by Jenny Lelwica Buttaccio
(Content Notice: Please be advised this article contains content about suicide. If you’re contemplating suicide, please call the National Suicide Prevention Lifeline at 988. This service provides free, confidential support 24 hours a 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 the symptoms aren’t just a side effect of struggling with a 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 health care 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 surrounding mental health combined with the contentious politicization of persistent Lyme disease often fosters an unwelcoming environment for those seeking help.
Because many health care 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, many 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 more than 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 may 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
As intense as these thoughts, feelings, and experiences are, they’re 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
Depression and anxiety aren’t cookie-cutter conditions. They can include a range of behavioral and physical symptoms and manifest differently in different people. 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 that 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.”
Many people report they’ve never had depression, general anxiety, or social anxiety before Lyme disease — after the disease, however, some people 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, you’re unlikely to rally an adaptive response if you have a compromised immune system (and most Lyme patients do). Instead, your immune system will continue to fight these harmful invaders, but it lacks the strength to defeat them fully.
The result? You’ll remain entangled in an endless loop of persistent symptoms, including depression, 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 hundreds of peer-reviewed articles on 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.
It can be hard to tell if a tick-borne disease is the root cause of depression and anxiety. But a person’s clinical presentation is the best reference point to determine if Lyme disease is at play, says Dr. Bransfield.
But because the clinical presentation will differ from one person to another, you’ll need to work with a health care 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.
Need help finding such a doctor? The International Lyme and Associated Diseases Society (ILADS) offers a Provider Search option, as does the nonprofit Project Lyme. Many online support groups and forums also have lists of health care professionals to whom they can refer you.
2. Treat Chronic, Low-Grade Infections.
To effectively treat Lyme patients struggling with depression and anxiety, low-grade and persistent infections must be addressed. But it’s not just Borrelia burgdorferi — multiple microbes can contribute to mental health symptoms, including:
- 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, many other microbial possibilities contribute to mental health issues. Those with Lyme are likely to have bacterial, fungal, viral, parasitic, and protozoal infections to contend with, as well.
3. Prioritize Sleep.
We’ve all heard that sleep is essential for recovery from Lyme, but for some, 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 quiet a racing mind, take a few minutes to jot your thoughts down in a journal or notepad and repeat it as often as needed.
4. Manage Stress.
Chronic stress suppresses the immune system, so minimizing it 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 deal with friends, family, or clinicians 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 can 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. Dr. Branfield often treats Lyme patients with low doses of medications, which can be just as effective and minimize side effects. With the right treatment plan, there can be a place for such medications to aid in feeling better.
“We can diagnose depression and anxiety, but we must also recognize that what causes them is an area 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.
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