A recent Freedom of Information request to the Health Protection Agency on the number of samples tested for Lyme Disease resulted in the following:-
In 2009/10, there were 14,093 samples submitted and the number of positives that year was 867.
That is 6%.
The above if analysed closely is rather shocking.
The figures relate to samples tested in England and Wales because Scotland having a separate HPA keep separate figures. An earlier post about the figures is here
These above samples relate to the second of a two tier testing protocol.
So in general all these 14,093 samples from patients will have been sent by their doctors because they are suspected of having Lyme Disease.
In essence doctors consider Lyme Disease to be so rare in the UK because that is what they are taught at Med school.
The experience of many patients is that doctors are reluctant to consider Lyme Disease even when patients present with a Bulls Eye rash, the Hall Mark of Lyme Disease.
If in fact a doctor considers the possibility of Lyme Disease the initial test is the Elisa, which by many doctors experienced in treating Lyme Disease is considered next to worthless because of it's false negatives and false positives.
However if a patient gets a positive Elisa then eventually, if they are lucky and their sample does not get lost( which seems to happen not infrequently) their samples are forwarded to the Lyme reference unit at Southampton for the final test the Western blot, of which the above figures relate to.
The HPA constantly say that the Western Blot is the best available test but what they fail to say is that there is a considerable body of research which shows the problems over the Western blots which can in fact miss up to 50% of cases ( Steven Phillips presentation to IDSA review panel is a useful reference for this where he presents 25 studies on seronegativity and persistent infection here and here as well as other presentations from ILADS website here ).
Even the makers of the test kits Trinity Biotech say
"B. burgdorferi strains exhibit considerable antigenic variation. Patients often develop early antibodies to the flagellar antigen which can be cross reactive. Patients in the early stage of disease and a portion of patients with late manifestations may not have detectable antibodies. Early antimicrobial treatment, after appearance of EM may lead to diminished antibody concentrations. Serologic tests have been shown to have low sensitivity and specificity and, therefore, cannot be relied upon for establishing a diagnosis of Lyme disease (6,7,8). The Second National Conference on Serological Diagnosis of Lyme disease (1994) recommended the use of a two-tier test system for Lyme serology in which positive and equivocal samples from a sensitive first-tier test must be further tested by a more specific method such as Western blot (second tier). Positive results in the second tier test provide supportive evidence of exposure to B. burgdorferi which could support a clinical diagnosis of Lyme disease but should not be used as a criterion for diagnosis (9). "
This information is not being relaid back to our doctors.
So what of those 14093 less 867 = 13226 patients?
Are they still struggling with symptoms which have now become chronic?
Have they like me and many others been dismissed as having Fibromyalgia, ME/CFS, an imaginary all in your head diagnosis, or worse some neurological or Psychiatric disorder and treated on palliative drugs when perhaps antimicrobial therapy would have been more appropriate?
What of the many more patients who failed the initial Elisa and never got to have a Western blot?
What of the many patients who never suspected their illness could be the result of a tickbite or whose doctors never suspected Lyme Disease?
What of the many other tick borne illnesses that are rarely ever tested for here in the UK?
Will our UK 'expert' open her mind and start to redress the problems after listening to the presentations at the recent Institute of Medicine-
A Workshop on the Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-borne Diseases: the Short-Term and Long-Term Outcomes here
her presentation and links to the conference can be found here
or will doctors remain ill informed and patients remain without adequate care?
Until better tests can be found patients need better clinical diagnosis.