Lost in the Lyme: Navigating Identity in the Wake of Post-Treatment Lyme Disease Syndrome
Post-Treatment Lyme Disease Syndrome (PTLDS) is more than a lingering illness; it's a silent thief that steals fragments of one's identity. Those affected often find themselves grappling with persistent pain, fatigue, and cognitive challenges, which overshadow their former selves. Hobbies and passions fade into the background as everyday tasks become insurmountable. The person they once were—a vibrant, active individual—seems like a distant memory. PTLDS doesn't just impact the body; it reshapes the soul, leaving many to mourn the loss of their identity while struggling to rediscover who they are amidst the fog of chronic symptoms. This journey is also one of mental health struggles, the desperate and illicit use of veterinary drugs, and rejection by the medical community.
PTLDS exists in the grey area of science, where personal anecdotes intertwine with ongoing research. Patients' stories of relentless fatigue, pain, and cognitive struggles highlight the profound impact of this condition, yet these lived experiences often outpace scientific understanding. While emerging studies strive to unravel the complexities of PTLDS, the disconnect between patient experiences and clinical validation creates a challenging landscape. This intersection of anecdotal evidence and scientific inquiry underscores the urgent need for more comprehensive research and empathetic care approaches to bridge the gap and bring clarity to those suffering in the shadows.
I have travelled across the country, from the picturesque landscapes of Cornwall to the remote beauty of the Outer Hebrides, engaging with individuals affected by Lyme disease. Each conversation reveals unique struggles and shared resilience, highlighting the widespread impact of this silent pandemic. Through these heartfelt discussions, I’ve encountered stories of pain, perseverance, and the relentless quest for understanding and validation, painting a poignant picture of the human spirit's endurance against the backdrop of PTLDS.
As an immunologist and photographer who is regularly in the outdoors pulling ticks off myself, this is a story I couldn't not tell. I’m looking to hear from people affected by Lyme disease or PTLDS - if this is you, or someone you know, please get in touch via email at williamejw@outlook.com or Instagram @wjwtravel.
Steve & Chris
Before illness, Steve’s world revolved around solving problems.
Working in cyber security, travelling extensively for work and studying astrophysics in his spare time, he was the sort of person who never sat still. His wife, Chris, remembers a man who could spend hours immersed in complex spreadsheets before returning home to play with their young son.
Today, she says, there are days he struggles to spell his own child’s name.
Their story did not begin with a tick bite. At least, not one they remember.
Instead, it began with a succession of unexplained illnesses that slowly dismantled the life they had built together.
Returning home from Goa, Steve developed meningitis. Chris recalls how he initially tried to discharge himself from hospital before deteriorating rapidly and being admitted to intensive care just hours later. Although he recovered from the acute infection, she says he was never quite the same afterwards.
Years later, following the death of his mother from cancer, his health deteriorated further.
Persistent back pain became so severe that he eventually collapsed. Doctors suspected slipped or herniated discs. Twelve weeks of recovery became months, then years. Powerful opioid painkillers brought little relief, leaving Steve in constant pain. Eventually, surgeons discovered extensive damage around the L5 disc in his lower spine. An operation costing around £25,000 relieved the paralysis affecting his legs and allowed him to walk again. Steve and Chris believe years of untreated Lyme disease and the chronic inflammation they associate with it contributed to the deterioration of the tissues in his spine, although they recognise that it is impossible to prove a direct causal relationship.
Yet the surgery failed to explain everything.
Although Steve could walk again, many of the symptoms that had defined his illness remained. Brain fog clouded his thinking. His memory deteriorated. Chris describes episodes of overwhelming neurological confusion, emotional volatility and crushing fatigue. Recurrent chest pain sent him to Accident & Emergency departments every few weeks, each episode raising fears that something new was wrong. While many clinicians struggled to explain the wider picture, Chris recalls that the cardiologist who assessed Steve took his symptoms seriously and even suggested that Lyme disease can have cardiac manifestations. Even so, no single diagnosis seemed able to account for the breadth of his illness.
At one stage, Chris recalls feeling that doctors had become so focused on Steve’s back that they struggled to accept anything else could be happening. The physical injury explained some of his symptoms, but not the cognitive decline she witnessed every day. The man whose career depended on analysing complex systems now found himself unable to complete a simple spreadsheet.
Eventually, almost by chance, they watched a television programme about people living with Lyme disease.
The stories felt painfully familiar.
The possibility had been raised once before. Around a year earlier Steve had undergone a test for Lyme disease, but the result had been reported as negative and the diagnosis was dismissed. Believing they had reached another dead end, they continued searching for answers elsewhere.
However, the television programme prompted them to seek another opinion at a specialist clinic in Hemel Hempstead.
Further investigations there suggested that Steve had Lyme disease including neuroborreliosis. For Chris, it was the first explanation that seemed capable of connecting the many seemingly unrelated symptoms that had dominated their lives for years.
Before this diagnosis, Steve had been admitted to hospital repeatedly with episodes of sepsis-like illness every few months. Chris says that following treatment, including a two-week course of doxycycline, those recurrent admissions stopped. However, many of his neurological symptoms remained, but she believes the treatment marked a turning point.
Pain, however, continued to dominate everyday life.
Chris describes watching doctors prescribe increasingly powerful opioid medications with little benefit. Eventually Steve became a prescribed medical cannabis patient, which she says brought greater relief than the opioids had. Even so, there were periods when the relentless pain, uncertainty and loss of independence became overwhelming. Chris recalls times when Steve questioned whether life was worth living.
“You wouldn’t be harsh with someone who had a brain injury,” she told me. “But because you can’t see what’s wrong with Steve, people think he should just get on with life.”
The consequences reached every corner of family life.
Chris was pregnant during some of the worst periods of Steve’s illness. There were times when Steve could no longer play with his son. The confident, analytical man she had married was gradually replaced by someone fighting simply to make it through each day.
“The world awaits you,” Chris tells him whenever hope begins to fade.
The family estimate they have spent well over £100,000 searching for answers.
Private consultations, specialist clinics, overseas investigations and treatments gradually replaced holidays, savings and financial security. Eventually they downsized dramatically, leaving behind the life they had built together for a much smaller home as medical bills consumed their savings.
For Chris, the greatest frustration has not simply been the illness itself, but the uncertainty surrounding it. Different specialists have offered different explanations. Like many of the families I met, they have found themselves navigating a confusing landscape of conflicting medical opinions, emerging research and private healthcare, each offering a different interpretation of the same illness.
Across almost every interview I conducted, one theme emerged repeatedly: desperation.
Patients spoke of spending evenings searching scientific papers, joining overseas support groups and discussing treatments unavailable in Britain. Others travelled abroad in search of specialists, investing life savings in the hope of reclaiming the lives and identities they had lost.
Whether those treatments helped varied enormously, and many remain unsupported by robust clinical evidence. Yet the stories revealed something deeper, a debate about those struggling with the potential diagnosis of Lyme disease who are not supported by the current medical institutions.
Laura
When I first met Laura, she was spending almost all of her time in bed. She had been suffering from a debilitating illness for several years, one that had gradually taken away much of her independence and left her largely confined to her bedroom. I had come to photograph her and learn about her experience of Lyme disease, but what I found particularly striking was how much of her life had become centred around this one room.
Her bed was covered in blankets, pillows and all sorts of things she needed within reach. Her cat would keep her company, often lying beside her, and at the foot of the bed was a large corkboard covered in little handwritten notes. Across the middle of the board was the word 'EMBRACE', surrounded by messages such as 'I am courageous', 'I am abundant' and 'I am loved just as I am'. Some had little hearts drawn beside them. Laura had encouraged people to write positive remarks on the board, something to help her get through the days when things were particularly difficult.
I remember finding this quite moving. Here was someone who had once been incredibly active, who had worked organising events for the Department of Health, including work connected to the London 2012 Olympics, now relying on little handwritten messages to help her remain positive. I think it says a lot about the psychological impact of prolonged illness, particularly when there is no clear indication of when, or even if, things might improve.
But to understand how Laura had ended up here, we need to go back several years.
The beginning of her illness
Laura was first diagnosed with fibromyalgia in 2012, a chronic condition associated with widespread pain, fatigue and a range of other symptoms. Over the following years, her health continued to deteriorate. She was prescribed various medications, but nothing seemed to provide the improvement she was looking for. By 2016, she had reached what she described as rock bottom, and at one point she spent around a year largely confined to bed.
It was a friend who first suggested that she might have Lyme disease.
Laura underwent testing through the NHS, but the results came back negative. She wasn't convinced that this was the end of the story, particularly given the severity of her symptoms and the lack of improvement following her fibromyalgia diagnosis.
She decided to pay for further testing through ArminLabs, a private laboratory in Germany offering investigations for Lyme disease and other tick-borne infections. Laura understood the results to indicate an infection with Borrelia, the bacteria responsible for Lyme disease. However, her GP did not accept the findings as sufficient evidence of infection.
This was the beginning of what would become a long and expensive search for treatment.
She travelled to South Africa to see a doctor specialising in patients with suspected Lyme disease, where she underwent combination antibiotic therapy and received treatment intended to address possible co-infections. She also sought help from private practitioners in the UK, including the Breakspear clinic, and explored herbal approaches associated with the work of Stephen Harrod Buhner.
What I found particularly interesting was just how much Laura had researched her illness. She seemed to have explored every possible avenue, from conventional antibiotic treatment to herbal preparations and alternative therapies. She had clearly spent an enormous amount of time trying to understand what was happening to her body and what might help.
Of course, there was also a considerable financial cost, a theme commonly occuring in these stories.
Private consultations, international travel, laboratory testing and medication all cost money, and Laura described spending everything she had, and more, trying to recover. She had received some support from a small Lyme disease charity to help fund testing, but much of the expense had fallen on her.
I think this is one of the aspects of chronic illness that can be easily overlooked. We tend to think about the physical consequences of disease, but the financial implications can be enormous, particularly when someone is no longer able to work. And in Laura's case, the costs were not just associated with managing her symptoms, but with trying to find an explanation for them.
Life organised around illness
One of the photographs I took during my visit was of Laura's bathroom. Beneath a skylight, on the shelf behind the sink, were several bottles, syringes and other medical supplies. Among them were veterinary medicines that Laura told me she had sourced for herself and was using as part of her attempts to treat her illness.
I remember being quite surprised by this.
As someone with a background in infectious disease research, I was familiar with the use of certain medicines in both human and veterinary medicine. Some drugs have applications in both fields, although their formulations, dosages and regulatory approval can differ considerably. However, using veterinary medicines to self-treat a human illness can carry serious risks, particularly without appropriate clinical supervision.
I don't know whether any of these treatments were helping Laura, and I certainly wouldn't suggest that others follow the same approach. But their presence said something about the lengths she felt she needed to go to in order to find relief.
It also made me think about the relationship between patients and the medical profession. We rely on clinicians to interpret evidence, diagnose disease and prescribe treatments that have been demonstrated to be safe and effective. But what happens when a patient continues to experience debilitating symptoms and feels that conventional medicine has failed to provide an answer? That trust breaks down. Where do they turn, and how do they distinguish between a treatment that might genuinely help and one that simply offers hope? They can’t so they become willing to try anything.
These are difficult questions, and Laura's experience showed me just how complicated they can become.
Back in her bedroom, the medication was carefully organised into small plastic containers on a chest of drawers. Each had a label: antibiotics, fluconazole, sleeping tablets, allergies and Econa, among others.
It was a fairly ordinary bedroom in many ways, but the amount of medication and the way everything was arranged made it clear how much her illness influenced her daily routine.
Her bed was similarly organised. Everything she might need was kept close by, reducing the number of times she would have to get up. Her cat was there too, offering some companionship during the long periods she spent alone.
And I think that's an important part of photographing chronic illness. Much of it happens behind closed doors, away from hospitals and clinics, in ordinary bedrooms and living rooms. It's rarely something that people outside the immediate family get to see.
Life not lived
Before becoming ill, Laura had worked organising events for the Department of Health. Her last major event was connected to the London Olympics in 2012, something that must have involved a considerable amount of organisation and responsibility.
By the time I met her, that life seemed a very long way away.
She spoke about the things she could hear happening outside, about other people going about their daily lives while she remained inside her bedroom.
"Life not lived, life not lived. All I do is see and watch from the inside."
And then something she said that has stayed with me ever since:
"I can hear them living my life."
I think this was the point at which I really began to understand the effect her illness had had on her identity.
It's one thing to be physically unwell, but another to feel as though your entire life is continuing without you. The work you once did, the places you visited, the people you spent time with and the ordinary things that made up your day can all become difficult or impossible.
Laura wasn't simply describing the symptoms of an illness. She was describing the loss of a life she had previously known.
She also spoke about her fear of losing her home in Margate. Having spent so much money trying to find treatment, and with her ability to work severely affected, financial insecurity had become another source of worry.
This is something I think deserves much more attention when we discuss the consequences of chronic disease. The impact extends far beyond the individual symptoms. Employment, finances, relationships, independence and mental health can all be affected, and these consequences can continue long after the original illness began.
Behind the diagnosis
I keep coming back to the corkboard at the foot of Laura's bed.
It was covered in small handwritten notes, many of them positive affirmations intended to remind her of the things she still had and the person she still was. Some were written in red pen, others in black, and many had little hearts beside them.
There was something quite touching about this. Laura had spent years searching for answers, undergoing tests and trying different treatments, yet here was something as simple as a board of encouraging messages helping her through the day.
I don't think I fully appreciated its significance when I first photographed it.
Looking back at the images now, several years later, I find myself spending more time looking at the little details. The notes, the medication, the things arranged beside her bed and her cat keeping her company. They are all small parts of a much larger story about how someone adapts when their life changes so dramatically.
I also think it's important to acknowledge the uncertainty surrounding Laura's diagnosis. Her symptoms were clearly debilitating, but that does not necessarily mean that every symptom could be attributed to an ongoing Borrelia infection. Nor does it mean that the alternative treatments she pursued were effective.
As a scientist, I think these distinctions matter. There is a responsibility to separate what we know from what we suspect, and what has been demonstrated through research from what someone believes has helped them.
But I also think there is a responsibility to listen to people who are suffering, even when their experiences don't fit neatly into an established diagnosis.
That, ultimately, was why I wanted to photograph Laura.
I wasn't there to determine whether she had an active Lyme infection or to assess the effectiveness of the treatments she was receiving. I was there to understand what years of debilitating illness had done to her life, and how she was trying to cope with it.
Her story is not simply about Lyme disease. It's about the loss of independence, the search for answers and the extraordinary lengths people can go to when they are desperate to recover.
And perhaps most importantly, it's about the person who exists beyond the diagnosis.
I think the words on that corkboard say quite a lot about that person. Someone who, despite everything she was experiencing, was still trying to find reasons to remain positive.
But it is her own words that I remember most clearly.
"I can hear them living my life."
I have photographed people living with a number of different infectious diseases, and one thing I keep coming back to is how easily we can reduce someone's experience to a diagnosis, a collection of symptoms or a statistic. Thier identity is lost by others and by themselves.
Laura's story reminded me that behind all of these things is a person whose life may have changed beyond recognition.
And I think that's something worth remembering whenever we talk about the burden of disease.
