Madison Area Lyme Support Group

Carol has been a patient of mine for over five years. We have walked through some of the most difficult times in her life as she dealt with her failing marriage and then divorce, a move, significant career changes, undiagnosed medical issues, and co-parenting teenagers.

Yet during our discussions, there was an undercurrent of, “I don’t feel right.” Her feelings were understandable given her life circumstances. But when life settled down, her complaints of pain, stress, fogginess, anxiety, and depression intensified. One medical doctor after the other ran tests with no conclusive diagnosis so she was labeled psychosomatic.

But that didn’t make sense given that fact that she was consistent in therapy, did what was asked, and had significant improvements in several areas of her life. Something else seemed to be wrong. Finally, she found a doctor who tested her for Lyme disease, and she was properly diagnosed.

What is Lyme Disease? Lyme disease is an infectious disease caused by a bacteria and spread by ticks resulting in a suppression of the immune system. It can develop into a chronic multisystemic illness affecting the nervous system causing neurologic and psychiatric symptoms. These symptoms can mimic paranoia, dementia, schizophrenia, bipolar, panic attacks, depression, eating disorders, and obsessive-compulsive behaviors.

This explained everything. It was as if all the random pieces of a puzzle were put together for Carol. The problem is that the diagnosis doesn’t solve the problem, it only identifies it. Counselors and therapists need to differentiate between atypical psychiatric disorders and those associated with having Lyme disease in order to properly treat their clients. Here are some other misconceptions about Lyme disease and mental illness.

1. Often called psychosomatic. When a patient is improperly diagnosed or not diagnosed at all, some physicians deem their condition to be psychosomatic. This is a mischaracterization of psychosomatic disorders. Lyme pain is real, not imagined. Often, patients lose their health, livelihoods, relationship, home, and dignity in the process of getting diagnosed. This is not due to an improper coping mechanism or a cognitive manifestation of emotional stress. Never tell a Lyme patient that what they feel is not real.
2. Neuropsychiatric symptoms are prominent. Lyme patients tend to have trouble with mood regulation, cognition, energy, sensory processing, and/or sleep. This can manifest into paranoia, hallucinations, mania, and/or obsessive-compulsive behaviors. Memory loss and concentration issues mirror other psychological disorders. This might make a patient look like they are in the early stages of dementia, have attention-deficit, or a traumatic brain injury. Sensory processing issues such as sensitivity to lights and sounds are also typical. This results in avoiding daylight, staying at home, avoiding crowned areas such as stores, parks, or restaurants.
3. Often misdiagnosed. Lyme disease looks like other neurological conditions and sometimes is misdiagnosed as chronic fatigue or fibromyalgia. Patients experience extreme fatigue despite sleeping for 10-12 hours a night and/or napping. When they push through one day, they may need 2-3 days of taking it easy to fully recover. The misdiagnosis is frustrating for the patients because it slows down proper treatment.
4. Lyme can resemble Alzheimer’s. Unfortunately, Lyme disease looks like the early phases of Alzheimer’s with rage, short-term memory loss, personality changes, a slower speed of thinking, difficulty remembering words or names, and impaired fine motor control such as buttoning a shirt. This misdiagnosis has devastating consequences as often Alzheimer’s patients are placed in assisted living or locked nursing homes.
5. Anxiety and panic attacks are side effects. Having been told by doctors that what they are feeling is a figment of their imagination, Lyme patients naturally develop anxious thoughts. In addition, some of the medical treatments for Lyme can have a side effect of increased anxiety. Left unchecked, this manifests into panic attacks. Further left alone, turns into paranoid thoughts, actions, and phobias. Many become fearful of the attacks and therefore isolate from social gatherings.
6. Brain fog looks like abuse fog. Because Lyme disease can affect the brain, patients often look like they are not thinking clearly. This mimics abuse fog which occurs when a person is being abused. Thoughts tend to be hopeless, distorted, and disorganized. Patients are unable to concentrate, to comprehend during reading, have memory issues, and poor mental clarity. Everyday tasks can become more difficult including participating in therapy.
7. Depression is common. All chronic illnesses potentially cause major depression due to the recurrent nature of the disease. Depression can range from moderate to severe levels and occurs in approximately 60% of patients. Feelings of being moody and irritable are common. Inflammation, pain, interpersonal stressors, economic loss, and a sense of doom contribute to the severity of the depression. Typical depression remedies do not work on Lyme patients. Therapy is very helpful as are support groups with other Lyme patients.
8. Psychological ramifications are untreated. Most therapists are not aware of the damaging effects of a long-term chronic illness like Lyme disease and as a result, fail to properly diagnose. As a result, some Lyme patients are unnecessarily hospitalized in mental facilities. This further increases the existing social isolation done by friends, family, and community which contribute to feelings of loss.
9. Increase in suicidal and suicide. Living with Lyme disease is hard and debilitating. Friends and family rarely comprehend the magnitude of the disease resulting in a feeling of isolation. Discouragement, fear, helplessness, frustration, loss, grief, and loneliness are a result. As the disease progresses and mobility or cognitive functioning decreases, suicidal idealization increases. Some, seeing no way out, do unfortunately take their own lives.

Lyme patients often feel abandoned by the medical community, friends, and family members. It is imperative that therapists be sensitive to this and not contribute these feelings whether by accident in misdiagnosis of other mental illnesses or more intentional by not being empathetic to a person suffering from a chronic illness.

If you or someone you know is struggling, please reach out for assistance. The national suicide prevention lifeline is 800-273-8255 or www.suicidepreventionlifeline.org.