Madison Area Lyme Support Group

by Jenny Lelwica Buttaccio
Updated 10/31/19

(Content Notice: Please be aware that this article contains content about suicide. If you’re contemplating suicide, please call the National Suicide Prevention Lifeline at 1-800-273-8255 or dial 911. These services provide free, confidential support 24 hours/day, and can assist you with finding the resources you need to get help.)

Depression and anxiety are no strangers to chronic Lyme disease patients. The neuropsychiatric symptoms — defined as involving both neurology and psychiatry — can be debilitating, particularly when added to the physical symptoms of Lyme, and experts suspect they’re not just a side effect of struggling with chronic illness in general.

In fact, there’s a growing body of evidence that Lyme disease may be a causative agent for depression and anxiety. Yet, many mental health professionals and healthcare providers aren’t aware that Borrelia, the bacteria most commonly associated with Lyme disease, along with coinfections like Bartonella and Babesia can contribute to mental health symptoms. And to make matters worse, the stigma that surrounds mental health combined with the contentious politicization of persistent Lyme disease often fosters an unwelcoming environment for those seeking help.

Because many healthcare professionals don’t know just how prevalent the neuropsychiatric manifestations of Lyme disease can be, patients can be mistaken as unmotivated, lazy, or obstinate. Consequently, patients often feel abandoned, confused, and misunderstood by the very system they look to for help.

Furthermore, suicide is a legitimate concern among the Lyme disease population. “It is estimated there are over 1,200 LAD (Lyme and associated diseases) suicides in the U.S. per year,” says Dr. Robert Bransfield, MD, DLFAPA, Clinical Associate Professor at Rutgers Robert Wood Johnson Medical School. Also, about 41% of children with Lyme disease will experience suicidal thoughts.

Dr. Bransfield’s knowledge of Lyme disease stems from 30 years of clinical practice and research. “I treated treatment-resistant psychiatric cases, and because I did, I ended up getting a lot of Lyme patients referred,” he says. “A lot of the treatment-resistant cases ended up being Lyme cases, and they just kept coming.”

Based on his experience, Dr. Bransfield has identified some critical risk factors that can contribute to the prevalence of suicide among Lyme patients. They are:

• Immune-mediated (abnormal activity of the body’s immune system) and metabolic changes in the body
• Dysregulation of amino acids or neurotransmitters such as tryptophan and dopamine that impact mood, sleep, alertness, motivation, and more
• Feeling like a burden to family, friends, or society
• Encountering negative and unsupportive attitudes about Lyme disease from friends, family, or the medical community
• Feeling overwhelmed while trying to deal with a host of debilitating symptoms
• Impulsivity or unpredictable behaviors
• Persistent-low grade infections that intensify and expand the list of symptoms

If all of that feels very technical, here’s a sense of how it translates to real life, as portrayed in a recent Twitter thread by members of the Lyme community when they were asked about what it feels like to live with anxiety and depression:

As intense as these thoughts, feelings, and experiences are, they are invisible — much like the physical symptoms of chronic Lyme. As a result, many patients encounter widespread disbelief that tick-borne diseases could be at the root cause of their anxiety, depression, or other mental health issues, leaving them unsure of where to turn for help.

What Depression and Anxiety Look Like in Lyme Patients

Let’s start by defining depression and anxiety, which aren’t cookie cutter conditions. They can include a range of behavioral and physical symptoms and manifest differently in different people.

The Diagnostic and Statistical Manual of Mental Disorders (DSM) — the handbook used by healthcare professionals to diagnose mental disorders — details specific criteria for making a formal diagnosis, but here’s a more layman look at both:

Symptoms of clinical depression or major depressive disorder (MDD) can include:

• Mood-related symptoms such as hopelessness, loss of interest in things that once gave you pleasure, sadness, discontent, guilt, apathy, and anxiety
• Behavioral symptoms such as being agitated or irritable, removing yourself from social situations, and excessive crying
• Whole-body fatigue
• Excessive hunger or loss of appetite
• Weight gain or weight loss
• Cognitive changes such as lack of concentration
• Sleep issues, such as insomnia or excessive sleeping
• Suicidal thoughts

Symptoms of clinical anxiety or generalized anxiety disorder (GAD) can include:

• Excessive anxiety or worry that is difficult to control about a variety of topics, events, or activities
• Feeling on edge, restless, and/or irritable
• Excessive fatigue
• Cognitive changes such as impaired concentration or a blank mind
• Muscle aches and soreness
• Difficulty falling or staying asleep

When looking at any of these symptoms in Lyme patients, it’s hard to know if they are stemming from an infectious process in the body versus other genetic, biological, or environmental factors. The timing of symptom onset can sometimes offer a clue.

Often, depression and anxiety don’t occur right after a Lyme infection. When Lyme is treated in an acute stage, patients may not develop further symptoms.

But due to inaccurate tests for Lyme disease and coinfections, many people go undiagnosed and thus untreated, and they may go on to develop chronic Lyme. Others won’t receive adequate treatment for their infection, resulting in chronic Lyme symptoms or delayed ones that pop up further down the road.

“The later presentation of Lyme disease is quite different — it’s more neuropsych symptoms, or could even be Alzheimer’s,” says Dr. Bransfield. “There’s a lot of unknown.”

Dr. Bransfield notes some unique characteristics of depression and anxiety in patients whose symptoms are caused by Lyme disease:

“The greater the degree of comorbidity (the presence of two or more conditions in a patient), the greater the degree it’s Lyme disease,” he explains. In other words, the more neuropsychiatric symptoms or diagnoses you have as a Lyme patient, the greater the likelihood your anxiety and depression are rooted in tick-borne infections.

“If you only have depression and nothing else, or panic attacks and nothing else, it’s probably not due to Lyme disease,” says Dr. Bransfield. “But if you have both physical and mental symptoms — aches, pains, fatigue, headaches, GI (gastrointestinal) problems, depression, anxiety, depersonalization — it’s probably a result of Lyme disease.”

In fact, many people report that they’ve never had depression, general anxiety, or social anxiety before Lyme disease — after the disease, however, some people will struggle immensely with these symptoms. Dr. Brainsfield has found a specific variation of anxiety in people with Lyme: “A panic attack that lasts longer than half an hour is specific to Lyme disease — I’ve found that to be a big rule of thumb,” he says.

Why Lyme Triggers Neuropsychiatric Symptoms

Because Lyme has metabolic and immune effects, it can impact every system in the body, including the central nervous system (brain) and endocrine system (hormones).

“When pathogens invade the nervous system, white blood cells — immune cells like lymphocytes and plasmocytes — flood into the white matter of the brain and the spinal cord, says Dr. Bill Rawls, Medical Director of RawlsMD and Vital Plan. “This causes a cascade of inflammatory immune messengers, called cytokines, in cerebrospinal fluid.”

In a healthy individual, the body will react with an adaptive immune response — highly specialized cells with a mandate to eliminate harmful microbes or stop the spread of them. An example of adaptive immunity is the common cold or flu.

However, if you have a compromised immune system (which the majority of Lyme patients do), you’re unlikely to rally an adaptive response. Instead, your immune system will continue to fight these harmful invaders, but it lacks the strength to defeat the pesky tick-borne infections.

The result? You’ll remain entangled in an endless loop of persistent symptoms that can include depression and anxiety, and inflammation and a buildup of toxins will run amok. Some individuals may even develop autoimmune symptoms along the way. As for why some people develop significant neuropsychiatric symptoms when dealing with Lyme disease and others don’t, it’s still a bit of a mystery.

How to Treat Lyme-Related Depression and Anxiety

Although there are more than 400 peer-reviewed articles on the subject of Lyme disease and depression, anxiety, and other neuropsychiatric symptoms, the medical community remains divided on how to treat patients. “One way to conceptualize this is to think of a pyramid,” says Dr. Bransfield. “At the top of the pyramid, everyone agrees the patient has Lyme disease. As you go down the pyramid, it’s not so clear-cut.”

If you’re one of the many Lyme patients who find themselves at the bottom of the pyramid — stuck and disheartened without a definitive path to recovery — there is hope. The following strategies can help you advocate for yourself and access appropriate care to restore your mental and physical health.

1. Work with a Healthcare Provider Who Considers All Your Symptoms, Past and Present.

Since we don’t have an adequate way of testing for Lyme disease and coinfections, it can be hard to tell if tick-borne diseases are present, much less the root cause of depression and anxiety. Therefore, says Dr. Bransfield, a person’s clinical presentation is the best reference point to determine if Lyme disease is at play.

However, the clinical presentation will differ from one person to another, so you’ll need to work with a healthcare provider — preferably a Lyme-literate one — who’s familiar with both your medical history and the wide range of symptoms a tiny tick bite can produce.

Don’t know where to find such a doctor? The International Lyme and Associated Diseases Society (ILADS) offers a Provider Search option. The Global Lyme Alliance can also help you find a Lyme-literate medical professional near you. Additionally, many online support groups and forums have lists of healthcare professionals to whom they can refer you.

2. Treat Chronic, Low-Grade Infections.

Dr. Bransfield notes that low-grade infections are immunosuppressive and contribute to chronic illness. To effectively treat Lyme patients who are struggling with depression and anxiety, low-grade and persistent infections must be addressed, too.

However, remember that multiple microbes can contribute to mental health symptoms. Although Borrelia burgdorferi is the most well-known tick-borne disease, there are other coinfections that ticks carry that could be instrumental in the onset of mental illness. Those include (but aren’t limited to):

• Different species of Borrelia, such as Borrelia afzelii (found in Europe), Borrelia hermsii (the primary cause of tick-borne relapsing fever in North America), and Borrelia miyamotoi (closely linked to tick-borne relapsing fever)
• Bartonella henselae (cat scratch fever)
• Babesia microti and Babesia duncani
• Rickettsia rickettsii (Rocky Mountain spotted fever)
• Anaplasma phagocytophilum (human granulocytic ehrlichiosis)

But these pathogens are just the very tip of a colossal iceberg. In actuality, there are innumerable other microbial possibilities that contribute to mental health issues. Plus, people with Lyme disease also have additional bacterial, fungal, viral, parasitic, and protozoal infections to contend with, which can make an accurate diagnosis all the more challenging.

3. Prioritize Sleep.

We’ve all heard that sleep is essential for recovery from Lyme disease, but for many of us, it seems like an impossible feat. But better sleep hygiene can lead to improvements in mood swings, immune function, and fatigue, says Dr. Bransfield.

“If you can improve immune function, then you’re allowing your body to fight infections on its own.” Try the following to get some shuteye.

• Establish your circadian rhythm by going to bed and waking up at the same time each day.
• Power down your phone and computer around 9 pm. The blue light from your devices can disrupt the production of melatonin in your brain.
• If you have trouble sleeping, don’t consume caffeine after 4:00 pm, including coffee, green or black tea, and chocolate.
• Make your room as comfortable as possible. Keep it cool and dark, and wear a sleep mask if you notice that the light keeps you awake.
• To quell a racing mind, take a few minutes to jot your thoughts down in a journal or notepad. This simple exercise can calm an overactive mind, and you can repeat it as often as needed.

4. Manage Stress.

Chronic stress suppresses the immune system as well, so minimizing stress as much as possible can give your body the best chance of fighting infections. Speaking with a therapist (especially one who knows about Lyme disease), enjoying time in nature, and engaging in mind-body exercises like yoga, Pilates, qigong, and meditation can balance the nervous system and bring on calm.

5. Psychotropic Drugs Can be Helpful.

Most Lyme patients have dealt with friends, family, or clinicians who are unaware of the role tick-borne diseases play in mental health. They may also have been told that they’re fine, they’re a hypochondriac, or their illness is all in their head, says Dr. Bransfield.

Understandably, Lyme patients become leery of seeing a psychiatrist or taking psychotropic medications because they don’t feel believed, or they experience unpleasant side effects when taking a drug. But with the right treatment plan, there can be a place for such medications to aid in feeling better.

“A lot of Lyme patients have low body temperatures, and they are often highly sensitive to things, even at low doses, yet they are often treated with things at high doses,” says Dr. Branfield. He often treats Lyme patients with low doses of medications, which can be just as effective and minimize side effects. The key is to understand how psychotropic medications can act differently in people with Lyme disease, and opt for an individualized approach to addressing their concerns.

The Bottom Line

Ultimately, the entire medical community must understand that there are psychiatric issues caused by Lyme disease. Until they do, Dr. Bransfield has found this concept to be well-received among psychiatrists, nurse practitioners, and family practitioners, all of whom tend to look at diseases using a multi-system model, pulling information for a variety of areas, as opposed to specialists who can sometimes be myopic.

“We can diagnose depression and anxiety, but we also recognize that what causes them is an area that’s not well understood,” Dr. Bransfield says. “If you understand causality, you can go past chronic symptom management. The earlier you intervene, the better.”

Dr. Rawls is a physician who overcame Lyme disease through natural herbal therapy. You can learn more about Lyme disease in Dr. Rawls’ new best selling book, Unlocking Lyme.
You can also learn about Dr. Rawls’ personal journey in overcoming Lyme disease and fibromyalgia in his popular blog post, My Chronic Lyme Journey.