Lyme disease awareness for families enjoying outdoors

[metropolis]

Hi, I just want to alert parents to the dangers of lyme disease. Children can become very ill from being bitten by insects and NHS is not equipped to deal with this.

Lyme Disease is an infectious disease transmitted to humans by the bite of an infected tick, and possibly by mosquitoes, horseflies and sandflies. I was bitten on a family beach and have been very ill for months now. Fortunately my son was not bitten.

Ticks can be found in both rural and urban locations. Lyme disease is known to be present in central London parks. It is very difficult to avoid ticks totally because they can be found in urban parks and gardens, as well as typical countryside locations. It is possible for you or your pets to bring ticks into your home. The best strategy is ?awareness?. On children, ticks are also frequently found on the head at the hairline. Make sure that children's head and neck areas, including scalps, are properly checked immediately and for up to three days after any outdoor visit. Avoid a tick's favourite places by walking in the middle of paths and check yourself after sitting on logs or leaning against tree trunks. Use a light coloured blanket for picnic, it is then easier to check for ticks.

[bruxeur]

"NHS is not equipped to deal with this"

[kreecherlivesupstairs]

I think a better way to put it would be that they don't often see it so don't consider it when making a diagnosis. I understand it's very difficult without seeing the red ring.
DD has been ticked several times, we lived in Switzerland and they are very common. Luckily I was able to remove them and she never suffered Lyme disease and has been vaccinated against tick bourn encephalitis.

[ConnorTraceptive]

Scalp check after every park visit really?

I think you have had an unfortunate experience metropolis and I hope you recover soon but Lyme disease is not that common hence the NHS perhaps not making it one of their first considerations.

[Lilymaid]

I've never experienced Lyme disease - nor any person I know, despite being a keen walker in moorland areas. But for what its worth, here is the leaflet from the Royal Parks as Lyme disease has been found there

[kreecherlivesupstairs]

My DD's ticks have been on her stomach twice and once at the meeting point of her thigh and foof. I doubt checking her scalp would have revealed them.
Just to be safe, I used to shower her when she came in from playing.
Vigilance is a good thing of course, but you can go OTT with it.

[metropolis]

Well, I am just making parents aware of this. I too was not aware of it till now. Lyme disease has until now been considered rare in the UK but numbers are increasing. The Borrelia bacteria have been isolated from insects (such as sand flies and fleas) so it is not only ticks that can transmit.

What I meant by the NHS not being equipped to deal with it is something only those who face it will understand. Many adults and children are misdiagnosed and develop chronic lyme as HPA guidelines that GPs follow do not prescribe long term antibiotics. There is great controversy over diagnosis, and treatment that a simple 3 week course of antibiotics will cure it. I am not intending to make people worry about it unnecessarily I am just bringing to peoples' attention.

For more info:

www.bada-uk.org/learn/FAQ/faqborreliosis.php

[Honneybunny]

i can see what you mean when you say "not equipped to deal with this". also literally, as there is only one laboratory in the UK where the test for lyme disease can be done.

have not got a good experience with NHS and lyme's either:
ds2 got bitten by a tick whilst on holiday in norway last year. 3 weeks after the bite the right half of his face went all droopy all of a sudden. he had been complaining of sore knees, and a sore tummy before. in hindsight he had developed the characteristic migrating red circle, but as it was not actually at the location of the tick bite we did not associate the two.

we took him to A&E fully suspecting that he had lyme's disease (symptoms, red ring, and several (norwegian) family members on holiday in the same area who had all contracted lyme's). doctors there did not want to test for lyme's initially, and wanted to put him on antivirals and steroids, as they suspected infection with a herpes virus. these would not have done a thing in curing ds.

only because i insisted on ds being tested for lyme's disease did they get him tested, reluctantly.

it was lyme's disease...

[metropolis]

hi hunneybunny,

i'm still new to lyme but have learnt how difficult testing for lyme is in the uk from my and other people's experiences. it can't be helped by the fact that the ELISA test misses 50% of cases when a more sensitive test could be done, and then the controversy of the lab in southampton. it is fortunate that a few lyme doctors will look at clinical diagnosis not based on blood results.

i am very sorry to hear about your son. it sounded like he had developed a rash, bells palsy and arthritic symptoms of lyme. you were absolutely right to trust your instinct and push for him to be tested for lyme. how is he getting on now? i hope he has made a full recovery.

[Merrylegs]

BIL also contracted this in the summer. He lives in Barcelona and was taken on a tour of all the hospitals so that the medical staff could see it and recognise the symptoms as it is rare there also. At least now if you contract Lymes in Barcelona you can be sure they will know what it is! (Horrible disease. He has been really ill with it).

[metropolis]

Ml - sorry to hear about your son. it is really good to hear that the staff took it seriously and also wanted to inform their colleagues of it, though it must have been terrible for him to be taken around so many hospitals for everyone to look at him, poor thing. i hope he is getting better?

[oricella]

Sorry you've been so ill - hope you are improving. And you're right that awareness of Lymes could be much better, but I think you're a bit harsh / over generalizing on the NHS. Where I am they dealt fabulously with suspected early symptoms of Lymes in my DD (even though no rash), she was tested straight away, found positive and treated.

Experience has a lot to do with that (we're in Lyme central so to speak) and it unfortunately it takes time for experience to grow into the system. Merrylegs - think it's fab that your brother was taken around the hospitals... And I am sure that the doctors who have treated you and honeybunny's DS will be much more alert to it in other cases...

Public health awareness is difficult - there are so many bugs out there that most people are unaware off until it hits them. And for diseases that are relatively rare it is difficult to justify spending scarce resources on education. For my money (having experience of both), I would prefer it to be spend on more education on meningitis for example...

[metropolis]

In my haste to start this thread, my first post wasn't written that well, so i am posting this link from where the info came from. some useful info on how to avoid ticks and the correct way of removing them.

www.lymediseaseaction.org.uk/ticks.htm

[metropolis]

oops, and the other link i gave didn't work so i'm adding it here:

www.bada-uk.org/learn/FAQ/faqborreliosis.php

[metropolis]

oricella - thanks. i think you're lucky that you've had a positive experience of nhs treatment mainly as you say in your area lyme is a bit more known. i am really glad your dd is well and they caught it early when it is easily cured. it is good to hear of other positive experiences like yours.

i don't feel that I am generalising, the lyme disease action group mention that medical education is highly variable. and the vast amount of families with less fortunate stories on lyme forums is very sad.

again i didn't intend to get into a political argument about the nhs. this is just about raising some awareness of lyme disease in the uk so that parents can be aware of it and what to look for, that's all.

[welshdeb]

I found 3 strange insect bites on my leg after gardening last autumn. I began to feel ill and run down about 3 weeks later and then noticed the ring around the bite. I thought lymes disease (you may think i watch too many medical dramas ) saw doc who treated me for it even though it's not thought to be common in our area. Had a blood test which was inconclusive. But I am certain I had it. I felt much better once I started the antibiotics and the red ring went away. I have since read up on it and its quite serious long term if not treated. So I totally agree with you.

[Honneybunny]

metropolis, thanks.
yes ds2 is now fine; the bells palsy has gone completely, which was such a relief! it is only when he is a bit run down (illnes or tiredness) that you can still see it a little, but only those who know him very well would, it's hardly noticable.

[looseleaf]

i'd love to bump this as completely agree with Metropolis and awareness makes a huge difference. Also whilst the NHS are amazing imo, until you are dealing with Lyme yourself you can have no idea that their guidelines on treatment seem to be wrong - dd was prescribed 1 week on Erythromycin which i discovered from Lyme disease Awareness in not a suitable antibiotic for it and instead she now has to have 3 months on double strength amoxicillin.
Lyme disease is on the increase and since dd has had it i've been told of many people who've had it eg a friend in Somerset got it this Aug too, and various people in Scotland like dd. The doctor we saw today sees 4 new cases a week.