A hairdresser left bed-bound by Lyme disease has hit out at doctors who LAUGHED at her and believed she was making up her symptoms.
Sarah Jackson has slammed the NHS for a lack of understanding of the illness which has turned her life into a ‘living nightmare’.
She was a healthy and happy young professional before she was struck down by the illness when she visited Australia four years ago.
Now, instead of looking forward to a new life Down Under, the 29-year-old is practically housebound and has to rely on her mother Julie as her full-time carer.
She was left needing open heart surgery and she suffers seizures, eye problems, excruciating head and neck pain, memory loss, nerve damage and extreme fatigue.
Sarah, from near Colchester in Essex, even has to wear sunglasses inside because she has increased sensitivity to light. She is now appealing for help to fund potentially life-changing treatment in America after she claims she has run out of options on the NHS.
Sarah Jackson was struck down by Lyme disease when she visited Australia four years ago
She has to wear sunglasses inside because she has increased sensitivity to light
WARNING SIGNS TO WATCH OUT FOR
Lyme disease can cause a range of symptoms which may take time to develop. If spotted quickly it can be treated with antibiotics — if not, other symptoms may appear. Early symptoms include:
- A roughly circular red bull’s eye rash, usually around three to 30 days after being bitten. This is known as erythema migrans and its edges may feel slightly raised. It may grow bigger. Some people have more than one rash, others have none. According to the charity Lyme Disease Action, one person in three does not get a rash.
- Flu-like symptoms such as tiredness, muscle and joint pain, headaches, fever and a stiff neck. More serious symptoms may develop weeks, months or even years later. These can include:
- Pain and swelling in the joints.
- Nervous system problems such as numbness and limb pain, paralysis of facial muscles, memory problems and difficulty in concentrating.
- Inflammation of the heart muscle (myocarditis) or the sac surrounding the heart (pericarditis), and, potentially, heart failure.
- Inflammation of the membranes surrounding the brain and spinal cord (meningitis), which can cause a severe headache, stiff neck and increased sensitivity to light.
- Some people develop long-term symptoms, known as post-infectious Lyme disease, similar to those of fibromyalgia or chronic fatigue syndrome, maybe due to an immune system over-reaction.
Sarah said: ‘It is a living nightmare. I have gone from being a happy-go-lucky person able to work for a living to someone having to rely on my parents for care and financial support.
‘Doctors here don’t seem to realise that Lyme disease can be a life-threatening condition, especially when it reaches the stage I have.
‘If you have a broken arm or leg, then it is an easy fix but because this is trickier to diagnose, they seem to lose interest.
‘I’ve even had GPs laugh at me and as good as told me they think I am making it up.’
Doctors don’t understand the complications
Sarah believes she may have suffered her tick bite when she was a teenager and the disease has laid dormant for many years until she became ill when she visited Australia’s Gold Coast in April 2013.
‘I had only been out in Australia since the end of January and I was loving it there but had to come home as I was so ill,’ she explained.
Many sufferers have spoken out about their years-long struggles with getting diagnosed. It was confirmed Sarah had Lyme more than a year after her symptoms emerged in July 2014, and only because she went for private tests.
Sarah was given oral antibiotics. But experts say that if there is delay before treatment begins, there may be less chance of a full recovery.
She says that as well as concerns about delayed diagnoses, NHS doctors do not fully understand the complications of the disease.
Sarah developed postural orthostatic tachycardia syndrome (POTS), a condition in which a change from lying to standing causes an abnormally large increase in heart rate.
She says this leaves her feeling as if she is going to either have a heart attack or faint.
The 29-year-old was left needing open heart surgery and she suffers seizures
‘My disease is now affecting my heart and brain so it is very serious but from speaking to some people in the NHS here, it’s as if they don’t care,’ she said.
‘I know from speaking to a lot of people on the online forums that they are going through the same challenges as me.
‘If you cannot show medical professionals the rash from the bite it is as if they don’t believe you.
Intensive treatment abroad needed
Despite numerous examinations and tests, Sarah says doctors in the UK are now at a loss how they can help her any further.
When she had a seizure last summer, frustrated with the care she was receiving here, she sent her MRI results to a leading Lyme specialist in the US.
She says he told her that her case is becoming ‘more concerning’ and that she now needs more aggressive treatment than the oral antibiotics she is currently given.
Sarah also suffers eye problems, excruciating head and neck pain, memory loss, nerve damage and extreme fatigue
Specialists say she is at very high risk of another seizure
Sarah is now pinning all her hopes of recovery on fundraising £40,000 for intensive treatment in the US from one of the world’s leading doctors.
She has been told she will most likely need IV therapy, as the oral medications are no longer adequate to get to the layers of infection and damage in her brain and heart.
‘The neurologist and my USA Lyme specialist both said I’m at a very high risk of another seizure, so I am now on multiple anti-seizure medications to try to prevent any further episodes,’ she said.
Her father, John, a 57-year-old builder, is working seven days a week to help finance his daughter’s private treatment.
‘It’s been really hard for mum and dad – they know what I was like before this all happened and how happy I was living in Australia,’ she said.
‘I was going to move out there permanently and they saw the effect it had on me having to come home.
‘Dad has to keep taking out loans to cover the costs of everything.’
But with 30-minute phone consultations to her specialist in America costing £300 and private tests in the UK costing thousands, the money is quickly disappearing.
Sarah said the decision to go public with her fundraising efforts had not been an easy one.
‘I have always been fiercely independent and have never been someone to ask for help, but I am terrified, lonely and despairing of what my future might look like if I don’t reach the USA for more intensive treatment.
‘Currently my Doctor in the USA is a leading expert in Lyme, he gets hundreds of people well every year and brings many back from the brink. So if anyone can help me, he can.’
For more information about Miss Jackson’s story or to donate, visit here.