Lyme disease: '˜Tick bite has given me a terrible life sentence'

Lyme disease has sapped her energy, left her bedridden, in frequent pain and with a “foggy brain”.

She says that without the love and support of husband Tony, she would not be able to carry on.

Now they are having to sell their home in Penicuik and move south to be nearer their family.

But along with many Lyme sufferers, Lorna, 69, believes there is an urgent need for more recognition of the debilitating disease and a more determined effort to treat it.

Campaigners are holding a protest march in London on May 24 as part of Lyme Awareness Month. Official estimates say there are around 3000 sufferers in the UK, but the campaigners say there is an “unrecognised epidemic” and the true figure is ten times that.

Lorna described how her nightmare began in May 1996.

She said: “We were sailing round the islands off the west coast and the first night we stayed over on Jura. We were island-hopping. It was just a small yacht so you never really got washed properly.

“It wasn’t until we got home that I found a tick. It had been on me for four days so it was very engorged. We couldn’t get it out, so the nurse at the surgery dug it out.

“I developed a red ring around it, which they thought was just inflammation. I was given some antibiotic cream to put on the rash, but from then on my health deteriorated rapidly. I lost an enormous amount of weight and went from a size 14 to a size eight over just a few months.”

Eventually her blood was tested for Lyme disease and the results came back positive.

“I was given two weeks of antibiotics, but the doctor said it had not been caught in time and I would always have it until they found a cure,” she said.

“I used to work in a bank and I found I couldn’t count the money as quickly as I used to. I couldn’t remember numbers and I used to have a phenomenal memory for numbers.

“My joints would swell, like arthritis. And you get this awful foggy brain – you can’t think and you forget things.”

Lorna paid for private treatment, which worked well, but has now suffered a relapse.

She said: “I don’t have any life. I used to be involved in church and all sorts of stuff. I loved walking. Now I’ve got about an hour of energy a day and that’s it. I start jerking, twitching, the whole neurological system goes. I can’t think any more, I can’t remember words, it’s awful. It’s a terrible life sentence we’ve got. It sounds theatrical, but it’s not – it wrecks people’s lives.

“People can die of it, but they are also taking their own lives and I can understand that. If I didn’t have my husband, I would do it.”

She and Tony, 71, originally from Yorkshire, have lived in Penicuik for 40 years but now plan to move to England.

One son lives near Blackpool and the other in Cheshire.

Lorna said: “We’re having to sell up and move to be nearer them. They don’t want us to be up here without any help.”

She says they will probably use the money they get from selling their house to go to the US for more treatment.

Lorna is not well enough to travel to London for the protest march, but she is eager to spread the word.

She said: “I don’t want other people getting this. We’re trying to educate everyone that it’s horrendous.”

The UK government has announced a review of diagnosis and treatment of the disease.

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