- Lyme disease is spread by infected ticks, and has a huge range of symptoms including fever, mood changes, joint and nerve pain, and severe fatigue, according to the Centres for Disease Control and Prevention (CDC).
- The bacterial infection is difficult to diagnose due to the wide range of symptoms and the actual likelihood of spotting a tick bite being relatively low, according to The Guardian.
- I was diagnosed with Lyme disease after getting bitten by a tick in St James’s Park, next to Buckingham Palace in London. I suffered from symptoms including short-term memory loss, joint pain, and severe fatigue.
- I was treated with a two-week course of antibiotics, but it took around 18 months for my symptoms to completely subside.
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It was the final day of what should have been a relaxing family vacation in Greece, back in August 2017, but I woke up feeling like I’d barely slept and had been hit by a bus.
This exhausted feeling had been nagging me for weeks, but as the five-day trip went on, I could barely get through a conversation without forgetting what my family and I were talking about. My joints ached constantly, and sleeping 14 hours a night barely felt like it was enough. What’s more, a bullseye-patterned rash had appeared on my inner left thigh that morning, and I was worried it was some kind of skin infection.
The next day, after I had arrived back in London and dragged my older brother along to the emergency room with me, I found out I’d been bitten by a tick and likely had Lyme disease, which was confirmed when my blood test results came back a few days later.
Getting diagnosed isn’t always straightforward
Lyme disease, a tick-borne bacterial infection, is pretty uncommon in London (one emergency room doctor at the east London hospital I visited told me she had never seen a case in person before), so I was sure there was some kind of mistake.
The Independent reports that there are around 1,000 diagnosed cases in the UK every year, most commonly in rural areas, compared to the 300,000 annual reported cases in the US. If it’s not diagnosed early, it can lead to neurological problems like Bell’s palsy (paralysis on one side of the face), as well as memory and heart problems, according to Mayo Clinic.
It turns out the rash on my inner left thigh was actually where I’d been bitten – while sitting on the grass in St James’s Park in central London that June, a month before my hospital visit.
A rash with a red ring around the site of a tick bite, known as erythema migrans (EM), which appears three to 30 days after being bitten, is one of the main telltale signs of Lyme disease.
Lyme disease comes with a huge range of symptoms, from dizziness to nausea and facial numbness
I was sent home from the hospital with a two-week course of antibiotics and instructions to rest up for a couple of days, and that was it. There was no mention of how the illness was going to impact me long-term.
But Lyme disease has a huge range of other symptoms, according to Centres for Disease Control and Prevention (CDC), which include fever, chills, severe headaches, neck stiffness, night sweats, pain in muscles, joints, and bones, dizziness, nausea, and facial palsy, as well as the EM rash. With the symptoms being so broad, and blood tests known to be pretty unreliable, as reported by The Times, it can be difficult to diagnose.
The CDC says the EM rash only appears in around 70% to 80% of cases, so I was lucky that I’d spotted it and was diagnosed relatively quickly. But it’s not uncommon for people to go months or even years before getting to the root cause of their symptoms, by which time much more lasting damage can be done.
The Guardian reported in August 2017 that former England rugby captain Matt Dawson had to undergo heart surgery after being diagnosed with Lyme disease. He had also been bitten by a tick in a London park.
In January, Justin Bieber announced that he had been diagnosed with Lyme disease and chronic mono, and that it had been “a rough couple of years.”
Six months after my emergency room visit, and after dozens of follow-up doctor’s appointments where I tearfully insisted I wasn’t feeling any better and could barely get out of bed, my GP diagnosed me with Post-Treatment Lyme Disease Syndrome and apologetically told me the only thing I could do was wait it out. It would be another 18 months before I stopped having almost daily joint pain, anxiety, and severe fatigue.
The CDC website explains: “Although most cases of Lyme disease can be cured with a two- to four-week course of oral antibiotics, patients can sometimes have symptoms of pain, fatigue, or difficulty thinking that lasts for more than six months after they finish treatment. This condition is called Post-Treatment Lyme Disease Syndrome (PTLDS).”
It adds that patients “usually get better over time, but it can take many months to feel completely well.”
Symptoms can be long-lasting, and recovery usually takes months
I had a very understanding manager who allowed me to work from home several days a month, although I found coming into work was often a much-needed distraction. Most evenings, I was so exhausted that I was asleep by 7 or 8 p.m., and social plans very often went out the window. Thankfully, these days my symptoms have eased off to the point that I now only suffer from joint pain and fatigue on rare occasions when I’m feeling particularly run down.
Despite the fact my GP was patient, it also often felt like I was talking to a brick wall due to the lack of Lyme-literate doctors available to me.
If I’d known which signs to watch out for at the beginning, or had a doctor who knew how to advise me on coping with the side effects in the months that followed, the experience might have been less difficult.
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