Research finds uncertainties in treatments for Lyme Disease

[Joanne60]

This may already have been posted in which case I am sorry if I am duplicating it.

The Lyme Disease Action Charity http://www.lymediseaseaction.org.uk/ have worked with The James Lind Alliance in reviewing the literature on Lyme Disease.

The James Lind Alliance is funded by the National Institute for Health research here in the UK.

They have published their findings and these are now recorded on the NHS DUETS Database http://www.library.nhs.uk/duets/SearchResults.aspx?catID=15587&tabID=296

The Top 10 uncertainties are

UK Lyme Disease Priority Setting Partnership
The Top 10 Research Priorities
The following are the top 10 uncertainties in the diagnosis and treatment of Lyme
disease agreed by clinicians and patients.
? What is the best treatment for children and adults presenting with a) early Lyme
disease without neurological involvement and not including erythema migrans and
b) late Lyme disease of any manifestation? To include consideration of drug(s),
dose, duration.
? What key questions (clinical and epidemiological) should be considered to help
make a diagnosis of Lyme disease in children and adults in the UK and would a
weighting table be useful?
? How effective are the current UK tests in detecting infections due to the
genospecies and strains of B burgdorferi sl in the UK and which single test and
what combination of tests performs best in diagnosing or ruling out active Lyme
disease. Should stage of the disease and patient age be taken into account when
interpreting these tests?
? What are the outcomes of cases where long term treatment has been used?
? What is the optimal course of action if symptoms relapse after a treatment course
is finished?
? What is the optimal course of action if symptoms persist after initial treatment:
should antibiotic treatment be continued until all symptoms have resolved or
should a different dose or different antibiotic be used and what is the course of
action if treatment appears to fail completely?
? Are continuing symptoms following conventional recommended treatment due to
continued infection, or an immune response or other process?
? How common is relapse and treatment failure and is it related to disease stage,
gender, co-infections or any other factor?
? Are there long-term consequences if treatment is delayed?
? Can Lyme be transmitted via other means: person to person sexually,
transplacentally or by breast feeding; through organ donation; through blood
transfusion?

http://www.lymediseaseaction.org.uk/wp-content/uploads/2013/01/JLA-top-10.pdf

Details of the process are here http://www.lymediseaseaction.org.uk/what-we-are-doing/

This process was supported by the Deptartment of Health, D of H and HPA were involved in overseeing the final selection.

I have a letter from my MP Anne Milton in which she enclosed a reply from Earle Howe ( Dept of Health) saying

‘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.’

One hopes that in time guidance on Lyme Disease here in the uK will be updated to reflect these uncertainties.

Nevertheless this information may be useful for patients to quote when discussing with doubtful practitioners in whichever country — if they will listen!

Best wishes Joanne

[Author]

Posts