Do I have Lyme disease?
Marta Jacyna
Lyme is a difficult disease to diagnose, and its symptoms are easily confused with many other disorders. Let’s look at possible symptoms, what can be done and how to cope when diagnosis fails to pinpoint the issue.
I have been an outdoorsy person all my life. As a child, I would run around my uncle’s farm and the nearby woodland and farmland; I interacted with plenty of animals, both wild and domesticated.
I am a keen forager and a still-to-get-that-first-deer novice stalker. I also used to train my dog to track deer while she was still young, which meant trudging through bracken, heather, ferns, brambles and the like.
And I have been bitten by ticks more than once…
I remember my grandma pulling them out of my head when I was younger. Back then, nobody really talked about the risks of infection, and I have a feeling most people didn’t even know such a danger existed; many would cover ticks in alcohol or Vaseline to get them off – which, we now know, can lead to the tick regurgitating the contents of its stomach back into the bloodstream and potentially infecting the host.
Ticks and Lyme disease
There are 20 endemic species of tick in the UK alone, and the most common ones are Ixodes ricinus (the black-legged/deer tick), Ixodes hexagonus (the hedgehog tick) and Ixodes canisuga (the British dog/fox tick). All ticks of the Ixodes genus can be carriers of the bacteria which causes Lyme disease (Borrelia burgdorferi).
In the grand scheme of things, ticks carrying Borrelia are not very widespread, though there are regions where the risk of infection is higher – even up to 50 per cent.
Studies in Europe estimate that 1-5% of tick bites can lead to Lyme disease, and gov.uk reports that 2.5-5.1% of ticks in England and Wales carry this bacterium. In 2021, there were 1,156 cases of laboratory-confirmed Lyme in England and Wales.
The small, immature ticks, called nymphs, are the most common vectors. At about the size of a pinhead, they’re also difficult to spot. Nymphs primarily feed on small animals, such as birds or rodents, which infect the tick with the bacteria.
Interestingly, deer, the prime hosts for mature ticks, are immune to the Borrelia bacteria and actually kill it off. At the same time, the tick needs deer to reproduce. So, the higher the number of deer, the higher, potentially, the number of ticks. The growing population of the UK’s largest wild ruminants, coupled with milder, wetter winters, contributes to the rising number of ticks.
Speaking of animals, do not forget that our dogs can also suffer from Lyme disease – and it can be fatal for them. Lyme in dogs is tricky to diagnose as symptoms can be vague, ranging from lameness, swollen lymph nodes and fatigue to loss of appetite or swollen joints. We’ve written about this previously, which you can read here.
My journey so far
A good few years ago, I noticed I wasn’t feeling quite right. I felt worn out and tired, my joints would often feel stiff, and I struggled to concentrate. For somebody who always has been organised, worked through a list of things to do efficiently, multitasked fairly well, and enjoyed keeping busy, all this was quite debilitating.
Headaches became more common, and I struggled to fall asleep and stay asleep throughout the night. Not to mention the worst of them all – especially for a woman, if I may say so – the hot flushes, night sweats and gastrointestinal problems (akin to IBS). At one point, when the symptoms were at their worst, I sometimes couldn’t even keep food down.
There is only so much one can take when all these strange symptoms rage on. In the end, it starts affecting your mental health, too. Lyme limits what you are physically capable of doing and makes you constantly worry about your ability to work, go out and socialise.
The GPs were quick to dismiss my concerns. They ran some blood tests and did some X-rays, but all was fine with me on paper. I was given various medications for IBS, none of which made a difference.
Luckily, I work at BASC where I met people diagnosed with Lyme disease. While my symptoms didn’t completely align with theirs, I dug deeper and soon discovered that what I have been going through could also be Lyme disease.
At my next GP appointment, I raised my concerns. Finally, the doctor who saw me agreed to check me for Borrelia antibodies. While waiting for the results, I hoped it would give me an easy answer, but it wasn’t meant to be. The test came back inconclusive, but the doctor decided to err on the side of caution and prescribed antibiotics for me to take. To my relief, my symptoms improved considerably. They never disappeared entirely, but at least I felt I was getting some control over my life back.
Unfortunately, I continue to struggle with what I suspect is Lyme disease. There are some days that are great, when I feel like I could move mountains, and days when I really struggle, but I will take that.
How to protect yourself against ticks
Not leaving the house is rarely desirable or acceptable, especially for people like me, who enjoy being outdoors. Sticking to urban areas won’t guarantee your safety either.
Sometimes you will notice a tick, and sometimes you may not be so lucky. You can rarely feel a tick walking on you, looking for the best place to bite into. Their saliva contains kinases, a numbing agent, which ensures that the host remains oblivious to the hitchhiker throughout the feeding process.
Ticks generally don’t go too far from where they have landed. They can often be found on the head or behind the ears in children and lower parts of the body in adults.
Prevention is key if you want to limit the chances of getting bitten. Wearing a cap, long sleeves and socks over your trousers will make it more difficult for a tick to find exposed flesh. Some people even use tape to seal off any gaps between clothes and skin.
Nowadays, you can also find tick-repellent clothing (ranging from shirts and trousers to boot covers and even socks), which work very well, too. There are many chemical and natural deterrents available, too, but there is no silver bullet that will protect you completely.
Found a tick – what now?
Firstly, do not panic. Finding a tick that latched on is a good thing as you can remove it fairly easily. Don’t be tempted to just yank it off with your fingernails, though, this will likely result in ripping off it’s head which can lead to a nasty infection.
Time is of the essence here – the quicker you take the tick out, the less chance of getting infected. Some sources say that it can take as little as 24 hours for the tick to infect you. This is why it’s so important to check yourself for these unwanted passengers every time you’ve been out in areas where ticks are common.
If you have a tick card or a tick removal tool, grab those. Tweezers will work just as well, though. Make sure to find a brightly-lit spot so you can clearly see what you’re doing. You need to grab the tick as close to your skin as possible.
If you’re using tweezers, don’t squeeze the tick too hard or you can cut it in half, then steadily pull up. You will be surprised how well they latch on! If you’re using a tick removal tool, check for instructions as some will tell you to twist rather than pull.
There are many websites with good advice on how to remove a tick. Here are a few examples:
Don’t be tempted to rinse the tick down the sink – treat it as if it was infected. Some say to flush it down the toilet but I prefer to make sure it’s well and truly dead by burning it.
Lyme – what to watch out for
If there’s a chance you have been exposed to ticks, keep a close eye on your health. While some people who are bitten by an infected tick develop erythema migrans (bullseye rash), many won’t and will never even know they were bitten.
If you’re feeling generally unwell, or the symptoms you’re experiencing are strange and prolonged, see your GP and mention that you could have been bitten by a tick.
Some doctors will do a blood test and prescribe antibiotics just in case, too. Monitor how you feel while on the antibiotics and a few weeks after. If you initially feel better but then symptoms gradually return, you might require longer treatment.
The key message from me is: don’t give up, don’t let yourself feel guilty and useless, and try to find ways to help you cope with the symptoms, whatever they may be. Just because doctors struggle to figure out what’s wrong, that doesn’t mean you’re not in need of their attention. You deserve help just like any other patient.
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