A student has shared videos of her having seizures and tremors because of untreated Lyme disease which she says has ‘taken away so much from me’.
Steph Todd, 22, was diagnosed with Lyme disease in January after suffering from ongoing pain, tiredness and seizures for years.
She said doctors misdiagnosed her multiple times and now cannot help her any more, so she wants to travel to the US to get treatment.
People have been ‘shocked’ by the seizures she has and likened it to seeing someone ‘possessed’, Miss Todd said.
If Lyme disease, which is spread by ticks, doesn’t get treated it can rumble on for years and spread to the brain, triggering symptoms including fits, tremors, anxiety and a deadly swelling of the membrane inside the skull.
Steph Todd, from Thornbury near Bristol, had been studying at university before she started having seizures because she had Lyme disease which had gone undiagnosed for years (pictured before becoming ill)
‘When people have witnessed the fits they’ve been shocked and said it looks like I’m possessed or something,’ Miss Todd said.
‘All of my independence is out of the window, it’s taken my degree and a lot of friendships.
‘It’s taken away me living on my own and on my terms, it feels regressive.’
Miss Todd, from Thornbury in Gloucestershire, had been about to start her final year of studying for a degree in textile design but has had to move home so her family can help to look after her.
She said even walking and reading have become difficult because the symptoms have become so bad as a result of her condition going undetected for four years.
The first sign of her illness was a circular rash which appeared on her neck in 2015 along with flu-like symptoms.
But when she went to see a doctor, they believed she had ringworm and she thought no more of the issue.
When she was at university, however, she started to feel more serious symptoms and suspect something was really wrong.
‘I started getting visual migraines,’ she said. ‘No one could explain what was happening then I started getting really bad migraines that would put me in bed for days at a time.
‘I would be exhausted all the time after doing small things and struggled to look after myself. Then chronic pain started in all my joints and muscles.’
Miss Todd first had a seizure when she was en route to a concert in London last year and has since required regular medical help
Miss Todd had to pause her university studies so she could move home to live with her parents again and be cared for because she has become so ill (pictured recently)
Miss Todd, pictured at home in bed, said she can’t go out with her friends any more because she ends up bed-bound in pain
HOW DOES LYME DISEASE AFFECT THE BRAIN?
Although early symptoms of Lyme disease – a bacterial infection spread by ticks – are mostly limited to a circular rash and flu-like illness, the infection can have a more devastating impact if left untreated.
The early symptoms usually happen within the first month of infection.
But others, caused by a wide spread of the infection through the body and into the brain and nerves, may take months or even years to appear.
They can include difficulties concentrating, muscle weakness or paralysis, tremors or seizures, anxiety or depression, memory problems and sleeping difficulties.
Lyme disease is hard to diagnose by these symptoms because they are so vague and similar to other illnesses like rheumatoid arthritis or multiple sclerosis, and the condition often goes undetected.
Lyme is rarely diagnosed by testing for the bacteria in the first place because guidelines dictate patients should get antibiotics even if a GP as much as suspects they have the condition.
It’s thought neurological complications may be caused by inflammation caused by the body’s own attempt to rid itself of the infection.
Experts are divided on how to treat Lyme’s neurological symptoms, though trials have suggested weeks or month-long courses of antibiotics could be effective.
Sources: Neurology Today and the National Institute of Neurological Disorders and Stroke
Doctors diagnosed her with fibromyalgia and ME (myalgic encephalomyelitis), she said.
Both are long-term nerve conditions which cause general symptoms including fatigue and muscle stiffness or pain.
But her illness continued to get worse until, before the start of her final year, she had a seizure en route to a gig in London.
Miss Todd said: ‘I felt really odd and then I just started shaking and it didn’t stop. I had two more, one on holiday and another at a train station.
‘My body just stopped, I was half paralysed for a bit after the second one.’
Because of the seizures Miss Todd decided to defer her studies in September last year to move back home with her family.
She says she was diagnosed with ‘neurological Lyme disease’ in January.
Neurological – referring to the brain or nerves – complications can develop in Lyme disease patients who have been infected for a long time.
Early symptoms within the first month tend to include a tell-tale bulls-eye rash, flu-like illness with muscle and joint pain.
But later on people may start to feel numbness, pain, weakness, paralysed face muscles, decreased concentration, memory problems, seizures or sleeping issues.
These may take months or years to appear.
Lyme disease is a bacterial infection which is usually easy to treat with antibiotics.
New guidance from the NHS watchdog, NICE, has urged doctors to treat people straight away if they have the rash which is the main sign of infection, instead of waiting for test results which could give the infection time to spread.
A rash on Miss Todd’s neck in 2015 was the first sign something was wrong, but when she went to see a doctor at the time they thought she had ringworm
Miss Todd now says she struggles to walk, read or concentrate for a long time and that the illness has ‘taken so much from me’
Miss Todd said: ‘It’s taken so many things from me. I try to be grateful because there are so many people worse off than me but there are so many things I can’t do.
‘I find it difficult to walk, read or concentrate for very long.
‘I can’t go out and be with my friends or drink. I’d just end up in a friends bed in absolute agony crying my eyes out.
‘It’s been horrible, absolutely horrible.’
Miss Todd is now trying to raise £10,000 on GoFundMe to take herself to the US for specialist treatment.
On her fundraising page she wrote: ‘There is a real lack of knowledge about Lyme disease in the UK.
Miss Todd had been studying textile design at university (pictured) before becoming exhausted by Lyme disease at the end of her second year
Miss Todd said doctors thought she might have fibromyalgia or ME, which both cause extreme tiredness and pains, but only managed to diagnose her with Lyme disease this year
‘Essentially, if you catch it early then a short course of antibiotics is enough. However, if missed at this stage, as in my case, the illness can progress and become far more complex.
‘My doctors are unsure how they can help me and there are no Lyme specialists in the NHS.
‘I need to see a Lyme specialist who knows how to treat and manage my condition… There is a specialist clinic in Washington DC that I am aiming to receive treatment from.’
Miss Todd added: ‘Going to the US and having the treatment would give me my life back.
‘I’m 22 and there’s so much life out there for me to experience and I’m shut away from it.
‘I can’t do all the stuff people my age do and to have the opportunity to have that back would be so amazing.’
WHAT IS LYME DISEASE?
Lyme disease is caused by a bacteria that is transmitted to humans through the bite of infected black-legged ticks.
The most common symptoms of the disease are fever, headache, fatigue and a skin rash called erythema migrans.
The disease can typically be treated by several weeks of oral antibiotics.
But if left untreated, the infection can spread to the joints, heart and nervous symptoms and be deadly.
WHAT HAPPENS WHEN YOU ARE INFECTED?
During the first three to 30 days of infection, these symptoms may occur:
- Muscle and joint aches
- Swollen lymph nodes
- Erythema migrans (EM) rash
The rash occurs in approximately 80 per cent of infected people.
It can expand to up to 12 inches (30 cm), eventually clearing and giving off the appearance of a target or a ‘bull’s-eye’.
Later symptoms of Lyme disease include:
- Severe headaches and neck stiffness
- Additional rashes
- Arthritis with joint pain and swelling
- Facial or Bell’s palsy
- Heart palpitations
- Problems with short-term memory
- Nerve pain