A FORMER model who says her twenties have been stolen by Lyme disease wants the NHS to do more investigation into the illness.
Michelle de Feo, 26, went from living in Ibiza to being stuck at home unable to work.
It was while in Spain about four years ago she first began to get overwhelming symptoms such as sudden blood in her urine, which saw her hospitalised with anaemia last month, and severe migraines.
Michelle was told she suffered from vestibular migraines and given antibiotics for the blood loss because UK doctors had no explanation.
The second diagnosis was chronic fatigue syndrome.
Her brain fog, memory loss, back pain and lethargy has continued since then but it took Michelle to become her own doctor to get a diagnosis via private testing.
She said: “The migraines were so severe, I couldn’t stand up or look at any light. I ended up getting an early flight back from Spain.
“I couldn’t walk out the front door and was getting really bad anxiety and panic attacks.
“It got to the point I felt suicidal because it was stopping me from enjoying life.”
“Every blood test came back fine but it didn’t add up.”
A photo from Colchester General Hospital where Michelle, 26, was hospitalised in January
Michelle showed doctors the rashes she had but still did not get a diagnosis.
She said: “The sad thing is a lot of people with Lyme get diagnosed with other conditions such as chronic fatigue syndrome like me because the NHS isn’t investigating the root causes of our symptoms.
“Whereas in America they’re very confident about Lyme disease.”
Supported by her parents and crowd funding, Michelle, of Colchester, took a £4,000 trip to Washington in 2016, where she has a private specialist.
While there she had her hotel room upgraded by the manager whose sister has Lyme and food shopping paid for by a kind stranger in a supermarket for the same reason.
“I couldn’t believe it,” she said.
“Being there was such a relief I didn’t want to come home.
“We could learn so much from America in terms of research and clinical trials. The UK hasn’t done anything from what I’ve gathered.
One of the rashes on Michelle’s body associated with the condition
“Each year Lyme disease is mentioned in Parliament but nothing is being done.
“Theresa May agreed the UK’s testing isn’t reliable so she was pushing for better testing.
“The NHS needs to make it simpler and more cost-effective because it’s not hard to treat if you get it quickly.”
The next step for Michelle, who now lives in Great Bromley, is stem cell therapy to boost her immune system.
Another trip to the US is inevitable so she has kept her fundraising campaign live at gofundme.com/ddpsvn2s.
She added: “What’s happening is an epidemic but the doctors here aren’t educated about it.
“I pretty much lost my twenties as it’s been roughly four years now since I’ve been unwell.
“Last year I felt some improvement and went back to work but had quite a bad relapse, so now I’m on disability living allowance and really bored.
“If I didn’t have a supportive family and a strong personality, living with Lyme disease would be a lot harder.”