Tick Talk Ireland is rounding up our first year end as a charity & wow what a year.
So what have we done so far?
*Set up a new website with Tick Talk URL
*Designed & printed leaflets & distributed to national parks, hospitals, vets, libraries, health centres & chemists
*Printed business cards & Tick Talk postcards for leaving in banks, handing to doctors, mailing with twisters etc.
*Purchased tick twisters for resale
*Purchased merchandise including find a cure bangles, where there is love & Lyme survivor bracelets, computer bugs & awareness ribbons.
Merchandise will help to create awareness & subsequently generate more funds to help us raise more awareness!
*Held our first fundraising & awareness event complete with Lyme presentation, sponsored walk, music night & raffle
*Tick Talk member persuades Killarney county council to place warning signs by a children’s play area
*Wrote articles for children’s websites, appeared on RTE television & some Tick Talk members helped with newspaper & radio interviews
*Sent ILADS psychiatric Lyme brochure to psychiatric clinics across Ireland
*Designed & posted symptoms chart to help patients track their symptoms
*Continued to write Luna tick stories (If Ticks Could Talk!)
*Published an FAQ & what to do if you suspect Lyme
*Questions & answers session with the Deer Alliance & collection of ticks brought in for analysis (these were sent off to Germany for PCR testing)
*Completed a tick sweep in Portumna Forest, Galway & mailed to Germany for testing
*Fundraising event via a Dart Tournament in Wicklow
*Tick Talk & its members encouraged Lyme to be made notifiable to help track possible, probable & proven cases (Lyme has been added to the notifiable illnesses list as of September 2011)
*Wrote to the European Parliament to encourage better testing & monitoring of Lyme disease cases throughout the EU
*Followed up with all county councils to ensure they included links to the HPSC Lyme leaflets on their site, as promised by the HSE (the majority have now complied)
*Surveys Two new surveys created on ticks in Ireland plus vet’s study
*Release of a UK & Ireland patient survey, in collaboration with Lyme Research UK & Ireland (see note below)
NB: As a reminder the survey through Lyme Research UK & Ireland is due to close soon. For more information go to: http://ticktalkireland.wordpress.com/2011/10/17/surveys-sweeps/
Plans for next year include:
*Our very first Lyme conference attracting speakers from US & Europe (more details to follow)
*More tick sweeps & tick testing in various locations in Ireland – volunteers needed!
*Much wider distribution of leaflets across Ireland – more volunteers needed!
*Analysis & publication of survey results
*Meeting with the HPSC regarding survey results & discuss warning notices to the general public
*Design, print & distribute awareness posters for health clinics & schools
*Continue to update our website, blog, twitter & facebook page with new & exciting research studies
*Lyme awareness presentations in local areas
*Encourage doctors to consider the ILADS physician training program (Tick Talk may be able to contribute towards flights – a stipend is payable during the program)
*Plan new fundraising & awareness events, to be announced in the New year
*Finish & publish Luna the Tick (If Ticks Could Talk!)
Ways you can help!
*If you have some spare time & can help us distribute leaflets let us know at info AT ticktalkireland.org
*Interested in doing a fundraising event in your area? Let us know & we can send material to help you such as posters, leaflets, presentation disk etc. We also have available a version of Under Our Skin with public viewing rights – if your local sports, walker’s club etc. would be interested let us know!
*Do you have sporty & daring relatives? Maybe they’d like to help out with sky diving or marathon running. A great way to raise awareness & funds at the same time!
*Check out our merchandise page, all profits from sales go directly to Tick Talk
*Alternatively donate to us at: http://ticktalkireland.wordpress.com/donate/
*If you’re a doctor & would like to be regularly informed of new research on Lyme feel free to contact us.
Stop Press!
Lyme disease has now been made a notifiable illness!
We have recently received confirmation from the Department of Health that as from September 2011, Lyme disease has been made a notifiable illness here in Ireland. We had been campaigning for a number of years to achieve this status as recognition of the seriousness of the disease. My thanks to everyone in the health service who have helped to encourage this move forward.
We feel that tracking of case numbers may be enhanced, as clinical diagnosis could also be considered as well as serologically confirmed cases. ** see update below
It is important to note that not all cases are picked up serologically,. For instance the test kit manufacturers Trinity Biotech say that early Lyme cases & some late manifestations of Lyme may continue to be negative. In their own words, ‘Lyme testing both 1st & 2nd tier should not be used to RULE OUT a diagnosis’. This is especially important where early antimicrobial intervention has been given as this may affect the antibody response. This is why clinically diagnosed cases can show a much sounder reflection of cases..
** It appears that only lab confirnmed neuroborreliosis cases are being monitored, this is disappointing as early lyme sufferers may not exhibit postive results & lab tests can be affected by antibiotics therefore relying on lab confirmed cases only will miss a number of patients. Using suspected & probable cases may have gone a long way to tracking clusters of cases across Ireland & could have been based on EM rashes & other symptoms following a tick bite. Sadly these patients may not hit the radar giving an underestimated figure across Ireland.
On a different note, a new book has been released by founding member of the IDSA (Infectious Disease Society of America) Dr Burton Waisbren entitled:
Treatment of Chronic Lyme Disease: Fifty-One Case Reports and Essays
This book is available through amazon in paperback edition or kindle.
For sample chapters please refer to: http://books.google.co.uk/books?hl=en&lr=lang_en&id=GYzwLmRNatUC&oi=fnd&pg=PR15&dq=lyme&ots=6pG66rTkCX&sig=VPSZdONEeGCBgEL5QB5EQyAR8TU#v=onepage&q&f=false
Dr. Waisbren is board certified by the American Board of Internal Medicine and also is a fellow of the American College of Physicians and the Infectious Disease Society of America. He is a founding member of the Infectious Disease Society of America, the American Burn Association, and the Critical Care Society of America.
For more information on his background please go to:
http://waisbrenclinic.com/aboutdr.html
Lastly I’d like to give advance noticed of an upcoming Lyme conference being planned for next year. Speakers will be coming in from USA & Europe & should be a good chance to discuss problems faced by patients & their doctors when it comes to recognising & treating the myriad of Lyme symptoms.
More news to follow in the New Year.
Despite the fact that Lyme is now a notifiable illness here in Ireland it appears that they are only tracking lab confirmed cases & neuroborreliosis (stage 3) cases of lyme disease. This has the potential to miss a lot of patients, patients who are treated early maybe sero-negative, early lyme patients & a portion of late manifestations may be sero-negative, patients with an EM rash who haven’t yet seroconverted but are treated based on clinical signs will be sero-negative, all these will not be recorded because they are eithr early stage or because they are late stage but lyme tests are not showing positive. How can we truly track cases of lyme disease UNLESS we look at clinical signs of early as well as late disease without over reliance on labatory testing? In the States, the CDC say that Elisa & WB testing are for surveillance purposes only & should not be used to exclude diagnosis. The test kits including immunetics C6 & Trinity Biotech also say this – I am fairly saddened that more is not being done to control & track this insidious disease.
Per Trinity Biotech:
http://www.trinitybiotech.com/Product%20Documents/44-2020GV-29EN%20EU%20Lyme%20+VLsE%20IgG%20WB.pdf
Limitations of precodeure:
E) A negative interpretation does not exclude the possibility of infection with B. afzelii/garinii/burgdorferi.
F) Sera from individuals with other spirochetal diseases such as syphilis, yaws, pinta, leptospirosis, relapsing fever and periodontal disease may give rise to false positive results. Individuals with connective tissue autoimmune diseases such as rheumatoid arthritis and systemic lupus erythematosis, and individuals with anti-nuclear antibodies may also give
false positive results. Individuals with bacterial and viral infections such as Rockey Mountain Spotted Fever, Epstein-Barr Virus and Cytomegalovirus may have antibodies which will cross-react with Borrelia afzelii/garinii/burgdorferi.
G) The Trinity Biotech EU-Lyme Western Blot should not be used to determine the success or failure of antibiotic therapy.
H) Western Blot testing should not be performed as a screening procedure.
I) A positive EU Lyme IgG Western Blot result only indicates probable immunologic exposure, however, the band intensity or identity has not been correlated with active infection.
J) When testing specimens from patients during early Lyme disease, IgM tests are generally sensitive within the first 2 months after onset of symptoms. A suitable IgG Western Blot test can be used at any time after onset but is most sensitive during the later stages of the disease.
K) Studies have demonstrated that antibiotic therapy may or may not affect the seroconversion from IgM to IgG during the course of the disease.
Lyme Disease (Borrelia burgdorferi)
2011 Case Definition
CSTE Position Statement Number: 10-ID-06
This surveillance case definition was developed for national reporting of Lyme disease;* it is not intended to be used in clinical diagnosis.*
Laboratory criteria for diagnosis
For the purposes of surveillance, the definition of a qualified laboratory assay is
1. Positive Culture for B. burgdorferi, or
2. Two-tier testing interpreted using established criteria [1], where:
a. Positive IgM is sufficient only when ≤30 days from symptom onset
b. Positive IgG is sufficient at any point during illness
http://www.cdc.gov/osels/ph_surveillance/nndss/casedef/lyme_disease_Current.htm