Find out how ticks can cause serious illnesses during Lyme Disease Awareness Month
Lyme disease and its coinfections can cause serious, long-term health issues for those bitten by infected ticks.
Their prevalence here in Scotland is on the increase, as is the number of people reporting chronic symptoms many months and even years after they were first bitten.
And it’s for this reason that Dr Jack Lambert, a consultant in medicine and infectious diseases at the Mater Public and Private Hospitals in Dublin, believes more people should know about the risks.
Originally from Clydebank, he qualified in New York State where he was involved in evaluating and diagnosing many Lyme disease patients.
Having previously worked on HIV and Hepatitis C, for the last five years he has focused his attention on Lyme disease.
He has been astounded at how polarised medical professionals are when it comes to the condition.
Here in the UK, NICE guidelines recommend that patients receive a three to four week course of oral or intravenous antibiotics.
Often, this is not enough to combat Lyme disease or its coinfections and a longer course is required.
But patients are being denied treatment.
Dr Lambert explained: “Part of the problem is that we need better testing as the current antibody test often comes back negative.
“That’s because it only tests for one type of Lyme disease, the one prevalent in America.
“The test being used is not picking up the strains of Lyme that are common here.
“There’s also a window of time in which results will come back negative.
“Other times, patients have been given a short course of antibiotics and because of that their test results will be negative.
“So patients are being told they don’t have Lyme disease when, in fact, they do.
“A teenager with acne can be given a six-month course of antibiotics but doctors are penalised for giving Lyme patients a longer course.
“Between 60 and 70 per cent of the patients I see, who are far more sick than a teenager with acne, respond to long-term treatment.
“Often they’ve been told the illness is all in their head and have even been referred to psychiatrists.
“Lyme disease affects every tissue and organ in your body if left untreated so people can feel like they are losing their mind and their lives become a misery.
“If you hear hoof beats you should think horses, not zebras – doctors need to use more common sense and remember that the NICE guidelines are just that.
“Patients with Lyme are treated very badly, in my opinion. We need far better testing and more research.”
While Dr Lambert is campaigning for change, he has also come up against some heavy opposition.
“There’s huge polarisation between those that believe in chronic Lyme and those that don’t,” he said.
“In my early career, I worked on HIV and then Hepatitis C. I like solving problems which is why I work in infectious diseases.
“Five years ago, I started focusing my energies on tick-borne infections, such as Lyme disease, but I have been maligned by colleagues. It has been a very unpleasant experience, something I’ve never experienced at any other point in my career.
“And if I’m faced with that kind of flack, what must it be like for the patients?”
If someone spots a tick bite and is treated quickly, their prognosis can be good.
However, Dr Lambert treats hundreds of patients who have chronic symptoms – as they were not treated soon enough.
He added: “I treated one lady in Belfast who tested negative for Lyme and was sent to a psychiatrist as it had caused inflammation in her brain. She was given heavy-duty psychiatric drugs instead of antibiotics.
“She went to Germany to get private testing for Lyme and it came back positive.
“I later treated her and she now has her life back and has managed to return to work.
“If she hadn’t been smart enough to get her own test, she could have been out of work for years and years.
“That’s just one case. I’ve had case after case like that.”
Among their number is Livingston businesswoman Janey Cringean, who was bitten in March 2004 during a visit to a country park with her niece and nephew. She has suffered horrendous side-effects ever since.
Due to the lack of support and sympathy she received from the medical profession, Janey (57) founded the Tick-borne Illness Campaign Scotland and lodged a petition, containing almost 2000 signatures, with the Scottish Government.
But following two meetings, almost two years later, she is still waiting for action to be taken.
Janey now wants the public to know how much a tick bite affected her life – in the hopes that others won’t face a similar plight.
She said: “I had a rash and flu-like symptoms and the doctor asked if I had visited America recently.
“When I said no he didn’t think it could be Lyme as he didn’t realise patients could be infected here.
“I suffered excruciating headaches, pelvic pain and chronic fatigue – I was sleeping for 15 hours a day.
“Over the course of three years I saw dermatologists and rheumatologists, as well as GPs, and none of them could get to the bottom of it.”
After three-and-a half years, Janey insisted on seeing an infectious disease expert and was told that she did, in fact, have Lyme.
They started treating her with antibiotics but, in 2010, she was told there was nothing more they could do.
Janey, who runs her own software development business, said: “I felt like I’d been sent home to die.
“But I did my research and sought private treatment and it’s made a big improvement to my health – I can even work part-time now.
“Last September, though, I had a heart attack – there was a 90 per cent narrowing of my main artery which was most likely caused by one of the Lyme coinfections.
“Dr Lambert treats all the infections with a series of antibiotics, antiparasitics and vitamins but, after being on antibiotics for 12 years, I fear it’s too late for me.”
While Janey can afford private treatment, she is in contact with many who can’t through the Facebook forum she set up, which now has almost 400 members.
It’s for that reason she is calling for better testing, more research and a public awareness campaign.
But she feels her petition has fallen on deaf ears.
Janey added: “We need a specialist treatment centre that brings together specialists in the field who can help patients get better.
“But since the petition was handed over in June 2017, I’ve only had two meetings with the petitions committee – in September 2017 and April 2018.
“I emailed in February to ask what was going on and I’ve still not had a reply.
“Dr Lambert is trying to raise awareness – he’s an expert in his field and knows what he is talking about.
“And I’m as credible as you can get. I have four degrees, a background in research and run my own successful business.
“So if we can’t get others to believe us, what chance do other patients have?”
In a bid to raise the profile of Lyme Disease Awareness Month, buildings will be lighting up green this month, including the Titan Crane in Glasgow, the Kilsyth Bandstand and Riddle’s Court in Edinburgh.
To find out more about the campaign, visit www.ticscotland.org.uk.
Make sure you carry a tick toolkit
Dr Nicola Seal, a former entomologist who has worked on developing insect repellents, did a survey for the charity Lyme Disease UK.
And she reported that using a tick repellent containing 20 per cent Saltidin was more effective than DEET.
While it’s not generally available in supermarkets, you can purchase it in outdoor shops.
Dr Seal said: “In Britain and much of Europe, it could be argued that ticks are the most risky biting critters in terms of disease risk.
“We know that some tick-borne diseases can be transmitted pretty rapidly after a tick begins to bite, so prevention is better than cure. Use repellent and keep yourselves safe.”
The longer a tick is left to feed, the higher the chances are that it will pass on any diseases. Incorrect removal will also increase the chances.
So while it is important to remove the tick as soon as possible, it is also important to remove it correctly.
The only safe methods of removal are by using fine pointed, tick remover tweezers or a special tick removal tool.
If possible, take a picture of the embedded tick before using a remover tool or tweezers, then clean the area with antiseptic or wash well.
And if you notice a bullseye rash or flu-like symptoms following a tick bite, see your GP immediately and mention your concerns about Lyme disease.
For more details about tackling bites, visit lymediseaseuk.com/2015/10/26/tick-removal.