Lyme's disease- some tips(12 Posts)
Ok. A short piece about Lousy Nasty TICKS AND LYME'S. Boring but necessary.
It's tick season and we're all in shorts. Quite a few people have asked me to help to clarify a few things to look out for after being bitten. Unfortunate enough to have had Lyme's, I thought I'd share a few tips. Go share and spread the word. There's not a good deal of really practical info out there and GPs are for the most part surprisingly ill-informed about it- there’s just not enough information for them and it is not yet routine NHS policy to test. Lyme’s is on the rise. Big time. The Infectious Diseases Team at George’s have noted a ten fold increase.
Until public health policy catches up to the silent plague as it’s called, here’s a few things we can do to keep ourselves and our children safe.
1) Best thing? Don't get bitten. Wear socks over trousers or leggings and get some insect repellant if you're camping, hiking, cycling in grass, picnicking, even doing military fitness in the grass. I KNOW it seems ridiculous in this heat but trust me, it's MUCH less stressful than getting infected! Ticks have evolved to sit with their hind legs on grass, bracken, leaves with their front pincers out WAITING FOR YOU. Yes. You.
2) If you've been in woods, long grass and ESPECIALLY high risk areas like Richmond Park, Bushey park, on holiday in the New Forest, Scottish Isles, Northumberland, the whole of the UK in fact, always do a detailed exam of yourself and your kids in the bath. Don't forget hair, armpits, behind ears, etc. Don't be shy. And look at this full stop: . That's how big they are. So look bloody hard. (note: ticks anaesthetise the area so we cannot feel them and they do not itch, all the better to feast on our flesh).
3) You find one. Uch. Get it out with tweezers or tick removers by grasping and gently twisting. Don't leave anything in. Don't use vaseline, and don't run away screaming.
4) There's a rumour that it has to be in 24 hours to get infected. Crap. Mine was in my knee for 4 hours.
5) Ok now so scenario one: it's out, and everything seems fine. No response afterwards; no rash, no symptoms. Hurrah. Lucky you. Cover the hell up next time.
6) Or: you get the bullseye rash round the site. Very specific with red rings. Google it. Be aware of it. Go to your GP with that or any other weird rash and don’t wait. You’ll be given 2 weeks of antibiotics and will have caught it very fast.
7) Sometimes there'll be NO SKIN response- in 1/3 of cases. (I had nothing to show for my tiny little bite). A few days to a week later, you start to feel horrific. Achey, hot, poorly. Like you've got flu. Right. You go straight to the doctor and tell them you got bitten. Insist on antibiotics. (it should be a course of TWO weeks doxycycline if you catch it early).
8) Still no rash? Flu gone? But now horrific tiredness? If you or your kid is really knackered, like wierdly so... go to your GP AGAIN. Now here's the problem. You can get a blood test but the Lyme's antibodies will not show up in your system for SIX WEEKS. So you might get a FALSE NEGATIVE. So you're a bit screwed. If you have a nice clued up GP they'll spot it and stick you on anti'bs. But they might also send you home and tell you to "look out for other symptoms".
9) Go again, for another blood test, at 6 weeks if anything doesn't feel right about you or your kid. Don't be content to be told to go home and man up.
10) Finally - neurological symptoms. Can happen at any time in this period. Neuralgia, numbness, tingling, nerve pain, go to doc: facial palsy, meningitis symptoms or total paralysis? A&E obvs. You'll know which. You'll need 4 WEEKS of doxycycline and a referral to an Infectious diseases specialist, MRI maybe, nerve tests etc. Follow up and hang on for the ride. Be tenacious, clear about your symptoms (keep a diary) and don’t be hysterical. (doctors understandably hate that).
Finally, there’s a scenario in which you don’t find the tick, but you have been bitten. (They feast for two days then drop off). So be mindful, keep these tips in your head, look for rashes and poorliness especially if you’ve been in a high tick area.
I was bitten on July 7 last year hiking in Scotland. I got the "flu" a week later, but put it down to my kids germs. I then felt like I couldn't get up out of bed all summer, and succumbed to periods of total narcolepsy! If there was a chair, I'd be asleep in it. 6 weeks later, my hands started to tingle and went totally numb at night. My back was bad. I felt horrific. Shooting pains down my face and nerves. Arthritic joints. I insisted on a Lyme’s blood test (they'll tell you it's thyroid and liver BLAH BLAH) but there it was. One bloody tick. Lousy bloody Lyme's. And a year on, well I'm still in the care of the team at George's and not certain we're yet clear. AND I WAS LUCKY ENOUGH TO BE CLUED UP ENOUGH TO ASK FOR THAT BLOOD TEST.
Please look after yourselves and your loved ones this summer. And most of all your kids. If this is what Lyme's does to a healthy grown woman, I hate to think how it would interfere with small brains and nervous systems. Truly. And if they're only 2 and they can't tell you they have tingly hands, well... that's what scares me. Wise up to Lyme's, all. x
Wow- thanks for this. We have had many holidays in Europe in areas where encephalitis carrying ticks are common and we were so careful with taking precautions. But I never think about it in the uk. I will do now!
Thank you so much for posting, and I'm sorry you've been having a dreadful time. My BIL had Lyme's, so I know how dreadful it is.
Very sorry you have such an awful time. I do remember when I was in Canada people seemed more clued up about this condition than here, where it doesn't seem to be fully recognised and the person I know of who has it had to go abroad to get treatment. I walk in Bushy Park fairly frequently so I'll take on board your advice and thank you for sharing your knowledge on this forum.
I have reported this to MNHQ and asked them to pin it. It is very important and we all need to be aware of it.
Two of my dc have been bitten by ticks (one very recently and I'm watching him like a hawk) but dh, despite being a very experienced hillwalker and Scout Leader, was unaware of the dangers.
Ds is running a temperature. No rash, but feeling very grotty. Tick bite was 12 days ago. I'm taking no chances - calling the GP 8am tomorrow.
I know a teen living with the consequences of untreated Lyme. Please take this seriously.
How did you get on at GP GoodyGoody? My DS has just picked up Lyme Disease on a school trip to woods in Hertfordshire. "Luckily" he has the bull's eye rash. The GP has prescribed 2 weeks of antibiotics but from other reading I've done on the internet I'm not sure 2 weeks is adequate and not sure the dose is high enough either.
3 weeks of amoxicillin.
No rash, but fever and history was enough.
My understanding is that the sooner treatment begins, the less you need. So, starting ABs within a week of the bite, 2w of treatment may be enough. How long ago was your ds's bite? How is he now?
The bull's eye came up 12-14 days after he was bitten. He has no other symptoms.
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