Congratulations to Lyme Disease Action in engaging the Rare & Imported Pathogens Laboratory (RIPL)* at HPA Porton in discussions over testing of Lyme Disease.
'The HPA and LDA aim to work together as much as is possible and this first meeting was a very good start. It has been agreed that a second meeting will be convened for 6 months’ time to monitor progress.'
To read more about this significant meeting go to LDA website here
No one has all the answers where Lyme Disease and other tickborne Illnesses are concerned, which was made abundently clear at the Institute of Medicine Workshop last year (link in right hand side bar) here is hoping that this will be a good start to open and meaningful debate, something that has been denied for far too long leaving so many patients without proper and adequate care.
Very well done LDA for all your work.
Thanks for sharing the news. This sounds like a positive step in the right direction, and I liked reading that RIPL is working with LDA to put information about testing and an FAQ on the page using LDA input.
ReplyDeleteI am somewhat concerned, though, about this part of the linked article:
"The immunoblot, however, is to be a mechanised strip blot from a German company, Viramed Biotech, which means the result will no longer depend on subjective, manual reading. This test is designed for use in Europe and is based predominantly (though not exclusively) on the highly antigenic Pko strain of Borrelia afzelii."
My first question would be how does anyone know how tightly calibrated test is? Would the cutoff line for a positive be so narrow that more people will be listed as inconclusive or equivocal when they would have been positive based on a subjective reading? I guess this also relates to wondering how a doctor will determine if it's worth it to try empiric treatment on a patient based on a borderline result.
My second question is are B. garinii and B. burgdorferi going to be detected as well? How sensitive and specific is this test?
Hi Camp I agree there are still very many concerns but this does appear to be a step in the right direction - with open dialogue everyone can learn but until now ears were well and truly only open to IDSA Cabal.
ReplyDeleteWe have been in the most unusual situation where SOC was telling our doctors that patients could not have Lyme based on negative tests - she did with my doctor but thankfully I was treated on NHS despite the advice of SOC and have made a good recovery.
Most medics are well aware that antibody testing is unlikely to be 100% for many reasons so I am rather hoping that common medical sense prevails with this new lab- ie their remit should not be directing individual doctors what treatment patients should or should not have and hopefully their work with LDA will move things along with making better guidelines appropriate to the situation here in the UK. It only needs one country to start listening and working to consider the many complexities of Lyme and TBI's for others to follow suit and so far there have been several countries moving things along especially this year.
I posted on this blog about http://lookingatlyme.blogspot.co.uk/2010/12/over-reliance-on-test-results-we-need.html
Interesting to hear LDA saying that about 1000 tests done each month this is Western blot so that means that all these patients or most will have had a positive ELISA as well as the fact that doctor is considering a possibility that they have Lyme disease. Looking at my blog post above only 6% test positive on the Western blot so rather worrying about the other 94%.
Only time will tell how effective these new tests will be and how Guidelines are influenced by James Lind looking at all the available research.
As my symptoms were mainly arthritis and muscle weakness it is possible more likely that I was infected by the B. burg. although it is not considered to be as common in UK as Bg or Ba so maybe these tests will not be so helpful to patients in my locality if it is as I suspect B b