Sam Frost has been left bedridden after she was bitten by a tick while playing paintball with her ten-year-old boy Toby last February.
The 43-year-old claims doctors repeatedly missed the tell-tail bullseye rash and dismissed her symptoms – which include seizures, muscle weakness, joint and muscle pain, excruciating migraines, eyesight problems, and hallucinations – and have misdiagnosed her as having Chronic Fatigue Syndrome.
Sam lost her job, had to give up care of her son and nearly lost her home after a seven-month battle to get any sickness benefits.
She says she was denied a home visit and made to travel to a Job Centre in a wheelchair for a health assessment despite doctor’s letters saying she was “unfit to work”.
Sam says she feels she’s been “left to die” by the NHS after she she tested negative for Lyme in the UK and she wasn’t treated early with antibiotics – considered essential for recovery from the disease.
She has since had a positive result for the potentially fatal infection through a US-based testing service and now needs to raise 30,000 for stem cell treatment in Germany.
Sam told i: “I’m terrified every night I go to bed that I’m not going to wake up the next day. It breaks my heart that I may not be here for Toby.
This disease has robbed me of everything.
“People are dying from this and the NHS is completely unequipped to deal with Lyme disease. It feels like the UK has become a third world country.”
Sam, from Northolt in west London, says she didn’t realise she’d been bitten after paintballing in the woods in Surrey until she woke up two days later, with an agonising migraine, and noticed a mark on her ankle and a tick fell out. Just over two weeks later she was struck with pneumonia.
It was almost two months later than the bullseye rash appeared in the spot she’d been bitten. She said: “I went to my GP and showed her my rash but she said I had ringworm and sent me away with topical cream. I know now I should have been given antibiotics immediately.”
New guidelines issued by NICE in April – after Sam got ill – states that clinicians should treat people with a circular red rash – medically referred to as erythema migrans – straight away with antibiotics while awaiting test results for Lyme.
But without treatment, Sam deteriorated further and lost her contract job as an office manager. She started a new one in June but it wasn’t long before she was let go by her new employers after she became too fatigued to go in.
“I was taking my son to school in the mornings and then collapsing on the sofa and sleeping all day. I was getting about 18 hours of sleep but still feeling exhausted,” she said. “I was also hallucinating and seeing cats jumping on my bed and hearing music that wasn’t playing.
“My mum rang me after seeing Martine McCutcheon on the TV talking about having Lyme disease and said it sounds exactly like what I had been suffering with.
“My dad came round one day and I was confused and didn’t have a clue what he was saying to me and he called an ambulance.”
Sam was admitted to Hillingdon Hospital in August last year where she tested negative for Lyme.
NICE also acknowledges that the tests carried out in the UK – called ELISA and immunoblot, which look for antibodies created by the body’s immune system to fight infection – are not always reliable.
“There was another missed opportunity to treat me for Lyme even though my medical notes from that admission state I had ‘target-like’ rashes,” said Sam. “By then it had spread even further. I was also having jerking ticks – sudden repetitive movements.
“I became house-bound and I’m now virtually bed-bound. My GP insisted I couldn’t have Lyme disease as I’d not been near any deer, and said I had ME or Chronic Fatigue Syndrome, but I just knew she was wrong.
Sam ordered a Lyme disease testing kit from the States, costing $700, which has been available there since 2010. She tested positive for Lyme and a host of other tick-born infections including babesia duncani, a malaria-like illness. “It’s horrendous that people have to seek diagnostic test and treatments in other countries,” said Sam. “It’s like we’re 10 years behind the US and Germany.”
Sam says her claim for Employment and Support Allowance was refused when she claimed last December. She appealed, and lost at tribunal.
“I was even denied a home visit and made to travel to their offices for assessment, despite my doctor having written three letters to say I was unfit for work,” she said.
“It took seven months to battle with the Department of Work and Pensions to prove I was ill before I received a penny,” she said.
“My friends had to pay my rent or I would have been homeless. “I had enough going on dealing with the agony I was in without that added stress.”
Sam says her only hope is to travel to the Infusio clinic in Frankfurt which offers stem-cell treatment where cells are extracted, grown for 10 days and then injected back into the body to “reset” the immune system.
Sam said: “It’s my only hope as there is no help on the NHS here. I keep seeing RIP messages about members in Lyme disease forums and I’m terrified.
“My parents won’t be around forever and they are carers for my brother who is disabled after suffering two brain haemorrhages at 27. They need me, I need to be healthy to look after them all when the time comes.”
This story appeared on our sister site The I