I write about nature, but when Milly fell ill with a mysterious disease, it never occurred to me that a long-forgotten tick bite could be the cause.
I have many reasons to feel guilty. I am a writer on nature topics who preaches the importance of a wild, free childhood – and my daughter became chronically ill as a result of a single trip to the countryside. I am a journalist whose job it is to ask questions and cast doubt, yet I did not demand better answers from the NHS (National Health Service) doctors. But the guilt is most painful when I recall a cold, rainy day in October 2021.
Milly’s U10 football team was playing against the best team in the league. Milly, who was player of the year last season, used to race around the pitch like a blonde bundle of energy – but by then she had lost her enthusiasm for the beautiful game. That morning, she didn’t want to play at all: she was tearful and exhausted. Outwardly, there was nothing wrong with her: she wasn’t coughing, she wasn’t nauseous, she didn’t have a fever. Her twin sister, Esme, was playing, but without Milly they would have been one player short. I told her they needed her. She set off stoically, but she couldn’t step onto the pitch. Instead, she curled up in a ball, completely exhausted and desperate, next to her coach. It was raining. The team lost 15–1.
My stomach churns when I open the notebook in which I recorded my daughters’ football matches (I was tragically enthusiastic). Under the results for the 2021/22 season, I wrote in several places: “Milly is ill” or, even worse, “Milly played ¼”, “Milly played ½”. While we constantly encouraged or forced her to live a “normal” life, Milly became increasingly ill. We had no idea what was wrong with her. She looked unwell every morning, with dark circles under her eyes. She complained of constant fatigue, said she “couldn’t concentrate” — she later learned the term “brain fog” — and mentioned strange, stabbing pains, mainly in her legs when walking. Soon she couldn’t even go to school. The lockdowns ended, but for Milly, my wife Lisa and me, this became a permanent state of affairs.
What we didn’t know at the time – and only found out this spring – was that Milly’s body had been invaded by an insidious bacterium called Borrelia burgdorferi. This pathogen hides in connective tissue, confuses the immune system and wreaks havoc. Milly had Lyme disease, named after the coastal town of Lyme, Connecticut. This bacterial infection is not contagious from person to person, but is spread by ticks: tiny, blood-sucking arachnids that attach themselves to human skin in the countryside, via other mammals, especially deer. In North America, 476,000 cases are reported annually, and the number is steadily increasing. Global warming is making ticks, their bacteria – and human diseases – more common.
In North America, where there is also a species of tick that can cause a bizarre meat allergy through another bacterium, awareness is growing. Numerous American and Canadian celebrities have spoken about their years-long battle with Lyme disease, from Bella Hadid and Avril Lavigne to Justin Bieber and Justin Timberlake. At the same time, the disease has long been the subject of controversy, particularly regarding the existence of a long-term, treatment-resistant form. Most conventional medical positions question the existence of so-called “chronic Lyme disease”.
However, the number of diagnoses speaks for itself. The UK Health Security Agency recorded 1,581 confirmed cases of Lyme disease in England in 2024. However, according to Jack Lambert, an infectious disease specialist at Mater Hospital in Dublin, 70,000 cases are recorded in France each year. “In both the UK and France, 5-10% of ticks carry Borrelia. So do ticks only like to bite the French?” Lambert asks. “Or is it rather that cases are underreported in the UK? Ticks are everywhere. There are lots of people with unexplained illnesses – summer flu, migratory arthritis, strange neurological symptoms. And when GPs, neurologists, rheumatologists and infectious disease specialists ask what the cause could be, Lyme disease is at the bottom of the list.”
How did it happen that we – and everyone else – failed to notice that the bacteria were quietly taking over Milly’s body?
In 2021, Lisa took her to the GP. It was a relief when the blood tests ruled out several life-threatening possibilities – it wasn’t cancer, thank goodness. The stabbing pains led us to a neurologist, who was unhelpful and didn’t even consider Lyme disease. We sought a second opinion from a general paediatrician, but they turned us away.
At nine years old, Milly didn’t just play football: she loved to dance and swim, and she loved school. We still joke that she’s the kind of annoying person who’s good at everything (she definitely didn’t get that from me). Her uncle nicknamed her “Mensa Milly” because she was lightning fast at maths and English. At the same time, she was a dreamer, creative, sociable, angelically sweet, with a very silly sense of humour and an incredibly infectious laugh. We rarely hear that now.
Milly became increasingly exhausted and attended school less and less. Lisa is a youth counsellor, which helped a lot, and we both tried to organise our work so that someone could always be at home with her. We tried to create a calm, positive environment. Milly slept a lot and ate healthy, home-cooked meals. She wasn’t confined to bed, but she usually got up after 11 a.m. with her hair all messy. She filled her room with soft blankets, a Jellycat Snow Dragon and plants. Our dog, Betty, also provided comfort, licking her hand every day as if she wanted to heal her. She read, listened to audiobooks and watched television. When Esme and their younger brother Ted came home from school, she played Minecraft with them.
We needed an official diagnosis – for Milly’s sake, for our own sake, and to explain her increasingly frequent absences from school. The headteacher was understanding. We were lucky that Esme, who was healthy, attended school every day, so we weren’t suspected of being one of “those families” accused of encouraging truancy.
Not everyone was so understanding. I don’t blame them. We didn’t understand Milly’s illness either. As time went on, she became more and more withdrawn. What was wrong with her? Was she just anxious? Was it all “in her head”? Could she be persuaded to get up and go out? We clung to our own reality: Milly was a cheerful, energetic little girl who had fallen ill.
Finally, the NHS diagnosis came: ME/CFS (chronic fatigue syndrome). This was extremely frustrating. Milly fell ill immediately after a global pandemic. Occam’s razor – the principle that the simplest explanation is the most likely – suggested that it was long Covid. We thought she had caught the virus in the summer of 2021 but had not been diagnosed. Shortly afterwards, she tested negative for antibodies, and then in early 2022, Milly definitely contracted Covid, along with the rest of the family.
We consoled ourselves with the fact that there would not be much benefit in belonging to a long Covid clinic. NHS support – at least in our region – is minimal for both long Covid and ME/CFS. There is no cure and no meaningful follow-up. The specialist assigned to Milly changed jobs; we have not had a new appointment with a specialist since February 2024. We received the usual advice: careful management of activities, avoiding overexertion and worsening of symptoms.
As a diagnosis without a treatment pathway, ME/CFS is a dangerous dead end. It is clearly an umbrella term covering several conditions that are poorly understood by modern medicine. We have met people who have been cured by talk therapy. A friend of ours said that her ME disappeared after she received psychological treatment in her twenties and realised what she was “gaining” from being constantly tired: an escape from pressure and fear of the world. What could Milly have gained from being tired? Why would a nine-year-old child decide to become ill? Had we unwittingly put too much pressure on her?
We tried to remain open-minded. We tried a form of talk therapy called MindBody Reconnect, which had given a friend of ours a new lease of life. Milly didn’t enjoy the expensive online sessions, but she stuck with them. I’m sure it helps some patients. For Milly, it was a disaster. She became convinced that she was responsible for her illness because she couldn’t “think” her way out of it. More guilt for us. Lisa sought out alternative treatments: gut microbiome tests, nutritionists, mushroom extracts, reiki, biodynamic massage, healers, even a medium who supposedly “sent away” 17 spirits from our house. Nothing cured Milly, although we continued with the massage because it gave her a little boost each week.
In her last year of primary school, Milly could manage at most half a late morning. We walked her there, hoping that the gentle exercise would help. She trudged along, wrapped in her coat. When she started secondary school, we and the extremely kind staff at SENCOS worked out a part-time timetable. Milly lasted a week. We had to take her out of school. Without easily accessible social connections, she felt too anxious or tired to maintain her friendships.
“How is Milly?” people would ask. “Same as ever,” we would reply. In fact, she was becoming increasingly exhausted and withdrawn. “Are you home schooling her?” they would ask. “Not really,” we would reply. She was mostly too tired. On the days when I wasn’t working, I planned little educational outings – to the Castle Museum in Norwich or to the beach to watch the erosion – but she was too ill. Even the shortest walks proved too much. She could only manage one hour of maths a week with a teacher friend of ours.
By the autumn of 2024, Milly had spent more than a quarter of her life ill and had not attended school for a whole year.
She became interested in Japanese cuisine and cooked a lot at home. She attended a Dungeons & Dragons group every two weeks and loved deep fantasy worlds. She was still empathetic, sensitive, and at times surprisingly strong physically.
When she turned 13, Milly took the decisive step to find out what was really wrong with her. Hearing about Miranda Hart’s health struggles, she bought her audiobook. In the book, I Haven’t Been Entirely Honest With You, the comedian writes about her 30-year battle with debilitating fatigue and sceptical doctors – and how she finally discovered she had Lyme disease. Unusually, Milly asked Lisa and me to read the book too. She identified with it very strongly.
“Did we ever test Milly for Lyme disease?” I asked Lisa. We had considered it before. Lisa looked through the GP’s blood tests and found that everything had been checked in the early stages. Milly was negative: she had no Lyme antibodies.
However, we didn’t know that there are many medical dogmas and misconceptions surrounding Lyme disease. According to the few real experts, this probably means that thousands of cases remain undiagnosed in the UK alone. We only knew what most people know: if you are bitten by a tick, watch for a bow-tie-shaped rash (which may also be a solid red colour). If it appears, take doxycycline and you will recover.
This is true for many people, but unfortunately, the disease is much more complex than that. You may not even notice the tick bite. According to a survey by the Lyme Resource Centre, 41% of those diagnosed with Lyme disease did not remember being bitten at all. This is not a matter of carelessness: even a sand-grain-sized nymph tick can transmit the infection. A bite does not necessarily cause redness. Even after antibiotic treatment, you may not get better. And if you have the ELISA blood test used by the NHS, it will give a false negative result in about 50% of cases. This test looks for antibodies – but the Lyme bacteria hide and are able to trick the body into not producing antibodies. This is exactly what happened to Milly.
When we read Hart’s story, Lisa heard about a private doctor in a Long Covid Kids charity group who had achieved good results with some patients. After what felt like too long a wait, we paid for a second opinion. In December, we went to a clinic in London that felt more like a spa. Dr Ben Sinclair is a charming former prison doctor in his forties. He had contracted long Covid and successfully treated himself; it later turned out that he also had Lyme disease. Since April 2024, he and his small team have examined 2,500 patients who showed symptoms suggestive of long Covid, Lyme disease or both. There is a possible link between the two, Sinclair told us: in many patients, Covid suppressed the immune system, allowing the Lyme bacteria, which had been lurking in the body at low levels without causing problems, to multiply rapidly. According to one study, 13.5% of people in Western Europe have serological evidence of the bacteria in their bodies.
He questioned us in detail, especially about a 2021 Whitsun holiday in the Lake District. I had forgotten, but Lisa remembered that Milly had been bitten by a tick. It wasn’t a dramatic event. In 2020, I wrote a book called Wild Child about the importance of nature in children’s lives. Our children all attended forest school, where we learned to watch out for ticks. We successfully removed ticks from Esme’s head and Ted’s skin and watched for the tell-tale rash.
On that holiday, Milly and her siblings were playing in the fern undergrowth. Later, we found a tick on Milly’s neck. I removed it quickly and cleanly. No rash appeared. In the photos, Milly looks healthy and radiant. There were no obvious symptoms, although Lisa remembers Milly being more tired that summer. At the end of the consultation, Sinclair said he thought Milly had Lyme disease. I was surprised at how certain he was.
Instead of an ELISA, he recommended a T-spot test, which measures the interferon response of T cells to bacterial antigens. This is the gold standard for diagnosing tuberculosis, a bacterium that similarly hides in tissues and organs. For Lyme disease, this test is not available on the NHS, so the blood sample had to be sent to a laboratory in Germany. We left the doctor’s office in a daze and took Milly to see the Jellycat figures at Selfridges on the way home. I could have cried. Later, I did cry.
It took two months to get the blood tests done, partly because Milly developed a phobia of needles. The results were dramatic. Milly’s body showed high levels of Borrelia activity – the bacterium that the NHS blood test had failed to detect. She also had co-infections with Babesia (a parasite) and Bartonella (a bacterium), which can also be spread by ticks and cause serious illness. These further worsened her condition. Her exhausted immune system was unable to fight them off. The borrelia infection was recorded with a baseline value of 430.50. Sinclair only later revealed that this was one of the highest values he had ever seen.
This news evoked strong emotions. In my case, mainly guilt. I write about the beneficial effects of nature on children’s minds and bodies. In this case, nature made my daughter seriously ill. And why wasn’t I more persistent in seeking answers? At least Lisa never gave up. In my defence, I can only say that I adapted to Milly’s needs. Together with Lisa, we provided her with tremendous, loving care: food, time, faith, comfort and, above all, acceptance.
It is much harder to accept the denial of mainstream medicine. In the UK, the NHS and NICE do not recognise ‘chronic Lyme disease’ (although they do acknowledge that some patients treated for Lyme disease may have persistent symptoms – the NHS calls this ‘post-treatment Lyme disease syndrome’). Many infectious disease specialists do not believe that Borrelia can survive treatment with doxycycline, which is usually – but not always – effective.
The NHS failed Milly.
Due to the misdiagnosis, she spent a quarter of her life battling chronic illness.
Professor Jack Lambert treated patients in New York in the 1980s, before HIV/AIDS diagnostic tests existed. He compares the medical openness to new treatments at that time with today’s lack of interest in Lyme disease. He now lives in Dublin, has thousands of Lyme patients, and sees five new patients a week. Many of them, he says, are victims of years of “medical gaslighting,” where doctors do not take their symptoms seriously or even consider the possibility of Lyme disease. “The strange thing about Lyme disease is that the medical community has devoted all its energy to denying its existence and complexity,” he says.
Nevertheless, understanding of Lyme disease has advanced greatly over the past decade, especially in North America. Monica Embers, professor of microbiology and immunology at Tulane National Primate Research Centre in Louisiana, has shown in more than twenty years of research and numerous peer-reviewed studies that Borrelia can survive doxycycline treatment. “The assumption that doxycycline is the be-all and end-all is wrong. We need to do better than that,” she says. “No single antibiotic is going to help everyone.”
His research supports what doctors are seeing in practice: a combination of antibiotics may be able to overcome the disease. Another, smaller study found that combined antibiotic treatment resulted in “complete remission” in cases of severe neurological symptoms. Doctors report a 60-70% success rate after treating hundreds of patients. However, according to NICE’s 2018 guidelines, which have not been updated since, “The available evidence does not show any benefit from prolonged antibiotic treatment for persistent symptoms.”
“What evidence does the NHS have that people are cured after three weeks of doxycycline?” asks Lambert. “None. I treat infections every day. If they don’t improve after two weeks of antibiotics, I continue to treat them. But with Lyme, they say, ‘It’s post-treatment Lyme syndrome. We can’t give them any more antibiotics.’ Where is the science in that? It makes no sense.”
Part of the reason the medical community does not recognise chronic Lyme disease, says Embers, is because it is extremely complex: the symptoms can be autoimmune in origin, inflammatory or signs of a persistent infection. According to Lambert, all three factors need to be treated, and although guidelines warn against long-term antibiotic use, some doctors will consider treatment lasting up to a year if the patient’s condition improves.
Sinclair makes a similar statement: 60-70% of his patients show good recovery with a combination of antibiotics. “I never claimed to cure people,” he says. “My goal is to restore function, reduce symptoms, and bring the body into a balance where the immune system can do its job.”
Milly and I accept these odds. At the same time, our intelligent, quick-witted daughter has developed a deep scepticism towards all treatments after experiencing the failure of the NHS and alternative therapies. It took weeks of careful discussion before she agreed to try the combination of antibiotics. At that point, we hadn’t told her that these drugs can make some people feel worse. The Jarisch-Herxheimer reaction – diarrhoea, extreme nausea, inflammation – occurs when the immune system reacts to toxins released from Borrelia bacteria killed by antibiotics. Not everyone can tolerate this treatment.
In May, she started the Sinclair protocol with two antibiotics and herbal supplements to support her digestive system, which is stressed by the strong drugs. Due to NICE guidelines, this is not available within the NHS. We went back to the GP with Milly’s blood results and asked if the NHS would cover regular monitoring of her heart and blood values during treatment. We were told no. The NHS had failed Milly: it had misdiagnosed her, allowed her to spend a quarter of her childhood battling a chronic illness – and now it was refusing to help.
Private treatment is unaffordable for most people. We used cheaper herbal remedies through a non-profit clinic, but the initial T-spot blood tests cost £2,000. The first three months of treatment – medication, supplements, consultations and tests – cost a further £3,884.50. We are extremely fortunate to have been able to afford this.
Throughout the summer, Milly continued to get up late, was eerily pale and felt very tired. But maybe she had got a little stronger? We took her to a music festival and she didn’t collapse afterwards. Was it just the holidays, the sunshine, being close to her siblings? In August, we received the blood test results after three months of antibiotic treatment. We were shocked. Her borrelia level had dropped from 430.50 to 6. The treatment had virtually eliminated the infection.
Now we are full of hope – and caution. The numbers still need to drop below 0.5, says Sinclair, who has modified the antibiotic regimen. We are also continuing with herbal treatment. School has started again – without Milly for now – and she is still very tired. “Sometimes physical recovery comes later,” says Sinclair. “That’s the hardest part. You often get to the point where you say, ‘We’ve done everything we can, the values are good, but the person in front of me still doesn’t feel well. Certain types of Milly’s natural killer cells – indicators of the state of the immune system – are still too low. Sinclair uses a military analogy: “Imagine a battlefield after the war. It takes six to twelve months to remove the burnt-out tanks. It takes time to return to full operation after the enemy has been removed.”
What awaits those who are unknowingly infected with Lyme disease or who become infected in the coming years?
In the United States, the Steven & Alex Cohen Foundation has invested more than $50 million in Lyme research projects over the past decade. Embers is optimistic that US government agencies are taking tick-borne diseases more seriously. He is working on an improved blood test called Lyme Seek, which he hopes will be on the market next year. “Our sensitivity and specificity are over 90%,” he says.
In Europe, Lambert is shocked by the lack of EU and government funding for Lyme research. “This is a disease that needs compassionate doctors: doctors who recognise the condition, treat patients and seek better diagnostics and better therapies,” he says. “At the moment, the medical community is too dismissive of the idea that Lyme disease is a complex disease. It deserves scientific funding.”
And what does the future hold for Milly?
“Having tried so many things, it’s hard to believe that this will really work,” she says. “I’ve lost faith in medicine and professionals. I don’t feel much better either. It’s hard to think about the future right now — where my life is going.”
The emotional scars run deep. But we hope Milly will recover physically. If her immune system recovers and she defeats Borrelia, she will be able to live an active, “normal” life. We don’t know if she will be able to fit back into school. Still, I collect stories in which childhood illness becomes a source of creativity in adulthood – and I hope.
We have a diagnosis, we have treatment, and we have hope. And perhaps most hopeful of all: sometimes, in the early evening, Milly starts clowning around with her little brother. I hear the infectious, unrestrained laughter. Milly’s laughter.
She’s here. She’s still Milly.
How lucky we are to have her in our lives.
Source: weborvos.hu
