Lyme neuroborreliosisBMJ 2012; 344 doi: https://doi.org/10.1136/bmj.e3250 (Published 14 June 2012) Cite this as: BMJ 2012;344:e3250
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In response to "A Patient's journey" Lyme Neuroborreliosis BMJ 14 June 2012, this Australian case study shows similarity and depth of effect upon a patient's life but with further idiosyncractic barriers to ability to earn a living and life quality. This case had a successful outcome. The patient wanted her experience published to provide benefit for others who might have similar issues.
Summary of a case study of neuroborreliosis symptoms requiring a novel approach:
A professional woman reported a past history of multiple symptoms following tick bite: severe sweats, flushes, heart palpitations, spasm (treated with epilum) and bladder urgency. After several years Lyme disease was considered despite demographics. A longterm course of antibiotic (bicillin) was undertaken but calf muscle fasciculations, self doubt from uncertainty of diagnosis, and interference of activities from bladder irritation remained. Ultrasound found 10ml filling over 10 minutes. 12 months later the use of Diazepam led to complaint of diminished mental alertness. Chlonazepam was provided and she was referred to a health psychologist for strategies for depression and suicidal ideation. The bladder required voiding at intervals ranging from 2 minutes to 20 minutes. This prevented proper work duties and social engagement. Her suspicion of spirochaete activity upon bladder filling was revealed as a regular unpleasant thought. She agreed to a novel approach.
A hypothesis of mechanism, which was accepted by her as logical, was that “due to previous spirochaete activity, the bladder had become irritated and sensitized to urine resulting in a conditioned response to mildest concentration of fluid. This led to discomfort and the process needed to be reversed”.. The notion of repetitive fast bladder filling at this time was first challenged. Then Ericksonian hypnosis was used which integrated cognitive restructuring with metaphor.
Several days after the session this woman was able to drive 2 hours for a work-related event without a toilet break. She received 4 sessions to improve general confidence. 16 weeks later 2 further sessions were undertaken for bladder confidence due to intended air travel. She reported sense of control and good life quality thereafter, using clonazepam rarely. At 12 month follow up she was without symptoms. At 18 month follow-up she had confidently experienced a 7 week bus trip with 2 to 4 hour toilet stops. The positive outcome is attributed to a shift in a feedback loop between emotional and cognitive processing and neural sensitivity.
Dawn Rayner-Brosnan PhD
The Stress Clinic of Hobart
The BMJ has obtained patient consent.
Competing interests: No competing interests
I was not surprised to read that a neurologist did not initially consider the diagnosis of Lyme disease. The use of eponymous descriptive names obfuscates the ignorance of the condition, in this case ”Miller Fisher syndrome”. In 1987 we described, the first case of neuroborreliosis in Scotland 1. We subsequently published the first serological survey in Scotland, not in the Highlands but the South-West 2.
Over the years I have consistently failed to get neurologists and paediatric rheumatologists (the illness was originally misdiagnosed in Lyme as “classical Still’s disease” another eponym) to entertain this diagnosis, despite it being an extremely treatable illness that is easy to test either from blood or CSF, if a little unreliable.
I hope that this article will encourage specialists throughout the UK to consider a treatable diagnosis.
Dr A Gordon Baird MB ChB MRCOG FRCGP
The White House,
Wigtownshire DG9 9JA
1) Hobson J. Weatherall M. Lyme neuroborreliosis BMJ 2012;344:e3250
2) Bourke SJ. Baird AG. Bone FJ. Baird DR. Stevenson RD. Lyme disease with acute purulent meningitis. BMJ. 297(6646):460, 1988 Aug 13.
3) Baird AG. Gillies JC. Bone FJ. Dale BA. Miscampbell NT. Prevalence of antibody indicating Lyme disease in farmers in Wigtownshire BMJ. 299(6703):836-7, 1989 Sep 30
Competing interests: No competing interests
Was very interesting to note that the doctor in this article eventually received the correct treatment, unfortunately few do. I myself have had the disease 25yrs and it is unbelievable the remarks said to me by so called educated doctors. Even today there is a great deal of disbelief that this illness exists in UK. There has got to be a major shift in the way doctors treat patients-they have to listen to what the patient is telling them and not assume ME/Lyme is 'all in the head'. They must also accept that Lyme may need long-tern antibiotic treatment.
Competing interests: No competing interests
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