In a blind panic about toddler Lyme's disease

[Magaloofah]

DS (2.5) developed bullseye rash just over a week ago (I think). I didn't think anything of it and then something switched on in my brain and I took him to dr on Monday.

Dr didn't seem too sure about it...TBH she didn't seem to know very much about Lymes. Said it might be ringworm. To keep an eye on it and come back if it didn't go down.

As I didn't know this dr. at all, I took DS back to see my normal dr. who I've known for years. This was yesterday. I showed him photos of the rash (since by this time it had faded quite a bit), and he examined what was left of the rash. He said it did look like a Lymes rash, that it definitely wasn't ringworm. And he prescribed 2 weeks of Zinnat (Cefuroxim).

I am trying to think of when DS might have been bitten. He was taken to Whipsnade zoo in early June this year and I know they have deer there. So it could well have been there. He rolled around in the grass.

I am now in total panic that I haven't caught this early enough. That maybe the rash didn't appear in the first stage of the illness and it's just now reappearing (Googling tells me rash can come and go).

I am beside myself with worry.

Are there instances of people who don't treat Lyme early and who don't go on to develop life-long debilitating symptoms?

Any recommendations on what steps I can or ought to take next? Thank you.

Don't worry, he's got penicillin and that should do the trick. I've had Lyme's several times, at one time I was bitten the day before going abroad for three weeks and developed that bulls-eye rash and it (the rash) just grew and grew before I had the chance to go and see a doctor (a French doctor at that) and explain that I needed penicillin. I recovered, I think... Anyway, if he developed the rash just a week ago it's in my experience not likely that he was bitten in June, but much more likely he's been bitten something like two weeks ago. It's not normal to be able to catch the bulls-eye rash until a week or so has passed (as it might be not infected and might subside by itself, without treatment, like a normal insect bite) so you probably spotted it as soon as was realistically possible, in my opinion. (I live in an area where there are lots of infected tick, usually check every day to see if I've been bitten "today", and keep a tweezer nearby in case I have to remove one.)

Youve done all you can, hes got the right treatment please dont keep googling, the info your getting isnt in context and you will read into it what you want to and not facts. You cant change anything now other than your reaction and attitude moving forward

I'm no expert. DH used to work in an area that was high risk for lymes disease and carried a card to present at A&E if he developed flu like symptoms, has he been unwell? You don't ned to be bitten as it can be passed on via contact with urine (rats urine was the main risk in DHs job) which is then ingested e.g. from not washing hands before eating. From the training DH had it sounded like it was very rare but that it was quick progressing on the one occasion where he was unwell and contacted 111 to check if he should go to A&E he was told that as he was starting to feel better on his own (he didn't think to ring until day 2 of being unwell) it wasn't likely to be lymes. Did the Dr do a blood test? I think thats how DH was told it could be checked.

Hopefully someone with more knowledge will come along soon.

I would contact Lyme Disease Action for help and advice.
www.lymediseaseaction.org.uk/
In adults a course of antibiotics is usually given for at least a month after a tick bite. Doxycycline is usually the one used.
I know it is different with children but don't know anymore than that so best to get their advice as a too short course of antibiotics, the wrong antibiotic or the wrong dose will not cure it and it can then lead on to chronic Lyme Disease which is very, very difficult to cure. I have it myself.
If you get the correct treatment then at the rash stage it can be cured with no long term effects.

Thanks all.
I didn't remember about Whipsnade until I left the dr's.... so dr assumed infection happened in the last few weeks. And said it was therefore too early to do a blood test.

I can't recall noticing that DS has been unwell in the last few months. But then his language is pretty basic so I wouldn't necessarily expect to realise he was unwell. But he hasn't seemed unwell that I recall. And I don't think I've had reason to take his temperature.

Yes, SIB09, you're absolutely right that I need to control my reaction to this. I was even contemplating posting this in Mental Health topic, as I recognise that my reaction is not helping anyone.

I have OCD (which is more or less 90% of the time controlled by ADs), so I definitely have a tendency to catastrophise. But this has sent me into a spiral of worry the likes of which I haven't experienced in over 3 years.

I just need to feel that I'm doing everything in my power to try and help as far as I can (which I know is probably not much). I already feel terribly guilty for not taking him out of nursery last Monday to see my usual dr (rather than the first dr I saw), for not realising about the rash straight away, for letting him go to Whipsnade without reading up about the deer and therefore making sure precautions were taken etc etc

Thanks Smiling. I'm so sorry to hear you have it yourself.

I think you can't give Doxycycline to children under 9 or 10 or something, and DS is intolerant of penicillin. Hence why dr chose this AB. But yes, it does sound like he's been given rather a short course

I think you were lucky to find a doctor who actually knows anything about it Magaloofah as so many don't. That said they may not be too sure about what dose of antibiotics to give or for how long.
LDA do training for doctors but so few of them take advantage of it.
I got mine in Africa where it is seen as a very minor illness and Lyme Disease was very little known about here. First time a short course of doxycycline 'cured' it. Second time it didn't.

Thankfully my usual doctor is hugely thorough (I love him so). So whilst I don't think he did know much about it, he is so good that he was looking at his books whilst I was in the consultation. (As a lawyer, I appreciate we can't know about every single field of law...same must go for doctors; the important thing is to recognise our deficiencies and accept we may still have stuff to learn!)

Do you mind my asking Smiling how long you have had symptoms of chronic Lyme and whether it's continuous?

My DH was poorly for about a year with ongoing flu like symptoms which the GP kept dismissing. DH does a lot of outdoorsy stuff so did ask for lymes test but GP wouldn't do it as he couldn't say for sure if he'd been bitten. It was only after he finally saw a decent locum that gave him a lymes test and low and behold it was positive. He had 4 weeks of antibiotics and made a full recovery. Please try not to google too much about long term/chronic lymes as there are lots of scare stories out there and all sorts of crazy "treatments" It sounds like they've picked up on your dc's condition fairly quickly and I'm sure he'll make a full recovery

You don't ned to be bitten as it can be passed on via contact with urine (rats urine was the main risk in DHs job) which is then ingested e.g. from not washing hands before eating

I think you are confusing Lyme's disease (tick bites) with Weil's disease (rat piss)

Oh and I echo getting advice from the Lyme disease action group. Great source of info.

I'm not a medic but I have never heard or lyme disease being transmitted by rats Bluebannana Weils disease is transmitted by rats urine.

I don't think your reaction is over the top. You are acting like a kind parent. Don't stress about your worrying...perfectly normal!

Ah sorry have got confused.

Some people do become cured, or at least go into remission, from chronic LD Magaloofah but I know many, many others who don't.
Some of the treatments recommended online are weird and others dangerous.
A short course of antibiotics can put it into remission but it may reoccur many years later. However the correct course of antibiotics given soon after the bite will cure it.
Unfortunately there are very, very few doctors, private or NHS, in the UK who know very much about treating Lyme in either its acute or chronic stages but there is information available from organisations like LDA on how to treat acute (short term) LD.
Those who do receive effective treatment for chronic Lyme, in my experience, travel to the US and have to be able to pay for very expensive treatment.
I will pm you.

If it's reassuring at all, I've just checked treatment guidelines here in Germany (where people in general and doctors in particular tend to be quite clued up about Lyme) and the recommended course of ABs after bullseye rash is 2 weeks. It mentions the type your ds has been prescribed as well.

I have to say I'm still unsure from what you've said that he does have Lyme. At 2.5 you would be dressing and undressing him and bathing him - you would simply have noticed any tick on him - I understand they have to be attached for a while to do any damage. Surely much more likely that the rash was ringworm or pityriasis rosea?

And agree the bite would have to have been in last couple of week

No...they can hide well and drop off!

Yes, am worried either he brushed it off, or I just didn't notice (as wouldn't have been on lookout for it). Or it came off in bath or something. And because it wasn't removed properly, it didn't matter that it wasn't on his skin for at least 24 hrs or whatever.

My chief panic at the moment is that he got bitten in early June and I didn't notice rash or he didn't have one, and this latest rash is recurrence of a rash (or, if he didn't have one at the time, is the first rash) relating to that outing in June. And that now its too late to try and treat fully with ABs.

I'm now wondering if I should get a blood test done next week (on basis that if it does relate to an outing in early June, then it would probably show up in blood test now)?

Thanks all for your responses by the way.

You would have noticed a rash - just like you noticed it this time

I've had Lyme disease. I saw the tick and brushed it off straight away, no mouthparts left in. Rash appeared about 2-3 weeks later. I hadn't realised a the time that it was a tick. Only made the connection when the rash appeared. I had no problem getting it diagnosed. I was on holiday (in the U.K.) when the rash came up and spoke to my GP, a nurse and doctor at minor illness centre and a second GP. All very aware of Lyme disease and characteristic features to look out for. I was treated with 2 weeks of doxycycline. The rash started improving within 48-72 hours of starting treatment and I have had no long term complications whatsoever. Try not to panic. But if the rash doesn't start clearing up quickly now take him back to the doctor.

Not sure I would've noticed the rash...he does have eczema flare ups now and again and it's possible I would've just dismissed it as that ... I'm not sure I was really aware of bullseye rash and possible meanings of that rash. Or it didn't 'click' in my brain...just like it took a few days to click this time.

I think maybe what made me realise about the significance of a bullseye rash in general is that a few weeks ago I had unexplained high fever for 48 hours and achiness etc and my mum asked if I thought I might have Lymes (she lives in France where there has been a massive increase in Lymes lately). So I looked up the symptoms of Lyme.

AIUI - and I am not a doctor - a recurrence of the rash at this late a stage would probably be tied in with other symptoms, i.e. the disease will have moved on to the next stage. So if your ds is well in himself I think it's unlikely.

Don't assume he definitely got bitten at the zoo simply because there are deer there - we've had a few ticks between us in the family and every time we've only been in the usual garden/parks. (And I imagine he didn't walk through the deer enclosure?).