Richard Feinmann: Strange “neurologicals”?—think Lyme disease

I like to read “A Patient’s Journey” in the BMJ, and a recent offering was of special interest for my wife and me. It described a patient’s experience of Lyme neuroborreliosis. Lyme disease is unusual, particularly if you live in Manchester, and as a result it is not high up on the list of differential diagnoses. It produces odd symptoms that, even when diagnosed and treated, take forever to resolve.

My wife and I had recently spent about a year and a half in Uganda without catching any tropical diseases, but then my wife started to feel unwell about nine months after our return.

The initial symptoms were of sweats, headaches, muscle aching, breathlessness on effort, and a feeling of exhaustion. From being a very active VSO volunteer she rapidly found that she could do less and less. The initial full blood count showed a slight lymphopenia but erythrocyte sedimentation rate and other inflammatory markers were normal (and stayed normal throughout). Was it just “a bit of a post viral malaise,” or had she picked up something strange in Uganda? Was it just part of getting older, now we were retired? With the sweats being a dominant feature could she have a phaeochromocytoma?

An episode of chest pain on effort took us to the GP and then to a rapid access chest pain clinic. A stress echocardiogram proved to be normal. We went back to the GP and got a referral to a general physician.

The obvious thing a general physician will ask (and as a general physician for 40 years I should have remembered) is, “Do you actually have a temperature when you feel hot with the sweats?” So, lots of blood tests and regular temperature checks at home followed. Her temperature rose to 37-38 degrees centigrade during the sweats, and so occult malignancy became a possibility and computed tomography scans of the thorax and abdomen were done. Both were quite normal, and there was certainly no phaeochromocytoma.

Her symptoms in the meantime had developed, with pressure headaches becoming bad, some double vision, ataxia, memory and concentration problems, insomnia, and episodes of paraesthesia in her face and right leg and occasionally both feet. Spatial awareness became a problem, and she stopped driving. She had lots of “soft neurological” symptoms, but neurological examination seemed normal apart from being unable to walk toe to toe along a straight line. Most blood tests for malaria and other tropical diseases were normal, and we started to wonder about TB. We’d both been working with HIV and TB patients in Uganda and my wife was not vaccinated at school as her Mantoux was positive. It seemed unlikely, but as a chest physician I thought it was possible, and a colleague arranged to see her. We were also referred to see an infectious disease colleague who did a battery of tests and felt reasonably confident there was no infection.

So over four months we were getting more and more worried. My wife often felt really unwell at work and found it hard to complete simple tasks on the computer. She felt so unwell she had to stop her two days a week work.

The diagnosis then appeared. While my wife was seeing my chest physician colleague I found a blood test result had come back from Southampton. ELISA tests were positive for borreliosis and IgM immunoblotting was positive. I phoned a delightfully helpful microbiologist in Southampton who enquired about a rash.

Oh my goodness, we were staying in the Lake District in an unseasonably hot March, and deer do come into the garden occasionally. My wife got a rash on her foot ten days after we came home, which didn’t settle, and a couple of weeks later she was treated with flucloxacillin for cellulitis. The day before the rash appeared she’d been removing lily beetles and wondered whether this beetle had bitten her. How embarrassing, in retrospect it was a classical target lesion of erythema migrans and we’d forgotten all about it. We didn’t connect it with walking barefoot in the garden in Grasmere. So we went off to the GP to get some doxycycline.

The headaches rapidly deteriorated and I worried enough about benign intracranial hypertension from the doxycycline to call my infectious diseases colleague, who asked, “How do you know it’s not meningitis from the Lyme? You’d better come into hospital.” A normal computed tomography scan of the head and lumbar puncture eventually confirmed neuroborreliosis. In the meantime she was started on ceftriaxone and proceeded to have an allergic reaction with angioedema. Home on clarithromycin and then a long, slow, and still incomplete recovery. Some relapses required a repeat lumbar puncture and MR scans but finally, after 18 months, the blood tests indicate a resolving infection.

So the lesson is, don’t walk barefoot in the Lake District. Every doctor should be taught about and remember erythema migrans (especially me), and taking a good travel history includes not just overseas travel, but also holidays in the UK. Interestingly just after the diagnosis was made we had to cancel a holiday on Jura, where there are more deer than people, and a GP friend tells me tick bites are common.

It was strangely disempowering to be a nearly retired doctor who had dealt with problems such as this throughout his career, but now had to hand over control of care to colleagues. Thank goodness they were excellent, and thank goodness for the NHS.

Richard Feinmann is a 63 year old general and chest physician who retired a bit early after a serious health scare. He felt he had more to give and jumped at the chance to work with his health visitor wife in Uganda.