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.
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.