MS - caution on cure claims
FOR the past 13 months I have been able to live with no disability and no further attacks and, as far as I am concerned, I don't have to know that I have MS. How can there be anything wrong with me when I can run, jump, dance and work like a maniac without any problems at all?
"How can I still have an incurable, paralysing disease when I am physically no different from any other healthy person? To be honest, I feel better now than I have for my entire life before MS."
These are just a few lines from Cari Loder's personal story about how she came to be diagnosed with multiple sclerosis in October 1992 and how, less than two years later, she had rid herself entirely of all the symptoms of the disease by taking a new cocktail of drugs which includes an anti depressant, an amino acid and B12 vitamin supplement.
In her new book, Standing in the Sunshine - The Story of the MS Breakthrough, Loder explains how she struggled with the chronic progressive form of multiple sclerosis (a form of MS where the individual has no remission and simply deteriorates from the outset), taking many of the prescribed medical treatments before discovering her own specific treatment.
However, Dr Janine Redmond, neurologist at St James's Hospital and St Vincent's Hospital, Dublin, says that although she is pleased that this particular patient has found a non toxic treatment, she couldn't say it is a cure for MS.
"There is a lot of fatigue and mood changes with MS and anti depressants can be beneficial but there is no scientific evidence that there is one particular amino acid lacking in MS patients or that there is a deficiency of vitamin B12.
"Such things as seaweed, B12 and special gluten free, soya milk or grape diets have all been tried for MS but there is no scientific evidence that they work," says Dr Redmond.
"The difficulty with all these things is that MS is the most chronic cause of disease in young people for which there is no cure and this gives rise to desperation. There is always a placebo effect; if you say to people that something will make them better then it may. When our patients want to try such things as aromatherapy or reflexology, we don't discourage them because we want to keep them within orthodox medical treatments as well."
Speaking about current medical treatment for multiple sclerosis, Dr Redmond continues: "We use steroids for acute exacerbation of the condition but Betaferon (which has just become available on the Irish market) is really the biggest breakthrough on the treatment front in recent times as it is the only drug that can alter the course of the disease in its relapsingremitting form (ie when the person has an initial attack, followed by a period of remission.).
"In terms of research into a cure, there is interesting benchmark work done into the stimulation of myelin regrowth (MS attacks the nervous system by destroying the protective myelin sheath of the brain and spine) but we are a long way off from a cure.
"We can help to treat the associated problems in MS like bladder malfunctioning, spasticity, mood swings and pain but the most important thing is the patient's expectation and understanding of what's possible.
"There are a lot of opportunities where we can help by assessing the home and work situations, and through physiotherapy and occupational therapy, but we must be cautious. We can't say that there is a cure for MS and one has to be very honest with patients about this."
In Standing in the Sunshine, Cari Loder is careful not to give the reader any details of what exact drugs are included in her treatment, which she has patented. The Loder treatment is now set to undergo clinical trials with the British pharmaceutical company, Scotia.
"I'm 18 months clear now and I have just had a repeat Magnetic Resonance Imaging (MRI) scan which has shown that there has been no MS activity in the last 18 months. I take the drugs every day and a B12 injection every fortnight. If I went without one or both of the drugs, I know my symptoms would come back within a couple of days because when I was first testing them out on myself, my symptoms returned within a couple of hours if I stopped taking them," says Cari Loder.
THE British Multiple Sclerosis Society has remained sceptical as regards Loder's treatment. The Irish Multiple Sclerosis society says that anything that seems to be working is worth looking into and testing. "However, often in the past, people have found a brilliant cure which has turned out not to be so. I'm not disbelieving Cari Loder but we'd be cautious of her treatment claims until clinical trials are completed," says Vicky Lloyd, spokesperson for the Irish Multiple Sclerosis Society.
According to Loder, the only side effects of the treatment are mild constipation and dry mouth from the anti depressant and a faster pulse rate from the higher adreneline levels in the body. Long term side effects are, however, as yet unknown.