Grandmother Justine Railton’s life has been ruined by tick-borne Lyme disease – and she fears it could affect three generations of her family.
The 45-year-old believes she passed on the infectious bacterial condition to her 21-year-old daughter in the womb, and says she is terrified that it could be passed on to pregnant daughter Liberty’s as-yet-unborn child.
Justine, who lives in Carmarthenshire, spoke out amid warnings that cases of the disease are spreading as the ticks that carry it spread into parks in residential areas.
The NHS confirmed that the number of cases has quadrupled in just 12 years, partly because warmer winters are prolonging the lives of the ticks.
In common with many sufferers, Justine’s condition went untreated for a long time and has left her seriously ill as a result.
Originally diagnosed as chronic fatigue
She was only diagnosed after travelling to Belgium to see a specialist because doctors in the UK had, for seven years, failed to identify her condition as Lyme disease – they told her she had chronic fatigue.
“If you are lucky enough to catch it early in the first few weeks or months you have a good chance of recovering,” she said.
“But for someone like me the problem is that over the years the infection has slowly worn you down and everything starts going wrong.
“People can have problems with their hearts and all sorts of things can start going wrong.”
She has been unable to work for the last seven years.
“Most of the time I am bed bound and mainly housebound,” said Justine, who lives in Newcastle Emlyn.
“I haven’t been able to work for the past seven years.
“I use a wheelchair to go out for short trips when I can manage it. I have neurological problems like jerking, shaking, speech slurring, eyebrow ptosis, I can’t remember words or phrases or names, I forget things very easily – I can’t remember what happened at the weekend.”
Fatigue is triggered by the slightest thing
“A phone call can be too much at times,” she said.
“I have joint pain and severe brain fog and feelings of unreality and at times anxiety.”
Now she is terrified her pregnant daughter, who also has the illness, could pass it on to her baby.
“We live in a rural area with a lot of sheep near by,” the mum-of-four and grandmother-of-one said.
“When my daughter was growing up she would take herself off and lie in the long grass near the orchard. It is possible she has been bitten.
“But I have had it since before she was born.
“There are studies that suggest it could be transmitted through the placenta and she could always have had it.”
She said Liberty was “now going through pregnancy not knowing whether her baby will be OK”.
“My main concern is that she is only 21 and has been ill since she was 15,” Justine said.
“She is now expecting her first child and there is some evidence her baby could be at risk.”
Liberty said she had found it difficult to get treatment.
“It’s almost like I was never diagnosed,” she said.
“There have been studies showing the possibility of passing the disease to your unborn child and it seriously affecting their life,” she said.
“But no medical professional willing to do anything about it because they think you are having psychological issues – they treat you like you are crazy – is horrible and messed up.
“I now just worry about seeking treatment for myself after the birth,” she said.
“How will that work? Where will the money come from?
“Then I will have to go through the process of wondering whether my child has it and the costs and heartache relating to that.
“It could all have been avoided if the disease was better understood.”
Justine has suffered complications as a result of her condition
“The doctor found I have neurological Lyme disease as well as Bartonella, which is a co-infection with Lyme and can affect the brain,” she said.
“He also found that I have had past exposure to Tularaemia – which is very rare for the UK, and also went undiagnosed at the time – most likely contracted from a tick bite.”
Tularaemia can lead to fever, lethargy and loss of appetite.
Justine also has Chlamydia Pneumoniae. That causes pneumonia.
“The doctor tested my immune system as well as for bacterial and viral infections and he could see my immune system was not working well,” she said.
“Unfortunately, because I have been left ill so long I have now developed a condition called mast cell activation syndrome – that makes me have allergic reactions to lots of things like drugs, perfumes, chemicals etcetera.
“This has meant I can’t tolerate normal treatments like antibiotics and so it is very hard to know how it will be treated, and if I will ever get better.”
Justine is “severely ill.”
Justine worries her other children could also have Lyme disease. So far they have “seemed OK.”
“At the moment we can’t afford to get everyone tested,” Justine said.
“And as I am the most ill we are concentrating on my health first.”
Treatment abroad is expensive. So far it has cost £6,000.
“That is perhaps the tip of the iceberg,” Justine said.
“If I was going back for intravenous antibiotics that trip alone would cost me £12,000. At the moment I cannot afford that.”
“It has quite honestly been a nightmare for me and my family,” Justine said.
“I just wish it would end and I could have my old life back.”