When Justin Bieber revealed his battle with Lyme disease, it raised the profile of an illness that can hide, mimic other diseases, and be hard to diagnose as the tell-tale red bulls-eye rash does not always show.
That is what happened to Tom Jeannesson, 18, an up-and-coming British-French skier from Grenoble who fell victim to Lyme disease in December 2016.
“At first I had a fever and felt really down, and then it felt like someone rummaging around in my knees with a needle.
“It moved to my jaw, my shoulders. In the end, it was all over.
“I was exhausted, sleeping 13-14 hours a day, each day, and still tired.
The doctor gave me broad spectrum antibiotics, but they didn’t help.
He ran blood tests for everything he could think of, and added Lyme disease as an afterthought.
“I’d never heard of it and I couldn’t remember being bitten by a tick. I hadn’t even seen one. The first tick I ever saw was on a dog last summer.” His British mother Anna said: “He had not seen any sign of the bulls-eye, which is often a first symptom.”
Lyme disease is hard to diagnose because the two blood tests available are fallible. It can take years to develop after a bite, and the bacteria can also “hide” in brain tissue or muscles, evading tests as well as antibiotics.
GPs normally prescribe three weeks of antibiotics, then more tests and a check-up in hospital.
Anna, a university teacher, said: “Very often, they sign people off as cured when they aren’t really. The first three-week course of antibiotics did help, but he was still ill.
“We had to ask around and go to all sorts of doctors until we found one willing to prescribe antibiotics over a period of six months.”
Tom also went on a gluten-free and lactose-free diet.
Making different meals for Tom alone was complicated so she, his French father Ben, and young brother Matéo, 15, also joined in. “It was very boring, lots of fruit and vegetables,” she said.
Tom also used supplements and essential oils. “I swallowed some of them,” he said, “and there were others I had to rub on my feet.”
As well as adjusting their diet, the whole family did a lot of sport, which was easy for double French under-19 Moguls champion Matéo, who skis for Team GB.
Tom said: “I think the antibiotics worked, the diet helped and the essential oils, probably all of the things helped a bit. Sticking to the diet was tough, especially as we were trying to cut out sugar as well.
“I was desperate for pasta. Gluten-free pasta just isn’t the same.”
Now, apart from pain in his hip when skiing, Tom is almost back to normal – more than three years since he first started feeling ill.
He was home-schooled to help with the disease and skiing but is now in his second year of prépa – preparation to study at a grande école – and has begun competing again and training with Matéo.
“I’m doing engineering, and the school is good at organising our timetables so we can ski.
“A linked association funds selected sportspeople, so I have a double project: engineering and skiing. I’m doing the course over three years, not two, due to my high-level skiing, which means I can start competing again.
“I did French Championships in 2017/18, then last season I did two races and was able to train more.
“I got a good ranking in freestyle moguls despite being in agony, and this year I’m competing. I’m still not 100% normal, because I still have pain, but I’ve learned to deal with it and do what I can despite it.”
He added: “Leading a healthy lifestyle is important – even more so with Lyme disease.”
Tests not 100% reliable
A national plan to fight Lyme disease was launched by the health ministry in 2017 to raise awareness among both the public and health professionals.
Specialist diagnostic and treatment centres were also set up, with the latest at Lannemezan, Pyréneés-Orientales.
Specialist Dr Raouf Ghozzi, president of the Fédération Française Contre les Maladies Vectorielles à Tiques, highlighted that the bacteria responsible for Lyme do not always show on the two diagnostic tests.
He urged people to be aware of the tell-tale visual sign of Lyme disease, which appears in the days or weeks after someone has been affected.
This is a red ring, or halo, around the bite site, which widens out over a period of days.
The ring can appear soon after the bite, or up to a month later.
If getting a GP appointment is slow, take a photograph to let the doctor see the ring and measure its progress.
You can reduce the chances of bites by wearing clothes covering your skin when walking in fields or long grass and using insect repellent.
You should inspect your body carefully after a walk and, if possible, ask someone else to check hard-to-see areas.
Ticks like moist parts of the body, such as the armpits or the groin. Their bites are often not felt. If you are bitten, the advice is to remove ticks using a small “jemmy”, available from pharmacies, wriggled under the tick and twisted anti-clockwise.
Official estimates are that between one and three tick bites in 100 might result in the transmission of the bacteria causing Lyme disease, but not everyone infected develops the disease.