How a tick bite left a healthy mum blind, paralysed and ‘waiting to die’
EXCLUSIVE: Within days Christine Jennings started to feel ill, and today is blind, bed-bound and needs round-the-clock care
By Matt Roper
Sitting on a park lawn as she played with her two-year-old daughter Christine Jennings had no idea her life was about to be ripped apart.
The mother-of-four had taken her children to Leicester’s Bradgate Park to get them away from paint fumes as she redecorated the family home.
It was a decision she has regretted every day since.
That night, as she got ready for bed, Christine, then aged 32, was horrified to find an insect attached to the side of her torso at the rib cage.
Screaming at the sight of the creepy crawly – a deer tick – which had buried into her skin, she managed to rip it out.
Three years later she would learn she had left the creature’s tiny head inside.
Within days Christine, a talented painter and interior designer, started getting pains all over her body, migraines and swollen knees.
She thought she had picked up a virus and put the headaches down to the paint fumes.
Yet it was only the start of a harrowing litany of serious and irreversible health afflictions – made worse by what she claims was shocking NHS indifference to her plight – which would rob Christine of everything.
Today, aged 57, the once energetic and devoted mother is a prisoner in her own body – unable to move, blind, bed bound and confirmed to a dark room.
She is in constant and excruciating pain as, in her words, she lies “waiting to die”.
Christine had been infected by Lyme disease , carried by the tick which bit her on that summer outing in 1994.
The rare bacterial infection is transmitted by the black-legged tick which feed on deer.
It can be more effectively treated if diagnosed early – yet Christine claims NHS doctors have refused to diagnose her and now claims she is now being refused treatment which could improve her quality of life.
Remembering how her full and accomplished life suddenly went into freefall 25 years ago, she said: “I’d taken the kids out on a nature walk to get out of the house I was painting. I’d recently got divorced and we’d moved into a new home.
“After we’d gone quite a distance I sat in the short grass with my youngest while the others played with the dog.
“We were a long way from the deers, I was wearing walking boots, jeans and a denim blouse.
“When I got home I carried on decorating and ended up going to bed in the early hours, which is when I discovered I’d got this insect attached to my rib cage.
“I only realised it was a tick when I couldn’t get it off and after a bit of panic I eventually managed to grasp the body and rip it off, which I later discovered was the worst thing to do because I’d left the head in.”
Lyme disease rarely infects people if the entire infected tick is removed from the body within 36 hours.
In Christine’s case, the head was discovered and surgically removed three years later.
Two weeks after being bitten Christine got a bulls-eye rash on her arm and decided to go to the doctor.
She said: “From that moment on my life never recovered.
“I’d never been one for being ill or suffering from bugs or headaches.
“The symptoms were like a flu without the cold, a really bad migraine , head pain, neck pain, and swollen knees. I was so ill I couldn’t get out of bed.
“When I got the rash on my arm a week after coming down with the other symptoms, I went to the doctor, who dismissed it as ringworm.
“I told him about the tick, but he said that I didn’t have to worry, that you only get things like that in America. So Lyme disease was dismissed right from the offset.”
Christine claims doctors continued to rule out Lyme disease as she was afflicted by more health problems, including back pain, knee problems, and tinnitus .
She said: “I was so immobile at times that I couldn’t stand up, go up the stairs or move around. I felt so ill.
“Within four years I was having to use a wheelchair if I wanted to get from A to B.
“Until then I didn’t know about Lyme disease but one day I was reading a magazine article about little known summer illnesses, and there was some information about it.
“The symptoms were identical to mine. The fact that it was carried by deers, and I had been in a deer park.
“Everything I had been experiencing fitted, but doctors wouldn’t accept it, they just dismissed any mention of Lyme disease.”
Unable to get a diagnosis that would allow her to get treatment, Christine’s health continued to deteriorate as the infection wreaked havoc on her body.
By 2000 it began to affect her eyes, and knowing that Lyme disease can cause blindness, she began a desperate search for experts who were researching or treating the disease in the hope of saving her sight.
During that time she managed to get six clinical diagnoses, outside the NHS, for Lyme disease.
After after meeting a specialist in Sunderland she started a three-year treatment programme, in which she received a dual combination of antibiotics through a Hickman line.
But she was devastated when she was told she was already too ill to continue the treatment.
The disease had been left too long and she had lost the chance to bring it under control.
By 2004 Christine had developed a rare combination of four eye diseases.
She says when a “staggered” doctor at a specialist eye hospital examined her, he found only three other similar cases – and all were as a result of Lyme disease.
Christine was passed on to a doctor who had worked with Lyme disease in the US “had no doubt” she had the disease and suggested a treatment regime involving neurologists and other professionals.
But Christine claims: “Then he received a letter from a public health officer and he told me he’d been told go to down a different path.
“So even though this rare combination of eye diseases needed specialist treatment, I was denied that care.
“I believe they were more worried that I would file a lawsuit against them if they acknowledged it really was Lyme than they were worried about my life.
“But that was never the case. I would have been happy to have had my sight saved and received the medical care I had been fighting for for years.
“I’ve lost half of my life to this disease. My mental and emotional ability to carry on fighting is rapidly diminishing now.
“I can’t cope and the sense of hopelessness, knowing that there is no acknowledgement on any level, is very distressing.”
Christine says she has considered ending her life – but can’t do that to her children and grandchildren.
She said: “Right now, I’m just existing. I feel that I’m just lying here waiting to die.
“I’m bed bound, I can’t move around without assistance, I need 24-hour care day and night, I’ve had seven mini strokes, three bleeds on the brain, I’ve got arthritis , muscle wasting, bowel problems, I have no use of my left side, and I need help to eat, drink, shower, and get dressed.
“I’ve lost all independence and I’m now totally blind.
“The iris on one of my eyes has split open and blood vessels are exposed and are pushing through to lay on the surface of the eye.
“So even though I’m blind I have to stay in the dark as the slightest bit of light affects all the nerves in my eye and increases the pain in my brain.”
“Some days I don’t cope at all. Other days I want to end it, but I couldn’t take my own life because I’ve got four children, and grandchildren, and I couldn’t do that to them.
“Two of my daughters care for me, and without them I wouldn’t get through my days or nights.
“I’m never going to be cured now, it’s too late. I’m never going to get my sight back. A lot of what is wrong with me is damaged and cannot be put right.
“But I could be supported and my quality of life could be improved. That is all I am asking for.”
A spokesperson at Leicester’s Hospitals said: “We are sorry to find out Christine is unhappy with her care.
“Christine has been invited to appointments this year, but has not attended them.
“We have not yet received a formal complaint about her current concerns so would encourage her to contact our Patient Information and Liaison Service, and we will happily look into them for her.”
Expect to hear more stories just like this one. This isn’t going away, in fact it’s spreading, and authorities are still in the Dark Ages.
This story also highlights the importance of early diagnosis and treatment. Even if you’ve had a delay, delay it no further and get to a ILADS trained practitioner. This does not get better on its own but will worsen until there is irreparable damage.
Appropriate treatment is everything.
If you do not know the Lyme literate doctors in your area, contact your local support group. They do.