There has been huge excitement this week after the press picked up on the fact that a UK billionaire’s entire family has Lyme disease. He then went on our most popular daytime TV show and gave a passionate and frank interview about the devastating effects of chronic Lyme, the lack of a good diagnostic test and the abject lack of treatment on the NHS.
The reason for the excitement within the Lyme community is that, in the past, anyone who has said the standard NHS Lyme test is rubbish has been passed off as a crank and anyone who has highlighted the fact that chronic Lyme exists at all, let alone to the extent that it does, has been dismissed as hysterical. This week, John Caudwell exploded both myths and I’m delighted for the Lyme community that finally this awful disease has been given the recognition that it deserves.
The reason I’m covering Lyme in this post is that a proportion of people diagnosed with ME actually have Lyme disease, which isn’t routinely tested for in the UK (and even if it were, the test is notoriously unreliable). ME is currently a diagnosis of exclusion and one of the first things doctors should exclude is Lyme. Only of course they don’t.
I live in a known Lyme endemic area yet doctors and vets I’ve spoken to over the years are totally lackadaisical about Lyme, its effects and treatment. They all seem to think it’s a tiny problem which can be cured with a couple of weeks of antibiotics, not a massive problem which if left untreated can be fatal. It’s scary how complacent health professionals are, particularly in an area which is well known to have Lyme disease. I dread to think how dismissive they are in cities where Lyme isn’t deemed to be an issue at all!
Lyme has always been thought to be a tick born infection, ie you are bitten by an infected tick and contract the disease. However, the fact that John Caudwell’s entire family have Lyme turns this on its head. The chances of them all being infected by tick bites is miniscule which leaves one wondering how they did all contract the disease.
From my own personal experience, Lyme has never been an avenue I’ve explored as my history didn’t fit the Lyme profile. I was perfectly well one minute, caught a mild tummy bug, had an allergic reaction to a drug, and never recovered from either. At the time I was working on a cruise liner in the middle of the Atlantic ocean and, as far as I’m aware, ticks don’t live in the sea. If ME had a poster child I’d probably be it.
I was bitten by a tick a couple of years ago which had crawled off my dog and on to me, so I did ask for an NHS Lyme disease test just to be on the safe side which came back negative. My symptoms haven’t increased since the bite, and I’d been ill for 20 years before it, so I’m still as certain as I can be that Lyme isn’t an issue for me though it can never be fully ruled out until a better test is used.
Of course if it turns out Lyme can be contracted through other means, eg person to person contact, it’s an avenue we might all need to explore. For more information on Lyme head over to Lyme Disease UK or Lyme Disease.org.