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What Happened When I Got Diagnosed With Lyme Disease

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A few months ago, I started to feel really tired. I don’t mean like "I’ll go have a nap" tired, or "Can I have a coffee, please?" tired. I mean, so tired that going up a flight of stairs exhausted me. This tiredness was absolutely relentless. I could drink six cups of coffee (in another lifetime that would give me a panic attack,) and it would make absolutely no difference. I was sleeping for twelve hours a night, and waking up feeling that I’d not slept at all. I began to fall asleep on the tube, which is something I’ve never been known to do. It frightened me.

What frightened me more, though, was that I noticed my memory disappearing. I was forgetting things in the style that my 90-year-old grandma does; routes that I’ve been walking all of my life completely slipped my mind, as did computer passwords and plans I’d made that morning. This continued to get worse. The moment I realised that something was really wrong, was when I was at university, talking to a good friend of mine, and I completely forgot her name. We were mid-conversation, she was looking at me, talking away, and all I could think was ‘what the f*** is this girl’s name?!’

I became my GP’s worst nightmare, turning up at the emergency clinic every morning, insisting I had something wrong with me. I was tested on everything, my liver, kidneys, iron and thyroid. They all came back normal. “You should be happy,” the doctor told me while I was crying in front of her, “everything seems to be good!”

About two months later, I found out that fatigue and memory loss are two of the defining symptoms of the fairly unheard of Lyme disease. It was a nutritionist I visited who got me tested for – and diagnosed with – Lyme, which is a bacterial infection that's typically caught from ticks, but can also be transmitted by mosquitos, fleas and lice. Grim, I know. The fatigue, memory loss and blackouts were all because a tick had bitten me… it sounded implausible to me at first, but once you have Lyme disease, you start to pay attention to the other people who have it too.

In the news this week John Caudwell, the billionaire founder of Phones4U announced that eleven members of his family now have Lyme, and that the NHS and government are ignoring it. "It is a public health scandal,” he said “A travesty, a tragedy that people are being left to suffer."

Similarly Lyme has riddled the Hadid family. Model Bella, her brother Anwar, and their mum, Yolanda Foster, of the Real Housewives of Beverly Hills, have all suffered from chronic Lyme disease since 2012. Yolanda, like John Caudwell, has been an advocate for bringing more awareness to the condition.

Avril Lavigne has had chronic Lyme since the spring of 2014. The singer said that at the beginning the disease left her bed ridden with exhaustion for five months. In an interview for Good Morning America this summer, she broke down about the experiences she’s had with doctors who had left her misdiagnosed with chronic fatigue syndrome for months because they weren’t able to identify the real problem. “This is what they do to a lot of people who have Lyme disease,” she said “they don’t have an answer for them.”

The general lack of information coming from doctors is because Lyme is not a disease that has been widely acknowledged in the past. And yet, between 2000 and 2011, cases of Lyme have quadrupled in the UK. Now, the NHS predicts that there are up to 3,000 cases a year in England and Wales.

I reckon I caught Lyme in the summer, which is when the number of acute (chronic) cases of the disease doubled in the UK, suggesting I could have caught it here, in England. In an interview for the Guardian, Stella Huyshe-Shires, chair of the charity Lyme Disease Action said: “Any disease that comes in spreads. It’s spreading through the population of ticks. Animals are picking it up so it goes to more and more ticks, so more and more people are contracting the disease. It’s an emerging disease in this country.”

The problem with Lyme is that it is a sly disease that can creep into your body unknowingly, and lay dormant for months before it shows any symptoms. The slyness of it means, as Avril said, it is easily misdiagnosed. While I was searching for a reason for my fatigue, one doctor offered me anti-depressants to see if that would help. Never once was Lyme something that was flagged up with a doctor. Later, once diagnosed, my doctor said he wasn’t sure what to prescribe me, confirming the notion that General Practitioners are not prepared to diagnose or treat Lyme disease.

Hopefully, I’ve been lucky in catching the disease early on, meaning that the infection can be treated with antibiotics before the effects become too serious. I do worry, however, that there are many people in the UK who go undiagnosed, meaning that the bacterium grows and the severity of the disease worsens, with early symptoms from fevers and joint pains potentially leading to heart disease, paralysis or meningitis in the later stages of infection.

Thankfully, due to the increase in cases of Lyme, and certain celebrities bringing it to media attention, a debate has begun in parliament. Lord Prior has said that the Department of Health is going to establish a network of experts to support GPs and hospital staff who may have never come into contact with the disease. Unfortunately, this isn’t going to be put into action for a while, meaning those who do have it now might be left to think that they’re going insane – like I did.

Lyme isn’t something we consider in moments of bad health, and it isn’t something that is readily picked up on by the NHS. So, please do bear that in mind if you forget your friend’s name mid conversation, or fall asleep on the tube at 3 o’clock in the afternoon... and go and visit your doctor.

More on Lyme disease and symptoms, visit on the NHS.
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