Lyme Disease: My struggle against a sinister bug

The Times

About 13 years ago I found a tick in my right arm. We lived among animals in the Surrey countryside so my mum was adept at removing it. It left no mark, there was no rash and I thought no more about it until a few months ago.

In the intervening years I had moved to London and begun my career as a journalist. I was fortunate that I could manage this, because much of the time I was fighting a host of debilitating symptoms.

As I interviewed the likes of George Clooney and Jennifer Aniston, my body and head ached, my vision blurred, my neck cracked and my heart raced. I wasn’t star struck, I had Lyme disease — it was confirmed by a diagnosis three weeks ago.

It was in December last year when I was reading a celebrity magazine that I came across an account by the model Bella Hadid, who was living with Lyme. Shivers ran up my spine as I read her symptoms. I instinctively knew I had it as I recalled the tick that I had seen on my arm all those years ago.

I had been fobbed off for so long with the usual gamut of diagnoses that would be thrown at anyone with multiple conditions. I had done the rounds of well-meaning specialists and alternative therapists. I was told I had generalised anxiety disorder and, after a while, you do begin to believe that it might be all in the mind.

I became the great pretender. I pretended that I was OK and that I could manage, but I was always operating within the confines of whatever condition the insidious Lyme bacteria would be mimicking at that time.

Lyme disease is a bacterial infection spread through the bite of ticks, small arachnids that can be as tiny as a poppy seed. They are prevalent in the UK and are not just confined to the countryside. Their number is rising owing to the effects of global warming as the breeding season lasts longer. Their bites can result in a bullseye-shaped rash, a definitive indicator of Lyme disease. If treated early with antibiotics it can be cured. If untreated, it becomes chronic. My bite did not produce a rash and this is the case for up to 90 per cent of Lyme sufferers.

The disease has become known as the great imitator because it can mimic everything from multiple sclerosis to ME and much more. In my case it presented itself in a variety of ways, all common to Lyme sufferers: vertigo, palpitations, numbness, fatigue, migraines, brain fog and many more.

Days and nights of research showed a difficult path ahead. Chronic Lyme is not a notifiable disease according to the NHS and there is no test in the UK. I sent my blood to a lab in Germany, where the cost is at least £600.

I took my results to the GP and asked why it was not easier for me to be tested in the UK. “It’s hard with rare conditions like this,” he said. This misconception is the problem: Lyme is not rare.

One in 20 is expected to catch it at some point, according to the charity Caudwell LymeCo. Lyme Disease UK estimates that there are 45,000 new cases in the country each year. Data gathered by the World Health Organisation shows that the number of cases in Europe has increased, on average, by 65 per cent every year for the past 20 years, and appears to be accelerating. In the US more people are found to have Lyme than breast cancer or HIV.

Diagnosis is only the beginning because, if the test is positive, months or years of treatment will be required. Many patients travel to Germany or America because they struggle to find expert help in Britain. There have been some positive developments. Theresa May has addressed the issue of Lyme at prime minister’s questions and an all-party parliamentary group chaired by Simon Hoare and Michelle Donelan was formed.

Mr Hoare told me that they wanted to raise awareness, improve early diagnosis, establish a blood test that people could have faith in and draw up an antibiotic protocol. He said: “The Department of Health is well aware that more needs to be done and . . . we are pushing on an open door.” However, plans are on hold because of the general election.

This month, the actresses Kelly Osbourne and Martine McCutcheon revealed their battles with Lyme, joining Hadid, her mother Yolanda Foster, the singer Avril Lavigne and the billionaire founder of Phones4u, John Caudwell, helping to raise awareness of the disease.

But for every A-lister there have been countless devastating stories shared with me by Lyme sufferers and their families. Lesley Knight, from Wiltshire, told me that after her son was bitten three years ago he became increasingly unwell and saw numerous doctors only to have his symptoms denied and not treated appropriately. He attempted suicide 18 months ago, surviving with horrible injuries. Later, he had a private test that confirmed Lyme.

Hannah Canski, from Suffolk, said: “This cruel disease takes more than your health — it takes your career, your family and friends, your financial security and your soul.” Many recounted spending up to £500,000, selling their houses and cashing in savings.

Kenneth Leigner, a Lyme specialist, said: “In the fullness of time the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine.”

Three months of intensive treatment lie ahead of me, but I consider myself lucky to know the battle that I’m fighting. There are thousands out there with Lyme who don’t.

Follow Holly Rubenstein’s journey on Instagram: @IntoTheLymeLight

Tick-beating tips

Tick bite prevention and removal is vital, and Lyme Disease UK suggest the following tips:
• Carry a tick removal tool at all times if possible
• Use a repellent outdoors and choose one that repels ticks, mosquitoes and other biting insects
• Take extra care in long grass, leaf litter and in woods. Stick to paths where the grass is shorter
• Wear a long-sleeved top and tuck trousers into socks. Ticks are more visible on light-coloured clothing
• Check yourself, children and pets for ticks and brush off any that are unattached. If you see an embedded tick, remove it immediately (see how at
• Have a shower and check yourself thoroughly for ticks. If you become unwell or notice a rash, see your GP and mention Lyme disease

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