Lyme disease and me

Some medical experts claim that Lyme disease is worse than cancer. It’s not a competition, but I do know one thing: at least if you’ve got the Big C you get sympathy, understanding and prompt treatment. With Lyme you’re pretty much on your own.

This isn’t a plea for public sympathy. I’ve had Lyme for God knows how long — decades possibly — and though it has disrupted my health and my life in myriad weird, torturous and sometimes hideous ways, I still consider myself one of the fortunate ones. First, it hasn’t killed me; second, I’ve had some state-of-the-art stem cell treatment which with luck will eventually cure me. But it’s definitely not a condition I’d recommend.

It starts, as you probably know, with a bite from an infected tick. These are everywhere — the Scottish Highlands, the south coast, Richmond Park — and can be as tiny as a poppy seed. You’ve heard about the tell-tale ‘bullseye’ rash but this doesn’t always appear. Certainly, I don’t remember being bitten.

If you catch it early enough you can zap it with antibiotics (though usually with a heavier dose than the NHS is willing to prescribe). Any later than six months and you’re stuffed. Borrelia, the Lyme parasite, is a stealth microbe with a gift for burrowing itself into the deepest recesses of your system, eluding detection or interdiction.

Lyme disease is known as ‘the great imitator’ because it mimics so many disparate conditions, from rheumatoid arthritis, nerve pain, insomnia and chronic fatigue to (the one that has screwed me up most) psychosis. Every Lyme sufferer has the same experience: endless trips to the doctor with different problems continually misdiagnosed; friends and family members increasingly convinced that you’re the world’s worst hypochondriac; a growing sense of despair that this is never going to end — which is why the commonest form of death for Lyme victims is suicide.