During summer Tick Talk Ireland sent a letter of concern to the Minister of Health (Ireland), the HPSC (Irish equiv HPA), Director of the EU CDC & a copy was submitted with the petition & rally outside 10 Downing Street in May. No response has been received from any of those parties. Meanwhile in September we emailed several health organisations with studies regarding the problems with testing. It was noted November 2012 that some of the entities contacted created a consensus statement citing unison with the IDSA guidelines. In response we created this letter:
Dear sirs, on the 18th September 2012 a full & lengthy report was submitted to the entities above with regards to the many problems associated with Lyme Disease testing. This was accompanied with numerous studies supporting the points put forward. It has been noted however that a consensus statement has since been drawn up & published online by the following entities:
Scientific Advisory Committee of the Health Protection Surveillance Centre,
Infectious Diseases Society of Ireland, the Irish Society of Clinical Microbiologists,
Irish Institute of Clinical Neuroscience and the Irish College of General Practitioners
As a concern for patients we believe the following affidavits should be included:
1. Guidelines are designed for voluntary use only & should not be used to replace the knowledge of the treating physician:
Quote: “It is important to realize that guidelines cannot always account for individual variation among patients. They are not intended to supplant physician judgement with respect to particular patients or special clinical situation. IDSA considers adherence to the guidelines listed below to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient’s individual circumstances.”
Quote: “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.”
2. Testing can be problematic causing false positives & false negatives for several reasons:
Per Trinity Biotech: https://ticktalkireland.files.wordpress.com/2013/02/elisa-trinity-vise.pdf
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”.
More information on the downfall of testing is available in the following document
3. Lyme testing criteria set by the CDC is for ‘surveillance’ criteria & should not be used to exclude diagnosis.
Quote: “This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis.”
Quote: “Further improvements in diagnostic tests are also required.”
As a team we have access to many scientific papers as well as lab test kit information from various manufacturers & feel very concerned that information with regards to the problems with testing is not being relayed sufficiently to doctors. We are aware that consultants are still telling patients that Lyme doesn’t exist here in Ireland therefore rashes are being missed or blamed on a spider bite. Too much reliance is also placed on testing (a negative leads to patients being refused treatment). We know that early diagnosis is key to successful treatment; those treated later their prognosis for a full recovery is not so good.
Per Trinity Biotech: Late, delayed, or inadequate treatment can lead to the more serious symptoms, which can be disabling and difficult to treat.
Until testing can significantly be improved we feel that more must be done to ensure swift & effective clinical diagnosis. We also feel adherence to restrictive guidelines & testing does little to help patients, & welcome the day when improvements can be made. In the interim if our concerns can be met regarding the points mentioned above we would be grateful.
We will continue to post updates as we soon as we know more….
Christmas Gifts at Tick Talk Ireland
Find a cure bangles, lyme survivor bracelets, make a difference key rings & copies of Under Our Skin with free car sticker are available. Head on down to: http://www.ticktalkireland.org/merchandise.html for more including tick twisters & repellants to protect your family.
June 5/6 2012 bought the very first conference on Lyme Disease to Ireland, attracting highly respected professionals from around the world. A conference 3 disk DVD set will soon be ready for release & updates will be posted on our main website & facebook pages once it’s available. For more information on the conference plus reviews head on down to: http://www.ticktalkireland.org/conferencereview2012.html
Tick Talk Surveys
If anyone comes across ticks in Ireland we have some surveys to report on where they were found. This is a rolling survey (results updated each year) so we can analyse any changes over time. We also have surveys for Lyme sufferers who have been infected in Ireland (or infected abroad but treated & tested here in Ireland.) More details are available at: http://www.ticktalkireland.org/surveys.html.
To review results of previous surveys check out our blog site at:
New Book to Warn Children about Lyme Disease
Tick Talk Ireland have written a new children’s book to help warn children, teachers & parents about the dangers of ticks, the carriers of Lyme Disease. Did you know that Lyme is alive & kicking in Ireland? Would you know how to prevent infection?
An educational story & picture book following the adventures of Luna & Dips (tick). Follow Luna from her birth as a young larva as she navigates her way through the trials & tribulations of growing up. She learns many things from her adult friend Dips but often has to go & undertake her quest alone. She yearns to be grown up & look just like Fantaz, a nymphal tick, who gives her more advice. Will Luna grow up to be the tick she desires?
We’d love to make the book available free to schools, accompanied with a factsheet with tips on protection & prevention. For more details & a video clip of our current project head on down at: http://www.fundit.ie/project/the-adventures-of-luna–dips
We’re also looking for helping with funding – pledges can be made on the site link above in return for rewards including free t-shirts, certificate, copy of the book, tick pullers & maybe even a free night’s stay at Clontarf Castle for 2!
Craft Fair & Tick Talk Fundraiser
For anyone with family or friends in the Galway area (a hotspot area for Lyme disease) why not come down & see us at the Christmas Craft Fair 8/9 Dec at the Oranmore Community Centre from 10am-6pm?.. There’ll be loads of crafts stalls, lots of home baking, a remembrance tree, Tick Talk awareness table & children’s entertainer all available on the day.
And don’t forget to bring your letters for Santa!
With all the best & keep safe!