Celebrities such as Bella Hadid, Yolanda Foster, and Kelly Osbourne have brought it to global attention, but what actually is Lyme disease?
Words by Olivia Spring
Lyme disease is an infection caught from a tick bite, affecting over 300,000 people in the US, with an estimated 2,000 – 3,000 new diagnoses in the UK each year. But how does it feel to have Lyme disease? And how do you prevent it?
What are the symptoms of Lyme disease?
Symptoms to look out for include flu-like symptoms, and a distinctive circular rash at the site of the tick bite which will appear three to 30 days after being bitten. According to the NHS Lyme disease can usually be treated effectively if it’s caught early on. However one in three people won’t develop a rash at all. If unnoticed and untreated, the infection can develop into a more serious condition, known as ‘post-infectious’ Lyme disease. Symptoms that occur in the later stage of the disease include neurological problems, such as poor concentration and memory, extreme fatigue, headaches, muscle and joint pain, swollen glands, night sweats, and more.
Long-term symptoms have also been described and referred to as ‘chronic’ Lyme disease. However the medical community is divided over whether chronic Lyme disease exists – something that is frustrating for sufferers who describe their symptoms as all too real. Bella Hadid has said of the illness, ‘I know what it feels like to not want to get out of bed from bone pains and exhaustion, and not wanting to socialize or be around people because the anxiety and brain fog just isn’t worth it.’
Lyme disease testing
Many symptoms of Lyme disease are similar to other conditions, making it difficult to diagnose. In the UK, two types of blood test are used to diagnose Lyme disease to be sure of an accurate diagnosis. If spotted early on, patients will usually be given a two- to four-week course of antibiotics to treat the condition. There is currently no clear consensus on the best treatment for post-infectious Lyme disease.
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Living with chronic Lyme – my experience
Having suffered from this disease for nine years, one of the most frustrating things is when doctors tell you that it’s ‘all in your head’.
I first got sick when I was 11 years old, and every doctor I went to told me that I was just trying to get out of going to school, or was ‘just depressed’. It took a year and a half before I was diagnosed with chronic Lyme disease, and even then, I found that my treatment options were limited.
For many like myself, Lyme is an invisible disease. I often appear to be heathy and functioning, while on the inside I am dealing with constant pain moving throughout my body, extreme fatigue, restless legs, and more. Every night I go to bed not knowing how my body is going to feel the next day, making things like attending university or having a job extremely difficult.
The NHS does not offer treatment for chronic Lyme disease, leaving many patients hopeless and with little or no options.
As sufferers of Lyme disease know, the testing is outdated, inaccurate, and unreliable — often taking people years to get diagnosed. Because of this, more doctors are turning towards a clinical diagnosis rather than relying on test results that more often than not come back negative. Borrelia (Lyme disease bacteria) is hard to identify and will not always show up in the patient’s blood, or the patient may have a different strain of Borrelia than the test is looking for.
Some laboratories, such as Armin Labs in Germany, are more accurate in identifying tick-borne infections through blood tests that have been overlooked by other labs. But because not all labs correctly identify cases of Lyme disease, and many doctors only treat based on the ‘standard’ blood tests, an increasing number of patients are now looking for alternative methods of treatment.
Kelly Osbourne, who was diagnosed with stage III neurological Lyme disease, has said: ‘What annoys me is that this is a real, real disease. It almost killed me. I will do anything to raise awareness for it, because I almost died from it, and it’s a debilitating disease that most of the time goes misdiagnosed.’
And as said by Yolanda Foster, Real Housewives of Beverly Hills star and mother of models Bella and Gigi Hadid: ‘We all pull together so beautifully for HIV. Lyme is three times more prevalent right now, it’s a world-wide epidemic and yet we haven’t done anything about it.’