Addicts' drug has changed my life, says MS sufferer

Published on Friday 13 November 2009 09:08

STEVEN BLAIKIE was sitting with his sons laughing at cartoons on television when the call that changed his life came through from Dubai.

"It was an aneurysm," he explains. "My mother was a real character. She'd been in Dubai at a belly dancing festival. She said to her friend that she was feeling tired and had to sit down.

"Two minutes later she was dead."

Steven was left reeling from the dreadful news. Four months later, there'd be devastating news of another kind – one that it's thought may well have its roots in that fateful day.

Seemingly fit and healthy, with a thriving restaurant business to run and two young sons, Steven, then 35, had already become aware that something strange was affecting his balance. But when he got out of bed one morning and his left foot gave way beneath him, he realised it might be something drastic.

"I thought Parkinson's Disease," he explains. "But as soon as the consultant at the Western General saw me walking, it was obvious he knew I had MS, multiple sclerosis.

"It was only in 1936 that they gave MS a name," he adds. "Before that it was known as the 'grieving condition' because it was often when someone close to you died, that the symptoms kicked in."

In a cruel twist of fate, Steven found himself still grieving for the loss of his mum, Joan Withers, at just 52, and contemplating the heartbreaking thought that he might not remain healthy enough to enjoy watching his sons, Connor and Arran, grow up.

"I was given three to five years and I'd be in a wheelchair," he explains. "There's nothing they can do for you.

"Your world just collapses."

Seven years on, however, and Steven is still remarkably active – defying the medic's grim warnings of wheelchairs and rapid decline.

And he believes it's partly thanks to a controversial drug originally developed to treat heroin users and now being touted as a breakthrough remedy for MS sufferers.

Naltrexone was designed to help hard drug addicts break their habit. But a New York doctor treating drug addicts with HIV noticed that it also helped improve their embattled immune systems.

Given in smaller doses – known as Low Dose Naltrexone (LDN) – the drug was shown to benefit people with auto-immune conditions such as Crohn's disease, chronic fatigue symptoms and those, like Steven, with MS.

But although many patients report relief from their symptoms, LDN has never undergone clinical trials for use on those kinds of conditions. Instead it remains unlicensed unless for use in treating addicts – which means the only way most people like Steven can get it, is via the internet.

"LDN is used for heroin addicts, to rebalance their immune systems," he explains. "It works by blocking the signals to the brain which tell it how much endorphins the body needs.

"The body is then flooded.

"For me, MS is like being beaten up by a bunch of skinheads. If I take LDN, it's more like being beaten up by a bunch of hippies carrying large flowers," he grins.

"It doesn't cure me, but it certainly helps with quality of life."

He is so convinced of LDN's benefits, that he is helping spearhead a drive to make the drug available to MS patients through the NHS and urging supporters to sign a petition to the government.

Steven, a chartered accountant who went on to open the now defunct Lost Sock Diner in East London Street, currently obtains his LDN supplies from an internet prescription and a Glasgow-based clinic. It costs him 30 every three months for the prescription and up to 30 a month for the drug.

"But recent research showed that making LDN available on the NHS could actually save 300 million a year in other treatments for MS patients," he explains.

The trouble is that the drug is caught in a frustrating Catch-22 situation. For the cost of testing its efficacy – around 2 million – added to the fact that its production is no longer restricted by patent laws which means anyone can make it, meaning no commercial company is willing to fund trials and risk not re-couping their investment.

Alice Anderson of the MS Therapy Centre Lothian in Bonnington Road, where MS patients can undergo groundbreaking treatment using hyperbaric oxygen, says a number of members there use LDN.

"They say it makes a real difference to their quality of life," she says. "We have the anecdotal evidence this drug can work, now we need to get the clinical backing and, if it is proven to work, be licensed.

"We support anything that can aid people living with MS."

Steven, 43, believes the combination of hyperbaric oxygen treatment he receives at the Bonnington Road centre, LDN, a carefully planned diet and sheer determination has helped in his fight against MS. But he agrees it has been a struggle.

"It was very hard at first and my partner, Karen, found it really difficult," he explains. "We had to close the business because it wasn't viable to pay someone to cover for me not being there.

"And we decided that it would be better if we lived apart – we're still in a relationship, but we just felt it would be easier if Karen didn't have another 'kid' to look after as well as the boys – and I've always been self-sufficient. It sounds strange, but it works better for us."

Steven lives in Raeburn Street, sharing care of sons Connor, 11, and Arran, eight, with partner Karen Todd at her home nearby.

As well as taking LDN, Steven sticks to a rigid eating plan which removes gluten, dairy, saturated fat and legumes from his diet. "Things like gluten and dairy products when digested take on the structure of 'rogue' cells in the digestive system," he argues. "So the immune system is taking up fighting off these cells instead of tackling the MS."

He also undergoes oxygen therapy at the centre once a week and regular aromatherapy sessions to help relax. But it's LDN that has given him the most hope for the future.

"This condition does not necessarily have to be debilitating. There are a lot of ways you can keep yourself healthier for longer," he insists. "There are obviously things I had to give up as time has passed but I am very lucky to have my children there as my inspiration to stay strong.

"The centre has been a great support and I am determined to continue with my other treatments to remain as active as possible."

The online petition calling for LDN to become available to MS patients needs 50,000 signatures by the end of November. The petition can be found at http://petitions.number10.gov.uk/LowDNaltrexone/ and information about the centre can be found at www.mstc-lothian.com

The incurable condition that hits Scots most

AROUND 85,000 people in the UK have multiple sclerosis.

However, the condition appears to affect a relatively high number of Scots. There are around 10,500 people in Scotland with MS – more people per capita than anywhere else in the world.

The MS Society Scotland is preparing to compile a national register of MS sufferers in a bid to establish the true scale of the problem. It will begin in January.

MS can strike at any age. However, most people are diagnosed between 20 and 40. Women are two to three times more likely to develop MS.

The condition affects the central nervous system – the brain and the spinal cord, which controls the body's actions such as movement and balance. Patients can experience problems with mobility and balance, pain, fatigue and muscle spasms.

It's not clear what causes MS, but scientists are looking at genetic and environmental factors.

MS cannot be cured and treatments aim to improve symptoms.

Some MS sufferers have turned to cannabis to help ease their symptoms. A study in 2000 by scientists in London proved that a compound in cannabis can prevent muscle tremor and spasticity caused by MS.