Lyme neuroborreliosis

It was during a 280 mile drive to a remote village in the Yorkshire Dales that I was first aware of an ache in my right thigh. Four days later, it had spread to my ankle and buttocks. Next day I was in agony with horrendous back pain. For the next two weeks I barely slept. Lying down was impossible. I got no relief from painkillers. A 24 hour bout of foul diarrhoea was distressing, and I felt ill. I visited a chiropractor, used cold packs, returned home, saw my general practitioner, and had a blood test.

Then on 13 September 2009 I developed double vision. My doctor took one look and asked that I be admitted to Ealing Hospital right away. The back pain had subsided by the time I was assessed by the neurologist, Dr Mark Weatherall. My double vision persisted, however, the left side of my face had become paralysed, and I had become unsteady on my feet. I had numerous further tests and scans. The good news was that there was no sign of a brain tumour, and I was transferred to Charing Cross Hospital for further investigation.

So how did I feel? I had no pain, and the bed rest and care extended by the hospital staff worked wonders. However, the double vision and facial palsy made life rather difficult. I found that I could function if I wore spectacles with the right lens covered over. Eating and drinking improved as the left side of my face began to recover. I was mobile, though unsteady on my feet, and judging the distances between objects was unreliable. The hospital staff were wonderful and the daily routines reassuring. All in all I felt that I was in good hands, and convinced that I would recover.

Dr Weatherall and his team worked through all manner of possibilities. Even I, whose medical knowledge is, at best, scanty, was aware of the unusual nature of my case. I had more scans and a second lumbar puncture and came to realise that, though each member of the team might spend only a few minutes with me, behind the scenes serious professional discussions were going on. Then one day one of the team appeared at my bedside and asked me where I had spent my holidays, and seemed delighted when I told her. And—hey presto—a solution was in sight. Where had I been in the past year? New England, USA, for one; the Dordogne, for another; and the North Yorkshire moors. Take your pick. Could I remember being bitten? Yes—I’d assumed they were mosquito bites. I’d never heard of Lyme disease and had no idea that the gentle deer I’d admired so much on my holidays carried ticks which could do me harm.

I was treated with daily intravenous ceftriaxone for four weeks. Back at Ealing, Professor Bill Lynn, the infectious diseases consultant, monitored the effect of this treatment and adopted me as an outpatient. I wanted to know more about Lyme disease, and he patiently explained. He had spent three years in a hospital in Boston, USA, where the incidence of Lyme disease was higher than in the UK, where only about 40 cases a year were reported. I discovered that the disease had first been identified in 1974 in the town of Lyme, Connecticut; hence its name.

Over the following year things steadily improved. The improvised eye patch was long gone. My brain seemed to be trying to get my eyes to focus, and most of the time I tended to forget about it. Bright lights and rapid movements still brought on a feeling of vertigo. I got painful cramps in my legs at night, and an occasional odd sharp sting somewhere in my body, rather like a ping made by letting go of a rubber band. I fancifully thought that it was another nerve reconnecting. Both consultants continued to monitor my progress at intervals. The antibiotics sparked off serious diarrhoea, which lasted about six months. I began to feel my age. Balance was uncertain. Walking became slower, and I tired quickly. I couldn’t raise myself from a sitting position in the bath, and stairs presented a challenge.

We moved house. An excellent retirement village gave me a fresh start. I continue to get a lot of painful cramp, especially at night, and my leg muscles look different. I still need to wear sunglasses in bright light. I was interested to discover that I can no longer swim: I can perform leg and arm actions separately, but can’t coordinate them. Lack of exercise has led to weight increase. Otherwise I feel fine and enjoy a lively social life. We take holidays here and abroad as before. I am not quite as I was before Lyme disease, but then I am two years older. When my friends commiserate and say what a terrible time I’ve had, I tell them that it was quite an adventure which, in a strange way, I enjoyed, and that I’d met lots of dedicated people who restored my faith, if that were needed, in our NHS. I am a fortunate 80 year old woman.