Health Professionals

Health care professionals have tremendous power in influencing and guiding the care of their patients, clients, or consumers. Every helping profession is bound by a code of ethics, and for anyone serving a chronically ill population such as Lyme plus patients it is important that we evaluate “what is an ethical approach to working with this population?”

This website focuses primarily on mental health in Lyme patients because it is an area of need. However, it important to understand that physical and mental health are not somehow siloed from each other. The physical symptoms of Lyme disease take a mental toll on patients, which can produce a feedback loop of stress that further exacerbates both physical and mental/emotional symptoms.

A Lyme Patient Quality of Life Survey Study was conducted with patients with chronic Lyme disease (CLD). This survey found that Lyme disease can be long lasting, significantly impairs patient quality of life, and can be costly to patients, employers, healthcare systems and society. Approximately half of the patients in this survey with chronic Lyme disease report that they have been ill for more than 10 years. These patients report on average a lower quality of life than those with most other chronic illnesses including congestive heart failure, multiple sclerosis, diabetes, and arthritis. Over 43% report that they had to stop working and 25% report that they have been on disability at some point in their illness. Furthermore, these patients are five times more likely to visit healthcare providers and twice as likely to be seen in emergency rooms than the general population.

What about mental health specifically? In the same study, it was found that

The number of days with activity limitation due to pain (16.5) reported by CLD patients significantly exceeded days with activity limitation due to pain caused by cancer (13.1), cardiovascular disease (9.2) and emotional problems (8.8) (t = 15.73,p < 0.001) (Richardson et al., 2008). Bad mental days (15.5) reported by CLD patients were strongly correlated with anxious (15.8) or depressed days (12.4) (ρ = 0.737 and 0.791, p < 0.01 and 0.01, respectively). The number of unrested days (20.3) reported by CLD patients was associated with the high severity of fatigue reported by these patients (ρ = 0.469,p < 0.01). The CLD figure significantly exceeded the number of unrested days reported by people with cancer (14.5), cardiovascular disease (11.2) and emotional problems (15)(t = 28.87,p < 0.001)

*Johnson L, Wilcox S, Mankoff J, Stricker RB. Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey PeerJ. 2014; Accessed through lymedisease.org

In a study that was published in the American Journal of Psychiatry* in 2021, the authors concluded that

Individuals diagnosed with Lyme borreliosis in the hospital setting had an increased risk of mental disorders, affective disorders, suicide attempts, and suicide

More specifically, these patients had 28 percent higher rate of mental health disorders and were twice as likely to have attempted suicide post-infection, compared to individuals without the diagnosis.

This study showed that within the category of affective disorders such as depression and bipolar, these Lyme patients at a 42% higher rate of prevalence as opposed to non-Lyme patients.

Furthermore, and perhaps most alarmingly, Lyme patients had a 75% higher rate of death by suicide than the non-Lyme population. Undoubtedly, more research is needed, however from this study it seems clear that having Lyme disease is a clinically significant risk factor for high lethality suicide attempts.

We might interpret this as an indicator of the level of despair and hopelessness that comes with chronic symptoms associated with Lyme disease.

Given that the CDC is estimating over 300,000 new cases of Lyme per year (in the US alone), we argue that Lyme poses a significant epidemiological threat for both physical and mental health to the public.

*https://doi.org/10.1176/appi.ajp.2021.20091347

Lyme and Medical Trauma

In addition to the prevalence of affective and other mental health comorbidities, a significant percentage of Lyme patients experience a form of medical trauma.

According to a survey collected by lymedisease.org* 75% of patients saw 4 or more physicians before being diagnosed with Lyme and 51% of those saw 7 or more physicians before receiving diagnosis. Adding insult to injury, many of these patients experienced crazy-making behavior from their doctors— being told some version that it is ‘all in their head,’ or solely a mental health condition, treatable by psychiatric medication.

That is, some doctors attempt to reduce the patients symptoms to stress, anxiety, and/or depression alone. They minimize the patient’s self-knowledge and bodily knowledge, which in turn can cause the patient to begin to doubt their own reality thus delaying diagnosis and treatment. The consequences of this dynamic are disastrous for the patient.

Potential consequences include: delayed treatment and further disease progression, patient mistrust of doctors/conventional medicine thus increasing the likelihood that the patient will utilize experimental treatments which may have significant risks, patient questioning or doubting their own reality, increasing patient despair and sense of hopelessness— which in turn can increase suicidality.

There is a significant need for more funding and research into chronic illnesses such as Lyme disease. Yet, if we can’t recognize the problem with telling patients that their symptoms are due to “just stress,” or minimizing them in other ways because “doctors know better,” then we have failed at the Hippocratic oath of doing no harm.

Lyme patients need doctors to believe them when they say that something isn’t normal for them, not to explain away or minimize their symptoms.