After getting covered in ticks back in May and now having a stiff / sore neck I’m getting tested for Lymes disease. Anyone got any experience of Lymes disease?

Someone of this fair forum has it. I’m sure they will be along shortly.

Fingers crossed it’s not though…

If it helps put your mind at rest, I pick off about half a dozen highland ticks every weekend and haven’t picked up Lyme, I hope your symptoms are unrelated

A Friend has it, wasn’t diagnosed correctly for 8 or 9 years…..
They said it was ME

She is not in a good way

Fingers crossed for you.

My old collegue had it (well still has but I don’t really see them any more) .. for them at least it manifested as sore neck, back, dizzyness, nausea .. usually brought on my stress/upset/exhaustion.

I remember being told though that the tests are only 75% accurate and you need to have a few of them and average the results to conclude that there may then (or may not) be a strong chance you have it . .but not necessarily a definitive decision that you do .. or something like that 😕

Related question. Are some people more prone to picking up ticks than others?

Touch wood I have never had a tick despite most of my riding buddies regularly picking them up one guy in particualr has some most summer rides Put me near midges though and I will look like I have the measles in no time at all.

OP – Hope it is unrelated and not Lymes

Completely my own unschooled opinion but they may be a bit like other insect bites, i.e. midges. My wife gets loads I barely get any.

isn’t a certain strong concoction of BVits in you’re blood meant to help (she’s vegan, I’m not) .. i.e. drink loads of redbull/eat marmite 🙂

I had it a few years ago, no target rash but really saw joints and incredibly uncomfortable when trying to sleep. Doc originally tested me only 2 weeks after the tick bite and Lymes didn’t show up as there was not enough in my system. My symptoms got worse so went back to Doc’s who did another blood test this time it was positive. a week of antibiotics and I was right as rain. Apparently Southampton General hospital is well regarded in identifying Lymes.

Aye, southampton general is good for diagnosis/treatment of lymes, guess its to do with its proximity to the new forest which is has more than its fair share of lymes disease. My wife works in the forest, whilst she doesn’t have it herself a few of her colleagues have.

Some people do seem to attract them, i can walk though the forest in shorts and flip flops and in 20 years i’ve only found one tick and that wasn’t attached. My wife can walk through the same area and pick up 5 or 6.

guess its to do with its proximity to the new forest which is has more than its fair share of lymes disease

Great. That’s where I’m staying next week :(. Any tips to keep the ba5tards at bay?

I’ve got it and had it for a long time, I guess almost 10 years

it’s not pleasant

the Scottish ticks are quite well repelled by Smidge. I had suspected Lyme’s a few yrs ago – classic rash, fever about 3 days after getting the tick (which I removed with a tick twister within 12hrs of it landing on me). My GP is well up on the disease and got me straight onto 4 weeks of the horse dose antibiotics, whch did the job. The blood test is only 50% accurate.

Got a mate who had it, took a long time to get diagnosed. He was pretty rough with it as it got to his kidneys, he was off the suace for 3 months and event then he could only drink one beer a week for another 3 months. This was a big problem for him! Early diagnosis seems to be key.

@ Taz interesting as I to know people who have all reported multiple ticks in areas I walk/ride yet I have never had one, the dogs get them alot also.

Tangent – Friends moved to Sweden a couple/three years back and they suffered really badly with Mossie bites, the next year the bites didn’t last so long and then the 3rd year the bites only caused irritation for 24hrs or so.

I’ve lived near and ridden in the NF for 13 years without picking up a single tick (that I’ve noticed) – I do have a bloody good rub-down in the shower to remove any new arrivals but have never seen one on me

(got one in the lakes years ago; didn’t notice it til about 4 days later when I caught my nail on it while showering and tore it in half, leaving the front end embedded in my lower back 😯 cut out at A&E)

Diagnosis is still controversial – the Lyme unit at Southampton tested all forestry workers quite a few years ago. All were test-positive but none had ever had any symptoms of acute or chronic infection (except the boss, who’d obviously never set foot in the forest and tested -ve 😉 ). Wouldn’t surprise me if I tested +ve but I’m not symptomatic.

Most GPs know what to do for recent tick bite, esp if there’s a bullseye rash – and major neurological symptoms might well be picked up relatively consistently.
Not quite so easy to diagnose clinically when it’s later (fairly vague) symptoms, diagnosis is not straightformward and then treatment is again controversial for chronic Lyme (even its existence is hotly debated)

Don’t know about keeping them at bay, but these are good for getting the buggers out;
http://www.ebay.co.uk/itm/like/251140859454?lpid=83&device=c&adtype=pla&crdt=0&ff3=1&ff11=ICEP3.0.0&ff12=67&ff13=80&ff14=83&ff19=0

just ordered a set of tick twisters

lived in the NF 23 years and no tick, but no doubt i’ll walk to my car and get covered now.

Touch wood not had any ticks. Dog has had plenty. We’ve one of these. Better than hooks etc. http://www.amazon.co.uk/Tick-Lasso/dp/B004WMDZ5E

So what are the long term symptoms of Lyme Disease – apart from the rash of course? Can it be cured?

i seem to get far more than my riding buddies do, i also seem to smell better to midges too.

@spacemonkey – Avoid sitting on old stumps and logs, light coloured long sleeved tops and trousers if walking, vigilance, deet or smidge, and a tickcard available online and some outdoor shops + disinfectant if you become tick food. May and June seem to be the worst months IIRC

This is a bit old now…

Lyme Disease – everything you wanted to know (and stuff you wish you didn’t)

LD testing in the UK is moving from Soton to Porton Down, you know, the germ warfare place. In the US the CDC* has said recently that there’s ten times more LD about than detected, and the excrement is hitting the expelair about one of their top people making unfounded criticism of independent LD testing. In the UK there’s a row brewing about something the new head of LD testing minuted to the HSE, which has gone public under FOI or somesuch. My take would be – not going there,: not objective, only collecting data, victims risk an all in your head label.

Which is more than most of you want to know, except that the testing for Lyme Disease is currently getting considerable attention by those who feel let down by it, particularly in the US. Which could be you in a few months. And there may be a lot of it about.

I was planning to post on the subject once the first answers to some of the questions above were published.

*Centre for Disease Control, the US Gov’s agency for infection identification, information, treatment…

I ve had it spotted the tick quickly but didn’t get its head out. Went to my doc who did the honours, ,and gave me antibiotics .All over in a week. To avoid ticks wear long trousers preferably a tight woven material and a maybe a long sleeve top.

I’ve got one day left of a course of Doxycycline to treat suspected LD. Got a tick on the north Yorks moors and a week later my joints were clicking and sore, the bitten leg all the muscles were incredibly painful, stiff neck, night sweats etc.

After a week of treatment I felt much better and now feel pretty much normal. The hospital I visited knew almost nothing about Lyme and actually referred to Wikipedia for info which was a little disconcerting.

If you suspect you may have it then be prepared to inform and educate the doctor about it. I think in areas where it is less common there is a lack of awareness.

As kids growing up in deepest Argyll we’d be out all day playing on the hillsides in ferns and the heather whilst gathering ticks to such an extent that we’d end up back home at night and our parents would pick the ticks from our skin with their fingers or tweezers, thankfully i’ve never had Lymes disease or at least i’m not aware of ever having it.

I regularly collect ticks after a day out in the galloway hills after trudging through heather or trying to find trails and pretty much remove them on a daily basis from my mates 5 dogs when up at his farm (Galloway hillside), i dunno if there is such a thing as immunity from Lymes disease but i guess i’ve removed at least 30+ ticks from my skin this year and (touch wood) i thin i’m ok health wise.

Pull a tick or two off the family a week here in East Devon. I caught Lymes about 5 years ago, I was caught by a pack of them! Reckon around 12 tiny ones latched on to me and I did not find them all until one or two had infected me. Did not know it at the time but we were watching out and within a few weeks I had a heavy ‘flu’ like illness. Two weeks of a massive anti-biotic dose (which my me ill in a different way) seemed to kill it off. I was warned at the time that its always in one’s system and it can come back, not sure if this is true and I have not had anything similar since.
Advice is gain as much knowledge as you can and encourage your Doc to take it seriously.

For information…

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Thanks for your comments. I didn’t have the bullseye rash or any symptoms straigh after so the doctor wouldn’t test me then, so had to wait until now to get tested.

Regarding keeping the ticks away you can buy shirts, trousers and socks that or supposed to repel insects, which I’m go to have a shot at.

Taz – Member

Related question. Are some people more prone to picking up ticks than others?

I think so, as I’m always the person that ended up with 3 or 4 of them on a ride + gnat/mosquito etc bites whilst the people i ride with get nothing 😡 I had a Lyme’s scare last year when i had the bullseye rash come up on my leg, i went straight to the doctor and had 2 weeks of antibiotics which hopefully sorted it but at least it’ll be on my record now in case there’s any future problems.

I always wear leggings under my shorts now in the places where i know its likely I’ll pick up ticks.

My wife was diagnosed with Lymes, she has been ill for a about 5 years now.

Symptoms vary and it seems to be treated by the NHS as a ‘it’s not all these other things so must be this but we don’t really recognise this’ illness.

We went private and that has had a massive implication on our finances.

However, this year we have turned a corner and she is improving. So much so she managed a half day gardening last week with me and the FIL and she moved a number of barrows full of bricks that I didn’t think she could even if she wasn’t well.

We nearly never flew on our honeymoon as the wedding itself took everything she could muster in herself. I am constantly in awe of her drive to smash the shit out of this.

Anyway, she recently managed to persuade the NHS to refer her to the right people and unit. The private stuff we have done has resulted in a historical base of blood analysis that is staggering in what it shows, except the NHS doesn’t know what to do with it… we are now seeing an immunology consultant we hope…

Also, she has been having treatments for high levels of metals in her blood, her systems stopped processing properly and has caused discolouration to her skin and she has been in chronic pain for the last 4 years.

At the current time, her doctor has re-submitted her for more celiac testing after a suspected false result 2 years ago. She has developed symptoms that point towards this being an affliction now too.

It has been a bloody hard journey that we don’t know where will end, but she smashes on every day and sometimes it gets too much but that’s why i married her. She is nails and I wish i was the same. I had to change my job as i couldn’t handle the stress of her being ill and working the hours i was (there are other reasons too for that, not just that) and she still gets up every day and works in a secure hospital treating offenders with mental illnesses.

Anyway, i am drifting. Back to the OP. The NHS does shit all for Lymes, if you feel you are not being dealt with properly, fight hard. Real hard.

Best of luck.

Had the bullseye rash once followed by some nasty and pretty noticable symtoms. After a bit of research I realised what might be up so went to a private doctor who wrote me a prescription for broad spectrum antibiotics. All I did was tell him why I felt there was a risk; he didnt bother testing for lymes and just took my word on the bullseye rash. Took me about 4 months till I was properly feeling better although after the course was 90% back on track.

To the O.P… For the sake of 50 quid at a private doc its worth it if you think you might have been exposed to lymes. What harm can the antibiotics do versus lymes if its allowed to run? State heathcare could give you the run around for months. Private clinic will most likely hand over the solution immediately.

At the current time, her doctor has re-submitted her for more celiac testing after a suspected false result 2 years ago. She has developed symptoms that point towards this being an affliction now too.

Aren’t the symptoms pretty much the same. Maybe she has been celiac all along?

Maybe. I guess that is why we are seeing some re-tests coming up.

Some of the symptoms are there but not all of them. It comes back down to the ‘it doesn’t fit this so it must fit this’ that she has been coming up against. When more info and results come back it narrows things down a little further. It’s all just about getting the right tests.

True.

Best of luck.