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Where to get a test for Lyme disease.

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by browny, Sep 22, 2015.

  1. browny

    browny

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    Hi
    My daughter age 33 was diagnosed with CFS seven years ago.
    We have been reading about Lyme disease and know the test in the U.K. where we live is unreliable.
    I have heard there are labs. in other countries who do private tests which are accurate.
    Does anyone please have the details of the labs. and which tests to request and what they cost please.
    Any advice would be gratefully received.
    Many thanks Elaine
     
  2. charles shepherd

    charles shepherd Senior Member

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    It is worth noting that there are major concerns about the reliability of some of the Lyme disease tests that are available in the commercial/private sector here in the UK as well as abroad.

    So we have a situation where some people with genuine Lyme diseae are not being diagnosed and treated and at the same time there are people being diagnosed as having Lyme disease and treated with prolonged courses of antibiotics when they do not actually have Lyme Disease.

    The MEA purple booklet has a section on Lyme disease testing and diagnosis.

    Dr Charles Shepherd
    Hon Medical Adviser, MEA

    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.
     
    barbc56 likes this.
  3. minkeygirl

    minkeygirl But I Look So Good.

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    This place is littered with threads on lyme.

    @Ema just respsonded to someone in the UK who asked about this. Just search. She knows of what she speaks.
     
    maryb likes this.
  4. Ema

    Ema Senior Member

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    If they used the ELISA two tier testing, which is no better than tossing a coin at accurately detecting Lyme disease, they have no way to prove or support this statement much less make any sort of grandiose exaggerations about antibiotics.

    I would look at this site for information about the testing currently offered by various labs:

    http://www.betterhealthguy.com/lyme/testing
     
  5. msf

    msf Senior Member

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    Haha, I like the ´no specific diagnosis was made in a third.´ But we know it wasn´t Lyme!
     
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  6. browny

    browny

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    Many thanks for your reply,
    I will check the site out.
     
  7. browny

    browny

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    thank you
     
    minkeygirl likes this.
  8. browny

    browny

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    Many thanks for your reply,
    I am aware the test for Lyme in the U.K. is unreliable but I have been informed of the lab. in the U.S. does do a reliable test.
    I will check the links you have supplied and look further into testing.
    Thank you Elaine
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Testing for lyme has been controversial for years, why can't science and govt health agencies etc just put together or agree on a test and its level of accuracy .

    Lyme supposedly doesnt exist in australia yet many symptomatic aussies have sent blood overseas for testing which has been positive. A recent study published by the university of sydney have found lyme in aussie patients, many with no overseas travel. It doesn't seem like the government are falling over themselves to help these ill people .

    Why do most governments like to ignore invisible illnesses??????????????
     
  10. justy

    justy Senior Member

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    I suggest Arminlabs - they have a great website, and a look over at Lyme disease UK discussion group on Facebook - littered with people diagnosed with M.E/CFS who went on to have a Lyme diagnosis and many recovering/improving after correct treatment.

    Failing that I suggest a trip to see Dr Kenny De Meirleir in Brussels, if you would like more info on this you can private message me and am happy to chat about it.
     
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  11. charles shepherd

    charles shepherd Senior Member

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    barbc56 likes this.
  12. duncan

    duncan Senior Member

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    Do you have any PSA's about false negatives in your bag of tricks there, @charles shepherd ? ;)

    It's good to try to offer a balanced perspective, wouldn't you agree?
     
  13. charles shepherd

    charles shepherd Senior Member

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    I fully agree and you obviously did not read the opening paras to the section on Lyne Disease in the MEA purple booklet that I posted earlier! >>

    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).
     
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  14. duncan

    duncan Senior Member

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    I saw it.

    I see what you just posted again, too. Not sure what either does to offset the specific warning in a specific post - WITH VIDEO lol - against false positives...Shouldn't you have a specific warning against false negatives for a truly balanced picture? You got a video on the hazards of false negatives hanging around anywhere?

    Perhaps, @charles shepherd , we interpret "balanced perspective" differently.
     
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  15. Jonathan Edwards

    Jonathan Edwards Senior Member

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    As far as I can see, browny, as a retired doctor who has become interested in this field only as a research advisor, none of these tests are likely to be of any use in the long term CFS context. Moreover, from what I hear from ordinary sensible colleagues there are good reasons to think the tests from US labs said to be 'more reliable' are less so. If they really were more reliable there should be some published papers to show that (it would bring in huge amounts of money to the companies to publish if they had the evidence). But there are no published studies. Common sense tells me that chasing Lyme tests is likely to be pouring money down the drain.
     
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  16. duncan

    duncan Senior Member

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    The C6 is a US test from a US lab. The UK uses it as the first half of its two-tier.

    One can have ME/CFS and Lyme; they are not mutually exclusive.
     
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  17. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Both non-sequitur duncan.

    The C6 test is only from a US lab (what I was referring to) if it is from a US lab. If it is used in the UK it is from a UK lab, I presume. It is not the test that is the problem it is the labs.

    Of course you can have ME and Lyme, but presumably the question here is whether the symptoms are Lyme rather than ME/CFS.
     
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  18. duncan

    duncan Senior Member

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    Ah. Excuse all of my non-sequiturs and try to be patient with me.

    So, if the C6 test - created in the US - is executed in the UK, its results are different than if executed to the same specs in a US lab? So all the testing I have had done at the NIH was foolhardy on my part? Only UK labs know how to do it right? I should have had the C6 done in the UK?

    Silly me. I should alert the manufacturer - based here in the US.

    "Presumably" one way to distinguish between ME/CFS and Lyme is by testing for Lyme.
     
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  19. charles shepherd

    charles shepherd Senior Member

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    I think we are in danger of going round in circles here

    My position is really quite simple:

    There are some people with Lyme disease who are not being diagnosed - because some doctors are not properly clued up about symptoms, investigations and when/where to refer for further advice

    There are also some people being diagnosed and treated for Lyme Disease - sometimes in addition to having ME/CFS - on the basis of commercial tests that are not reliable and clinical histories that are not suggestive of Lyme Disease

    People need to be aware of both sides of the debate
     
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  20. duncan

    duncan Senior Member

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    And there are ample reports of people being told they do not have Lyme on the basis of commercial tests even when they may, and not receiving treatments for it.

    In fact, this is happening so frequently, that some states in the US have enacted, or are seeking to enact, legislation requiring clinicians advise patients - following a negative Lyme test - that that patient may still have Lyme despite negative test results.
     
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