On Sunday there was an article published in the Irish Daily Mirror about a dear lady Marina Murphy, daughter of worried mum Gerladine. Marina’s plight shows just how frustrating the lyme world can be. A diagnosis of MS at a young age following a very suspicious bulls-eye shaped rash should have been enough to lead to a clinical diagnosis. Instead this poor patient is being told adamantly she does not have Lyme despite tests from overseas confirming the opposite to be true. So where is the system going wrong & how can we get out of this?
In my letter to the Daily Mirror I explained some of the pitfalls that can rear its ugly head during testing & treatment..
Thank you for the article in the Irish Sunday Mirror 22nd July 2012 highlighting the plight of Lyme disease sufferer Marina Murphy. Although Western Blot tests are available in the UK many patients are not offered this secondary test unless the first test (ELISA) is positive. Sadly not every patient responds positively to the first test. The test kit manufacturers Trinity Biotech state that ‘a negative result (1st tier or 2nd tier) does not rule out a Lyme disease diagnosis.’ Igenex lab in America skips the first test & goes straight to the more sensitive Western Blot which can also pick up some additional Lyme specific bands, however consultants in UK & Ireland are unwilling to accept these results. Lyme primarily should be a clinical diagnosis & tests should not be relied upon solely for diagnosis.
Current thinking by highly experienced physicians such as Jemsek mentioned in the article, is that entrenched ‘Lyme’ cannot be cured, but in most cases, even those which are life altering and debilitating, can be helped with skillful management.
Although considered rare I feel that Lyme could be more common than we think. If consultants are saying ‘there is no Lyme in Ireland’ & missing rashes that a patient reports then this can lead to misdiagnosis not helped by the lack of sensitivity in testing. Early recognition & treatment can stop the disease at its more treatable early phase.
Lyme disease can lead to an MS or ME type illness as it becomes neurological in nature, during the later stage of disease. More information on cross overs between Lyme & ME / MS can be found on our web site at: https://ticktalkireland.wordpress.com/lyme-links/
It’s very interesting to note until recently the NHS in the UK held a document on their site called Map of Medicine. This has recently been removed from all view however the contents of it was very interesting & the full document can be seen here.
Quote Map of Medicine • “there is current evidence to support both IDSA and ILADS schools of thought and it may be some time until one set of guidelines becomes generally more accepted than the other”
Quote: • “the two-tiered system of ELISA and immunoblotting is more rapid than other diagnostic methods but the poor combined sensitivity means that better tests are needed”
Quote “In the absence of current consensus between IDSA and ILADS:
• “longer course (more than 21 days) of antibiotics may be beneficial in some sub-groups of patients, eg Lyme encephalopathy, post-Lyme disease, after consultation with Lyme experts”
There’s more news on the removal of the doc. at: lyme-disease-suspended
Sadly although it states that longer treatment maybe beneficial for certain sub groups following advice from a lyme expert, patients who do seek a lyme expert abroad aren’t being treated under the treatment abroad scheme & so end up paying for their own costs. Until we can establish some kind of consensus & agreement is there anyway to get patients access to treatment centres abroad that specialise in Lyme disease? Short term treatment often is too little too late as patients aren’t always being diagnosed quickly enough. The consensus definitely across the world is the earlier treatment is given the better the prognosis, but the ones slipping through the net are the ones who are not treated more quickly.
I really feel for the many that come to us desperate & pleading for somebody to take them seriously. Until we can improve testing & get a real consensus on treatment I believe that ‘every’ patient should be treated as an individual & their treatment plan designed depending on their mix & severity of symptoms & not based on some restrictive set of guidelines. Even the ECDC say:
Key areas of uncertainty
*Areas for further research include more detailed knowledge of the ecological aspects of Lyme borreliosis on a local, regional and EU scale, including distribution and prevalence of pathogenic and non-pathogenic genospecies, and more data on the epidemiology of Lyme borreliosis.[My note: Ireland really needs to look at strain VS116 which as been found in 50% of infected ticks in one of Prof Gray’s studies]
*Further improvements in diagnostic tests are also required*
*Note: The information contained in this factsheet is intended for the purpose of general information and should not be used as a substitute for the individual expertise and judgement of healthcare professionals.
The downside is that patients often go to their GP &/or consultant armed with private tests & are told that the Irish ELISA was negative therefore these overseas tests ‘must’ be inaccurate. ELISA is known to be a poor test so until better testing is designed then I feel it is dangerous to disregard all other forms of testing is if they are somehow insuperior.
The test kit states “The diagnosis of Lyme disease must be made based on history, signs (such as erythema migrans), symptoms, and other laboratory data, in addition to the presence of antibodies to B. burgdorferi.
*Negative results (either first- or second step) should not be used to exclude Lyme disease.*
Some reasons for the possible pitfalls with Elisa testing per the kit manufacturer’s notes include the following…
*B. burgdorferi is antigenically complex with strains that vary considerably.
*Early antibody responses often are to flagellin, which has cross-reactive components.
*Patients in early stages of infection may not produce detectable levels of antibody.
*Early antibiotic therapy after EM may diminish or abrogate good antibody response.
Thus, (in their own words) “serological tests for antibodies to B. burgdorferi are known to have low sensitivity and specificity, and because of such inaccuracy, these test cannot be relied upon for establishing a diagnosis of Lyme disease”.
This information however is not being relayed to GPs which I’m sure is failing many patients.
I would love to see a way forward, & wonder what can we do to move on from this?
Some interesting links:
Taking a look at patents & grants showing the very thing they ‘claim’ doesn’t exist – chronic Lyme…
Read Kate Bloor’s article ‘Falling Through the Gaps’
or see our review of some persitence & seronegativity studies
Tom Grier (a microbioligist & Lyme/MS sufferer) writes some very interesting articles about Lyme Disease – here’s a look at one of them, Dispelling the Myths