In the UK, thanks to dogged persistence from the likes of UK charity Lyme Disease Action, some progress has been made. Establishment medics and scientists in the UK are more inclined to admit (at least in private) that there are grey areas in the diagnosis and treatment of Lyme Disease. Behind ‘closed doors’ they are more inclined to engage in discussion and joint research. In public, regrettably, their attitudes and pronouncements remain, like their career prospects, guarded. This linked article, from Huffington Post, describes how the battle lines remain starkly drawn in the USA. Be in no doubt that, despite the progress I mentioned above, these attitudes remain in the UK too.
As someone who fell into a Lyme diagnostic ‘gap’, and have suffered as a result, I recognise the issues only too well. My previous posts on Lyme Disease set out in detail how I fell ill in 2011. They describe how I was diagnosed and treated in the UK for Lyme Disease. My reason for adding this post now is that, three years after completing one of the longest and most aggressive (oral) antibiotic treatment courses I’ve heard of, I am again unwell. According to the established doctrine I cannot possibly still have active infection, so it’s a measure of how much attitudes have changed in the UK that I’m now awaiting the results of another blood test from the Rare and Imported Pathogens Laboratory (RIPL) at Porton Down. A test carried out in November 2016 was assessed to be “borderline / equivocal”. I was able to ‘leverage’ the tests because I have a history of tick bite and Lyme Disease, and I’m very knowledgeable about the disease.
The ‘Huff Post’ article talks about the need for new and more accurate tests. There is general agreement that a patient presenting with a clear Erythema Migrans (so-called ‘bullseye) rash should get treated without the need for confirming blood tests (though not all do). Therefore the improved tests are for those who are suspected of having Lyme Disease, or for whom treatment appears to have failed. Leaving aside the added challenges of recognising and testing for co-infection with other pathogens delivered with the same tick bite, the very difficult initial challenge is to heighten clinicians’ alertness. How do we raise in GPs the thought that a patient, who in a 10 minute consultation presents with symptoms that are ‘odd’, transient, and may be caused by 100 different things, might have Lyme Disease? Only after suspicion comes the testing. We’ll also leave aside, for now, the problems with efficacy of the standard treatment options.
Other diagnostic problems are what happens to those victims whose disease follows an atypical course because a) they have no rash (like me), or b) the rash is simply not recognised by a doctor, or c) the patients themselves simply shrug off the early symptoms, which often briefly resolve, until they are overwhelmed ? For these patients the very real risk exists that, by the time a Lyme Disease diagnosis has been made, the pathogen has disseminated throughout the tissues and central nervous system and will be difficult, if not impossible, to eradicate. And if they “fail” or, as Huff Post puts it “flunk”, the test – what then?