Viewing 40 posts - 1 through 40 (of 64 total)
  • Lyme disease: latest official infection stats for England
  • cinnamon_girl
    Full Member

    A total of 200 laboratory-confirmed Lyme disease was reported during the first quarter of 2017, 138 of these were acute. Last year for the same period were 113 cases.

    Scroll down to page 3 of the following link for a breakdown by area:

    https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/614121/hpr1717_zoos2.pdf

    njee20
    Free Member

    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.

    scotroutes
    Full Member

    That.

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    jambalaya
    Free Member

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

    bigjim
    Full Member

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

    njee20
    Free Member

    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.

    amedias
    Free Member

    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.

    bigjim
    Full Member

    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.

    cinnamon_girl
    Full Member

    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.

    amedias
    Free Member

    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 were 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?)

    slowoldgit
    Free Member

    Why not start a single thread where you can post these links?

    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.

    5plusn8
    Free Member

    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?

    bigjim
    Full Member

    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.

    snaps
    Free Member

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

    slowoldgit
    Free Member

    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.

    slowoldgit
    Free Member

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

    Tom_W1987
    Free Member

    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.

    bigjim
    Full Member

    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…

    slowoldgit
    Free Member

    By a Doc…

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

    I feel the attraction of doing some hoovering.

    vongassit
    Free Member
    eulach
    Full Member

    Thanks for posting, OP.

    njee20
    Free Member

    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[/quote]

    :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.

    slowoldgit
    Free Member

    Amedias –

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

    LD stats, England & Wales, ’86-98

    johnnystorm
    Full Member

    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.

    tjagain
    Full Member

    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

    Lionheart
    Free Member

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

    Nobeerinthefridge
    Free Member

    oldnpastit
    Full Member

    cinnamon_girl
    Full Member

    amedias 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.

    cinnamon_girl
    Full Member

    johnnystorm 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.

    milky1980
    Free Member

    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.

    cinnamon_girl
    Full Member
    slowoldgit
    Free Member

    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.

    slowoldgit
    Free Member

    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.

    cinnamon_girl
    Full Member

    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.

    bigjim
    Full Member

    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.

    johnnystorm
    Full Member

    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.

    bigjim
    Full Member

    😆

    slowoldgit
    Free Member

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

    http://eprints.gla.ac.uk/138107/1/138107.pdf

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