Wednesday, 28 November 2012


Lyme Disease treatment on the NHS has been a very controversial area for those patients who fail the usual couple of weeks antibiotics usually given by NHS doctors following the HPA guidance. That is when they are treated in the early stages of the illness, because so many of us missed that window of opportunity despite seeking medical attention for tick bites, bulls eye rashes, summer flu' and migrating arthralgias.

Lyme Disease Action charity has been working with the James Lind Alliance reviewing the available research on diagnosis and treatment of Lyme disease looking for areas of uncertainties. 

The James Lind Alliance is funded by the National Institute for Health.

Links to the Lyme disease Action website here

Links to more than 39 uncertainties here

Doctors and patients or their carers can vote on the top ten priorities for research before the 9th December 2012 here

Hopefully this research will be brought to the attention of doctors who frequently fail to even recognise the certainties of Lyme Disease such as the EM Rash -

'Does EM provide an ‘accurate’ clinical diagnosis of LD? 

Yes it does. See Stanek G, Fingerle V, Hunfeld K, Jaulhac B, Kaiser R, Krause A, et al. Lyme 
borreliosis: clinical case definitions for diagnosis and management in Europe. Clinical 
Microbiology and Infection. 2011 Jan;17(1):69–79.

In correspondence from the Dept of Health, Earl Howe, 12.12.2011 via my MP Anne Milton .The Dept of Health says 'The Department is working with Lyme Disease Action (LDA) and I am aware that you as Health minister, have met with LDA representatives. We are supporting its initiative with the James Lind Alliance and await the findings of their review.'

I look forward to more information about these uncertainties being relayed to our treating doctors and consultants and changes to existing guidance from the Dept of Health via the Health Protection Agency reflecting that there are many uncertainties, instead of the current restrictive guidance based more on opinion than scientific data. 

By identifying uncertainties in the research hopefully in time research will be directed into these areas that need more detailed investigation. 

1 comment:

  1. I’m reaching out to you because you are an active leader in the Lyme community and we want to let you know that we’re about to launch a new, web-based application tool designed specifically to help people with Lyme Complex manage their Lyme journey called: Chronic Tracker:Lyme ( You might have seen our ad in the latest Lyme Times or the posting last month on Lyme’s facebook page.

    I am excited to let you know about the tool before its official launch so that you can familiarize yourself with it and see if it is something you’d want to share with your community.

    I hope it will help empower people to take control of their care. We would love your feedback, as our primary goal has been to create a tool that is truly easy to use and will work for those of us who deal with the impact of Lyme on our lives every day.

    Please take a look and give Chronic Tracker:Lyme a try. Let us know what you think.

    In Good Health,

    Lindsay Pera (mom and parent to 3 with Lyme, and co-creator of Chronic Tracker:Lyme)

    Faced with the daunting task of managing not only her care, but that of her three children, and unable to find an existing satisfactory solution, Lindsay has co-created a care management tool to help her stay on top of the challenges that Lyme and its co-infections were bringing to her family, allowing her to take charge of their healing journey. Now Lindsay is sharing the tool she created with the Lyme Community.