Lyme disease is on the increase, finds Dani Garavelli, leaving sufferers feeling abandoned by the NHS at their time of need.
Clare Haworth has boxes of medication piled up on a table in her home in Stepps, North Lanarkshire. There are several types of antibiotics – Cefuroxime, rifampicin and clarithromycin – as well as supplements and low-dose naltroxene (normally used to treat heroin addiction). Because she cannot get any of these on the NHS, Haworth makes a three-monthly trip to a private doctor in Ireland. “I feel like a drugs mule as I walk through customs,” she says.
I googled the symptoms and slid down the wall. I knew immediately
For six years now, Haworth has been suffering from a cocktail of symptoms, including aching joints, poor vision and memory loss. She is one of a growing number of people who are convinced they have a condition known as “chronic Lyme disease”. Spurned by much of the medical establishment, they have formed themselves into a Facebook community, swapping advice and information. Like all communities, it has its own jargon. A few hours in the company of “#lymies” is enough to familiarise yourself with words like “spirochete” (flexible spirally twisted bacterium) and “herx” (a reaction that occurs at the beginning of a course of antibiotics).
Lyme disease itself was discovered in the 1970s in Connecticut. It is spread by ticks infected with borrelia bacteria. For a human to contract Lyme disease, an infected tick has to be attached to their body for around 24 hours. Those who do will often (but not always) develop a bull’s eye rash followed by flu-like symptoms. According to the NICE guidelines, treatment should involve one or, at the most, two courses of antibiotics. Around 90 per cent of those treated will make a complete recovery. But 10 per cent will go on to develop post-treatment Lyme disease syndrome which will leave them suffering from fatigue, joint and muscle pain and cognitive difficulties.
Cases of Lyme disease are on the increase. No-one is sure why, but experts believe it may be connected to climate change – ticks thrive in a warm, damp climate – and to the increase in the wild deer population on which ticks feed. Scottish hotspots include parts of the Western Isles and the Highlands.
Haworth, however, belongs to a separate group. These patients suffer a large range of symptoms including, but not confined to, those associated with acute Lyme disease. They have never received NHS treatment for Lyme disease or tested positive for the bacteria in accredited UK laboratories.
Some of these patients claim to have been bitten by a tick at some point in their lives (without anyone linking it to Lyme disease). Others have no recollection of any tick-related incident, and have self-diagnosed after googling their symptoms on the internet.
Both post-treatment Lyme disease syndrome and chronic Lyme disease have garnered a good deal of attention in recent years as a succession of celebrities, including Bella Hadid, Avril Lavigne and, most recently, Justin Bieber have claimed to be suffering from them. But non-celebrities who believe they have chronic Lyme disease tend to find themselves dismissed by doctors who not only dispute its existence, but often suggest the symptoms described are psychosomatic.
As their desperation mounts, these patients start looking beyond the NHS. Believing the UK tests to be flawed, they seek alternatives, such as the ArminLabs in Germany, which very often yield the positive results they failed to secure in the UK.
But these diagnoses are not accepted by the NHS, so they turn to “chronic Lyme disease advocates” – private doctors, such as John Lambert in Dublin, who prescribed Haworth’s antibiotics. Lambert believes that where infected tick bites are left untreated, they can lead to serious neurological conditions, heart problems and arthritis, and that the current UK tests are flawed. For those who have spent years being told they are hypochondriacs, the relief of finding someone who treats them seriously is enormous.
Other patients turn to those offering complementary therapies, such as the Rife machine. The Rife machine produces low-energy electromagnetic waves which are supposed to kill the bacteria. As the cost of treatment mounts, they push themselves to their financial limit. But though their symptoms ebb and flow, few make a full recovery.
So what is the truth about chronic Lyme disease? Are those who claim to have it in the grip of a condition so perplexing it is easier for the medical profession to dismiss it out of hand? Or are they – as some believe – clutching at a label which, while legitimising their pain, also opens up the potential for their exploitation? Either way, these patients are clearly suffering. So why isn’t more money and effort being invested in trying to get to the bottom of it all?
The first thing you notice when you arrive at Haworth’s house is that it borders a field stretching to the Garnkirk Burn and beyond. She and her black poodle Norris often walk through the tall grass where deer like to roam. For many years, she also owned a horse which she kept at a farm. Plenty of opportunities for tick bites, she points out.
Until she reached her mid-40s, Haworth was well and super active. The year she took ill had been especially busy; she had been combining her work with singing in operas and horse-riding. When she first noticed a dip in energy, it felt like a hangover. She put it down to tiredness and took some vitamin pills. Gradually, however, her symptoms got worse. She found it difficult to sleep and, when she did, she had ultra-vivid dreams. She had pins and needles in her hands and her joints began to ache.
Her GP told her she was probably upset about the recent death of her horse and referred her to a counsellor. Soon, Haworth was disoriented and forgetting words. She had no feeling in her left side. Her visions was blurred. She started suffering from tinnitus. “I thought I had a brain tumour,” she says.
Her GP referred her for a CT scan, but she had to wait 18 months and, when she finally got it, it was clear. She says her doctor suggested she was a hypochondriac, but also that she might be menopausal and that she should take HRT. He referred her to a psychiatrist, and she went along with it because she didn’t know what was happening to her. “I was trying to work. I would get in my car and think: ‘I don’t know how to drive’. I was going into schools and getting lost. It was a complete nightmare,” she says.
One day Haworth was googling symptoms and she stumbled on chronic Lyme disease. The symptoms seemed to fit. So she went back to her GP. He said: “We don’t have Lyme disease here.” However, he agreed she should be tested. Blood was taken and sent to the Scottish Lyme Disease And Other Tick-Borne Infections Laboratory at Raigmore Hospital in Inverness. It tested negative.
Haworth accepted the result. But still, she was frantic. Then a woman whose son had suffered similar symptoms told her about Lambert. He put her in touch with the German laboratory and she was re-tested there at a cost of £1,500. Those tests came back negative for Lyme, but positive for other related co-infections.
In the meantime, she travelled to a holistic centre in London where they tested her and diagnosed her with chronic Lyme disease. Lambert – who spent time in the US – concurred with its findings. It was Lambert who prescribed the antibiotics. She has been taking them for almost nine months now, but they aren’t making much difference. This three-month course is to be her last. If they don’t work, she will go down the herbal route. Haworth has already spent more than £12,000 on treatment. Her savings have disappeared and she has taken out two loans.
A crowdfunder raised a further £3,000. At one point, she even bought a Rife machine for £1,000. “ I was so naive,” she says. “I was like ‘Great, if I get one of these it will sort everything out.’ It made no difference at all. In the end I sold it back.”
As consultant clinical scientist at the Scottish Lyme Disease And Other Tick-borne Infections Reference Laboratory, Dr Roger Evans is all too aware patients like Haworth feel let down by the medical establishment.
The laboratory carries out 10,000 Elisa and immuno-blot tests for Lyme disease a year. And yet the number of official cases in 2018 stood at just 220. Most experts believe the real number could be as much as ten times higher.
This gap is partly due to the fact that GPs who recognise the Lyme disease rash are encouraged to go ahead and treat it with antibiotics without testing (though not all do). But it is also because – for acute Lyme disease – the test is only around 60 per cent effective. “The cases we diagnose are those which are sero-positive – in other words the antibodies fighting the Lyme disease have been detected,” Evans says. “However if you are bitten by a tick and you develop the rash and are tested within a week you are likely to test negative. The reason for that is the antibody is not yet at a level that is detectable.”
With chronic or late Lyme disease, however, Evans claims the tests are 90 per cent accurate because the bacteria has been around long enough for the antibodies to react.
Those who advocate for chronic Lyme disease, on the other hand, say the bacteria destroy the immune system, rendering antibody tests worthless.
When it comes to the cellular-based tests carried out in Germany, Evans remains sceptical. “When we do tests as a laboratory we have to meet international standards,” he says.
“I have emailed the labs in Germany and asked: ‘What have you done for validation and verification?’ and they haven’t replied. So I don’t know how their tests perform on specific patient groups. The information on the website is not sufficient to make a judgement.
“This problem has been recognised. A study into cellular-based tests is now being carried out in the Netherlands.” Only when these results come out will it be possible to assess the accuracy of the tests.
One of the things that particularly concerns Evans is the long-term prescription of antibiotics, with little evidence that they are doing any good.
“There is a real push to try to reduce antibiotics because a) overuse produces resistant strains and b) there are acute side effects to long-term antibiotic use such as C. difficile infections.”
Some people do say they improve on long-term antibiotics, but Evans believes that might be because they have an anti-inflammatory role as well as an antimicrobial one. “That would be an area of research it would be well worth investing in,” he says.
There is a fair amount of research into Lyme disease being carried out in Scotland, though – as with every serious condition – those who have it wish there was more.
In the Western Isles, nurse specialist Isabell MacInnes conducted a small study looking at the impact of Lyme disease on patients’ quality of life as part of her master’s degree in infection prevention and control.
Her research was slightly hampered by the fact the people she interviewed were self-referring (which tends to skew studies towards the worst-affected). The need to have a confirmed Lyme disease diagnosis ruled out those claiming to have chronic Lyme disease.
A third of those who took part had gone on to make a full recovery after one or two courses of antibiotics, while the rest had complications of some sort or another.
Two-thirds of those who took part had comorbidities – other conditions including mild arthritis or the menopause which might be responsible for symptoms such as fatigue and/or joint pains. MacInnes said those who saw the rash and took antibiotics quickly had a much better prognosis than those whose treatment was delayed.
“Cognitive symptoms – forgetfulness, not remembering words – was mentioned a lot and impacted on how they were able to carry on with their usual activities,” she says.
“My participants also talked about how [having ongoing symptoms] made them feel. They didn’t want to be sick. They wanted to get better. And they were told they should feel better because they had had the antibiotics. They found it difficult to talk to people because people thought they were just making it up.
MacInnes would like to extend the study by speaking to every person in the Western Isles diagnosed with Lyme disease within a calendar year, and following their progress . “I think that would a give a more representative sample of what is actually going on,” she says.
Meanwhile, at Glasgow University, Dr Lucy Gilbert is researching the increase in ticks and mapping their prevalence throughout Scotland. “Deer are the main hosts to feeding ticks so, generally, where you get more deer, you get more ticks,” she says.
“The deer increase the tick populations, so you are more likely to get bitten. But deer do not carry Lyme disease so more deer would not necessarily increase the prevalence of the disease. It is complicated. A lot of my research is trying to gather enough data from enough places with different deer densities to try to work out the role of deer in Lyme disease and its risk to humans.”
To do this, Gilbert and several PhD students travel to different sites and drag a blanket along the ground to collect ticks. They record the number, the habitat, how much deer dung there is and what proportion of the ticks are carrying Lyme disease.
Nowadays, Gilbert takes precautions. But when she first started her research in the Highlands 15 years ago, she was bitten by an infected tick and developed the rash. Despite the nature of her work, her GP told her “We don’t have ticks around here” and refused to treat her. Later, she started suffering joint pains and strange tingling sensations in her fingers. After three months she was referred to hospital where she was given four weeks of intravenous antibiotics, and made a complete recovery.
Gilbert’s experience was 15 years ago. It is unlikely any GP in the Highlands would suggest there were no ticks there now.
But patients in other parts of Scotland continue to be told it is impossible for them to have been bitten, while others – who remember being bitten a long time ago – are treated like malingerers.
Pauline Bowie claims to know exactly when she was infected. It was summer, 1989. She was a civil engineer student and synchronised swimmer who had taken a post as a waterfront director with Camp America in Michigan.
“We were in and out of the woods and always getting bitten by ticks,” she says. “But I had never heard of Lyme Disease and didn’t think anything of it. “
While she was there she developed a strange rash and came down with what she thought was flu. But on her return, her GP diagnosed ringworm and prescribed Canesten.
Bowie continued to feel unwell. But when her younger brother was diagnosed with terminal cancer, she put her own problems aside to support him. Having qualified as a teacher, she gave up her job to nurse him through the last months of his life. He died in June 1992.
The following month, Bowie went back to her GP with the same symptoms as before. He suggested she was suffering from anxiety following her brother’s death.
Over the years, she has suffered from, among other things: chronic fatigue, gastric problems, bladder incontinence, the paralysis of her vocal cords, palpitations, spasms, tremors, slurred speech and cysts along her arms. She was sent for tests; but says she was made to feel like she was wasting the doctors’ time.
Then one day, she found out her cousin was suffering from chronic Lyme disease. “I googled the symptoms and slid down the wall. I knew immediately that’s what I had,” she says.
Her GP was dubious, but took her blood and sent it for testing; it came back negative. Later, she claims she was sent to see a consultant neurologist who shouted at her and accused her of attention-seeking. Nevertheless, she persuaded him to give her four weeks’ worth of the antibiotic doxycycline.
After taking the German test (which came back positive for Lyme and other co-infections) she started on the antibiotics which cleared up her carpal tunnel syndrome and her bladder incontinence, though not her joint and head pains.
But when the course was completed, she had nothing. By this time, Lambert had a waiting list. But then someone recommended the Well-One Clinic – a charity near Hull – where a retired doctor was holding Rife sessions followed by a few days’ antibiotics. For six months Bowie attended the clinic once a fortnight. “At the end of three months, I felt much better. At the end of six, I had my life back.”
Now she has the treatment at an outreach clinic in Dumfriesshire once a month. “I am back full time to work, I am back to my old weight, I go to the gym five times a week. I still get tired and I still have symptoms, but I feel if I maintain this treatment I will be able to come off the antibiotics in the summer.”
Bowie may be making progress, but many are not. Whether chronic Lyme disease exists, or it is being seized upon to make sense of a complex array of symptoms doctors cannot explain, their distress is real and ongoing.
“I think a proportion of the chronic Lyme disease patients do have Lyme disease, but others do not, “ says Dr Evans. “My fear is, however, if [doctors] don’t look for other causes, something else that could be cured will be overlooked.”
The Lymies, on the other hand, believe many of them are being wrongly treated for conditions such as ME, fibromyalgia and MS, which is making their symptoms worse.
What they can agree on is the need for more research. “We think we know a lot in medicine, but actually we don’t know enough and the debate around chronic Lyme disease is demonstrating that,” Evans says. “There is clearly something going wrong with these patients’ immune or inflammatory systems, but we need to find out exactly what. “
Back in Stepps, Haworth is soldiering on. “I have lost family members and friends over this,” she says.
“My mother is 80 and she is struggling and upset all the time. To her your GP is God and she can’t understand it because a lot of the time you look OK. But you forget birthdays. You come across as really selfish when, in fact, you are trying all the time.”