We visited the Vyne, a National Trust venue near Basingstoke in Hampshire, which was stunning and had so much for the children to do. Tick bites and Lyme disease were the last things on my mind.
We had a great time exploring the very extensive woodland (where we found our first geocache), the walled garden, house and chapel. Then we had a nice long walk around the ornamental lake.
Lyme Disease
The day after our visit one of my daughters told me they had a spider on their arm. There was a weird black spot on the inside of her elbow. I tried to rub it off but it didn’t budge. I kept picking, but then was concerned that maybe I was actually scratching off a mole. Then the thing came off. We put it on some white paper and discovered it had legs!!
I immediately took a photo. I wasn’t sure what it was and whether it was something I needed to be concerned about, so I consulted the Oracle that is Facebook, and my friends immediately responded. It was unanimous: it was a tick. Everyone said I should get it checked out, as without using a proper removal tool I may have left part of the tick in her skin and this would be bad. This site has some very useful information about proper removal and dos and don’ts.
Not the best pic, but you get the idea
The doctor took my call very seriously and we went the same day. He couldn’t ascertain whether I had removed the whole thing or not.
Symptoms of Lyme Disease
The doctor said I needed to be very vigilant. I had to look out for a ‘target/bullseye rash’ which expands radially from the site of the tick bite. This can occur from two to 30 days after the initial bite. This is a symptom of Lyme disease.
Other early symptoms could include:
- A fever
- Fatigue
- Flu like symptoms
- Erythema migrans or erythema chronicum migrans (the spreading circular red rash)
- Muscle and joint pain
The bullseye rash doesn’t always appear (in as many as one in three cases it doesn’t) and the fatigue in children isn’t constant i.e. they could be running around one minute, lying on the sofa the next and then back up and running around again. This would be pretty difficult to diagnose as would the other ‘symptom’ of tantrums. What child aged three doesn’t have tantrums?
An example of the ‘target/bullseye rash’
A more comprehensive symptom checklist can be found at the Children’s Lyme Disease Network.
The doctor didn’t want to give a course of antibiotics unnecessarily, but said that if she experienced any symptoms to go back immediately and then antibiotics would be administered. We applied Savlon and kept a very close eye. However, I kept reading up about it and got more and more concerned. I called the doctor again and asked for precautionary antibiotics as I didn’t want potentially 30 days of monitoring for symptoms (excluding the rash) that where – at best – rather vague.
In many countries antibiotics are given as standard following a tick bite and the UK is renowned for being bad at diagnosing Lyme disease.
Public Health England: Enjoy the outdoors but ‘be tick aware’
Tick removal
I bought a TickCard for quick, easy and correct removal. This nifty tick remover fits into your wallet just like a credit card, which means it comes everywhere with me. We’ve used it a number of times and each time I’ve been confident that I’ve removed the whole of the critter. I’d recommend.
17 Comments
I’m so sorry to hear your daughter has a tick bite. Not all ticks carry disease but a few things you need to bare in mind are –
– Not everyone who contracts lyme disease gets the classic bullseye rash, some get no rash at all, and some get an atypical rash. If she gets any kind of rash, definitely get her onto some anti biotics.
– Early, affective treatment is key. The sooner you treat the more likely there’ll be no lasting consequences. This also means treating aggressively enough. In adults in the UK the NHS recommends 200mg a day of doxycycline anti biotic for 2-3 weeks but American Lyme experts say it needs to be 400mg a day for 4-6 weeks. In children doxycycline isn’t given but it’s something to be aware of.
– If the tick does carry disease, it might not be Lyme disease, or it might be lyme disease and a bunch of other infections. Other chronic infections that people in the UK have contracted are Babesiosis, Bartonelliosis, Anaplasmosis, Ehrichiosis, and rarely, severe viral infections like tick borne encephalitis.
– The testing for Lyme disease is highly unreliable, there are studies that say the sensitivity is around 50%, so half of people with Lyme disease will test negative using the current standard two tier testing procedure.
– The testing for the other infections is even worse.
– The infection can remain in the body asymptomatically for many years. Then when the person is under stress or another illness comes along, the immune system no longer can keep on top of it and symptoms develop. Depending on the mix of infections, symptoms can develop very rapidly, or very slowly.
– Lyme disease is highly controversial. The NHS follows the lead of the Infectious Disease Society of America, but there are alternative guidelines by the International Lyme and Associated Diseases Society that have a completely different viewpoint, backed up by science.
– The NHS lags behind many other European countries in terms of knowledge and expertise. Many UK patients end up using alternative medicine or going to clinics abroad.
For more information see Lyme Disease Action and Lyme Disease UK (we also have a Facebook Discussion group) Group members can answer any further questions you have, as many of them are parents of kids with Lyme disease.
Best of luck and I hope your daughter stays well!
Hi Louise,
Thanks very much for this. You mentioned the other infections; are there any particular symptoms I should be looking out for, for these?
Thanks again.
Francesca
Good to hear you had some knowledgeable friends that pointed you to the possibility of Lyme Disease and also a cautious doctor. However you need to know that not all Lyme disease infections present with a Bulls Eye or Erythema Migrans rash and the rash can vary and be mistaken by doctors for such as ringworm.
Take some time to learn more about Lyme disease and other tick borne diseases from UK Charity http://www.lymediseaseaction.org.uk/ sometimes the symptoms in children can be quite subtle often presenting with learning or behavioural difficulties , fatigue and cognitive problems. Common early symptoms can be flu’ like illness, stiff neck, headaches and migrating aches and pains or peripheral neuropathies – twitching and tingling especially of the face a bit like walking through cobwebs.
If that early opportunity to treat a Lyme infection is missed then later stages of the disease can be very much more difficult to treat, even if you find an experienced doctor, a rare find in the NHS.
Testing for Lyme Disease is not very good it is a two tier antibody testing process ELISA the first tier misses 50% of cases and only if that is positive the second tier antibody test the Western Blot is done and that also can be false negative. It can take 6-87 weeks to produce the antibodies but there are many reasons why someone may not produce the antibodies being tested for.( different species or strains of Borrelia, immune dysfunction, antibiotic or steroid treatment for other conditions)
Due to outdated and restricted guidance doctors and Consultants fail to recognise the disease in the later stages and many thousands of patients in the Uk struggle to get medical help. Facebook group Lyme Disease UK Discussion group https://www.facebook.com/groups/481294698590907/ is proving to be a useful resource.
Hopefully your daughter was not infected as not all ticks are infected with Lyme disease but knowledge is important as doctor knowledge is poor when it comes to tick borne diseases. So much so that Lyme Disease Action recently helped produce a training E learning for Doctors with the Royal College of General Practitioners. Lyme Disease Action are also working with Dept of Health and Public Health England and following research with James Lind Alliance which found many uncertainties in current PHE guidance that guidance is to be updated but it will take some time. Meanwhile the best resources for patients and clinicians in UK is Lyme Disease Action website.
Apologies it should read ‘It can take 6-8 weeks to produce the antibodies’
Thank you Joanne. I am quite concerned that I’m going to miss something as she has only just turned three and might not be able to describe some symptoms if they were to occur. I will certainly take time to learn more about the disease as you suggest.
Thanks again.
Francesca
Fran It is difficult to raise awareness without frightening people but I have heard enough sad stories of children suffering with Chronic lyme Disease because early signs were missed.
If she develops any symptoms then contact support@lymediseaseaction.org.uk and they may help support you in discussions with your doctor.
Meanwhile one of the best resources for pediatric cases is by Dr Ann Corson http://www.lymedisease.org/resources/children_pdf/CorsonPediatricLymeTalk.pdf
I know a number of parents in the UK who have been unable to get appropriate treatment for their children for Chronic Lyme Disease who have travelled to USA in order to get appropriate treatment.
Fingers crossed your daughter remains well and that you stay vigilant in the future for ticks details on LDA website. The South West and Hampshire are areas with high tick numbers but actually ticks and lyme can be found throughout UK and as the smallest tick often biting humans is poppy seed sized Nymphal tick we don’t always know we have been bitten.
Hi Fran, From personal experience, I would say please go back to your GP and ask him to treat as a precaution. My daughter, who is now 20 was bitten by a tick at 3. She had the classic bullseye rash, but because the test came back negative (they are not accurate) my GP refused to treat as a meter of precaution. She has been unwell for several years now and had been diagnosed with ME/CFS. We had to get the tests sent to the US, but she is positive for what’s known as late stage Lyme disease. This means very aggressive treatment for a long period of time. Lyme is a very nasty disease and if not treated early, can disseminate throughout the body, causing many health problems. I would say to you please, please go back to your GP and ask for precautionary treatment. It just isn’t worth the risk. Good luck and I hope your daughter stays well.
Thanks Deb. I am definitely going back to the doctor.
Sorry to hear about what you and your daughter have been through.
Fran
Hi Deb,
Prompted by yours and others stories, I have been in contact with the doctor again. I shunned the blood tests that were offered and we have a 10 day course of co-amoxiclav, which we are starting tomorrow.
Thanks for sharing your experiences, if it hadn’t been for people posting and commenting I wouldn’t have forced the issue at all.
Good luck to you too.
Fran
Hi Fran,
Just want to say I am so glad you have some treatment for your little one. Wishing everything well for you all. Lots of love xxx
Thank you Deb. x
Good for you that you are using your nasty experience to warn others. It’s useful to have people report tick incidents away from what everyone believes are the hot-spots. We are currently taking my adult daughter to a German doctor for treatment of chronic Lyme picked up in Oxford. Like the others above it’s hard to strike a balance between scaring people and making sure we help avert what we are coping with. Going back to your doctor is not over-reacting. In Germany people who have a definite tick bite are given antibiotics immediately as the infection is easier to treat the earlier you get it. Several weeks unnecessary antibiotics may seem harsh but not when compared to the effects of a possible chronic infection. Tick-borne disease may appear to be more common in Germany but, to be honest, for the individual the probability is not important; Lyme is present in the UK and any tick bite could transmit it. Best of luck – I hope this is an unpleasant but temporary episode for you.
Thanks Louise for you encouragement and for sharing your experiences. I hope your daughter gets the treatment she needs in Germany.
Thanks again.
Fran
Hi Louise,
I called the doctor again today. They are pretty clueless. However, we have a 10 day course of co-amoxiclav, which we are starting tomorrow.
Thanks for posting, if it hadn’t been for people sharing their experiences I wouldn’t have called the doctor again to insist on precautionary antibiotics.
Fran
Hi Fran,
The advice given above is very good. Not much more I can add. (I was bitten by a tick, at a National Trust property, I didn’t see it though. I got the bulls eye rash. I had to insist on a test even though the Dr said you don’t get Lyme in this country. I had flu type symptoms plus fatigue, tingling down one side, acute
Hearing, migrating arthritis around my joints, weight loss, sleep problems etc, many weeks later I got a call from my Dr saying “you’ve got Lyme Disease whatever that is”. He said I was probably better as the results had taken so long. After doing some research I asked for antibiotics. Technically, I caught it “early” but was Ill for many years.
I do think as a precaution antibiotics should be given to your daughter, even if the tick didn’t carry the bacteria and co-infections.
I thought it was revealing to hear a Doctor from Scotland say that his area is seeing more and more
Lyme Disease so (without any testing) he treats his dog three times a year with antibiotics – as a precautionary method.
I hope your daughter stays well but at least you are well informed.
Hi Angela,
Really sorry to hear about all of those symptoms you’ve experienced. I called the doctor again and said that I was really concerned. They really don’t seem very clued up at all. She made some noises about blood tests, but I knew from what others have told me on here that these are pretty inconclusive in early stages and there are many false negatives. I said no to that and she asked me what I wanted so I said antibiotics as a precaution. We have a 10 day course of co-amoxiclav, which we are starting tomorrow.
Thanks for sharing your experiences, if it hadn’t been for people posting and commenting I wouldn’t have forced the issue at all.
Fran
Hello Fran and Angela,
I’m really glad you’ve got some antibiotics pretty early for your daughter, Fran. I don’t know enough about Lyme to know whether that length is a good precautionary measure or not, but at least you have space now to make further enquiries in the knowledge that she’s already on medication. I would personally recommend to you both the LDA and the Facebook group who were both very helpful to me in the early stages of our Lyme experience – the Facebook group continues to be so. You would be able to “meet” with others who have been in exactly your situation. Please keep an eye on your daughter for any signs of illness. I hope she’s reassuring well for the next few weeks. So sorry to hear about your experience, Angela. That demonstrates two key areas of misunderstanding: the bull’s eye rash is completely diagnostic and antibiotics should be given without reference to any test, and that the test does not give a positive until the window for early treatment is over. I hope your illness is over and you feel well nowadays. It’s very interesting to hear about the dogs! So often it seems we treat our dogs more sensibly than humans!