A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
Discuss the article on the Forums.

Lyme testing, antibodies and borrelia etc

Discussion in 'Lyme Disease and Co-Infections' started by Skippa, Feb 9, 2017.

  1. Skippa

    Skippa Anti-BS

    Hi all you knowledgable peeps.

    I had the blood test, positive, 3 weeks doxy cleared up the rash and stopped the acute feverish/neurological outbreaks.

    About 2 months later they re-did the blood test to make sure "the treatment had worked".

    I didn't hear anything back, but when I enquired I was told the second blood test "confirmed the first test".

    Eg, nothing had changed it was still positive.

    So the doc telephoned the infectious disease people and was told that is fine as long as I've had my doxy that is all that is required. That is why I didn't hear back.

    Now, if the treatment had worked, shouldn't the two blood tests show different results?

    Or is it a case of once I've got the antibodies it will of course be positive so therefore nothing further can be deduced by their presence?

    Thanks :)
    MEMum likes this.
  2. Valentijn

    Valentijn Senior Member

    From what I recall, it would take a long time after successful treatment for the standard tests to reflect that.
    MEMum and Skippa like this.
  3. justy

    justy Donate Advocate Demonstrate

    For most people 3 weeks of Doxy is not enough. In the UK the dosage they give is not storng enough anayway, so can just supress the Borellia for a little while. I would presume if the test is still positive then you are still infected. The UK mantra is two weeks of dOXYCYLINE AT 200mg a day cures Lyme disease, any remaining symtpoms are PTLD and or in your head.
    MEMum, brenda and Skippa like this.
  4. charles shepherd

    charles shepherd Senior Member

    MEA position/information on Lyme Disease in the UK

    Taken from the Differential Diagnosis of ME/CFS section of the MEA purple book:

    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, the Lake District, New Forest, Yorkshire moors and the Scottish Highlands.

    The earliest symptom can be a slowly expanding localised erythematous rash (erythema migrans) that 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. When the disease is 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 neurologic post treatment Lyme disease and ME/CFS has identified a range of proteins that appear to separate the two conditions (Schutzer et al 2011).

    Misdiagnosis of Lyme disease

    There are 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 about consequent dangers of misdiagnosis. The full statement can be found on the MEA website: http://www.meassociation.org.uk/2009/10/lyme-disease-and-mecfs/

    As of 1 June 2012, the Lyme diagnostic service of Public Health England (formerly the Health Protection Agency) is provided by the Rare and Imported Pathogens Laboratory (RIPL), Public Health England, 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 cerebrospinal fluid, and antibody detection is the preferred first line test on cerebrospinal fluid. PCR is not usually performed on blood as the duration of bacteraemia is short.

    RIPL also has the 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 ripl@phe.gov.uk. There is no clinic at Public Health England, Porton Down, and they are unable to see patients or to give telephone advice directly to members of the public. Their website provides more information for health professionals and a (P2) form that can be downloaded to request a Lyme disease test. RIPL website: www.gov.uk/government/collections/rare-and-imported-pathogens-laboratory-ripl

    The ME Association has a patient information leaflet on Lyme disease that is written by consultant microbiologist Dr Darrel Ho-Yen.

    The American Centers for Disease Control and Prevention website has a list of frequently asked questions relating to Lyme disease: http://www.cdc.gov/lyme/faq/Additional information:1 New NHS initiative on Lyme disease: http://www.theguardian.com/society/...yme-disease-in-britain-spurs-ministers-to-act
    2 It is worth noting that there are 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 may not be diagnosed by conventional NHS tests and then treated

    And at the same time there are people being diagnosed as having Lyme disease with unvalidated commercial tests who are being treated with prolonged courses of antibiotics when they do not actually have Lyme Disease.

    Worth watching this news video on 'false positive' Lyme Disease testing, and the overlap between Lyme Disease symptoms and ME/CFS, if you are thinking of spending a lot of money on controversial tests and treatments in the private medical sector.

    Video: http://globalnews.ca/video/2098060/explaining-the-mysteries-of-lyme-disease

    Erythema migrans rash:

    http://www1.toronto.ca/City Of Toronto/Toronto Public Health/Health Professionals/Lyme Disease/Files/Images/erythema_migrans.jpg

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
    cyclist and Skippa like this.
  5. duncan

    duncan Senior Member

    @Skippa, how long do you think you were infected prior to treatment?

    You may want to see what I just wrote about the C6, as it may be pertinent. It's under a Lyme thread posted by @harveythecat
  6. Skippa

    Skippa Anti-BS

    Could have been 4 months, could have been 2 years or longer!
  7. duncan

    duncan Senior Member

    I will wager your doctor doesn't know much about the C6, or I'd suggest you track your values. At the least, you may want to compare your values before vs after treatment - did they go up or down or stay steady. Ditto for which bands flared on the WB.

See more popular forum discussions.

Share This Page