Covering the first quarter of 2016 the number of new cases of Lyme Borreliosis has increased compared to the same period last year.
Not many people remember a tick bite and more women than men were infected.
Discussion on Caudwell Lyme charity (open) Facebook page:
Thanks, c_g.
Yes, thanks cg. And seeing your post reminded me I'd asked about a rack and then forgot. Sorry. Looking back it wasn't the one I need.
Still very little acknowledgement in the outdoor/farming industry that Lyme is a problem. Trouble is there seems no appetite (or mechanism?) to reduce the risk short of reducing sheep and deer numbers.
Trouble is there seems no appetite (or mechanism?) to reduce the risk short of reducing sheep and deer numbers
Eh?
The way to reduce risk in this case revolves around people taking responsibility for their own protection. I've been walking a lot recently, and the first response of a good number of people when it gets sunny is to go out in shorts and wander through the countryside...
I wonder if the sex differences in the figures are related to the amount of exposure caused by style of dress?
Thanks. Obviously the pragmatic solution when the doctor asks "do you remember being bitten by a tick" is just to say "Yes. Can I have my test now". As I have posted before back in 1990 our neighbours in New Jersey USA where well aware of Lyme and told us to take care with our daughters and ourselves. There needs to be mode education and publicity
Yes crikey, but there's also a responsibility on those who can control the disease vector (farmers) and the outdoor industry who promote the benefits but not the risks of being there.
Given the knee jerk reactions of late, I suspect if they were to do more promotion it'd be posters claiming Going Outside can kill you!
Yes crikey, but there's also a responsibility on those who can control the disease vector (farmers) and the outdoor industry who promote the benefits but not the risks of being there.
So how exactly do you propose farmers control something that's everywhere in the countryside, and can be carried by the huge number of wild deer?
There are people who've caught it in their garden, how are they supposed to control that?
A friend of mine's father caught it in France about fifteen years ago while working in his garden, is that his fault?
It took months for it even to be diagnosed back then.
Thanks, c_g.
You're welcome sog.
Yes, thanks cg. And seeing your post reminded me I'd asked about a rack and then forgot. Sorry. Looking back it wasn't the one I need.
No problem csb.
I wonder if the sex differences in the figures are related to the amount of exposure caused by style of dress?
Good point crikey but, seriously, wimminz in the countryside? It'll never catch on! I would say for the last 7 years possibly I wore full body cover when cycling as the RoW were always overgrown through lack of maintenance.
Take a look at this NHS info, scroll through to 'Who's at risk and where are ticks found?'
http://www.nhs.uk/Conditions/Lyme-disease/Pages/Introduction.aspx
Feeling that the wording used is inadequate and not convinced that highlighting those areas is actually helpful.
It took months for it even to be diagnosed back then.
CZ if you don't have an obvious rash then there's really no way of knowing how long. I was tested near the beginning of the year but now suspect that it's been in my system for many years.
The test is also pretty 'meh', with something like a 30% detection rate in the first 8 weeks.
I got diagnosed with all the symptoms following a bite in belgium, got put on the standard doxycycline regime for 2 weeks.....and all the symptoms left, even though the test said 'negative'.
Countzero, no one said I was solely farmers responsibility, but they have to take some of it. Didn't farmers reduce their dipping and that's part of the problem with its spread?
The 'wear trousers' thing is rubbish. I'm an absolute magnet for ticks and I get them whatever clothing I've worn, sometimes the little buggers embed themselves a day later having travelled with me. Wearing shorts lets you see them easier on your skin before they embed as well.
Men v women - I wonder what the bias is re actually going to the doctor, we men are terrible for MTFU, ie its nothing
Some years ago one of the observations about LD by interest groups was that more women seemed to be affected, and had worse symptoms. This still seems true on support groups. I've seen the suggestion that women have a more tolerant immune systems.
Additionally, for those with an interest, it seems that the plaques of Alzheimer's are associated with bacteria...
http://content.iospress.com/articles/journal-of-alzheimers-disease/jad160451
c_g - Do you know there's a private support group on FB?
Plus, re the comment on deer, it used to be believed that deer had resistance, so kind-of absorbed the infection. Shooting the deer would make it worse. Though they probably help the ticks to move around.
Self professed tick magnet who walks in shorts wants the entire UK sheep industry to do something about this issue?
Hmmm.
ISTR reading that the whatever in sheep dip was making farm people horrendously ill. It may have been organo-phosphate, or something like that. It would have to be long-lasting stuff as the ticks only feed for a few days.
Apologies for being evangelical, but:
[b]CHECK FOR TICKS!![/b]
I'm at the start of issues after a known tick bite. You are on your own.
Most GP's don't see a lot of tick bites and therefore don't know what to do.
The NHS tests give 40% to 50% FALSE negative results, and if you don't get a positive test result, you don't get treatment. You will be on your own, and after 3 months it's classed as chronic and much more difficult to treat.
The symptoms I have are life changing and I dread to think that I will have these the rest of my life.
I was given 'inadequate' antibiotics early after the bite, which 'abrogates' the antibody reaction, meaning I will probably never test positive and therefore I'm on my own with no help from NHS. I will be thrown into the fybromyalgia wastebasket.
So it's Dr google for me, and private treatment that I can't afford.
I can't blame anyone; I didn't check for ticks, but I was ignorant of the life changing consequences of a tick bite. Checking for ticks should be drummed into everyone until it is second nature for everyone.
[b]CHECK FOR TICKS ON YOU AND YOUR FAMILY [/b]
A couple of weeks ago a MP went public about a tick bite and the treatment and tests she was having, even she was being given the tests incorrectly. What chance have you got?
[b]CHECK FOR TICKS!![/b]
There is a lot of politics with tick borne infections - the NICE guidelines are under review - The NHS doesn't know how effective the current treatment guidelines are - they have never checked!! They don't record the number of 'Lyme' cases treated without testing either, i.e. those presenting with an obvious rash.
The US recommendations [which most of the rest of the world sort of follow] are also under review due to accusations of vested interests and bias on the panel producing the guidelines.
I thought there was a growing theory now that it can be spread without a tick bite? Do those figures seem to support that?
Crikey - you don't read other people's posts properly do you. I explained that I got ticks embedded regardless of clothing worn.
Evidently it can be passed from mother to baby during pregnancy, it is found in semen and vaginal fluid, it survives the storage temperatures and durations of blood stored for transfusions.
I'm wondering what proportion of tick bites even get noticed. My wife and I just spotted our first ticks a couple of weeks ago in our late 40s after many years of outdoors pursuits. Bloody small they were, just early stage. Used to spend days walking and climbing in the highlands, never a sign of them.
I would think a large reason for an increase is the detection rate improving, or rather more GPs being aware of it in the first place. From what I've often read GPs still tend to dismiss it, especially down south, as they just say there is no Lyme disease here or no ticks about. Then the patient is left with an undiagnosed condition for ages, years even which may or may not get treated properly.
Then individuals before may not realise what it is either. Get a bite and the tick has brushed or dropped off without noticing, might not get the classic bullseye rash or dismiss it and then end up suffering long term with symptoms that they might not associate with it. Better awareness now might be sending more to the GP.
Signs up telling people about the risks at countryside car parks wouldn't be a bad start, but not much use if doctors are dismissive of the syptoms.
I wonder what the comparable figures for Scotland might be. Plus how much awareness and testing is there of co-infections?
A 4yo female relative had a tick embedded we removed it. NHS direct said if there were flu symptoms within a month or so go to GP, otherwise forget it.
Is there anything she needs to do?
Outofbreath - not worry unduly would be the best advice, chances of infection are still slim, albeit if unlucky it's bad news.
Ahhh, it's all here: http://www.nhs.uk/Conditions/Lyme-disease/Pages/Introduction.aspx#diagnosis
Ta CSB.
OoB: The odds are overwhelming in her favour; ~95% of ticks don't carry Lyme.
The Public Health England document on Lyme, says about children:
"Facial palsy, headache and fever in tick season (April to October) has been shown to predict Lyme disease in children"
So just keep an eye out for anything like that rather than the vague "flu-like symptoms" guideline.
[...and the bulls-eye rash, which I believe can crop up weeks/months later - and not necessarily at the original bite site].
Thanks Whimbrel.
I had a moving rash two weeks after a tick bite. Really itchy.
Had a test but my mum made me go back and demand antibiotics rather than waiting for the result because I'd picked up the tick in a Lymes area, whilst visiting Germany. Dr was fine about this on NHS. I gather that earlier treatment is more effective and the test isn't particularly conclusive.
whimbrel - Member
it is found in semen and vaginal fluid
Thats bollox BTW, not found in breast milk either.
whimbrel - Member
it is found in semen and vaginal fluid
Thats bollox BTW, not found in breast milk either.
Source:
[url= https://www.lymedisease.org/lyme-sexual-transmission-2/ ]Lyme in semen and vaginal secretions[/url]
Obviously, I don't know one way or the other.
one study that detected the DNA of the bug in the fluids, not the actual bacteria. You can detect the DNA of the meat you eat in blood. The method to detect DNA is stupidly sensitive so only a tiny amount of DNA is needed.
[url= http://f1000research.com/articles/3-309/v3 ]Viable spirochetes found in genital cultures[/url]
"Conclusions: The culture of viable Borrelia spirochetes in genital secretions suggests that Lyme disease could be transmitted by intimate contact from person to person. Further studies are needed to evaluate this hypothesis."
"Genital cultures from the four controls were incubated for four weeks. None of the control cultures contained visible spirochetes, and the cultures were sent for PCR testing. Genital cultures from the 11 patients were incubated for four weeks and checked weekly. Motile spirochetes were observed in the culture fluid from all 11 patients after four weeks (Figure 1A)."
"Most genital cultures grew very well and contained abundant spirochetes...."
Either way, my message is still:
[b]BE CAREFUL OUT THERE: CHECK FOR TICKS!!!!![/b]
Yet another reason to keep your pants on...
Additionally, for those with an interest, it seems that the plaques of Alzheimer's are associated with bacteria...http://content.iospress.com/articles/journal-of-alzheimers-disease/jad160451
/p>c_g - Do you know there's a private support group on FB?
Thanks for that link sog, will attempt to read. Yes do know there's a group but I don't do Facebook.
whimbrel - very sorry to hear that, are you under a private doctor? Don't accept a diagnosis of fibromyalgia, that just means the NHS will ignore you. Read as much as you can, there's some very knowledgeable American doctors.
Read as much as you can, there's some very knowledgeable American doctors.
This. Its been a known issue in the US for decades. NHS / GPs are in denial
This. Its been a known issue in the US for decades. NHS / GPs are in denial
It's why I have a private American doctor. The NHS left me suicidal when multiple doctors failed to diagnose hypothyroidism, there's no way I'd trust them with Lyme. In fact they don't know and it's going to stay that way.
For whoever asked about Scotland...It is rare that a couple of DoE groups,ie 12-14 kids don't have at least 2/3 attached. I now dish out a recognition sheet with the other blurb.
From personal experience of suffering with as yet undiagnosed long term health issues, you get what you pay for with the NHS (i.e. very little).
They are good at patching you up if you've been involved with an accident but that's about it.
Private in the UK doesn't necessarily get you much better as you still typically have to go through your GP I believe. Difference though I guess is if you push for a referral you'll get it rather than GP always considering the cost, but if the GP doesn't know about Lyme disease because they're an NHS GP, then they could still be dismissive about it.
Duckman, that's excellent and something we need outdoor providers to do much more of.
Private in the UK doesn't necessarily get you much better as you still typically have to go through your GP I believe.
Not necessarily. I would say however that some private doctors are still subject to the same regulation as NHS doctors and, as I've found out, it can mean that they're no better due to said regulation.
I've not read the links etc but my knowledge of Lymes comes from one of my neighbours, a lady who has lived nearby for about 15 years.
She had all kinds of health issues and no one believed her, GP kept doing tests coming back negative, hospital same, put a real strain on her marriage and the kids, everyone thought she was an hypochondriacte (sp)
After private tests, think she went to the states, it was diagnosed and treated. She is loads better now, but the strain on her marriage is still apparent 🙁
Seems tests often can be false negative due to a number of factors that will hide it.
http://www.lymediseaseaction.org.uk/about-lyme/tests/
@simmy
Now that I'm in the "been bitten by a tick and 7 days later start feeling like I've been hit by a truck and been mainlining absinthe" world, stories like your neighbours seem to be tragically common, and it's what I'm trying to avoid.
My GP has been good, but readily admit they know nothing about Lyme or other tick borne infections, so has come to the end of the line of what they are able to do.
I'm looking for private Drs in UK who know about Lyme, but from what I can gather there aren't any.
[There are stories of a few being warned by GMC, and have stopped deviating from the inadequate NHS guidelines].
There seems to be one big name clinic in the UK who treat Lyme, but I can't afford their prices.
Anyone know of a private Dr who is sympathetic to tick borne infection patients?
From personal experience of suffering with as yet undiagnosed long term health issues, you get what you pay for with the NHS (i.e. very little).
devash - that sounds hard. As a starting point I'd suggest obtaining a copy of all of your medical records, you're legally entitled to this and details here:
http://www.nhs.uk/chq/Pages/1309.aspx?CategoryID=68&SubCategoryID=160
I'm kicking myself for not getting mine earlier but as they proved to be a bit of a revelation.
This website is good and may give you some ideas re your health issues:
http://www.drmyhill.co.uk/wiki/Main_Page
I'm looking for private Drs in UK who know about Lyme, but from what I can gather there aren't any.
[There are stories of a few being warned by GMC, and have stopped deviating from the inadequate NHS guidelines].
There seems to be one big name clinic in the UK who treat Lyme, but I can't afford their prices.
Anyone know of a private Dr who is sympathetic to tick borne infection patients?
whimbrel - get in touch, e-mail in my profile.
CG has offered assistance, but I think my neighbour goes somewhere in London for treatment and stays there for a few days.
The Doc who had treated me, and gave me a life back, was jumped on by the GMC for the heinous crime of actually making patients better. Yes, it took a lot of antibiotics. He monitored my condition, as I did subjectively.
I wish I'd kept a diary, as various odd, even unlikely, symptoms fell away during treatment: heartburn for example.
Simmy - YHM.
[i]Now that I'm in the "been bitten by a tick and 7 days later start feeling like I've been hit by a truck and been mainlining absinthe" world,[/i]
I sympathise. Though I wonder if everyone will experience this.
IME, it started small and built up gradually, in incremental steps. Maybe this varies with the scale of the original infection, and perhaps with a degree or not of an individual's resistance. The bacteria is said to reproduce slowly, and to spend much time hiding.
Disclaimer: I work in the NHSThe Doc who had treated me, and gave me a life back, was jumped on by the GMC for the heinous crime of actually making patients better. Yes, it took a lot of antibiotics. He monitored my condition, as I did subjectively.
I'm not dismissing either long-term/late/chronic Lyme as a disease state, or these doctors as clinicians but it's a real shame that they don't seem to publish - even some case series would be a start and might drive better acceptance of their methods.
(If they do publish, I'd be really (as in 'genuinely') interested in a linky or two)
s-p I suggest you try the LDA website...
http://www.lymediseaseaction.org.uk/
/p>
... I hope that's a start.
This is what doctors can be up against:
http://www.heraldscotland.com/news/13492970.display/
Also a Scottish GP called Dr Skinner who successfully treated thyroid patients was reported to the GMC by a GP. He faced countless Fitness to Practice hearings where patients wrote many letters of support crediting him with getting their health back. Dr Skinner had a fatal heart attack, guess who contributed to that.
And there's more. 😐
Thanks for info.
C_G: Will email you later today.
SOG:
In one way I am lucky as I saw the feeding tick and got symptoms a week or so later, so have been able to connect the two and have opportunity to try to do something.
I understand that people can go months/years with no symptoms, or mild symptoms that they overlook until it starts to get serious.
I have been in touch with [url= http://www.lymediseaseaction.org.uk/ ]LDA[/url] who are accredited by the 'Information Standard' for giving health information. They operate an email advice service for the public.
They advised that there can be the full range of symptom severity and timescales.
Every symptom I had/have could be explained individually by something else other than the tick bite, but I feel I had a lifetimes worth of aliments/pains in a day. Individual symptoms lasted for hours to days - it was/is weird.
At the moment I'm still on antibiotics [run out next week] and the symptoms are less severe and I only have two or three at a time, but the combination of pains still change on a day to day basis, and I will get shooting pains in one place for an hour, then joint pain somewhere else for 10 minutes.
This is a good reason to [b]CHECK FOR TICKS[/b], as you can monitor how you or your kids feel, and note if there are any patterns of even mild symptoms after a tick bite, and can mention this to your GP. If you don't know you have been bitten, a tick borne infection will probably not even be considered or tested for.
One for SP
US oncology Doc talk of his LD experience. Stick to the end for the heart transplant story, one of the most heart-warming things I've ever seen.
(edit) - Every day's a learning day, I can add Really Wierd dreams to the list of symptoms.
c_g - do you know Dr Myhill's story about the pig?
whimbrel - MemberViable spirochetes found in genital cultures
quote from one of the referees that didn't approve the article
"The design of these experiments to test the hypothesis that viable spirochetes exist in genital secretions is appropriate. However, the implementation of the experiments, presentation, and interpretation of data is questionable"
c_g - do you know Dr Myhill's story about the pig?
Yes sog, I really do despair!
I looked for that story earlier, but couldn't find it. It might be worth sharing, if you know where to look.
sog - have tried but no luck. Would strongly suspect that the regulator has insisted on its removal due to their stupidity! They don't like Dr M, to put it mildly.
I'm looking for private Drs in UK who know about Lyme, but from what I can gather there aren't any.
I vaguely remember reading about a centre that had opened (or was due to be opened) in the UK which would offer private testing and treatment for Lyme. I can't find the link though.
This website is good and may give you some ideas re your health issues:
Cheers, I'll have a read of that website tonight. I've had loads of tests done over the years (heart workup, blood tests, vitamin levels, thyroud, CT scans, MRI scans etc) and had started to think of exploring the possibility of Lyme having lived in a high risk area for a while where our dogs used to pick up two or three ticks every walk unless we had them on Frontline tick spray. I've been bitten a couple of times but never remember a rash though.
In the interests of balance, it would be an idea to look at the interactions of Dr Myhill and the GMC and the surrounding controversy.
Caveat Emptor.
Cheers, I'll have a read of that website tonight. I've had loads of tests done over the years (heart workup, blood tests, vitamin levels, thyroud, CT scans, MRI scans etc) and had started to think of exploring the possibility of Lyme having lived in a high risk area for a while where our dogs used to pick up two or three ticks every walk unless we had them on Frontline tick spray. I've been bitten a couple of times but never remember a rash though.
devash - you need to find out where in the range your blood results fall. My experience is that some of mine were so low that they weren't even in the range, were highlighted by the lab and ignored by the doctor. Sorry but you need to put the work in to find out what's going on.
Better safe than sorry.
Craghoppers 'Nosilife' is my choice of clobber for any outdoor excursions, especially at this time of year when the bracken' s at its peak.
I've bought their largest size shirts on the basis that any ticks will end up on the shirt sleeves but not live to make it past the Nosilfe wicking layer, underneath.
I'd even wear some some velcro'd trouser clips on both legs to keep the b£@@:;s out in conjunction with the Nosilife trousers in a longer leg length.
They also have convertible cargos so you can wear them as shorts when free of the 'junglies'
I haven't completely cornered the market, and as well as eBay and Amazon, the odd bargain can be found at;
Outdoor Look
Jackson Sports
Hawkshead Outdoors
Purple Turtle
Uttings
Though, going back to the op, the relatively higher incidence of Lymes among women could be due to the manner in which they relieve themselves.
Maybe the 'She-wee' would be a good idea?
@poah: OK, I retract my bllx statement. I was wrong.
I don't want to detract from what I assume was c_g's intent when starting the thread - to highlight the increase in cases as a PSA to everyone (as was the intent behind my contributions)
[b]KEEP CHECKING FOR TICKS[/b]
Also [url= https://www.amazon.co.uk/SAWYER-PREMIUM-CLOTHING-REPELLENT-Trigger/dp/B001ANQVYU ]Permethrin Spray[/url]
The despicable Sports Direct have some cheap prices on ladies Nosilife clothing.
We are fully Nosilife and permethrin and smidge kitted out now.
Horse/bolted I know 😳
rWe live in a wood. We have a lot of deer, and they leave a lot of ticks on the undergrowth (horrible ground elder). Vast amounts of glyphosate has cleared a lot of the undergrowth, but we get a lot of ticks still. The boy can't even play football without checking himself after retrieving the ball from a hedge.
Rather than buy a permethrin spray, just make you own solution and put clothes (and shoes) in - let them drip dry. You can make a bucket, and treat loads of clothes in one go.
[url= http://www.ebay.com/itm/Martins-Permethrin-10-Livestock-Dog-Kennel-Ticks-Fleas-8oz-Permetherin-10-/200930918739 ]Murcan Stuff[/url]
make sure you get the 10% rather than the 35%, which is in petrol basically.
The other idea is to make your own tick spray. Deet just hides the body from the insect/arachnid. It doesn't kill them. Something like Cedar oil will (and having seen it in action on a caught tick, it does).
So make a solution up - 50ml Witchhazel, 50ml water, then a few ml of cedar, citronella, tea tree, lavender, Oregano etc. Some of the oils mask your scent, others kill on contact. Smells a bit mind! Really does work though.
slowoldgit: Would be interested if you have info on possible private drs, etc. Contact details in profile
They're just horrible things. I was fell running in the Lakes on Saturday and at one point I had to beat my way through chest high bracken thinking it was probably tick city. Checked my self, showered, etc but today I've found one on my leg. Being a dentist I have dexterity and instruments available to remove it (and a microscope to view/photo it!) but yuck. Pretty sure it's just been crawling about my hairs for a couple of days and has only just latched on but I feel all itchy now. Still, it amused the staff 🙂
[img] 
[/img]
[url= https://www.flickr.com/photos/30189432@N00/27926121924/in/dateposted-public/ ]Ticked off![/url]
How on earth do you notice them if they are that small? I always check myself as often cycle through overgrown common land but had always assumed I'd see them by just looking in shower, think my hair would hide them.
Whimbrell - you have mail.
Paul - if they're amused at your problem, ask them to check you where the sun doesn't shine.
PS I've had a little one under my watch. It looked just like I'd stabbed myself on a sloe thorn. Except for where it was. You know the way that blackthorn pricks and scratches always look red and angry.
Just got home and found another one. I don't think I've ever found one before it bit me but I've got to know what the itchy spot feels like now when they do bite. I make sure I get them off ASAP.
You're right slowoldgit, it's no laughing matter. Also my wife is away so I could do with someone to check there......might get struck off though so probably not worth it.
Thanks for the links and video (slow) all very interesting. The Welsh doctors story is appalling, "misplaced letters" classic CYA / coverup stuff.
Education education education .. plus NHS / GMA pulling their fingers out.
That Dr Myhill is tough, but in the right way. She wrote somewhere about falling off her horse, the injury process and her recovery. She'd be no pushover.
I know of a couple of keepers who wear flea collars like bicycle clips. Reckon it works well for them.