A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Lyme disease in the UK

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Apr 29, 2016.

  1. charles shepherd

    charles shepherd Senior Member

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    Lyme disease in the Daily Mail today

    Fairly balanced coverage for non medics:

    Lyme disease is known to wreck lives and strike when people least expect it.

    Transmitted from ticks, it can take years to diagnose, leaving people suffering painful symptoms doctors are unable to explain.

    The oldest known case was discovered in the Copper age and it is now one of the fastest-growing diseases in the Western world.

    Here, Dr Hany Elsheikha, associate professor of parasitology at the University of Nottingham, explains how a microbe from the Copper age could wreck your life.

    From avoiding tick-ridden areas to seeking medical help immediately, below, he reveals exactly what you can do to protect yourself.


    Full article:

    http://www.dailymail.co.uk/health/a...cking-illness-spreading-protect-yourself.html
     
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  2. duncan

    duncan Senior Member

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    Thank you for posting, @charles shepherd . It is good to see an article in the UK that speaks to some of the dangers of Lyme. It may have a few errors, but overall I give it a big thumbs-up. :thumbsup:
     
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  3. msf

    msf Senior Member

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    I think we will find that it is a lot older than the Copper Age.

    Just out of curiosity, Dr. Shepherd, why did you post this article in the ME discussion forum? I thought you were one of the ´ME is Lyme´ skeptics?
     
  4. charles shepherd

    charles shepherd Senior Member

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    I don't have any doubts about the fact that Lyme disease exists and can cause serious medical consequences - see the section on Lyme Disease from the MEA purple booklet below and the fact that the MEA has produced an information leaflet on Lyme Disease, written by a Consultant Microbiologist with a special interest in Lyme Disease.

    I also live in a rural community with woods and deer and take particular care with ticks and tick bites

    What I am concerned about are some of the unvalidated and expensive commercial tests that people are using to diagnose Lyme disease, along with the fact that some people are being treated for Lyme disease with prolonged courses of antibiotics when the diagnosis is open to considerable doubt

    Information on Lyme disease and Lyme disease testing from MEA purple booklet:

    Lyme disease

    Doctors have been warned by the Medical Defence Union about the growing incidence of Lyme disease – an infection caused by Borrelia burgdorferi that is transmitted to humans by tick bites, although some people do not recall a bite taking place.

    Infected ticks are more common in woodland, heathland and moorland in areas such as Exmoor, Lake District, New Forest, Yorkshire moors and Scottish Highlands.

    The earliest symptom can be a slowly expanding localised erythematous rash (erythema migrans), which spreads out from the bite, usually after about 5-15 days.

    Other early symptoms can include lymphadenopathy and a flu-like illness.

    Laboratory evidence should always be sought if the diagnosis seems possible.

    Diagnosed early, treatment with antibiotics is often successful. Left untreated, Lyme disease can cause serious heart, joint and neurological complications.

    Analysis of cerebrospinal fluid from cases of early disseminated Lyme disease and ME/CFS has identified a range of proteins that appear to separate the two conditions (Angel et al 2012).

    Misdiagnosis of Lyme disease:

    There are also well documented concerns about over-diagnosis and inappropriate management of Lyme disease.

    A retrospective case note study of 115 adults with suspected Lyme disease who were referred to a UK infectious diseases clinic found that only a minority had Lyme disease; one third had ME/CFS; and no specific diagnosis was made in a further third (Cottle et al 2012). At least 53 unnecessary courses of antibiotics had been prescribed.

    Lyme disease diagnostic services
    The Autumn 2009 issue of the Chief Medical Officer’s Update contained a warning about the accuracy of some of the private (i.e. non-NHS) tests for Lyme Disease and consequent dangers of misdiagnosis. The full statement can be found on the MEA website:

    www.meassociation.org.uk/ ?p=697

    As of 1st June 2012, the Health Protection Agency’s Lyme diagnostic service is provided by the Rare and Imported Pathogens Laboratory (RIPL), HPA Porton Down.

    Lyme disease is usually diagnosed by serology. RIPL uses a two-tier testing methodology. The screening test is a C6 antigen-based ELISA (combined IgG and IgM), followed by a confirmatory Western blot (separate IgG and IgM). PCR is also available and may be useful in testing joint fluid and biopsies of rashes. It has poor sensitivity on CSF and antibody detection is the preferred first line test on CSF. PCR is not usually performed on blood as the duration of bacteraemia is short.

    RIPL also has capacity to perform further testing and tests for diseases related to Lyme. Contact RIPL to discuss if required.

    RIPL clinical staff are available to discuss cases with medical professionals during working hours on 01980 612348 or by email referral to Lyme. RIPL@hpa.org.uk. There is no clinic at HPA Porton and they are unable to see patients or to give telephone advice directly to members of the public.

    RIPL website:

    www.hpa.org.uk/Topics/InfectiousDiseases/ InfectionsAZ/LymeDisease/

    This gives details of where patients can be tested for Lyme disease on the NHS.

    The ME Association has a patient information leaflet on Lyme disease written by Consultant Microbiologist Dr Darrel Ho-Yen.

    CDC information on Lyme Disease (Q and A format) updated on 30 September 2015:

    http://www.cdc.gov/lyme/faq/

    Dr Charles Shepherd, Hon Medical Adviser MEA

    Bull's Eye Rash:

    [​IMG]
     
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  5. duncan

    duncan Senior Member

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    Ah. Good to see the NHS is taking direction from the CDC about TBD's...o_O

    In the US, I believe there is a widely circulating petition to have the CDC's Lyme activities and stance investigated by Congress.
     
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  6. msf

    msf Senior Member

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    Last edited: Apr 29, 2016
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  7. msf

    msf Senior Member

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    Slightly more up-to-date figures here: http://journals.ed.ac.uk/resmedica/article/view/743

    So either Borrelia hates England, Wales and Denmark, or those socialized healthcare systems aren´t doing a very good job when it comes to diagnosing Lyme. NHS Scotland seems to be doing a better job, but then I believe they use antigens from Scottish strains of Borrelia in their tests.
     
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  8. msf

    msf Senior Member

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    Here is a map of the seroprevalence rate of Borrelia sensu lato in I.ricinis in Europe: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1287732/figure/f4/
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1287732/

    The seroprevalence rate of adult ticks did not vary greatly between European countries, but the seroprevalence rate of nymphs did, with the rate in UK and a few other countries being about a tenth of that in the other countries. However, all these were countries whose rates were based on only a few reports. So either something is up with our (tick) nymphs in the UK, or this is an underestimate, which would suggest that, if the risk of exposure is similar, then it is likely that the incidence of Lyme in the UK is also an underestimate.
     
    Last edited: Apr 29, 2016
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  9. justy

    justy Senior Member

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    In fact a recent FOI request by Caudwell Lyme charity found that the RIPL at Porton Down is itself NOT an accredited and validated lab itself.

    The FOI request also found confirmation that no NHS Dr has to rely on testing from RIPL and can accept the test results from any accredited and validated lab.

    Co infection testing for most co infections is no longer available in the UK, specifically Bartonella.

    The areas that are listed as having ticks are basically just made up - West Wales where I live is literally crawling with ticks - we are surrounded by sheep and the ticks drop of them an onto the grass. My dog has been covered in ticks - last year we removed 30 in one go (correctly). Recent studies have also found many infected ticks in Richmond park and two other London parks. They are carried by birds, foxes, badgers, mice etc so to think they wont be spread throughout the whole country is crazy. I have spoken to a cardiologist recently who told me he thought there were NO ticks in Wales. Not no infected ticks, just no ticks. The nurse and I soon put him straight!
     
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  10. msf

    msf Senior Member

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    Haha, I love comments like that, or at least I would if the people making them weren´t supposed to be medical professionals. It reminds me of the doctor I saw for an odd bite I had in China, who, when I suggested it might be a spider bite, asked me if I´d noticed that there weren´t any spiders in China.

    Yes, a country of 1.3 billion people and zero spiders, of course.
     
    Last edited: Apr 29, 2016
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  11. daisybell

    daisybell Senior Member

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    Last year when I was back in the uk, there were loads of ticks. My parents live in Hampshire, and I don't recall seeing more than a very occasional one when I was growing up, but last year I had to comb them off the dog after every walk. For some reason, the number seems to have increased hugely.
     
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  12. msf

    msf Senior Member

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    The reason is global warming (if you believe in it).
     
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  13. duncan

    duncan Senior Member

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    Does anyone know why testing for some co-infections - like bartonella - is not done in the UK? @justy? @msf?

    As someone who has tested positive through conventional and mainstream labs for multiple tick-borne diseases, including bartonella, I find this antithetical to common sense.

    Edited to add: I'll hazard a guess that the logic is similar to why the NIH will not test for b. garinii or b. afzelii - why bother testing when someone in a position of authority declares incidence levels are close to, or at, zero.

    Of course, how can they know true prevalence if they are not looking?
     
    Last edited: Apr 29, 2016
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  14. justy

    justy Senior Member

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    I don't know the reason - i'll try and find out. All I do know at the moment is that they recently suspended Bartonella testing in the UK.
     
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  15. Valentijn

    Valentijn The Diabolic Logic

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    Maybe because the best Bartonella testing has an 80% false negative rate. On average, someone with an infection has to be tested 5 times to find it :p They might consider that to be too expensive for whatever benefit comes from it.
     
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  16. msf

    msf Senior Member

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    Umm, incompetence?
     

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