We may be facing a Lyme Disease epidemic yet RTE documentary tonight explores why it's a controversial issue
We may be facing an epidemic, yet not all medics agree on this controversial issue. Chrissie Russell speaks to the sufferers who’ve had to battle to be heard
Three years ago, aid worker Nicci St George Smith (36) was sitting on a plane to a job in Bosnia when she slowly became aware of people looking at her. “I looked down and realised the entire right side of my body was trembling really badly,” she recalls. “My shoulder, my arm, even my lip was shaking like it was in spasm.” Embarrassed, she passed it off to fellow passengers as a fear of flying.
But she knew this wasn’t the truth. The tremors were just the latest in a long line of health complaints. Over the past four years she’d experienced a multitude of conditions including repeated, serious kidney infections, upset stomach, dizzy spells, minor facial paralysis and low blood pressure.
By 2015 the Kildare woman found herself spending the first two months of the New Year with what was later diagnosed as ovarian tumours that had to be surgically removed. Spells of vertigo followed and problems with standing and walking.
“Perhaps most frightening was I didn’t feel like I knew myself any more,” says Nicci. “I’ve always been a very positive, empathetic person, but now I felt numb — it was as if my emotions had become completely inaccessible to me. My mind had slowed down and I couldn’t remember things. It was terrifying. I’ve always looked after my health, I don’t smoke, I don’t drink, I don’t do drugs and I don’t eat meat. I had no idea what was happening to me and no one else seemed to know either.”
After years of antibiotic prescriptions and diagnoses of chronic fatigue, fibromyalgia and ME, Nicci finally got an explanation that she felt made sense: Lyme disease. Lyme disease, or ‘Borreliosis’, is a bacterial infection passed to humans through a tick bite. The corkscrew shape of the bacteria enables it to burrow through tissue. Infection usually starts with flu-like symptoms and a rash at the bite site but, if left untreated, a wide range of debilitating symptoms can develop.
Or can they? Herein lies the controversy. Because of the lack of lab studies or controlled treatment trials, some in the medical community remain unconvinced about whether the chronic version of the condition exists.
The Centres for Disease Control and Prevention (CDC) has declared Lyme disease to be the fastest growing disease in the world. But when it comes to Chronic Lyme Disease, a report published this year by the organisation has this to say: “Chronic Lyme Disease, on the other hand, is a diagnosis that some healthcare providers use to describe patients with a variety of conditions such as fatigue, generalised pain and neurological disorders,” adding that there is no laboratory evidence to support such diagnosis.
The New England Journal of Medicine described it as “the latest in a series of syndromes that have been postulated in an attempt to attribute medically unexplained symptoms to particular infections”.
“If Chronic Lyme Disease does not exist, then I would love to see the medical profession prove this fact,” says producer James Pembroke, whose documentary, Living With Lyme Disease, is being shown tonight on RTE One.
It’s a timely documentary: a recent New Scientist article predicted we’re heading for a Lyme Disease epidemic without the back-up of a vaccination.
The disease has slowly been garnering greater attention, thanks in part to the number of celebrities — such as Alec Baldwin, Ben Stiller, Kelly Osbourne and Avril Lavigne — talking publicly about their battle with the ‘invisible illness’.
But as James’ documentary reveals, in Ireland especially, there’s still a worrying lack of awareness. He has a very personal reason for wanting to change that. “I was diagnosed with Lyme disease in Germany in December 2015,” he says. “After being ill for the previous 12 months in Ireland and numerous visits to my GP and referrals to a rheumatologist (who was at a loss as to what was causing my condition) I decided that, if I can survive this, I will make an awareness-raising documentary on this condition which seems to escape the medical profession, not only in Ireland, but worldwide.”
Nicci was bitten by a tick whilst working in upstate New York at a private summer camp in 2000, then aged 20. She took a 10-day course of antibiotics and didn’t think any more about it. It was only when she realised the parallels between her illnesses and those of Lyme suffers online that she made the link.
Like many in Ireland, Nicci was forced to look further afield for diagnosis and treatment. She saw doctors in Germany, Sweden and New York and now takes a herbal treatment called the Cowden Protocol made by American firm, Nutramedix, which can cost patients upwards of €170 per month.
“I have a GP in Ireland who said ‘I know nothing about this but whatever I can do to help, I will’ and he liases with my other doctors,” explains Nicci. As for the herbal treatment programme, she laughs: “I would have been the biggest sceptic in the world about anything ‘herbal’. But that, and changing my diet (I no longer take sugar or gluten), has completely changed my entire life.”
“There are people in trouble psychologically, having to battle doctors as well as this debilitating disease,” says James.
Cork-based GP Nick Flynn says it’s not as clear-cut as saying doctors are in ‘denial’ about Chronic Lyme Disease, but rather that diagnosis is just not always a straightforward process. He explains: “Where the diagnosis is purely based on clinical symptoms without test-positive proof of previous Lyme disease, the differential diagnosis is large. There is no scientific proof that repeated courses of antibiotics will be helpful.”
He says that some patients presenting with medically unexplained symptoms may have evolving conditions below the threshold for diagnosis and he worries that, in their quest for an ‘answer’ some people may be left vulnerable to practitioners who take advantage of their desperation.
According to the HSE website, the number of Lyme disease cases in Ireland is between 50 and 100 every year. But the concern is that, because of poor awareness, limited screening options and misdiagnosis, that figure might actually be much higher. Certainly the issue for better testing has been raised in the Dail, with the understanding that the current Irish tests for Lyme and tick-borne co-infections aren’t as accurate as those used in German labs. Early detection of Lyme disease is crucial because it’s generally considered to be easily treatable with antibiotics in the early stages of infection. But the message that Living With Lyme Disease wants to drive home is that this isn’t just something to worry about abroad. “In the documentary, we speak to Dr Eoin Healy, a biologist from UCC who really opened my eyes on how prevalent these ticks are in the countryside,” reveals James.
“When our presenter asks him: ‘How many ticks are here?’, he replies: ‘Millions. Billions.’ I hope people watching the documentary will become aware of the dangers of vector-borne diseases, especially from the black-legged tick which are widespread in Ireland, especially where there are large numbers of deer present, and they will protect themselves and their children from this disease.”
Living With Lyme Disease is on RTE One tonight at 10.35pm.