[Closed] Lyme disease: latest official infection stats for England

Please take this in the spirit it's intended C_G.

You clearly have a strong (personal and vested) 'interest' in Lyme disease. Why not start a single thread where you can post these links? I imagine a few people are interested, but by starting a new thread every time I suspect fewer of those people actually read them. Just a thought.

[quote=njee20 ]Please take this in the spirit it's intended C_G.
You clearly have a strong (personal and vested) 'interest' in Lyme disease. Why not start a single thread where you can post these links? I imagine a few people are interested, but by starting a new thread every time I suspect fewer of those people actually read them. Just a thought.

That.

Personally I prefer one big thread but that is not the stw way, its much more common to post numerous threads

Interesting stuff. Given how little awareness/enthusiasm/support of lyme there is in the UK I suspect that's the tip of the iceberg.

Personally I prefer one big thread but that is not the stw way

It's not, but it's easy enough when it's one person effectively resurrecting a thread every time. Easy enough for CG to bookmark "her" thread and add new content there. That way all the Lyme's content is in one place, not disparate threads which contain one or two useful posts and a lot of bickering about whether Lyme's is real.

Since I'm one of the people who haven't read all the previous threads, can you conform for me if is know that the number of cases increasing due to increased reporting/increased testing, or if it's an actual increase? ie: are we getting better at recognising and testing for it, or is it actually on the up (as well?)?

Do you have links to older reports or stats, I'm curious to see if the increase is markedly in any one particular area or not?

I have no bias either way, I'm just curious as it didn't seem clear from the report.

I suspect there's a bit of both, I seem to recall there's a link between climate change and the disease spreading.

Awareness in GPs is frankly poor, my old GP practice who've I've sadly moved away from was excellent and was very quick to treat a bullseye rash around a bite I had a few years ago as potential Lyme. I had another unknown bite a couple of weeks ago which led to cellulitis but also had a weird not quite round semi-bullseye rash, the GP I saw was open to learning about my previous Lyme bullseye treatment but literally had to ask me what treatment was required, and without a word of a lie went to google it with her colleagues. She was very keen to send refer me to serology given my extensive history of a bajillion ticks and some other medical issues though. She said Lyme has only recently come onto their radar and was very badly understood in the UK.

People not believing it is real is just internet warrior/troll territory.

Actually getting a clear positive/negative diagnosis is to my understanding currently very difficult to achieve.

njee - thank you and understood. I guess what I really wanted was to have stats in one place and general info in another in that it would be easier for any folk to refer to. These latest stats show quite an increase so wanted to highlight that.

amedias - not a simple question to answer mainly due to testing not as good as it needs to be although some are in the development stage as well as a new one launched this month. I believe the accuracy at best is around 50% of most of them.

As I understand it a GP makes a request and the sample is sent to RIPL Porton Down. If however that sample is negative then the NHS consider that the person doesn't have Lyme disease. End of. No further testing done. Many people, myself included, have our samples sent to other countries for testing.

Will dig out some old stats for you and post the links.

Will dig out some old stats for you and post the links.

Ta, I think it might be hard to infer much at this stage, if as you say it relies on a GP being aware enough of the disease, and then sending a sample for testing (of which they are potentially not that accurate and new methods being introduced) it's hard to know whats going on, we may have to wait some time before any meaningful stats come out of it 🙁

for example
if last year 100 cases were reported and this year its 200 is that because:

1> Lyme disease has increased by 100%
2> Dr's have requested more tests
-- 2.A > because they are more aware of the disease*/better at recognising it
-- 2.B > because more potential cases presented
-- -- 2.B.1 > becasue there [i]were [/i]more cases
-- -- 2.B.2 > becasue the public are more aware of the disease
3> The existing test methods have been refined/changed and become better at identifying the disease
4> New test methods which are intrinsically better have been introduced
5> Statistical variations (unlikely as 100% is a big swing but not unheard of)
6> Localised geographical location(s) have seen a marked increase
7> Combinations of the above

I have certainly noticed a bit of an increase in literature over the last year or so, and have heard a few more warnings popping up, so hopefully it is becoming more widely known about. I know down here (in the SW) there have been a few posters up at local visitors centres and stuff.

* I would think that this point would be expected to produce an increase, and if it is being better communicated and awareness increasing then a corresponding increase in cases identified would be expected.

I guess a key bit of data missing is how many samples were sent in for testing over the two periods (and by area?)

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/523442/hpr1716_zoos2.pdf

Investigating Lyme disease on the South Downs:

https://microbepost.org/2017/04/06/investigating-lyme-disease-on-the-south-downs/

Tick survey carried out in Salisbury, Wiltshire in January 2017:

http://www.visavissymposiums.org/ticks-in-uk-ticks-found-to-carry-borrelia-s-l-and-borrelia-miyamotoi-in-peri-urban-and-urban-areas/

Edit: not everyone has the bull's eye (erythema migrans) rash. I didn't but now realise that I've had this for quite a few years.

[i]Why not start a single thread where you can post these links?[/i]

As a fellow Lymie I have an interest. I'd rather have new threads when new things are reported. Also I believe that it's important to make others aware of the risks. Having them churn through a long discussion, with the usual suspects turning up to disagree, will not achieve this.

I believe we shan't see proper attention paid to the disease, its detection and treatment, until everyone knows someone with it, and has seen the effects on them.

I am interested, my nephew had lyme from woods near Amersham (just outside M25) his doc intially laughed off suggestions it was lyme until the mum paid for private diagnosis.

Who cares if she starts new threads, if you don't like them, don't read them, is it that hard?

Who cares if she starts new threads, if you don't like them, don't read them, is it that hard?

unfortunately this side of the forum is a bit of an old boys club

I believe we shan't see proper attention paid to the disease, its detection and treatment, until everyone knows someone with it, and has seen the effects on them.

As much as I love the NHS, I think it will be when the current generation of younger doctors have reached the management stage of their careers that it will become fully recognised and understanding will percolate through the health service. If Ceremy Junt does privatise it (boo) then doctors will be delighted to take lots of money off you to test you and treat you, in the USA style.

Are there any figures for Scotland or European countries for comparison?

Ah bigjim, beware that in the US the insurance companies have dominated LD treatment, specifying only short courses of ABs. I don't know if they still do.

snaps - Raigmore Hospital, Inverness, does the LD testing for Scotland, I believe, They may publish stats.

Ah bigjim, beware that in the US the insurance companies have dominated LD treatment, specifying only short courses of ABs. I don't know if they still do.

Go on. Produce evidence that long courses of ABs actually have any clinical effect. I dare you.

Ah bigjim, beware that in the US the insurance companies have dominated LD treatment, specifying only short courses of ABs. I don't know if they still do.

I guess I was meaning more the general approach of private health care where as long as you can pay for it you can get the treatment, and also the USA is far more lyme aware than the UK, as are some European countries. I would imagine health insurance companies would not like treating diseases like Lyme though, although these long antibiotic courses seem like hell anyway.

Anyway, looks like this thread is about to go down the pan...

By a Doc...

http://www.bmj.com/content/344/bmj.e3250/rr/591128

I feel the attraction of doing some hoovering.

I'm never going near the place 😯

http://www.bbc.co.uk/news/uk-scotland-highlands-islands-38103489

Thanks for posting, OP.

Who cares if she starts new threads, if you don't like them, don't read them, is it that hard?

unfortunately this side of the forum is a bit of an old boys club

:roll|:

I suggested it so all the information was in one place, not spread through thousands of pages of dross. I'm not interested, there are lots of threads I'm not interested in, it was just a thought on how to bring all the interested parties together.

Amedias -

https://wwwnc.cdc.gov/eid/article/6/4/00-0416_article

LD stats, England & Wales, '86-98

http://www.nhs.uk/conditions/Lyme-disease/Pages/Introduction.aspx

Diagnosing Lyme disease is often difficult as many of the symptoms are similar to other conditions. A spreading rash some days after a known tick bite should be treated with appropriate antibiotics without waiting for the results of a blood test.
Blood tests can be carried out to confirm the diagnosis after a few weeks, but these can be negative in the early stages of the infection. You may need to be re-tested if Lyme disease is still suspected after a negative test result.
In the UK, two types of blood test are used to ensure Lyme disease is diagnosed accurately. This is because a single blood test can sometimes produce a positive result even when a person doesn't have the infection.

Can't speak for all individual GPs but the NHS seems clued up and doesn't appear to send you on your way after a single test.

It's the supposed Chronic Lyme they have issues with.

amedias

Its certainly my experience of walking in Sotland that ticks are far more prevalent than they used to be. Its not a long stretch to assume this means more tick borne diseases

Another 'Lymie' here, keen to see any info on it, so thank you.

[img] [/img]

[b]amedias[/b] the NHS claim areas known to have a high of population include:

Exmoor
the New Forest and other rural areas of Hampshire
the South Downs
parts of Wiltshire and Berkshire
parts of Surrey and West Sussex
Thetford Forest in Norfolk
the Lake District
the North York Moors
the Scottish Highlands

Where I think a trick is being missed is that as far as I know there is no records being kept of people like myself that have been diagnosed privately. These figures would surely be helpful especially as the NICE Guidelines on Lyme disease won't be published until April 2018.

There is a RCGP e-learning course on Lyme disease (developed by the charity Lyme Disease Action) but less than 3% of GPs have undertaken this. In fact on my 'to do' list for today is writing to the Practice Manager of my local surgery to request that he displays posters and other info that I'll enclose. May is Lyme Awareness Month and the charity LymeDiseaseUK have been doing sterling work in raising awareness.

[b]johnnystorm[/b] I believe there is disagreement where the NHS state that around 1 in 3 people don't develop the rash. Please see my response to amedias. It is unrealistic to expect GPs to be able to suspect Lyme disease when so many haven't undertaken any training and the NICE guidelines are in development.

NHS website:

Blood tests can be carried out to confirm the diagnosis after a few weeks, but these can be negative in the early stages of the infection. You may need to be re-tested if Lyme disease is still suspected after a negative test result.

My response:

There is a RCGP e-learning course on Lyme disease (developed by the charity Lyme Disease Action) but less than 3% of GPs have undertaken this.

The 'Lyme literate' doctors recognise Chronic Lyme, I personally feel that the NHS is wanting to <cynical mode> cover its back.

As a fellow Lymie I have an interest. I'd rather have new threads when new things are reported. Also I believe that it's important to make others aware of the risks. Having them churn through a long discussion, with the usual suspects turning up to disagree, will not achieve this.

Seconded.

[b]Lionheart[/b] sorry to hear that, I'm trying to post up links that us outdoor folk may find useful.

http://www.nhs.uk/conditions/Lyme-disease/Pages/Introduction.aspx

UK Lyme disease charities:

http://lymediseaseuk.com/
http://www.lymediseaseaction.org.uk/
https://caudwelllyme.com/

Safety advice for the UK countryside:

http://enjoythecountryside.com/

I do wonder if the Forces, the Army and Marines in particular, have their own awareness of LD and the relative risks, eg in Dartmoor, Salisbury Plain, S Dorset and Brecon.

For Tom, the first three of twenty-nine...

N. A. Shadick, C. B. Phillips, E. L. Logigian et al., “The long-term clinical outcomes of Lyme disease. A population-based retrospective cohort study,” Annals of Internal Medicine, vol. 121, no. 8, pp. 560–567, 1994. View at Google Scholar
E. S. Asch, D. I. Bujak, M. Weiss, M. G. E. Peterson, and A. Weinstein, “Lyme disease: an infectious and postinfectious syndrome,” Journal of Rheumatology, vol. 21, no. 3, pp. 454–461, 1994. View at Google Scholar
M. S. Klempner, L. T. Hu, J. Evans et al., “Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease,” New England Journal of Medicine, vol. 345, no. 2, pp. 85–92, 2001. View at Publisher · View at Google Scholar

... I haven't read any of them. My brain can't cope with the technicalities. Sorry it's only a cut and paste. The whole set are here -

https://www.hindawi.com/journals/ipid/2010/876450/

...........................................................

I have to admit that I'm biased, having been diagnosed and treated for LD quite outside the NHS, with the loss of about ten years of my career. Some of my motivation is hoping that others will avoid this.

I asked the Moderators to take a look at this thread due to it taking a turn for the worse. Thank you Moderators for removing the inappropriate posts.

I'm never going near the place

http://www.bbc.co.uk/news/uk-scotland-highlands-islands-38103489

Interesting! There's been a lot about lyme in the local press around Inverness, there's a lot of farmers who have ignored symptoms for years and are now very unwell. Removing ticks was just a normal post-ride activity for me in my teenage years, would often come back with half a dozen of the tiny nymph ones on my legs, there's so many up there. Just pottering around my parents garden for a day usually results in a tick or two.

Lots of good info here:
https://www.quackwatch.org/01QuackeryRelatedTopics/lyme.html

The Bottom Line

Lyme disease, when diagnosed early, is readily treatable with oral antibiotics.

Positive antibody tests, by themselves, do not provide a sufficient basis for diagnosing Lyme disease. The diagnosis should be based on the overall clinical picture, including medical history and physical findings.

Negative antibody testing after the first few weeks strongly suggests that the patient does not have Lyme disease.

Many patients with chronic, nonspecific symptoms (such as headaches, fatigue, muscle aches, mental confusion, or sleep disturbances) mistakenly believe they have Lyme disease.

Intravenous antibiotic therapy, when given appropriately, should not last more than a month. It should not be given unless oral antibiotic therapy has failed and persistent active infection has been demonstrated by culture, biopsy, or other bacteriologic technique.

Malariotherapy, intracellular hyperthermia therapy, hyperbaric oxygen therapy, colloidal silver, dietary supplements, and herbs are not appropriate measures for treating Lyme disease.
Doctors who recommend them should be avoided.

"Chronic Lyme disease" remains the favored term of support groups and patient advocates, but has no basis in medical fact or practice [7].

https://www.ncbi.nlm.nih.gov/pubmed/12194894?dopt=Abstract

Lyme disease is a relatively well-described infectious disease with multisystem manifestations. Because of confusion over conflicting reports, anxiety related to vulnerability to disease, and sensationalized and inaccurate lay media coverage, a new syndrome, "chronic Lyme disease," has become established. Chronic Lyme disease is the most recent in a continuing series of "medically unexplained symptoms" syndromes. These syndromes, such as fibromyalgia, chronic fatigue syndrome, and multiple chemical sensitivity, meet the need for a societally and morally acceptable explanation for ill-defined symptoms in the absence of objective physical and laboratory findings. We describe factors involved in the psychopathogenesis of chronic Lyme disease and focus on the confusion and insecurity these patients feel, which gives rise to an inability to adequately formulate and articulate their health concerns and to deal adequately with their medical needs, a state of disorganization termed aporia.

😆

Amedias - Caroline Millins, U Glasgow, writes on changing LD risk -

EPRINTS.GLA.AC.UK "http://eprints.gla.ac.uk/138107/1/138107.pdf"

Thanks for all the links, working my way through them, I doubt i'll get a straight answer but I'll at least be better informed...

Quackwatch? Seriously?

As for that link, although I've only skimmed through the authors were clearly starting their research from a position of disbelief. Of course it may well be that they are keen to push MUS (Medically Unexplained Symptoms) which has hit the UK alongside PPS (Persistent physical symptoms) whereby patients are given a psyche label and then forgotton about.

I will have a proper read though, it may take some time cos my fluffy little head can't cope with too many words in one go.

May I ask you this though? Here we are on a mountain bike forum discussing Lyme disease. I've been riding for 20 years but 16 months ago I had to stop cos, to be blunt, I'm a bit of a mess. Don't you think I'd be riding if I was physically capable of doing so?

I'm no scientist but according to my sister (an anaesthetist so not exactly the right field but still a medically qualified Dr) when she brought the boy into the docs he treated her like a quack. He didn't know she was a Doc and she didn't say until she had paid for the private diagnosis. It seems the science around this is still at work, and given that in the UK at least GPs don't want to spend money unless they have to then many people will go untested and we may never know the true extent of the disease.

For those who haven't seen this before, it's a US doctors experience with LD. If you stick to the end there's the warmest and most human story I've seen on the internet...

And, like c_g, if I don't have LD then I'd like to know what's messed me about so badly.

I've had both reactions with my boy - presented with classic bullseye rash, which luckily places like STW had educated me on.

Locum who saw him explained the test was likely to be negative, bu the follow up a couple of weeks later might be more conclusive - prescribed immediate course of oral antibiotics, and the flu like symptoms started to subside over the next few days.

Represented for the second test - seen by a partner - very dismissive, said it couldn't have been Lyme, waste of money giving him the antibiotics.

Second test returns positive. Find this out from a direct call to my mobile from the senior partner, who wanted a complete run down on what had been done and gave me a good overview of what to expect next, what to watch for and asked I contact him personally if I had any doubts at all about symptoms over the next year.

To be honest, I think him being 9 helped a lot to get immediate action, as well as being with a rural surgery bang in the middle of Tick Central.

Quackwatch? Seriously?

It's not worth wasting energy on, hence my laughing face thing. The other link is laughably old as well.

Represented for the second test - seen by a partner - very dismissive, said it couldn't have been Lyme, waste of money giving him the antibiotics.

I think this is a big part of the problem, the diagnosis/treatment you will receive depends massively on who you happen to see when you go in. Add in the further uncertainties regarding whether people actually get a bullseye in the first place and then the uncertainty of test results, mix with an underresourced health service and ...

[b]2nd quarter infection rates[/b]

Hot off the press re new Lyme test:

https://caudwelllyme.com/2017/08/21/a-new-lyme-disease-urine-test-now-available-in-europe/

And Matt Dawson caught LD in a London Park...

http://www.bbc.co.uk/news/health-40973709

Thank you OP for all the work you've put into this.

PJM1974 - not just me as thanks must also go to those who've made contributions and provided links. Your comment is much appreciated though, thank you. 😀

Along the same lines. I recently contacted my local 'Rights of Way' team in Dorset to ask why they were performing unnecessary verge cutting and neglecting bridleways. When I raised the issue of Lyme's disease and ticks from cycling through long overgrowth I was told. "There is no evidence that cycling through long vegetation increases the chances of picking a tick up"

I was rather surprised by that statement, but then again my Local RoW team here in Dorset are rubbish at taking cyclist into account.

"There is no evidence that cycling through long vegetation increases the chances of picking a tick up"

"There is no evidence that cycling through long vegetation increases the chances of picking a tick up"

"There is no evidence that it is raining" says man sat indoors in a windowless room with earplugs in.

FFS.

Ticks climb to the top of the stem, wait for contact and hold on; they are much more likely to make contact with a cyclist if the vegetation is long enough and close to the track.

The issue with RoW is that as the majority of them most likely do not cycle they don't get it. The strategy officer for Dorset told me that it was basically my own fault as I don't wear long trousers and long sleeves when cycling.

I wanted to ask her whether she had tried riding a bike in the summer fully clothed, but I'll be honest and say that by that point I realised I was fighting a losing battle.

Just thought I'd update this with regard to the independent enquiry commissioned by the Government. CaudwellLyme have helpfully condensed which means that folk like me who struggle with huge chunks of text now stand a chance of comprehending.

https://caudwelllyme.com/2018/01/08/uk-governments-independent-reviews-into-lyme-disease/

CaudwellLyme have also commented on the research recommendations made in this enquiry and compares them with those made in the draft NICE Lyme guidelines:

https://caudwelllyme.com/2018/01/09/research-recommendations/

CG, those links you posted as evidence a while back....

However, in these two trials, treatment with intravenous and oral antibiotics for 90 days did not improve symptoms more than placebo.

did you even read them? Don't post stuff based on what you've read on some hippy forums and then preface your post by claiming ignorance as a defence.

4th quarter 2017 stats and the upward trend continues.  Pages 2,4 and 5 for easy reference.

Do you need another gizmo in your life?  This looks to be worth having.

A Swiss multi-function folding knife featuring a tick remover tool with magnifying glass.

https://www.swiza.com/swiza-tick-tool-a-world-first-in-a-swiss-knife/

https://www.thebushcraftstore.co.uk/swiza-tt05-multi-function-folding-knife---built-in-tick-tool-42142-p.asp

Or one with fewer features for a tenner less:

https://www.thebushcraftstore.co.uk/swiza-tt03-multi-function-folding-knife---built-in-tick-tool-42134-p.asp

Shame it's still 30 quid, the all in one aspect is nice but it's a premium over a Victorinox. 🙁

Do people generally find them before they've had a feed? We've removed three from the dog last month but all were big enough to have been there 24 hrs or so. Not found anymore since we've been avoiding one particular field with deep grass.

So far, we've been okay.

Sometimes if we are on the ball with daily checks. We have missed them before and then they are spotted when they have fed and are much bigger. Either way you can catch lymes anyway. I had early symptoms lymes from a few little 'uns and my son had early symptom lymes from a big well-fed ****er.  Local drs are good though and got us both onto antibiotics straight away. This was last year and they commented that folk were turning up everyday with lyme symptoms! Bonkers. We're in the South Downs fwiw. We use Smidge on a regular basis now.

Years ago were hill sheep not rounded up and dipped once a year to control parasites? Is this still done? If not then sheep ticks may have therefore increased.

Tick removers to be handed out to residents and tourists in Scotland

More here:

https://www.pressandjournal.co.uk/fp/news/aberdeen/1656824/lyme-disease/

Interesting and a timely reminder with spring just around the corner.
Having just said that, winter only reduces ticks mobility, it doesn't stop their activity altogether and I've seen a couple of ticks on animals in the last month.
I've been briefing for years to the ultra running and MTB community up here that this is a real threat to your sport; each year we identify a handful of likely cases and on a simple 'likelihood' basis have had no difficulty in securing A-B treatment from Scottish GPs.
So far, I've not heard of anyone who has gone on to develop chronic Lymes after receiving prompt first line treatment.
Acute Lyme is unpleasant and is usually quite readily treatable.
For anyone who doesn't know, there are three signs:
A) presence of a tick bite,
B) characteristic rash at a bite area and
C) flu like symptoms appearing within a few days.
Any 2 from these 3 should see you running to your GP.

Chronic Lyme is simply horrible and best avoided at all costs.