidal ideation was reported by 19.8 percent of these patients. In 2017, Dr. Rosalie Greenbergs study found that 89 percent of participants diagnosed with Pediatric Bipolar Disorder tested positive to one or more pathogens, including tick-borne Babesia, Bartonella and Lyme, as well as Mycoplasma pneumoniae.
Even with many research studies over decades that demonstrate a causal link between infectious disease and mental health, the average person sees between five and seven doctors before a diagnosis of Lyme disease.
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Signs And Symptoms Of Lyme Disease
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Lyme disease is an underreported, under-researched, and often debilitating disease transmitted by spirochete bacteria. The spiral-shaped bacteria, Borrelia burgdorferi, are transmitted by blacklegged deer ticks. Lymes wide range of symptoms mimic those of many other ailments, making it difficult to diagnose .
The blacklegged ticks can also transmit other disease-causing bacteria, viruses, and parasites. These are known as coinfections . These ticks that transmit Lyme are increasing their geographical spread. As of 2016, they were found in about half the counties in 43 of 50 states in the United States .
Lyme is the fifth most reported of notifiable diseases in the United States, with an estimated 329,000 new cases found annually . Some studies estimate that there are as many as 1 million cases of Lyme in the United States every year .
Most people with Lyme who are treated right away with three weeks of antibiotics have a good prognosis.
But if youre not treated for weeks, months, or even years after infection, Lyme becomes more difficult to treat. Within days of the bite, the bacteria can move to your central nervous system, muscles and joints, eyes, and heart .
Here is a list of 13 common signs and symptoms of Lyme disease.
Touched By Lyme: Treating Psychiatric Lyme Symptoms With Disulfiram
Kristina Bauer, a Lyme advocate, patient and mother of four children with congenital Lyme disease, is the founder of the Texas Lyme Alliance.
After she became interested in the use of disulfiram for treating Lyme disease, she started a Facebook support group called Disulfiram Experience for Lyme and a website called Disulfiram for Lyme.
The website features several video interviews with doctors and researchers about treating Lyme with disulfiram. In her latest one, she interviews psychiatrist Robert Bransfield MD, a leading expert on how Lyme disease affects the brainand how he has found that disulfiram can help.
Dr. Bransfield is an expert on Lyme-related suicide. While no formal statistics are kept on what contributes to the 45,000 suicides per year in the United States, he estimates that some 1200 are likely attributable to depression and other brain manifestations that can result from chronic Lyme disease.
For over 30 years, he has treated Lyme patients who have psychiatric symptoms. Since 2018, he has put more than 60 of them on disulfiram, with good results.
Watch the interview here:
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Lyme Disease Heightens Risk Of Mental Disorders Suicidality
A Columbia-led study advises physicians and patients be aware of psychiatric symptoms, particularly the first year after diagnosis
In a new study, U.S. and Danish researchers report that patients who received a hospital diagnosis of Lyme diseaseinpatient, outpatient, or at the ERhad a 28 percent higher rate of mental disorders and were twice as likely to have attempted suicide post-infection, compared to individuals without the diagnosis.
The study, a collaboration of Columbia University and the Copenhagen Research Centre for Mental Health, is believed to be the first large, population-based study examining the relationship between Lyme disease and psychiatric outcomes.
The research appears in the July 28 online edition of the American Journal of Psychiatry.
It is time to move beyond thinking of Lyme disease as a simple illness that only causes a rash, said Brian Fallon, MD, MPH, a psychiatrist with the New York State Psychiatric Institute and Columbia University who is the lead author of the paper. In addition to the risk of severe cardiac, rheumatologic, and neurologic problems, Lyme disease can cause severe mental health problems as well.
What Are Signs And Symptoms Of The Third Stage Of Lyme Disease
Late stage Lyme disease can result when treatment is unsuccessful or started too late due to unrecognized symptoms or misdiagnosis. The late disseminated stage occurs months or years after initial infection and can have a major impact on a patients health and quality of life. Late Lyme arthritis is a third stage Lyme disease manifestation that involves fluid accumulation and pain in joints, particularly in the knee joints. Late neurologic disease is a 3rd stage condition that can also be debilitating and difficult to diagnose. Late disseminated Lyme disease symptoms include a variety of symptoms that are often neurologic in origin including: numbness in extremities, mental fogginess and concentration problems, and difficulty following conversations or processing information.
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Lyme And Psychiatric Symptoms
- Lyme and Psychiatric Symptoms
Lyme has become a very common illness every state in the country has areas infested with ticks. Patients dealing with Lyme suffer neuro-psychiatric complications that are related directly to the illness, as well as to the emotional challenges and lack of support which often accompanies this difficult illness. Many doctors are convinced that after a short course of antibiotics patients should be well. The huge number of people still ill years after a course of antibiotics belie this assertion.
Patients with Lyme, and related tick-borne disease, can have symptoms which mimic every known psychiatric syndrome. Treatment aimed directly at symptoms can relieve suffering rather quickly. These symptoms include insomnia, anxiety, brain fog, obsessive-compulsive symptoms, depersonalization, depression, and rages. But antibiotics are needed to undermine the root cause of the illness: the bacteria that causes Lyme: Borrelia burgdorferi.
Lyme is so common, that at this point in time, a large percentage of my patients have the illness. Almost everybody knows someone with this illness. Its something we always have to keep in mind.
If you have Lyme, you deserve excellent treatment, no matter how briefly or how long you have been ill.
You deserve a Lyme-literate physician.
What Can Be Done About Neuropsychiatric Illness And Lyme Disease
When someone is suffering from a mood or psychiatric disorder and the person is also experiencing additional symptoms such as fatigue, headaches, joint pain, insomnia, and cognitive issues, an underlying cause such as an infection should be ruled out. Other clues that there may be an infectious cause to psychiatric symptoms include having an atypical presentation of the diagnosis and not responding to common medications used to treat the mood disorder. Also, is there a possibility the person could have been exposed to ticks or other known vectors? Anyone who spends time outdoors, either where they live or vacation, or has pets that are indoor/outdoor is at risk for exposure to ticks.
If a tick-borne infection is the cause of a mood disorder, addressing the infection can improve the mental symptoms. Those already on psychotropic medication may need to stay on the medication while the underlying cause are treated. Immune and detoxification support to reduce inflammation is also effective at improving mental health.
Taking a comprehensive approach to identify and treat any underlying causes of psychiatric illness, especially in those with a multi-systemic and multi-symptomatic presentation. There is increased hope and improved outcomes for those suffering from what is otherwise a life-long disorder. Lyme disease and other tick-borne infections are more common than previously recognized and have a high likelihood of contributing to neuropsychiatric conditions.
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Reach Out To A Loved One
Opening up about mental health requires you to be vulnerable, especially when speaking with a loved one. The benefit is that talking to a person you trust can lead to immediate and consistent help at no cost. Depending on the severity of your symptoms this person could help you get the care you need or just become a shoulder to lean on when things get tough.
A loved one could also help you make a list of contacts such as other trusted friends or family members. Make sure to let these people know in advance that they are on this list, so they can be prepared to rise to the occasion if necessary. In more severe situations, a list of crisis phone numbers, and local resources may be a good idea.