Practice A Patient’s Journey

Lyme neuroborreliosis

BMJ 2012; 344 doi: https://doi.org/10.1136/bmj.e3250 (Published 14 June 2012) Cite this as: BMJ 2012;344:e3250
  1. Joyce Hobson, patient1,
  2. Mark W Weatherall, consultant neurologist2
  1. 1Denham Garden Village, Denham, UK
  2. 2Ealing Hospital NHS Trust, Southall UB1 3HW, UK
  1. Correspondence to: M W Weatherall mark.weatherall{at}doctors.org.uk
  • Accepted 28 March 2012

This patient describes her experience of Lyme neuroborreliosis, its eventual diagnosis, and its profound effect on her life

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.

A doctor’s perspective

All professors have an aphorism. When I was a medical student at Cambridge, our professor of medicine, Tim Cox, would tell us, “If you don’t think it, you won’t diagnose it.” In this case, we did not diagnose Lyme disease until we had thought of it, and we thought of it only because some results did not quite fit our working diagnosis of Miller Fisher syndrome.

When I first met Joyce, I already knew that her brain scan was normal; she was areflexic with bilateral abducens nerve palsies and a left lower motor neurone facial palsy. Miller Fisher syndrome seemed plausible, but when the results of cerebrospinal fluid tests came back, the patient had significant lymphocytosis. I reread the literature on Miller Fisher syndrome and found that this was described; but it didn’t feel right. Joyce mentions her feeling that serious professional discussions were going on, and she he was absolutely right. I was constantly canvassing other people’s opinions on the case. It was my colleague Jane Pritchard whose unequivocal rejection of my working diagnosis led us to request further tests, and it was my registrar Una Sherrin who first considered Lyme disease, elicited the relevant history, and sent off samples to the reference laboratory in Southampton. Enzyme linked immunosorbent assay (ELISA) was positive for Borrelia burgdoferi, and IgM immunoblotting was positive in both cerebrospinal fluid and serum, confirming the diagnosis. Joyce had been to several places where Lyme disease could be contracted.However, the organism strain and the timing of her symptoms indicated that she had been infected on her holiday in the Dordogne.

Lyme disease is caused by spirochaetes of the Borrelia species, transmitted to humans by the bites of Ixodes ticks. Different strains cause different patterns of disease, and the European B burgdorferi garinii is particularly associated with neurological manifestations, including cranial nerve palsies and meningoradiculitis (Bannworth’s syndrome, first described in France in 1922). A total of 953 laboratory confirmed cases were reported to the Health Protection Agency in 2010, with the total numbers of those infected in the UK being thought to lie between 2000 and 3000 cases annually. Cases of Lyme disease have been rising steadily over recent years, probably because of better surveillance, increased awareness of the disease, and increasing infection rates caused by travel to endemic areas such as the Dordogne and eastern Europe (although most cases are contracted in the UK). Whether Lyme disease causes chronic neurological problems is controversial, but it seems likely that it is responsible for some cases of chronic fatigue and encephalopathy.

The lessons of this case are a bit old fashioned: cast your differential diagnosis wide; don’t dismiss results that don’t fit your diagnosis; many brains are better than one (even a neurologist); and the answer, more often than not, lies in the history. In addition, despite what we are conditioned to think at medical school, Lyme disease in the UK is not simply confined to the New Forest. It extends to other forested areas in the south of the country—such as Exmoor, the South Downs, and Thetford Forest in East Anglia—and further north in the Lake District, Yorkshire moors, and Scottish Highlands. Cases have even been reported in the Home Counties. The importance of taking a comprehensive travel history in complex cases cannot be overstated.

Mark W Weatherall

Notes

Cite this as: BMJ 2012;344:e3250

Footnotes

  • This is one of a series of occasional articles by patients about their experiences that offer lessons to doctors. The BMJ welcomes contributions to the series. Please contact Peter Lapsley (plapsley@bmj.com) for guidance

  • Competing interests: All authors declare no support from any organisation for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years, no other relationships or activities that could appear to have influenced the submitted work

  • Provenance and peer review: Not commissioned; not externally peer reviewed.

  • Patient consent obtained.

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