Lyme, it seems, is still a “battleground”

The deck is still stacked against early diagnosis

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?


2 thoughts on “Lyme, it seems, is still a “battleground”

  1. Florence camelford

    For the past 30 years, i have had the strong suspicion that Lyme symptoms were revisiting, on and off, from physical ones -difficulty in walking, slowness, headaches…-to mental ones -getting words wrong, forgetfulness,( though i would not even mention it to any doc for fear of being sent to a mental ward as it happened 30 years ago, delaying with severe consequences the diagnosis of Lyme). I am just home from a short stay in hospital with high fever, sickness, headache, neck and back stiffness, dizziness and lethargy, symptoms which have been put down to “a virus”. I did mention i had Lyme and encephalitis again a few years ago but i was met with an incredulous-sounding “how was that diagnosed?” and knew any request for antib “just in case” would be denied, not to mention a test to check the beast has not reared its head.
    A few months ago, i went to my gp and asked for a course of such antib as i had removed 11 ticks from my legs, he had with him 4 students, none of them knew about Lyme! Give him his due, he did give me AB then closed shop and proceeded to enlighten his students.

    1. Andrew Gold

      Hello Florence,
      Thanks for reading, and taking time to contribute to, my post. I’m sorry to read of your experience which is, as you well know, not at all uncommon. It requires a huge amount of resilience and energy to keep on battering at an unresponsive, and frankly ignorant, medical system. It’s not all like that, however. My own experiences have been, broadly, positive – but only because I kept on, and persuaded some open-minded medics that I wasn’t neurotic. By all means look through my other postings on the “Lyme” tab of Near Horizon. I wish you well, and good luck on your Lyme journey.

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