When you think of Lyme Disease, you might picture its most well-known symptoms, like the bulls-eye rash, fever, joint pain, and fatigue. But Lyme can actually have many other symptoms, including psychological ones, especially if it becomes chronic. The psychological symptoms of Lyme, like its other symptoms, vary from patient to patient, but there are several recurring patterns.
People with Lyme, especially chronic Lyme, often deal with gaslighting from doctors who say the root of their symptoms is psychological. When they do experience psychological issues, some use this as further "proof" that anxiety or depression is causing their symptoms. However, Lyme, like may illnesses, often works the other way around: It's the physical health issues that cause the psychological ones.
"Mental health is moving in a direction where we know that we can't separate our physical health from our mental health," Ruschelle Khanna, LCSW, a psychotherapist who specializes in counseling people with Lyme Disease and operates her practice part-time out of the NYC medical coworking space LINA, tells Bustle. "Chronic infections are a root of many psychological problems. There's research that infections can cause schizophrenia. There's plenty of evidence that physical problems can impact our mental health."
Kristin Reihman, MD, family medicine doctor and author of Life After Lyme, agrees. "New onset of psychiatric symptoms in a previously well person is a really good reason to start looking for tick-borne disease," she tells Bustle. Reihman believes these symptoms may stem from an autoimmune response in which antibodies created to fight Lyme and co-infections go after healthy brain tissue.
Here are some psychological symptoms that may be signs of Lyme and are common to find in people suffering from it, according to experts.
Rage attacks are sudden, overwhelming bursts of rage that often come seemingly out of nowhere. Many people with Lyme believe they're bad people because of their violent thoughts or explosive behavior when actually, the pathogen is at work. This symptom is especially common in those with the Lyme co-infection Bartonella, says Khanna. "When you have inflammation in the brain or an infection in the brain, a lot of the time, we have trouble with impulse control and with intrusive, violent thoughts," she says.
Inflammation in the brain and the cranial nerve can cause varying forms of psychosis, says Khanna. One common one in Lyme patients is derealization — a feeling of detachment from your life, as if you're watching a movie. Depersonalization, a related phenomenon, occurs when people feel detached from their own bodies or thoughts. These conditions can be profoundly disturbing, as they may make someone feel almost as if they are no longer alive.
Some people with Lyme also experience auditory hallucinations, potentially due to inflammation of the nerves around the ear, says Khanna. Sometimes, people won't outright hallucinate, but they'll hear words and phrases repeated internally, almost like a song stuck in their heads.
"The way people with Lyme that I have observed describe Lyme anxiety is that it's a physical anxiety," says Khanna. "For example, someone would say, 'I have had anxiety in the past but this is not anxiety; this is physical.' They feel like it's more in their body and out of control than generalized anxiety."
Khanna thinks of Lyme anxiety almost like a "lower-grade convulsion," she says. Many people with it also experience involuntary movements like twitches, tremors, or even seizures.
Similarly, even those who have experienced depression before tend to describe Lyme depression as very distinct. "Lyme patients describe their depression as very, very dark and hopeless and something that they've never experienced before," says Khanna. "I've had clients that have had depression and they say 'I've had depression, but it was nothing like this.' [They had the] inability to stop crying, and just a deep sense of hopelessness and despair."
The cause of eating disorders in Lyme patients is twofold, says Khanna. First, the other mental health issues Lyme can cause, like anxiety and depression, can increase patients' risk for eating disorders. Secondly, a lot of people with Lyme have food sensitivities, so they may come to fear food. "Behaviorally, they have to restrict their food like they've never done before, and internally and hormonally, there's something that can be causing a severe anxiety disorder," Khanna says.
The challenges of living with a chronic illness can often lead to depression and suicidal thoughts. On top of that, all the mental health issues Lyme causes can increase thoughts of suicide. "If somebody has Lyme, their caregivers and they themselves need to be aware of suicidal thoughts, and they need to be OK to talk to people about their suicidal thoughts," says Khanna. "Chronic pain increases our risk of suicide, and all the other factors that come along with Lyme increase our risk of suicide."
There are two types of suicidal thoughts, Khanna says: active suicidal thoughts, where the person has a plan, and passive suicidal thoughts, where they aren't planning to kill themselves but still wish they were dead. These are both important to take seriously. "If someone's in so much distress they'd say 'I don't care if that car hits me,' they need mental health treatment as much as someone who says 'I've got pills in my cabinet and I'm gonna kill myself,'" says Khanna. "Suicidal thoughts are an alarm bell that we're under too much stress."
Rather than view these mental health issues as evidence that Lyme is in people's heads, we need to start viewing them as a testament to how challenging this illness is to live with. "It's time to come on board and not treat people with Lyme like they don't have a problem," says Khanna, "or like they don't need help."
If you're experiencing mental health challenges associated with Lyme, Khanna recommends finding a therapist, support group, spiritual community, and/or psychiatrist who understands the complexities of Lyme. And remember that as overwhelming as these emotions are right now, they will likely become far more manageable as your body heals.