If you see someone with Lyme disease, you might not know they are suffering. But this tick-borne infection can leave people bedbound, putting their lives on hold for years. Thousands are infected with it in the UK every year, but awareness is low, both among the public and medical professionals. Just getting a diagnosis on the NHS can be a struggle. People have been pushed from doctor to doctor. Some are told that they don’t have Lyme disease, even though they’ve got the positive test to prove it. What’s more, questions remain over whether it can be passed from human to human. This is the story of four people from the UK, their battle with Lyme disease, and a divided medical industry.
I n a perfect world, getting diagnosed with Lyme disease is relatively straightforward. You notice a tick bite on your skin and after a few days a bull’s-eye rash appears around the bite. You visit your GP who starts you on four-week course of antibiotics and you recover. Simple, job done. But this series of events does not happen often enough. With a lack of public awareness, a disease that presents similar symptoms to many other conditions and a global medical debate over whether particular forms of the disease exist, it leaves doctors with a difficult task to recognise the patient’s illness. Natasha Metcalf, 31, spent years getting misdiagnosed, seeing multiple doctors that offered different diagnoses and different treatments. It all started one morning when she woke up feeling low at boarding school. She had swollen glands and was suffering from night sweats. She was just 16, her parents were in Hong Kong as her father was a pilot for an airline based there, and doctors wrote off her symptoms. One minute she was told she had homesickness, the next minute it was glandular fever or depression. For a while she would bounce back, but in 2008 when she was 23 years old she had a course of vaccinations before she was due to travel to Africa on holiday that made her feel ill. This time she didn’t recover. “I think what happened is that it overloaded my immune system and then that was it, everything that had gone into remission came out of remission and I was struck with a full blown chronic illness,” she says. She was told she had chronic fatigue syndrome, also known as myalgic encephalomyelitis (ME). There were treatments available, such as pacing therapy, which is making sure you schedule in periods of rest into your day-to-day activities. The seizures she was experiencing were put down to panic attacks. “It was clear that there was a lot more going on, I wasn’t feeling particularly anxious at the time,” she says.
Like Natasha, Justine Shuttleworth, 47, was misdiagnosed multiple times before testing positive for Lyme disease. She was very busy, running a successful property business while being a single parent. But when she got ill, doctors said it was because of her anxiety over perimenopause, the period of a women’s life shortly before she can no longer get pregnant naturally. Like most people she didn’t question her doctor’s diagnosis and began taking the prescribed hormone replacement treatment, but things were not getting better. After seeing 14 doctors, including nine psychiatrists and a hormone specialist, she was beginning to lose hope.
"I walked out of the front door and everything was odd"“I walked out of the front door and everything was odd. It was like the sky had fallen on top of me and I thought this is weird, something is wrong. I started getting problems with my heart and anxiety hit in, I would walk around feeling that I was not quite right,” she says. After being given several different anti-depressants, Justine was then told she had psychosis; a severe mental condition in which thought and emotions are so impaired that contact is lost with external reality. “I could not work out why the walls were coming towards me. I had electric shocks all the way through my body. It was like having vertigo and everyday I did not know which reaction I was going to have,” she says.
Similarly, Katherine Brookhouse, 49, also struggled to get a definitive diagnose for her daughter Hayley’s long term illness. It all started one morning when Hayley fell ill with a throat infection. Four years later she hasn’t recovered; she is now 23. Hayley experienced fatigue, impaired vision and heart palpitations. After a visit to her GP she was referred to a rheumatologist, a doctor who specialises in arthritis and autoimmune diseases and a neurologist, a doctor who specialises in disorders of the nervous system. At the time she was diagnosed with chronic fatigue and fibromyalgia. Kate Bloor, a sociologist and an academic researcher for Lyme Research UK feels that the reason behind misdiagnosis is a complex issue. She thinks that the answer to improving diagnosis is better-focused research but warns that it will always be a human process. “Even if we had perfect science, which we don't, I believe it would be very difficult to put that into practice and make it work across the board, because systems are not perfect,” she says.
Whilst battling through that period of having doubts over the cause of their symptoms, many Lyme disease patients with long term conditions say they were dismissed by doctors. This was the case for Emma Dolan-Horlock, 41, who has been dealing with symptoms that have got progressively worse over 14 years. She was fit, healthy, walking around and running a successful business, now she uses a wheelchair and is bedbound. Her life has been a struggle, as her illness has slowly chipped away each day, month, year, taking something from her, taking her further away from a life she now longs for again. During this time, she had thyroid disease, heart problems and numerous other symptoms that fall into the category of Lyme disease, but a diagnosis wasn’t forthcoming. Then one day in June, 2015, the the phone rang and her sister told her to quickly turn the television on. She told her there was a person talking who sounded like he could be talking about her. That person was the Phones4U billionaire John Caudwell and he was explaining his son’s and his own story about being diagnosed with Lyme disease.
"I did have a Lyme test done when they suspected I had Lyme disease in hospital and it came back negative and I just left it at that"“A lot of what he said did ring true, but I did have a Lyme test done when they suspected I had Lyme disease in hospital and it came back negative and I just left it at that,” she says. What she didn’t realise until much later was that the tests are not always accurate.
For Natasha, the lack of awareness is a major issue in tackling the disease. “The idea that if it had been picked up and treated earlier it could have been sorted out in a few weeks, with a few week’s worth of antibiotics, but leaving it becomes a very different illness to treat,” she says. When thinking back to when she might have contracted Lyme disease, Natasha thinks it might have been when she was a child growing up in Hong Kong. “We were often hiking in shorts in long grass and at the time, I had what I thought was a splinter in my leg, it was very small, I remember trying to get it out with tweezers, there was a red patch around it, but I had no idea a baby tick could be so small and I think in hindsight that would have been the tick bite,” she says. Natasha held the same belief most people have, in trusting what a doctor tells you and expecting the treatment they prescribe will cure you. Though over time, continual misdiagnosis began to erode her confidence. “I would try everything wholeheartedly and enter into every treatment plan I was given, but when it didn’t work, then you turn back on yourself and it really erodes your self confidence, because you think you are trusting these doctors and they can’t get you better,” she says. Katherine too has found being dismissed by doctor’s frustrating and although she wasn’t convinced that their early diagnosis of Hayley’s illness was correct, her focus at that time was on helping her finish university. Haley’s life at university was not like most students, she barely left her house and didn’t go to a single lecture in her final year. After battling through and graduating from the University of Exeter with a 2:1, Katherine took Hayley to a specialist clinic in an attempt to diagnose the underlying cause of her symptoms. The tests came back positive for Epstein Barr Virus in combination with not having enough nutrients in her body. After months of treatment Katherine was concerned her daughter’s condition was not improving; in fact her symptoms were actually getting worse. She was suffering from numbness on her face, losing sensation to one of her legs and suffered shooting pains. “So initially we thought, it’s the Epstein Barr’ that’s knocked her out. But while we were there, there were lots of other patients who were getting treatment for Lyme disease, and we used to live in the US so there was a strong chance that she could have been bitten,” Katherine says.
Getting a diagnosis of Lyme disease can be a difficult process and eventually Natasha got to the point where she thought the medical professionals in the UK were no longer helping her get closer to a correct diagnosis of her illness. “I felt that nobody in this country was taking it seriously, so after a recommendation from a friend, I went to see a doctor in America who specialized in complex chronic illnesses,” she says. Within a few minutes of meeting Natasha, he told her she might have Lyme disease. She hadn’t heard of it before or come across it in any of her own research, but the test results came back positive. Natasha was also told she had several co-infections and that this could complicate things further for her, as it increases the possibility of compromising the immune system. Upon returning home to the United Kingdom with a positive test result and a diagnosis in hand, she was hopeful of getting treatment. However, an NHS doctor dismissed her case, as being a false positive and no treatment was forthcoming.
"It is really hard, especially when you feel like you have done the hard work"“It is really hard, especially when you feel like you have done the hard work by finding the diagnosis and privately funding the diagnosis, but it is still not accepted,” she says. Justine’s diagnosis of Lyme disease also came following a recommendation from a friend. She was told about a naturopathologist, a health practitioner who applies natural therapies, who might be able to help her manage her symptoms with a change of lifestyle and diet. Upon visiting her, the naturopathologist explained her symptoms could mean she had Lyme disease. Armed with a possible diagnosis Justine went to her GP, but she was denied testing on the NHS. Convinced it could be Lyme disease, she took it upon herself to personally foot the bill for her blood to be privately tested. This was done at ArminLabs, a laboratory based in Germany - the results confirmed she had Lyme disease and two co-infections. For Emma, it wasn’t until she stumbled across an article about the insufficiencies of the Lyme disease testing done by the NHS, that she thought perhaps the previous tests she had might not have been as definitive as she initially expected. With nothing to lose she sent her blood for tests at ArminLabs and it came back positive too. After revisiting her GP, she was given a course of antibiotics and they retested her on the NHS, but she was warned that if the test result came back negative again, no further treatment would be available. But referral to an infectious disease consultant was an option. The NHS test did come back negative and although Emma was referred to an infectious disease consultant, they just discharged her on the first visit. “I got a nice letter back to say that although there was complete empathy for the fact that I was very unwell and although tests results had come back to show that my immune system was suppressed and not working properly, they couldn’t explain why that was and that on this occasion they had put it down to unexplained symptoms,” she says. Katherine also ended up using a private clinic, Breakspear Medical in Hertfordshire, to get Hayley tested. Following previous misdiagnosis, the family had taken it upon themselves to do research into what else her illness may be.
"It was like winning the lottery but losing the ticket"When Hayley was finally diagnosed with Lyme disease, Katherine says her friend summed it up perfectly. “It was like winning the lottery but losing the ticket,” she says. From the research Katherine had done she realised there was a possibility other members of the family might have been bitten by a tick and have Lyme disease too. Initially she didn’t want to pull at that thread, as she was focusing on caring for her daughter, but after feeling more fatigued and noticing her memory was starting to be effected, she got herself tested and because of her worry that the whole family could have Lyme disease she got her mother Myra tested too. Both tests from ArminLabs came back positive for Lyme disease.
Living With Lyme
F or some Lyme disease patients, their symptoms just won’t go away. Diagnosis brings relief, but it can just be the start of a much bigger struggle. Justine recalls the moment her tests came back positive for Lyme disease and how relieved she was. “I just knew I could start trying to get better. It’s only after you start to get better that the feelings come, but at that point, you’re just struggling,” she says. “It is like holding onto the end of the cliff and just praying every single day that you are going to live through the next day. And suddenly someone is saying you are not mad.” Natasha also felt that sense of relief when she was told she had Lyme disease. She suddenly had a name for what she was dealing with but, “then you learn it is a lot more complicated than just a case of taking a few week’s worth of antibiotics. If you have a chronic form of this illness you have to look at readdressing the whole immune system, so it becomes a lot more daunting,” she says. Likewise, Emma was “incredibly excited” to finally have a name for all the symptoms she had been experiencing. “I can’t tell you how excited I was about the fact that I suddenly had an actual thing that could potentially be cured or treated,” she says. Katherine’s first thought when her daughter Hayley was diagnosed was “great fantastic, we know what we’re dealing with.” What she hadn’t expected however was the difficulties Hayley would face next. “You then realise that actually Lyme disease is very complicated and it’s very difficult to treat and that you’re abandoned by the NHS, you’re laughed at by consultants and you’re going to have to be the one’s that find a way to get your daughter better,” she says. Initially Katherine felt angry when she found that she also had Lyme disease. She was tired, suffering with aches and pains, but she knew she was not suffering as badly as her daughter, and she felt like she didn’t have time to be ill. But then Katherine got used to the idea. “In a way it’s a good thing I know now that I’ve got Lyme disease. It was like a wake up call for me, I have to take care of myself, which I probably hadn’t done for two years,” she says.
Dealing with long term debilitative symptoms can be mentally and physically draining. Justine says that she experienced brain fog and lost her cognitive memory when her illness was at its worst. “I could not be in a room with more than one person, as I could not understand the conversations. I could not take in what they said and come out with an answer,” she says. Whilst Emma’s only relief is to lie down. A carer comes every morning to help prepare breakfast and do the washing, but the rest of the day is spent in bed. “These four walls are pretty much my world at the minute” she says. She tries to keep herself busy by searching the Internet for new information on Lyme disease, and by looking for diets and supplements that can help her manage her illness. As she no longer had the energy to run it, she had to sell her company, Your Business, which was a media organisation that publicised the business sector in Liverpool,. “It broke my heart, as I’d put much so time and effort into building the brand and building the company,” she says.
"I would be on the sofa watching TV and suddenly I’d start convulsing and having very alarming neurological symptoms"Natasha used to have multiple seizures a day. “I would be on the sofa watching TV and suddenly I’d start convulsing and having very alarming neurological symptoms,” she says. It left her feeling terrified, she found herself spending days in bed in pain, feeling exhausted, weak and not being able to go down the stairs unaided. It was a “restrictive” life she says, even to the point where her light sensitivity got so bad, she was living her life behind closed curtains. Things have improved over time and now Natasha is feeling much better than she was four years ago. But she does have to be careful and pace herself. “I still have some neurological issues, in terms of dizziness, I still don’t feel comfortable driving, I have to be careful not to over do it”. Although she has been able to do some volunteering work in the past few years, she’s found it difficult to be in an office environment because of her noise and light sensitivity. She had a career lined up in London during her second year at university, but since then Lyme disease has severely disrupted her life, to the point where Natasha feels a decade behind her peers. “I was ready to go on a path I thought would be right for me, but not being able to fulfil it is hugely frustrating. Still being dependent on my parents is not ideal and not what I expected,” she says.
Considering the NHS currently doesn’t accept that Lyme disease lasts in the body beyond a short course of antibiotics, patients find themselves looking for a variety of alternative treatments. After being diagnosed by a test from ArminLabs, Justine immediately started Intravenous antibiotics (IV) for a month, which is the infusion of liquid antibiotics into the veins. But then her treatment was changed to just oral antibiotics and she started to feel worse again. “I could feel the Lyme. I could feel it coming back,” she says. She felt her brain was stuck. She describes it like having a broken gearbox. “Your brain is in neutral and in first and it can’t go into another gear - it just stays in those gears, it’s like it can’t expand.” But, when she started the IV treatment again, her brain “began to open up again,” she explains. “It was magical to me because you use your brain for everything.” Her initial treatment also had an adverse affect on her physical wellbeing, she would get tired easily and as a result she was no longer able to go out in the evening. She had to accommodate and plan her schedule to get what she needed done earlier in the day. Now Justine has IV antibiotics once a week and oral antibiotics for the rest of the week. She has been on this system since January and has felt her health improve. “The IV saved my life - before having the IV, [it] was hell. But, I would say I’ve got 80 per cent of my life back again,” she says. Emma had already been visiting a private doctor since August last year, before she was diagnosed with Lyme disease. Dr Arun Ghosh, a private GP based in Liverpool, does not claim to be a Lyme disease specialist, but has been providing her with IV nutrients, such as Vitamin D and Vitamin C; to support her immune system. “I don’t know what I’d do actually, if I didn’t have Dr Ghosh around at the minute. Because, being so sick and not having the support of a Doctor is really quite scary,” says Emma.
Katherine’s daughter Hayley was also put on IV treatment after being diagnosed with Lyme disease, but Katherine has been using natural therapies and herbs to manage her own illness. “My energy levels have improved, but I feel my recovery will be made more difficult because of stress,” she says. The high cost of private treatment can also add to this stress. Lyme disease has had a huge affect on Justine’s finances. As she is unable to work, she had to sell her business and re-mortgage her house in order to finance her medication. Because she was denied treatment on the NHS, Justine says she turned to the private sector.. After contacting her health insurance company, she was told, they wouldn’t be able to pay the cost, as her policy didn’t cover Lyme disease.
“I pay for everything. I don’t get help from anybody, it has screwed me”Justine has spent around £250,000 on treatment over the last year and a half, and she is still paying £4,500 a month on it. She says: “I pay for everything. I don’t get help from anybody, it has screwed me.” Although it has been very difficult for her, she is concerned how others are fairing. “What happens to all the people who don’t have the money? Where do they go?” As the NHS won’t give Emma any further treatment, she now plans to go to Washington DC in the US this May for treatment. She says that in order to get treatment for six to 12 months, excluding the costs of travel and staying there, it will cost her around £60,000. Katherine has also spent around £100,000 on Hayley’s treatment both in the UK and the US.
But it’s not just the financial struggle that can affect those with long term conditions, it can also have an impact on their relationships. Justine says that having Lyme disease made her struggle to recognise her friends as people, despite recognising who they were physically. This brought on feelings of anxiety. “All those high emotions you have, those natural emotions, the animal instincts have gone.” She says that when her son got sick she lost “the motherly emotions” and relied on her family for help. “I did not see friends for a year. Very, very occasionally I’d let someone through the door. I could not go into the shop. I could not work out, it was like being in a tunnel,” says Justine. In isolation she felt there were times when she didn’t even recognise herself. Emma’s family life has also been affected by Lyme disease. “You can’t have a normal relationship, and a normal life,” she says. Her mother and father are still trying to come to terms with what Emma is going through, and as they do not live locally they face long journeys to see her every weekend.
"It doesn’t just affect me, it affects the whole family”It has been particularly difficult for Emma to explain her illness to her nieces, as they remember her running around and playing with them, but that cannot happen anymore. “It’s really upsetting for them to see that. It doesn’t just affect me, it affects the whole family,” she says. Katherine thinks her two other daughters feel angry because Lyme disease has taken over all aspects of their family life. “It stops us as a family doing any of the things we used to do and its definitely put a strain on my relationship with my husband, it makes things really difficult for us.” She describes how much more is expected of her husband now because her illness has limited what she can do. “He leaves home at half past five to go to work, he gets home at seven o’clock and then he has to help me make dinner and do jobs in the house, which he didn’t have to do before, he is under a lot of stress too, so it’s not easy,” she says. What’s more, explaining Lyme disease to friends can be a tough task. Katherine has been frustrated that some of her close friends do not understand the degree to which Lyme disease affects herself and Hayley. She feels like she has withdrawn from some of her friends because of this, but then again she realises that Lyme disease can be a very difficult condition to spot. “If you were to see me, you wouldn’t know I was ill and I think that’s the biggest problem a lot of Lyme patients have. Unless you are chronically ill and disabled and in a wheelchair, which some patients are, a lot of Lyme patients actually look fine, they look okay, they look well, but we are not okay and just because someone looks well, it doesn’t mean they are well,” she says.
Katherine says that she finds it frightening that there is not much support from doctors in this country and that people don’t believe that you have it. But she has found solace from a community of Lyme disease patients on Facebook. She says:“If you are having a really bad day and you are just pissed off at the world, someone will be there to say, you are not alone we are here to help you.” Without the Lyme Disease UK, which Natasha co-founded, Katherine feels she would be lost. Natasha decided to set up the support group in 2013, with fellow Lyme disease sufferer Louise Dean, after both felt that there was a distinct lack of support for patients in the UK.
“It’s so scary to just imagine doing this alone, without knowing anybody else who’s going through this”For Emma, who is a member of the same group, having a community of fellow Lyme disease sufferers providing constant support is invaluable. She says, “It’s so scary to just imagine doing this alone, without knowing anybody else who’s going through this.” “It’s a very isolating journey, when you’ve been through so many doctors, who have told you they don’t know what to do with you,” says Natasha. She believes that having a support group is crucial to helping people understand that there are other Lyme disease patients out there having similar experiences. The group has grown quickly and now has around 3500 members. But Natasha is also grateful to have the support of her parents. “I have had a lot of support and actually being able to say what the problem is and being able to explain that it’s a very controversial, complex illness really helps,” she says.
D octor James Douglas saw his first case of Lyme disease 25 years ago, it was unusual enough to take a photograph of the patient, and he wrote up the episode in a medical magazine. Lyme disease isn’t always easy to spot, but this time he noticed a bull’s eye rash, which is now accepted as the clearest indicator that someone may have been infected. Along with an assessment of whether the patient may have been exposed to it. Dr Douglas has been a GP in Fort William in the West Highlands of Scotland since 1975, the year that Lyme disease is widely thought to have been first described after a group of mothers in Old Lyme, Connecticut in the United States noticed an outbreak of rheumatoid arthritis in children, an autoimmune disease that causes inflammation in the joints. Lyme disease is a bacterial infection that is spread to humans by infected ticks that latch onto the skin of mammals and bite them. Deer and sheep ticks are the most commonly recognised infected ticks in the UK, and the disease may have been around for much longer than was first thought. Skin rashes similar to those found on Lyme disease patients were found by German and Russian physicians in the late 1800s. The erythema migrans, commonly known as the bull’s eye rash, is typically around 15cm across according to the NHS, but it can vary in size and it isn’t always circular. The problem is, Lyme disease can be very difficult to diagnose if the patient does not develop this rash, and one in three people don’t develop it.
"I wouldn’t always be thinking that could be Lyme disease underlying that”Dr Ghosh describes how many people have gone out and been bitten and not even realised that this could have caused an infection until weeks later. “Often we see the patient and we treat what the symptom presents. So if you present with depression or anxiety, I would treat you for depression and anxiety, and I wouldn’t always be thinking ‘that could be Lyme disease underlying that,’” he says. Less common Lyme disease rashes include the Acrodermatitis Chronica Atrophicans, which is a bluish-red discolouration and swelling of the skin that develops on the the legs and arms several years after someone has been infected, and the Borrelia lymphocytoma, a bluish-red swelling with a small diameter that is most often seen on the nipples or ear lobes.
If left untreated, it can lead to neurological issues and heart problems. But if it’s caught early, the disease should be relatively easy to treat with a two to four week course of the antibiotic Doxycycline. “That’s usually the end of it and there isn’t any further issue,” says Dr Douglas, “difficulty occurs when some people get bitten by the tick, they may get a rash that they can’t see behind their knees and then they don’t get treatment.”
"Patients are often left with quite debilitating symptoms like headaches and fatigue"He says this allows the bacteria to go deeper into the body and it starts flaming either the joints or the nervous system. When that happens, antibiotics are still possible he says, but they generally have to be given intravenously in much bigger dosages over a much longer stretch of time. “But even once you’ve got rid of the bacteria from the body by that process, there’s still quite a lot of information left in the body, particularly in the nervous system and the brain, so patients are often left with quite debilitating symptoms like headaches and fatigue,” says Dr Douglas.
Some experts describe these persistent symptoms as post-infectious Lyme disease or chronic Lyme disease, but not everyone in the medical industry agrees that the latter exists. The theory with post-infectious Lyme disease is that the infection has left the body but debilitating symptoms remain, whereas advocates of chronic Lyme disease believe that the disease can stay in the system after treatment. As early as 1994, researchers in America found that Lyme disease could leave behind debilitating conditions like arthralgia and fatigue. Current NHS patient advice notes post-infectious Lyme disease as an issue, but the health service is unsure of how it should be treated and is critical of the existence of a chronic form of the condition altogether. Indeed, an international group of medical professionals concluded that the chronic disease did not exist in 2007, and that treating it with long term antibiotics was dangerous. But campaigners have raised questions about the authenticity and motives of this international group. With many pointing to the words of Professor Durland Fish, a professor at Yale University in America who wrote in an email shared between the group that the battle with Lyme disease campaigners could not be won on a scientific front. “We need to mount a socio-political offensive, but we are out numbered and out gunned,” he wrote. The email was obtained by the now disbanded Lyme Disease Foundation (LDF), through a freedom of information request that took five years to be granted, and this request also revealed that some members of the group had commercial interests in Lyme disease research. Professor Fish says he sent the email to a colleague at the National Institutes of Health in the US, after he had spent years battling the narrative of the LDF. He says the LDF was disseminating rumours and false information about Lyme disease to patients and physicians that resulted in misdiagnosis and inappropriate treatment.
"A small group of physicians made lots of money by diagnosing Lyme disease in patients who did not have Lyme disease"“A small group of physicians made lots of money by diagnosing Lyme disease in patients who did not have Lyme disease and treating these patients with expensive long-term intravenous antibiotic therapy,” says Professor Fish. “Several of these physicians were subject to disciplinary hearings and some were fined or not allowed to practice. This was more than 20 years ago, but it continues today at a much greater extent,” he says. Professor Fish says the problem is similar to other anti-science campaigns “that cannot be corrected by providing more science.” But, the international group’s findings are contradicted by European research from 1996, which found that Borrelia burgdorferi, the long and slender spirochete bacteria that causes Lyme disease, could persist in the body, despite “adequate antibiotic therapy”. Dr Douglas is convinced that Chronic Lyme disease has a big impact on people’s lives from speaking to patients but “we don’t understand the disease mechanism properly and don’t have evidence based treatments available yet,” he says. He explains that some patients that have tested positive for Lyme disease continue to describe feeling unwell, despite getting antibiotic treatment. But, “there are other people who’ve got chronic fatigue and illnesses like that who maybe say that they’ve got Lyme disease, but there isn’t, on the bases of current conventional blood tests, any direct proof that they have,” he says.
If Lyme disease is suspected, but a rash cannot be found on the patient, the condition is usually diagnosed by a two-tier blood test on the NHS. Firstly, an Enzyme-Linked Immunosorbent Assay test (ELISA) and secondly the Western Blot. Both are used to detect whether the patient’s sample has the antibody that attacks Lyme disease, a protein which is produced by the human body to attack bacteria and viruses. But the problem is, these tests can come back negative, even when the patient has Lyme disease. Dr Tim Brooks, Head of Public Health England’s (PHE) Rare and Imported Pathogens Laboratory (RIPL) which tests samples for Lyme disease says: “Blood tests can be carried out to confirm the diagnosis after a few weeks, but these can be negative in the early stages of the infection and a person may need to be re-tested if Lyme disease is still suspected after a first negative test result.” He says that this is true of many infectious diseases and is not a “peculiarity” of Lyme disease. “The test systems used in the UK are used across Europe and the US, and the PHE laboratory participates in a Europe wide external quality assurance scheme which compares the results obtained by major European health service laboratories to ensure that different tests are as sensitive, specific and reproducible as possible between each centre,” he explains. A number of private laboratories offer their own special tests, but these are not subject to the same stringent quality control according to Dr Brooks. Dr Ghosh recognises that some people look at private healthcare with a degree of scepticism, and he thinks it’s important that anyone who goes private does their research.
"It’s important that we don’t become hysterical"“However, it’s important that we don’t become hysterical about that, and that we look for any type of help and any type of treatment. It’s important that we do our research, and I certainly think that people who are sceptical of it need to be aware there just isn’t that help on the NHS at the moment. So many people feel they’re forced to look privately,” he says. ArminLabs in Germany offer alternative forms of testing to the NHS, but its Lyme disease tests are currently waiting on accreditation from Deutsche Akkreditierungsstelle (DAkkS), the German regulatory body that assesses the technical competence of labs. Dr Armin Schwarzbach who runs the lab says they hope to get the official accreditation from DAkkS before the summer of 2016.
"Some strange people, maybe competitors try to damage my lab by telling patients, my tests are not good"“You can be 100 per cent sure, that we will mail that paper round the world immediately after getting it, because some strange people, maybe competitors try to damage my lab by telling patients, my tests are not good,” says Dr Schwarzbach. “The [DAkkS] paper will not change any of our CE-certified test-systems in any way and will not influence any of our results we do in high quality since our start one year ago,” he says. ArminLab’s tests do have the CE marking, which shows that they have checked that their tests meet EU safety, health and environmental requirements. Needless to say, the availability of different types of testing and the claims and counter claims on the reliability of different tests can be confusing for patients. “All laboratory tests have to be interpreted in the context of each patient and the stage of their illness, in exactly the same way as any other medical investigation,” says Dr Brooks.
Charlotte Bridge, a nutritionist based in Dorking, believes that alternative nutritional therapies can help treat Lyme disease patients that are suffering from long-term conditions. She says: “The herbs can be quite effective and there are people healing just with herbs because the original herbs have very strong antibiotic abilities and modern medicine seems to have forgotten it.” But she would prefer people to use integrated antibiotic and nutritional medicine “so they get the best of both worlds.” “It has such serious side effects, this disease. The consequences are years of illness, loss of careers, loss of life really,” she says.
"The problem has been whether all these people that are now presenting with chronic Lyme disease, actually have Lyme"Dr Ghosh stresses that it’s very important doctors and patients keep an open mind about what has caused their condition too. “My view on chronic Lyme disease is it’s certainly recognised as a medical complication, we’ve known that for many, many years. The problem has been whether all these people that are now presenting with chronic Lyme disease, actually have Lyme.” Dr Brooks points out that many patients have long term non-specific symptoms which may be labelled as Lyme disease, “but there are many other infections such as Coxsackie and Epstein Barr virus infections, brucellosis and Q-fever which can trigger these symptoms and have to be considered in the possible diagnoses,” he says. Dr Ghosh says he can understand why the NHS would find it “very difficult” to diagnose. “If you’ve only got 10 minutes, as your GP, you’d probably just treat the Asthma, because you’ve got that, it’s clear, you know how to deal with that,” he says. Some patients have complained that the NHS does not provide sufficient care for them, but Dr Ghosh has a practical explanation for this. “I think the problem with the NHS at the moment is that we’re very set up for acute problems, so if you break your leg, if you have a heart attack you are dealt with very, very quickly,” he says. But, if your symptoms are a little bit vague, it’s very difficult for the NHS to pick that up as potential Lyme disease says Dr Ghosh.
Whilst, Dr Brooks says there is no evidence that Lyme disease is transmitted from person-to-person in humans and there is no epidemiological data to support people-to-people transmission, there are alternative theories of how Lyme disease may be transmitted.A study from 2014 showed that the Borrelia spirochetes that cause Lyme disease could be found in the genital secretions of men and women, leading the researchers to argue that Lyme disease may be transmitted through sex. Nevertheless, more research needs to be done in this area, and the researchers of this 2014 study do not claim that the presence of the disease in sexual fluids definitively suggests that it can be transmitted sexually. There has also been much debate over whether Lyme disease can be passed from mother to child through the placenta. Whilst it is recognised that Lyme disease can cause still births, no study has yet been published that definitively shows it can be passed from mother to child. With the numbers involved it’s going to be very difficult to pick up whether it is actually happening says Dr Douglas, “but certainly if we go back to an analogous situation at the turn of the 1900s, when Syphilis was a big problem.” Syphilis is a similar spirochete organism to Lyme disease that is transmitted sexually.
"Theoretically I’m sure vertical transmission is possible"“If a man with Syphilis had intercourse with a woman, she got pregnant and he gave Syphilis to the women, then the women could certainly transfer that Syphilis down to her unborn child. Theoretically I’m sure vertical transmission is possible, but it hasn’t been described or recorded yet,” says Dr Douglas.
The number of laboratory confirmed cases of Lyme disease between 2005 and 2014 in the UK remained relatively stable at around 1000 cases per year. But most cases are diagnosed clinically by GPs and are not recorded centrally. The NHS estimates that there is around 3000 cases of Lyme disease in the UK every year, and lists Exmoor, the New Forest, the South Downs, parts of Wiltshire and Berkshire, parts of Surrey and West Sussex, Thetford Forest, the Lake Distract, the North York Moors and the Scottish Highlands as areas with high populations of ticks that carry the infection. But Sarah Randolph, a retired Professor of Parasite Ecology at the University of Oxford that spent much of her career studying the ecology of ticks is not convinced that there are specific high risk areas where people are more likely to contract the disease. “Basically in the UK we say ‘ticks are everywhere but not everywhere.’ Wherever there is a good habitat, which is a nice, moist woodland area. I don’t mean wet woodland but something that is protected,” she says. “People talk about hotspots of Lyme disease, that’s rubbish, there are no hotspots, what there are are hotspots of people going to woods. So the New Forest for example, there are no more ticks in the New Forest than there are any other places, but there are an awful lot more visitors,” says Randolph.
"As far as we can make out, you need a woodland of a size large enough to house a resident deer population"She explains that woods are a good habitat for ticks because they’ve got shade and “nice rank vegetation” in which the ticks can live. “As far as we can make out, you need a woodland of a size large enough to house a resident deer population,” says Randolph. Ticks also like moorlands where there is a high population of sheep and bracken, a fern that is present on most continents around the world. Dr Douglas diagnosed around 20 patients with Lyme disease last year, and he’s seen the number of cases increase at his practice in the West Highlands over the years. He has a theory that because farmers can no longer use banned toxic chemicals like organophosphate pesticides to dip the sheep, ticks that have latched onto the sheep, as the sheep brush past bracken, are not being removed as effectively as they were 20 years ago. He also poses the question of whether climate change may have led to an increase in the number of ticks in the UK. “The ticks don’t like dryness, they like wet so it tends to be seasonally more common in spring and in the autumn, and if it’s a hot dry summer they tend to get defecated and dried out. Obviously we’ve had a lot of wet summers so that just generally encourages more ticks,” says Dr Douglas. But at the same time, he recognises that changes in human behaviour may have had an impact on the increased number of cases he’s seen. Randolph is particularly critical of assuming that climate change has caused an increase in the number of ticks in Europe. “All the last decade of my working life, the kneejerk reaction was ‘Oh it’s climate change.’ Of course, it coincides with everything. It certainly coincided with my mother’s deafness, though as she was getting to be 101, it wasn’t surprising, it was just a coincidence,” she jokes. “In many parts of central and eastern Europe, it’s the most economically disadvantaged who are getting these [tick-borne] diseases, maybe because indeed their behaviour takes them into the forest. And I think we showed in one of our analysis, that where there was a vaccination and awareness campaign in Latvia, where the incidences had been highest up to that point, the decrease in incidence was most extreme,” explains Randolph. When latching onto humans, ticks prefer skin folds like the back of the knee, the waist and the armpit. And if a tick has dug its teeth in, Dr Brooks recommends using a special tick-removing tool or fine tweezers to remove it, by grasping the tick close to the skin and pulling firmly upwards. Nonetheless, proving that the number of Lyme disease cases correlates with tick populations is difficult, as Randolph explains, “No funding agent is going to give you money to start now to count ticks systematically and consciously for the next 20 or 30 years.” But Randolph does say that if people notice an increase in the number of tick bites, then you have to start believing that this reflects an increase in abundance of ticks. “But it’s not going to get published, it’s not hard evidence based, it’s just circumstantial,” she says.
What is next?
F or those that are suffering with Lyme disease in the UK, it can seem like progress is slow. Campaigners have been arguing for years that NHS guidelines for GPs are not sufficient. The National Institute for Health and Care Excellence (NICE) is currently working on new guidelines for Lyme disease, which should be ready by July 2018. Stella Huyshe-Shires, Chair of Lyme Disease Action says the reason is, “It takes a long time because, NICE guidelines, a) they have got to do the research and b) they have then got to write it up and it all has to go out to consultation.” “Some guidelines get well over a thousand responses back from the public and doctors and industry, and all the stakeholders have to go through those and produce another set, put that out for consultations, and only then do you get the guidelines.” Helen McCormack and Justin McCarthy, from Flourish Partners, a science consultancy company that develop and produce their own products, are working on a urine test for Lyme disease that they hope will help doctors diagnose patients much quicker. McCarthy says: “What we’re trying to develop is a test that will pick this disease up early on and will be able to do it with urine, like a pregnancy test. The clinicians will be able to say, ‘Okay, this could be Lyme disease,’ take a test – on the spot, and 15 minutes later be able to say if their patient has it or not.” Their aim is to make it easier to get diagnosed, without having to travel to specialist clinics abroad. They want to develop a test that doctors in the UK will formally accept. They also hope to continue with their research and gather more funding to eventually be able to offer further treatments once the urine test is out and available to patients. They are also researching whether there is a link between Lyme disease and Alzheimer’s, as well as heart problems, amongst other illnesses. Some Lyme disease sufferers have also decided to set up campaigns to raise awareness on the many issues that they face.
“Not everybody is ignorant, it’s just that they don’t really know and understand it”Emma for example, has set up an awareness campaign in Liverpool as she decided the “ignorance” surrounding the disease needed to change, though she stresses, “Not everybody is ignorant, it’s just that they don’t really know and understand it.” She is concerned more needs to be done to raise awareness of the illness. “So I’m going to America in May, and there’s a bit of fundraising alongside it as well,” explains Emma. “But along with those fundraisers, it’s a perfect opportunity for us to raise awareness. So we’ve got a few events set up within the business community of Liverpool as well, to try and get them aware of the problems. We just want people to start talking about it.” “It’s a question that’s asked, when you say to somebody, ‘I’m going over to America to get some treatment’ and they say ‘what treatment are you getting?’ and then you say, ‘Well antibiotic, long term antibiotic therapy,’ then their face kind of distorts and frowns and they say ‘Why on earth can’t you have that done here if it’s just antibiotics?’ Which is a very good question,” she says.
While new guidelines are still in the pipeline, Public Health England (PHE) are now holding workshops for GPs. Lyme Disease Action, have also produced an online training module for doctors in collaboration with the Royal College of GPs. Dr Brooks also points out that PHE are “working with national and international partners to study new tests methodologies that may be useful in early disease, and to distinguish active infection from past exposure”. Though Kate Bloor from Lyme Research UK, thinks not enough GPs have taken the online module yet, “They have only had 1,000 hits and if you think that there are 32,000 GP's in the UK, that is only 3.2 per cent,” she says. But Dr Douglas is working on a new piece of technology, which he hopes will help prevent the number of cases of Lyme disease in the UK. With £180,000 of funding from the European Space Agency, he is working on an app that will help plot areas that are more likely to have Lyme bacteria-carrying ticks. He says the app will should take four years to develop and that it will “give accurate and up to date information about what to do and what the symptoms are, where people have been infected by ticks, but it will also use a bit of citizen science - using modern phone technology to gather the location of ticks when people have been bitten and whether it’s turned out to be infected ticks that have gone on to be Lyme borreliosis.” Living with a condition that leaves you feeling frequently ill can be hard enough to deal with, but the idea that your future family could also be affected is hard for patients.
"They haven’t sorted out how transmissible this disease is, that’s one area that really needs research"Natasha says: “The whole idea of planning your life is very jeopardised. In terms of children, one of the biggest issues is that they haven’t sorted out how transmissible this disease is, that’s one area that really needs research, because there is a lot of debate whether you can pass it on in utero or not and also sexually.” “It’s really difficult to try and take responsibility for an area you don’t know much about and the answer isn’t clear, and I think it has a lot of ethical implications, if you don’t even know how infectious you are. Especially in relationships, you don’t even know for sure if you can transmit an infectious disease,” she says. She believes “absolutely” that there are “examples where whole families have been affected.” But says, “It’s difficult to prove they haven’t lived in the same area and so been exposed to the same tick risk or whether it’s a genuine passing on.” While official bodies in the UK and the USA maintain that Lyme disease cannot be passed from person-to-person, some patients and doctors have not ruled out that it is theoretically possible. As Katherine explains: “I guess this is a controversial area, in that there is research that the bacteria can pass the placenta,” she says in reference to a book by Doctor Horowitz, which documents his treatment of pregnant women with high doses of antibiotics so that the disease isn’t passed through the placenta. He says this reduced the number of miscarriages compared to his previous figures – and allowed them to have a normal pregnancy. Katherine also considers the prevalence that some researchers say Alzheimer’s may have with Lyme disease, as her mother suffers with both. McCormack from Flourish Partners also touches on this, she’s hoping to look further into the possible link between Lyme and other neurological conditions, as well as Alzheimer’s. She says: “There’s a huge study that’s just been done in the US that looks at about 200 patients that were examined with Alzheimer’s disease, and when they went to do autopsies on their brains 99 per cent proved positive for Lyme disease – there was Lyme bacteria in the brain, Lyme and syphilis,” she says.
While changes to how Lyme disease is diagnosed and more treatment options may seem far away for some patients, seeing small improvements in their health can have a big impact on their day to day lives. Natasha, who has had some relief of her symptoms since visiting a doctor in America says: “I can definitely see a future now. I feel like I have hope, whereas before when I was so severely ill, there was no diagnosis forthcoming in this country. It was really hard to find hope, but it is still very much a day by day approach and the symptoms can fluctuate so much even on an hourly basis.” One of the main concerns for patients and campaigners is the need for greater knowledge of Lyme disease amongst GPs in the UK. But Huyshe-Shires does recognise that getting Lyme disease on their agenda isn’t easy. But, “They do need to be aware of the rash, they do need to be aware of when Lyme disease can occur, who’s at risk and to be prepared to consider it with patients who have been at risk or exposed to tick bites,” she says. Emma, isn’t so sure what will happen in terms of her health and thinks much more needs to be done surrounding the condition. “When am I going to get better? I don’t know, I’ll just keep going at it. I try not to entertain concerns about me. My biggest concerns are that this continues to be ignored by the government and it continues to be ignored by the medical profession,” says Emma. Huyshe-Shires also wants better communication between doctors and patients. “Healthcare involves a discussion; and patients and doctors need to talk. Doctors need to know the questions to ask and patients need to be able to answer them and to be able to decide - to a certain extent - what course their treatment takes,” she says.
"It is not in the NHS interests to experiment on people"“It is not in the NHS interests to experiment on people but if a patient relapses then a doctor has to come to a clinical judgement and a patient has a view on that and should be allowed to have a view on it.” Katherine is concerned for Hayley’s treatment and whether it will allow her to make a full recovery. “My understanding is that you never completely get rid of the bacteria with your own immune system when it becomes chronic. So we know we have to treat her, not quite as aggressively as we were, but she still needs treatment ongoing and we don’t know how long that will be,” says Katherine. While many issues surrounding Lyme disease are debated by doctors, patients and scientists, the disease does seem to be gaining more attention in the media. One of the most prominent stories in the last year was when John Caudwell, the founder of Phones4U revealed that he and several members of his extended family had the disease. He has since been liaising with patient groups and has set up another charity called Caudwell LymeCo, along with a survey that aims to find out the amount of money that the NHS spends misdiagnosing patients.
Over the years Lyme disease has become a political illness, so defining what should be done next is not an easy task. Kate Bloor says: “I think fundamentally we need better science, better research to improve what kind of outcomes we get from certain types of treatment, which we don't currently have - the research is very limited - secondly we need better systems to deliver care.” Those who don’t have Lyme disease and are only just grasping its potential health implications, may be left wondering what precautions should be taken in order to protect themselves. Dr Douglas hopes that the risk of Lyme disease won’t put people off from using the outdoors. “Our health and wellbeing in 2016 is much better being enhanced by the use of the countryside, than any relatively small risk of Lyme disease,” says Dr Douglas. “We’ve got to get the public health message right and balanced, that if people take some simple precautions there should be no problem. I don’t want this giving an idea that people need to stop going into the countryside,” he says. With so many questions left unanswered for those who live with Lyme disease, it can be hard to know what the future holds. Emma’s campaign to raise awareness for Lyme disease will continue after she returns from America. She stresses, “We’ve got a whole other generation coming up now who could be suffering the same as what we are. I just really hope at some point we start to learn lessons, to pay attention and just listen a bit more. If we can make a big enough noise, then I’m hoping we can get the attention of the right people.”
"Research is continuing, we just need perhaps another ten years to get some answers"Natasha hopes that one day there will be standardised testing across the world, which the whole medical profession can accept and that there is more research into transmission. “I think that is crucial. Especially for sufferers to know what their responsibilities are ethically,” she says. Huyshe-Shires also thinks that more research needs to be done. “Lyme disease is very difficult, it’s among lots of other very difficult diseases and conditions. It’s not the only one that’s difficult to diagnose or difficult to cure. And research is continuing, we just need perhaps another ten years to get some answers,” she says.
Zak Thomas Lauren Felstead Lloyd Johnson Lamees Altalebi