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Practice A Patient’s Journey

Lyme neuroborreliosis

BMJ 2012; 344 doi: (Published 14 June 2012) Cite this as: BMJ 2012;344:e3250

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Re: Lyme neuroborreliosis

It is with interest that I read this article. I too contracted Lyme Neuroborreliosis in the summer of 2009 following a 5 week tour of central and eastern europe with my family. I suffered numerous 'insect bites' and indeed once such bite became inflamed for about 10 days towards the end of our holiday.

One week after our return i developed a facial palsy and was treated with high dose oral steroids by a GP registrar. A few days later i presented to my GP with a possible self- diagnosis of Lyme disease. I was immediately transferred to our local infectious disease department, underwent numerous investigations and given a clinical diagnosis of Lyme Neuroborelliosis. (Unfortunately as i had received steroids I did not have a positive antibody test, although other members of my family did.) During that month i was initially very ill with swinging fevers, severe fatigue, concentration and communication problems, difficulties in walking and a brain fog. However towards the end of my treatment i started to show some signs of improvement.

Unfortunately over the next 8 months i continued to deteriorate. I was unable to work, found it difficult to hold a conversation, had balance and proprioceptive problems, suffered fatigue and hyperaccusis and developed a peripheral neuropathy. All at the age of 37. I tried to take all the advice offered by the various medical staff that i saw. I tried rest, graded exercise therapy and CBT all to no avail. I was supported through all this by a very supportive GP who dealt with my frustrations of being severely ill but being told i had had the requisite treatment as per the guidelines and just had to accept i may not get better.

10 months down the line i went to see a Rheumatologist who had had experience in treating Lyme disease. He felt i was still showing signs of active infection and suggested i start a rotating course of antibiotics of Amoxycillin, Azithromycin and Tinidazole. I was very reluctant to start this but was by this time prepared to try anything. I decided to take it a week at a time and if i showed any side effects i would stop.

8 weeks later i went back to work. I was not back to normal but could walk and drive a car. I could communicate and the brain fog had cleared. I was still very exhausted and found i was extremely anxious about seeing pateints. I stayed on the antibiotics for 24 weeks. Over the next year supported by my understanding colleagues, I gradually returned to work as a 3 day a week GP partner.

It has now been 2 years and 10 months since my facial palsy. I am well and i would say asymptomatic. What have i learnt? I have learnt to take a good travel history and that guidelines are just that - guidelines, and not always applicable to every patient and that clinical assessment is just as important.

I am now involved with the James Lind Alliance, an organisation funded by the DOH and the MRC, looking at setting up a priority setting partnership between patients and clinicians to look at the uncertainties of Lyme disease. Certainly from my experience there seem to be many.

Competing interests: involved in the JLA priority setting partnership

25 June 2012
caroline j Rayment
GP partner
grange park surgery
grange rd, burley in wharfedale, west yorkshire, ls29 8tj