Perthshire boy’s 11 year health ordeal
Son finally returns to classes
Melanie Bonn 10 JAN 2020
A Perthshire mum has revealed the “nightmare” of her teenage son missing over a year of high school because he has been suffering from a condition connected to Lyme disease.
Finlay Trotter (16), from Bankfoot, was all set to play a lead role in Perth Academy’s summer show 19 months ago. But a raft of worrying symptoms doctors could not offer a diagnosis for got the better of him.
With raised glands, reocurring earache and severe pain in his hands and feet, he was unfit to attend school.
Finlay had to drop out of not just the play but all of his studies – and at a crucial time in fourth year. He last went through the school gates in November 2018. Soon after he was diagnosed with Bartonella.
His mum Ruth told the PA: “Just before that, the school had brought it to my attention just how much time Finlay had missed in recent months. They sent an email asking if I realised how often my son was off.
“He wasn’t a kid who messed around, Finlay was serious about his schoolwork.
“He was at the upper end of his classes before he left.”
This week he attempted to go back, with the hope of just getting a couple of subjects under his belt this year.
But this first week of term was not plain sailing, with the teenager needing to return home at lunchtime on Monday, before missing Tuesday altogether.
Finlay’s friends have taken exams in the time he has been away and the promising student now finds himself in the bottom of his maths and English classes when previously he’d been a strong learner.
His mum says since contracting the mystery bacterial infection, it has been “a nightmare for him”.
She says she “honestly doesn’t know about his future”, fearing his life may never be the same.
When things fell apart in November 2018, Finlay’s unexplained pain and tiredness hit his other big interest – street dancing.
He had been part of a squad, achieving countless firsts in competitions performing solo and with friends in his crew, J Squad.
“On what would be his final competition, just before going on with his crew, Finlay told me he couldn’t move his fingers,he said they were agony,” Ruth recalled.
“It was quite scary, he said he was feeling awful, but he pushed through the competition. That would be the last time he danced.
“My youngest son went from dancing four or five hours a week to not being able to get out of bed.”
Since Finlay stopped dancing, the street dance crew has disbanded.
Ruth explained how a walk in the country was the root of her family’s ordeal with Bartonella, a ‘co-infection’ of Lyme disease.
“Eleven years ago in 2008, Finlay was out with me on a walk with his two older brothers. When we got home he had 13 ticks buried in his skin. The other boys didn’t have one. I’m convinced that’s when he got infected.
“There is false information going around that ticks need to be attached for 24 hours to pass on bacteria. But they literally just need to be attached, they then bring up the contents of their stomach then wait for fresh blood.
“Whilst not all ticks are deemed to have infections, approximately five per cent do. Three months after that day he got the bites, oval lumps had appeared on his legs. Finlay was ill and we took him to hospital to get tests for leukaemia and cancer.
“I now believe this was the start of his Lyme disease. He was diagnosed with Henoch-Schonlein purpura (HSP), a condition that would mean his immune system was over-fighting an infection. We were sent home with the view he would improve with time.
“It took a frustratingly long time to get the correct diagnosis. At the age of eight he started having hot feet which kept him awake at night.
“After lots of tests through the NHS, the doctor said he’d just have to put up with it as they couldn’t find anything wrong.
“They admitted it was very unusual for a child to have this.
“He had various symptoms over the years, stomach aches, reoccurring ear infections but we became really concerned in November 2018.
“Finlay’s joints were agony, he had stomach aches, earache and swollen glands. They could tell something was a miss by his bloods. Nerve tests proved inconclusive.
“He had scans, saw rheumatology, and was tested four times for Lyme.
“Previously three tests for it came back negative. The GP wasn’t going to get him referred because the tests had said no to Lymes.
“In the UK, the Lyme disease test on the NHS is only approximately 60 per cent correct.
“The infectious diseases clinic in Dundee never even saw him. They just wrote back saying no, they didn’t believe he has Lyme disease. That made me really angry, not to even meet my son.
“So many people report the same thing, that Lyme disease wasn’t picked up and the vital time window to treat it and stop the other stuff that follows was missed.
“The NHS doctor suggested he might have ME or fibromyalgia but, as his mum, I wasn’t convinced as he had so many symptoms.
“It was soul destroying as a parent. If you don’t know exactly what you are dealing with, how can you treat it?
“In January 2019 stretch marks started to appear on his lower back and arms. These marks continued to get worse and more angry-looking, changing on a daily basis.
“I finally read up on something called Bartonella. And that’s what it is.
“The Bartonella henselae bacteria can lead to hot feet, stretch marks and joint pain.
“It’s a bacterial infection usually picked up from a scratch from a cat, but also from a tick bite. It’s known as a ‘coinfection’ of Lyme disease.
“Finlay has Bartonella. He got his diagnosis last April from Armin Labs in Germany.
“Finlay has made improvements lately that have made it possible to reconsider school, but that was only after Annette Montague-Thomas, an alternative therapist who had treated AIDS in South Africa, saw him.
“She’s been absolutely phenomenal. Since Finlay has been on her herbal treatment, he has steadily been getting better.
“Chillingly, Annette said she’d found it easier to treat people with the AIDS virus that those with Lyme’s.
“He’s not out of the woods yet, but there’s been a massive improvement. He has been undergoing biomagnetic therapy which has definitely helped as well.”
Explaining her reasons for sharing Finlay’s story, Ruth said “I’m looking to help spread awareness of Lyme disease.
“The NHS do an amazing job overall, but I believe they need to be a lot more hot on this, they need to take this problem more seriously.
“In February we welcome Lyme Disease GNHCT Scotland to Perth, to help people all over Scotland with Lyme disease.
“They have also found a Lyme link too in people with autism.
“More investigating needs to be done but the results so far are very encouraging.”