The scientific article below finally helps to objectively assess the suffering of Lyme disease patients using qualitative research methods. We present the relevant findings of this lengthy article in Hungarian translation.
Summary
Persistent, unexplained symptoms attributed by patients to Lyme disease pose a significant challenge to healthcare systems, where diagnostic uncertainty and disputed legitimacy shape clinical and institutional responses. This qualitative study is based on in-depth interviews conducted with individuals in Nova Scotia (Canada) who experience persistent symptoms resulting from suspected or confirmed Lyme disease.
Participants reported complex diagnostic and treatment pathways shaped by perceived limitations in testing, inconsistent clinical interpretations and limited recognition of persistent symptoms. These dynamics led to feelings of rejection and uncertainty, prompting many to seek second opinions, pursue alternative care or take matters into their own hands. As these struggles unfolded, participants reported wider disruptions to their everyday lives, including shifts in family roles, relationship tensions and reduced functional capacity.
1. Results
We conducted twenty-one in-depth, semi-structured interviews with participants from various parts of Nova Scotia in the autumn of 2024. The sample comprised twelve women and nine men. The interviews lasted between approximately 30 and 90 minutes, averaging around one hour. In keeping with the study’s phenomenological approach, the participants’ voices are featured throughout this section to illustrate how they understand and describe their experiences. Participants reported numerous challenges they faced whilst seeking a diagnosis and treatment for persistent symptoms associated with Lyme disease. These accounts reflect their interpretations of their experiences within a healthcare setting shaped by differing clinical perspectives on chronic Lyme disease. Quotations have been attributed to participants by their first names where permission was granted; otherwise, a pseudonym has been used, indicated by a name in quotation marks.
1.1. Perceived limitations of testing
Participants consistently described the standard two-step protocol approved by Canadian clinical guidelines – ELISA screening followed by Western blot – as too narrow in scope and not sufficiently sensitive to capture the experiences of illness they reported. Several expressed concern about the range of strains included in the ELISA and Western blot tests. Keith, for example, noted that “the ELISA test only screens for three bacterial strains… There are many different types of bacteria within Lyme disease.” Others similarly questioned whether the diversity of Borrelia species circulating in North America exceeds what current tests are designed to detect.
Participants also described the limitations of the tests’ sensitivity, particularly in the early stages of the disease. According to Brian, the two-test system “misses too many cases” – a concern echoed by others who felt that their symptoms were not adequately reflected in the laboratory results. Some participants described situations in which clinicians interpreted negative results as definitive. ‘Sylvia’, for example, recalled being told that further testing was unnecessary because ‘the tests are expensive’, whilst others encountered difficulties in arranging repeat tests or in having their persistent symptoms taken seriously in the absence of a positive result.
Some participants compared Canadian testing protocols with those available elsewhere. Brian referred to the IGeneX test, noting that it “tests for eight markers”, which he believed provided a more comprehensive picture than the Canadian two-test system. Participants described these comparisons as contributing to uncertainty about how to interpret their symptoms and how to proceed with further investigations.
1.2. Experiences of misdiagnosis or dismissal
Participants frequently reported encounters in which their symptoms were attributed to conditions other than Lyme disease, or which clinicians deemed inconsistent with Lyme disease. These experiences often unfolded over months or years, during which participants sought explanations whilst feeling that they had not been adequately assessed for neurological, cardiac or musculoskeletal abnormalities. Brian reported that a doctor was “99 per cent certain” that he had multiple sclerosis (MS), although Brian believed his symptoms were more consistent with Lyme disease. Brenda was similarly encouraged to “keep quiet and take the MS medication”, despite feeling that the diagnosis did not match her experiences.
Others reported interactions in which their symptoms were interpreted within a psychological or age-related framework. ‘Alice’ was told that her symptoms reflected ‘situational anxiety’, whilst Donna was warned that her fatigue, memory problems and neurological symptoms were signs of ageing or the menopause, and that she should ‘socialise more’ and ‘get more exercise’. To the participants, these explanations seemed at odds with the severity or progression of their symptoms. ‘Mona’ presented with a rosette-shaped rash, yet was diagnosed with fibromyalgia, whilst ‘Robin’ was told that Lyme disease was unlikely because she had not been bitten by a tick and did not have the ‘typical’ symptoms; her doctor did not order any tests.
Several participants described interactions in which they felt dismissed or met with scepticism. Harriet recalled that an infectious diseases specialist “rolled his eyes” and prescribed psychiatric medication instead of investigating her painful joints, tachycardia and headaches. Later, she reflected: “They made me believe that it was all in my head.” Others described instances of rejection where they had to “fight” for further investigations, or where their positive results from alternative laboratories were ignored. Keith, who had been experiencing neurological, cardiac and joint symptoms for years, was repeatedly told that he did not have Lyme disease, and was eventually diagnosed with sleep apnoea – a conclusion he felt did not explain the full range of his symptoms. The participants described these consultations as leaving them with unanswered questions about the opinions and explanations offered. For some of them, this uncertainty led to a process of seeking further investigation or exploring other options, as they continued to try to make sense of their experiences.
1.3. Differing views on treatment approaches
Participants described a range of experiences relating to the management of their persistent symptoms, highlighting the differences between their expectations or preferences within the conventional healthcare system and the approaches actually offered. A central theme was the perception that treatment guidelines restricted clinicians’ options. Several participants felt that doctors were bound by protocols that did not support the long-term use of antibiotics or the exploration of alternative treatment options. Brian, for example, felt that doctors who do not follow standard approaches risk professional consequences: “If you’re a GP here in Nova Scotia and you start telling your patients, ‘Right, we need to get an IGeneX test… I’ll prescribe doxycycline for six months…’ I don’t think it would be long before [before your licence is revoked].” Participants described these constraints as contributing to their perception of a narrow range of treatment options.
Many participants also reported tensions between conventional medical care and complementary or integrative approaches. Some reported that naturopaths or herbalists were more open to exploring a wider range of treatments, whilst they perceived doctors as sceptical or dismissive of these approaches. ‘Mona’ recalled that when she mentioned the naturopathic consultation, her doctor ‘just… grumbled, saying, “Oh, they’re not doctors… they don’t know about this.”’ “Stacy” similarly remarked: “The naturopath is open to collaboration. But the conventional doctor doesn’t want to work with the naturopath.” Participants interpreted these interactions differently: some saw them as reflecting limited openness within the healthcare system, whilst others believed they were part of a broader uncertainty regarding the effectiveness of different treatment approaches.
As they navigated these differing perspectives, participants described a number of strategies they used to seek care that aligned with their understanding of their condition. Many turned to alternative practitioners, such as naturopaths and osteopaths, particularly where they felt their concerns were not being addressed within conventional healthcare systems. ‘Esther’ credited a naturopathic doctor with the diagnosis and treatment of her Lyme disease, whilst ‘Alice’ turned to a naturopathic friend for support. Participants also emphasised that self-education played a role in shaping their decisions. Keith questioned his doctor’s interpretation of his symptoms, whilst “Alice” turned to independent research after feeling dismissed. A smaller number of participants sought care outside the region, and in some cases outside the country, sometimes at considerable personal expense, when they felt that local options did not adequately address their symptoms or treatment needs.
Some participants commented on what they perceived as a lack of collaboration between conventional and complementary therapists. ‘Stacy’ emphasised the value she saw in a more integrated approach: ‘If you want to beat whatever it is you’ve got, especially Lyme, then herbalists and conventional doctors, so to speak, need to work together.” These accounts illustrate how participants encountered different models of care and how they sought to navigate between them in the absence of agreed guidance.
1.4. Perceptions of systemic barriers and policy constraints
Participants frequently reported broader systemic challenges they faced whilst seeking care for their persistent symptoms, including what they perceived as limited institutional recognition of the provincial health service’s approach to chronic Lyme disease. Several referred to public statements made by health officials as having shaped their perception of the provincial stance on chronic Lyme disease. Some referred to a 2019 media report quoting the province’s Chief Medical Officer of Health, who described chronic Lyme disease as “pseudoscience supported by a cult following” (pseudoscience supported by a cult following) (Rankin, 2019). Harriet noted that, in her view, “he never denied [it]… he didn’t say, ‘Oh, that’s not what I meant.’” Participants interpreted these statements as indicative of a broader scepticism regarding the legitimacy of the symptoms, and as influencing how Lyme disease is managed within the healthcare system.
These perceptions often intersected with the participants’ clinical experiences. Several participants described encounters in which they felt their concerns were dismissed or not taken seriously, and they linked these experiences to what they perceived as systemic barriers. Keith expressed this feeling strongly, stating: “Our healthcare system here in Nova Scotia… is way off the mark, and so many people are unwell because of it.” Some participants believed that economic or administrative considerations had shaped policy decisions relating to Lyme disease, including concerns about the potential financial implications of extended testing or long-term treatment, or the perceived impact of recognising Lyme disease on tourism. These interpretations, rooted in the participants’ own experiences and observations, shaped their understanding of the broader policy context surrounding the system and their trust in it.
Participants also reflected on the system-level support measures they felt were necessary. Several suggested that dedicated Lyme disease clinics or fast-track assessment centres could help address the delays experienced in diagnosis and treatment. “Sally” drew a parallel with the response to COVID-19: “When COVID hit, all these clinics opened… Do you think something similar could be done [for Lyme disease]?” For the participants, these comparisons highlighted the gaps between the urgency of the symptoms and the availability of coordinated, system-wide resources. These narratives illustrate how participants interpreted the institutional and policy context surrounding Lyme disease in Nova Scotia, and how these perceptions shaped their experiences of seeking care.
1.5. Impact on everyday life
Participants described the wide-ranging effects of their persistent symptoms on day-to-day functioning, relationships, employment and overall quality of life. Their accounts illustrated how chronic illness had transformed routines, identities and social environments.
1.5.1. Social and relational impacts
Many participants described significant shifts in family roles and household dynamics as their symptoms worsened. Several relied heavily on their spouse or partner for day-to-day care. Donna explained: “My husband was brilliant and took care of everything with the children and everything else whilst I was ill”, whilst “Leonard” recalled that after he was admitted to hospital, “my wife had to do practically everything.” For some, these experiences strengthened their relationships; for others, they led to tension or emotional distance. ‘Mona’ recounted: ‘I ruined a 15-year relationship because I was bedridden and ill for six years’, whilst ‘Martial’ described how his friends and family had abandoned him: “They simply walked away. They didn’t want to deal with it.” Participants also described experiences of stigma or rejection from relatives, community members or clinicians. ‘Pam’ recalled being ‘looked down upon’ when she told her family about a possible undiagnosed illness, and several participants reported being labelled ‘hypochondriacs’ or ‘frequent complainers’. Some said they avoided discussing their condition to prevent conflict or scepticism. “Alice” reported that she relies on a small circle of trusted people: “A very close circle… only they understand.”
1.5.2. Functional, occupational and financial impacts
Participants also described significant changes in their physical abilities, including fatigue, cognitive impairment, mobility challenges and sensory sensitivity. These symptoms often made routine activities overwhelming and contributed to reduced independence. ‘Gerald’ reported needing help with basic tasks, whilst Harriet struggled to stay awake during the school day. Several participants linked these changes to shifts in their sense of identity and self-perception. These functional limitations also affected employment and financial stability. Many participants reported difficulties in maintaining or advancing their careers. Brenda said: “I lost the career I loved”, whilst Keith remarked that his plans for promotion had “gone up in smoke”. Some participants reported significant financial consequences. A few spoke of bankruptcy, selling their belongings, or using up their savings to cover treatment costs. “Bev” explained: “I couldn’t afford to send my daughter to school or support her properly.” Others described the challenges of accessing disability benefits or workers’ compensation.
In all the accounts, participants described everyday life as one in which they had to constantly adapt as symptoms persisted or changed. What had previously been routine often required planning, negotiation or support, and many described a cumulative burden that permeated the practical, social and emotional dimensions of everyday life.
1.6. Advocacy and activism, and peer-led support
As participants navigated the challenges of living with a chronic illness, many reported becoming involved in advocacy and community engagement. These efforts ranged from asserting themselves in clinical settings to broader initiatives aimed at raising awareness, supporting others and influencing public policy.
1.6.1. Self-advocacy and informal community education
Participants often reported having to advocate for their interests in clinical settings which they perceived as dismissive or simply unresponsive. Keith recalled begging for help: “I’m begging you, help me… [but the doctor’s reply was] ‘I can’t help you; I’m here dealing with bandages and broken arms.’ ‘Leonard’ was eventually diagnosed after being repeatedly refused a examination. Others employed a range of strategies to obtain care; “Bev” said she had to “threaten” her doctor to get her thyroid medication, whilst “Stacy” admitted that she “lied” to get antibiotics. ‘Mona’, ‘Robin’ and Keith repeatedly requested or insisted on a blood test, which ultimately confirmed Lyme disease. These experiences motivated the participants to share information within their communities. Some offered guidance to neighbours or family members who had found ticks, whilst others helped people recognise the symptoms or navigate the healthcare system. Keith explained: “I now see it as my responsibility to educate people… Do I do this formally? Not at all. Do I do it informally? Absolutely.” Participants regarded these informal discussions as essential in helping others to avoid the delays and rejections they themselves had experienced.
1.6.2. Organised activism and peer-led support networks
Several participants were involved in more structured advocacy efforts. ‘Leonard’ and Brenda organised community education events, whilst Brenda contributed by writing articles, giving talks and establishing links with organisations. Participants also utilised their personal and professional networks to disseminate research and advocacy materials relating to Lyme disease. Brian remarked: “I send Donna… anything that’s relevant… she posts it.” Donna became a key figure in local advocacy, founding a support group, organising community events, and collaborating with individuals raising funds through national initiatives. She and Brenda worked to establish a recognised Lyme disease association in Nova Scotia to increase legitimacy, secure funding and create a centralised source of information.
The participants also used creative approaches to raise awareness. Brenda developed a Lyme disease awareness badge, a crocheted mascot called ‘Lymear’, and small crocheted spirochetes called ‘Lymettes’ to use as educational tools. She designed a public Lyme disease awareness billboard and a Lyme disease awareness flag, which she hoped would be flown on Parliament Hill in Ottawa. Donna emphasised the importance of visibility, encouraging local authorities to declare May as Lyme Disease Awareness Month and to put up signs in public spaces. Some have reached out directly to political decision-makers and approached political parties: “We have an ongoing petition… we managed to hold a Zoom presentation for the PC faction [politicians]… proper education… a dedicated clinic for tick-borne diseases… a non-partisan working group.” Others have also raised awareness of Lyme disease through letters to the editor, social media posts and seasonal tick awareness campaigns.
Support networks, including the Nova Scotia Lyme Support Group and online Lyme disease communities, were described as essential sources of information, validation and emotional support. Participants emphasised the value of shared experiences. “Robin” explained: “It’s easier to talk to someone who understands… You realise you’re not alone.” The sharing of practical information – on tick checks, repellents, symptoms, diet, supplements and treatment options – was a defining feature of peer education and a key component of the participants’ activism.
2. Conclusions
The experiences of individuals living with persistent symptoms in Nova Scotia shed light on the enduring tensions between lived, embodied accounts of illness and the institutional biomedical paradigms through which Lyme disease is formally recognised and treated. Viewed through the lens of body-aware health movements, these narratives reveal how participants navigated the lack of diagnostic certainty, inconsistencies in clinical interpretation, and the broader structural constraints that shaped their access to care. As this study has demonstrated throughout, experiential knowledge became a critical resource in understanding persistent symptoms and in challenging the institutional frameworks which participants felt did not adequately reflect their reality.
The participants’ accounts also illustrate how individuals respond to these tensions by cultivating interpretative resources, seeking community support, and engaging in advocacy that extends beyond the immediate clinical encounter. These practices do not constitute resistance in the narrow political sense, but rather reflect the everyday strategies through which individuals assert the legitimacy of their experiences, and seek to secure recognition within systems where they perceive a lack of response. In this way, the findings echo key dimensions of body-conscious health movements: the contested nature of the legitimacy of illness, the re-affirmation of experiential authority, and the transformation of private suffering into collective meaning-making and action.
The implications of these findings extend beyond individual clinical interactions. They highlight the structural necessity of paying attention to how uncertainty is communicated, how guidelines shape clinical thinking, and how experiential knowledge is valued within healthcare systems. By placing the lived reality of individuals living with symptoms of chronic Lyme disease at the centre, this study contributes to the politics of visibility, the epistemology of this contested disease, and the broader debates surrounding the conditions necessary for patient-centred care. The voices documented here highlight the potential for more responsive, context-sensitive approaches that recognise the complexity of lived experience and the limitations of existing institutional frameworks.
Source: Living with persistent illness and uncertainty: Patient narratives on Lyme disease in Nova Scotia, Canada; Marilyn Cox,
https://www.sciencedirect.com/science/article/pii/S0277953626008191?via%3Dihub
(C) Lyme Borreliosis Foundation
