To be absolutely terrified of Lyme disease

[Marata]

Warning: do yourself a favour and don’t read this thread if you have health anxiety as it will obviously be triggering. I accept that I have abnormal anxiety and need help. Most people are not worried about this

I don’t know if anyone can really help me with this. Just wondering if anyone might be able to offer some perspective. As a kid we sometimes visited the northeast of the US and would be warned to look out for ticks on woodland walks etc, I hated it and was so glad it wasn’t something we needed to worry about in the UK (actually I was probably wrong about that, but certainly numbers were much lower here). I can’t remember when I first read in the news that Lyme Disease was becoming an increasing issue in the UK, but I think it was probably around 2017. Since then I have grown increasingly worried about it to the extent that it is really affecting my life. Hiking used to make me happier than anything else in the world, I don’t really like doing it any more because the whole thing of having to check my entire body for a tick so tiny that I might easily miss it anyway spoils the pleasure for me. Friends who live in rural areas in Sussex and West Wales have invited me repeatedly to visit them, I want so much to go and see them (and they can’t understand why I’m not coming, I don’t want to tell them the real reason because I don’t want to be a drag) but I just feel too nervous as I’m sure they will want to go for walks through grass and I don’t want to explain why that makes me nervous. Even stuff like going for picnics in the park is making me anxious as there have been cases of people getting bitten and infected in London parks. Even going for walks on paved ground I worry about brushing against some greenery accidentally. I feel like it’s not long since all the limitations caused by Covid, and now this anxiety is making my life feel limited in a different way. Can anyone relate?

I realise this is excessive health anxiety and I probably need a therapist, but it feels hard to work out where the sensible medium is. Ticks are so tiny, there seem to be a lot of stories of people not realising they’ve been bitten and not recognising they’ve been infected until the disease is already doing a lot of damage to their system. There are also the stories about doctors not recognising that Lyme Disease is a problem, refusing to treat without a bullseye rash (which not all infected people get) etc. It just feels like a bit of a nightmare.

Can anyone help to give me some perspective? I know plenty of people go out and enjoy the outdoors every day without getting bitten or infected. I know even if people do get infected, sometimes they catch it early and get it treated with antibiotics. I try to remind myself of those things, but this fear is really limiting my life and I hate it. I feel like I would be too scared to get a dog or a cat, or to visit friends with pets, in case they have ticks and transmit them. It’s awful.

I'm sorry to hear about your anxiety Op. I'm no expert and don't want to minimise. However we live in a high risk area. We have ticks in our (very big) garden and I would say that in an average year I get bitten perhaps a dozen or so times, as does my DH and all our neighbours. We are vigilant and remove ticks quickly but we are still here to tell the tale. I hope this helps.

This is anxiety and you need treatment for that. We walk in the woodlands each day and the dogs often pick up ticks. Avoid walking through really very long grass. Long sleeves and trousers tucked into socks.

Treating the anxiety is your best option @Marata

You're definitely giving this waaaay WAY more headspace than it warrants. Despite having lived in the Scottish Highlands and the Lake District, where there are a lot of ticks, I've never thought that I need to moderate my behaviour much to avoid being bitten. Well, not beyond checking my arms if I've brushed up against bracken, or sitting on a rock not on the grass to eat a sandwich. It's not something that should be worrying you at all, in my opinion. The same way that you know that there is a risk of being hit by a car when you walk to the shops, so you look carefully when you cross the road, but you don't actually feel anxious that a car will hit you?

For a while I had sevear anxiety about wetting myself in public, despite never having wet myself as an adult. I think your Lyme Disease anxiety is probably in the same league as my pant wetting anxiety, as in it's an intense worry over something v unlikely to occur.

Go see your Dr? 🙂

You definitely need anxiety treatment. It's not a pneumonic plague. First of all, ticks exist but they're not deadly in our neck of woods and you can prevent them from biting you by using anti-tick sprays, checking your clothes and body after a hike.
Second, even if they bite, it usually takes for a tick to be in for over 24 hours to infect you, plus not all ticks are infected.
Third, just check the bite location regularly and should you see the circle, get yourself to the GP and get the antibiotic treatment.

I had a tick in my back for 3-4 days last year before I realised what it was, I thought it was a spot but noticed it felt bigger when I was in the shower so asked DH to look. It had legs wriggling around. He had to gouge it out with scissor as I had nothing else and no shops were open. I'm absolutely fine. The chances of developing Lymes are very small, get some help with your anxiety as it appears if it wasn't Lymes disease you'd be worrying about something else. It must be very limiting and unpleasant, hope you can get help to overcome this.

Thank you so much to those who have replied so far. Bumping just in case there might be any more responses, because I haven’t really discussed this in detail with anyone in my actual life, and I’m finding a conversation about it really helpful

This is anxiety, not ticks. Have you had previous anxiety?

I heard somewhere that there might be a vaccination rolled out later in the year.

DH got bitten by a tick in Richmond Park, had the rash and tested +ve for Lyme and got the antibiotics and is fine. I know a few other people who have had similar and are fine. If you read about Lyme online you would think everyone who had it was going to be terribly badly affected but in reality most people just take the antibiotics and are fine, nearly all ticks don't have Lyme anyway!

Maybe you could seek out the help of an infectious disease specialist to tell you about this to put your mind at rest. Or a phobia/anxiety counsellor.

I give my dog a flea and tick tablet every six weeks, is there a human equivalent?

I get you OP, ticks freak me right out. However, I think if you do get bitten, there are things you can do to prevent Lyme disease from setting in. My bro got a nasty round rash and had to take loads of preventative antibiotics - this was in the Highlands. He's fine now.

I got really worried about Lyme disease around the time the internet first became widely available, and I read far too many articles about it. I’d never even been bitten by a tick at that point.

Strangely, I stopped worrying so much once I was actually bitten by a tick. I did what any self-respecting 25 year old would do and called my Mum (who was hundreds of miles away in a different country!), who told me to go and buy a tick remover tool from the pharmacy. Since then, I’ve always been careful but not worried as such.

Not sure how you can get rid of the anxiety about this. Have you felt like this before about other diseases?

Lyme disease is more widely recognised in Europe/the UK now, I think part of the problem in the past was people going untreated because they didn’t know to look out for it.

Ticks freak me out too. I got one in the Scottish Highlands, noticed it in the bath that night. A couple of weeks later had a slight reddening of the skin in the area so GP prescribed high dose antibiotics as a precaution. Never had any other symptoms.

I now take sensible precautions when out in tick prone areas (wear long trousers tucked into socks, long sleeves unless it’s baking hot, check for ticks each evening, don’t sit on the grass especially where there’s lots of undergrowth) and have never had another one.

I agree with other posters, and think you know, that the real problem here is your level of anxiety. Lyme disease is real and nasty but it’s a very slim possibility you’d get it, if you did it’s treatable, and there are sensible things you can do to prevent it. It’s such a shame that fear of it is preventing you doing nice and healthy things you want to do. Would you be open to getting some therapy for your anxiety? It can be very effective. I’d personally start with your local NHS talking therapies service (via your GP or self referral). Hope you get it sorted and are able to do the things yon enjoy again soon.

It had legs wriggling around

Stuff of nightmares😱

Ticks are rancid OP and I sympathise. We live in a high tick area and have loads in our garden. We've all had them from the garden, school camping, hiking etc
None of us have ever caught lymes disease though - although a friend did from a bite in her garden FFS.
The best advice I can give you is to be vigilant, but not obsessive and remember that a really low number of ticks carry lymes out of the whole tick population.
Recently I listened to a really interesting programme on R4 catchup about ticks in the UK and how rare Lymes actually is. You might want to have a listen 🙂

BTW, I forgot to say the friend who caught Lymes was treated and recovered 🙂

On this thread you are going to get loads of people who have been bitten by ticks telling you about it, because you've asked about it. But that isn't representative of the general population. It's not even representative of people who hike, camp or own pets. The vast majority of people never get bitten by a tick, and of those few who do get bitten by ticks, the vast majority don't get Lyme disease.

You need treatment for your phobia. I have a friend with a similar phobia (not Lyme disease, but another uncommon disease possibly transmitted by wildlife) and it basically saw her end up barely able to leave the house. You need to get some help because - as you know - this isn't normal or proportionate.

I am terrified of ticks too.

Ticks are awful and with all the damp weather are a problem this year. If you're going hiking long sleeves and trousers, check yourself for ticks afterwards and just remove them.

For what it's worth I have had Lyme disease about 15 years ago, the tick that bit me was tiny the size of a pin head, and when the rash and sensitivity began I actually thought it was an ingrowing hair causing infectio. I was on very strong antibiotics for 2 weeks which was worse than the tick bite to be honest, and then I was fine. I do still have a scar on my leg where the bullseye rash was which I like to show to people when we're talking about tick bites.

I would definitely seek medical advice for your anxiety (I say this as someone with previous health anxiety - seeing a GP was life-changing).

As to ticks, pretty rare to be honest. I have been bitten by one once (I don't know anyone else who has, but then every sodding insect under the sun bites me!), got antibiotics (the bite was obvious, I didn't need to hunt for it) and was totally fine. Put it this way, if you get bitten, either you know about it from symptoms (rash etc) and get treatment, or it causes no symptoms in which case it's fine too as there is nothing to treat.

If it helps, I'm the same. I live in cumbria and only hike on rocky paths and brideleways and never through grass. I also never sit down on grass or go camping. I accept I'm probably being over the top but it worries me too much.

I go out in nature all the time. I've been bitten a few times and have never got LD. Including one thoroughly botched removal. I'm not casual about bites though as I have a friend with chronic LD who's life is effectively ruined.

When we spend time outside I do check for them and if there's any sign of illness after a bite I'd be straight to the doctors.

So I live in an area affected with ticks - and I recognise your anxiety. I once stayed up all night - no exaggeration - looking up the numbers of specialist consultants, emailing them, reading every article on the internet, after my son got bitten. I was convinced I'd ruined his life. He took antibiotics for 4 weeks. Even now I am vigilant and a little bit OTT when we cycle through our local park I often call out 'not near the long grass'. But I also know I don't want to spoil things for him. The benefit of that ride has to be taken into account and I don't want my anxiety to affect him.

I've been bitten once. I know exactly when it happened. I normally properly tog up for hikes, but on this occasion, thinking I would only stay on paths, I just wore jeans and ankle socks. I had a coughing fit and left the path out of embarrassment. Was bitten, and recognised it right away. I went to docs but they said 'well, it's not a bulls-eye', I said it doesn't have to be...anyway, a week later it turned hot and into classic shape, ended up in A&E prescribed antibiotics there. If you're vigilant and you catch it within a month, the antibiotics work.

Tick repellents are being researched a lot. I use this one: https://www.lessmosquito.com/products/award-winning-anti-mosquito-spray-repellent-100ml?_pos=1&_sid=1c64ab554&_ss=r but have been looking for alternatives. Found this: https://link.springer.com/article/10.1007/s10493-019-00422-z

I live in rural Normandy, which is tick heaven apparently. Almost every time I spend time in the garden I get a tick. First time freaked me out but I'm so used to them now.
All you can do is wear appropriate clothing (I pop clothes in the tumble drier for 10 mins to kill off any of the evil little gits), lather on tick repellent, and check yourself carefully. As long as you remove any attached ticks fully (i.e. don't leave any of the head attached) and fairly quickly you'll be fine.

Another high tick area here, and have been bitten several times a year, from my garden. I now use a repellent, the same as for mozzies, and that definitely helps. No bites this year. I don't know why I didn't think of it before. .. but it works. I use Incognito spray.

DH did get Lyme a few years ago, he was unlucky, but took anti-biotics. He actually was quite ill for about 6 months, but is fine now. It's very similar to Long COVID or Post Viral syndromes.