Getting treated for Lymes, confections etc... and treatment
| Author | Date | Message |
|---|---|---|
| Justin O'Keeffe | Apr 17 2025, 11:20am | I was not going to post this again this year, but here goes! Great to see that there has been an increased awareness around Lymes but there is still a massive gap in the knowledge around what to next if bitten, rash vs no rash, ill-equipped GPs, the treatments available, timing, cost etc.. In my own case, I was out of IMRA for the last few years with Lymes, my symptoms started in 2019 with extreme fatigue Generally, the support in the health system in Ireland is very poor, it is ill diagnosed and frequently not accepted as real by GPs. It something that I feel is far more prevalent that we generally think & the implications are quite serious. My observations around Lymes, below, but the bottom line is the Lymes is under-reported here,ticks far more prevalent than accepted & proper treatment is a bit like a ‘choose your own adventure book’ 1. Most people do not get a bull's eye rash; you can get Lymes without it 2. Most people do not ever remember being bitten, you can get Lyme’s without it knowing you’ve been bitten 3. Common misdiagnoses by the Irish range from depression, getting old, poor diet, flu, arthritis and back pain. You must mention you spend time in the mountains. 4. The standard Irish Lymes test available through GP is a confirmatory test, meaning if it says you have it then you do. However a negative results does not mean you don’t have it – the false negatives rate is very very high, >50%. 5. Somewhere around 10% of ticks in Ireland have Lymes & confections in them. Lymes is not just one type of disease; it is a cocktail of bugs that get injected into your system when you are bitten. 6. Standard best practice treatment for a suspected or potential infection is a 3 week course of doxycycline - you can insist on this if bitten. This is the link to the UK NICE guidelines, - even if you just suspect Lymes , and you may have to be very firm in requesting this from a GP: https://www.nice.org.uk/guidance/NG95 7. There is one consultant AFAIK in the country who deals with Lymes , Dr Jack Lambert in the Mater: www.iddoctor.eu 8. Before taking you on as a patient, his practice requires an Irish-positive Lymes test or a test result from a German lab like Armin Labs (https://www.arminlabs.com/en). You must pay for this; these tests are easy to order and very high-tech. 9. Dr Lambert diagnosis based on both the symptoms you appear with and the blood test – it’s a clinical diagnosis based on his experience. Standard treatment is 9-12 months of antibiotics – these have an 80% success rate AFAIK. 11. Pharmaceuticals are just part of the multi year treatment regime; reduced stress, improved diet, herbal remedies, etc. are part of an overall treatment plan, which you have to generate yourself. TLDR – Lymes is more impactful and widespread that widely accepted. Healthcare coverage is poor. There is a lot of dreadful information out there, people selling stuff and basic voodoo. So, if you have questions about Lymes ( & coinfections) or how to get tested, treatment etc.. please do let me know by pm or ‘0h eight 7 2-3-7 oh eight seven one’ to see if I can point you in the right direction See you in the hills soon! |
| John Bell | Apr 17 2025, 10:18pm | Hi Justin, thanks for the excellent information on lymes. Awareness and information seems to be gradually improving. Running or hiking in the hills increases our chances of coming in contact with these tick feckers. You're learned and shared experience will be really beneficial for anyone who suspects or is unlucky enough to get lymes. Thankd again, and see you on the hills soon. |
| Andrew Hanney | Apr 18 2025, 12:00am | Hi Justin, I hope you keep posting this and continue to raise awareness. I know from talking to you how impactful it has been on you. It was really great to see you return to IMRA last night at Killiney and hopefully it is the start of many more to come. See you on the hills. |
| Brian Kitson | Apr 18 2025, 12:09pm | My recollection of your previous posts on this topic was the driving factor in me deciding to get a suspected tick checked out by the doctor. Thanks Justin and good to hear you're back on the hills. |
| Steven Pettigrew | Apr 18 2025, 12:21pm | Thanks for posting. Always worth a reminder. |
| Aisling Luby | Apr 18 2025, 12:57pm | Thank you for this informative post - awareness is important. A great reminder to take precautions and be self aware. |
| Rob Tobin | Apr 18 2025, 10:26pm | Thanks for sharing this Justin. Fellow Lyme patient here - I hope you won't mind me adding from my own experience. In my case a rash measuring about 2 cms in diameter developed on my upper leg. The rash was red throughout, not the concentric circles of a bull's eye rash. Over a few days this extended to the width of my thigh. There was no tick or bite site evident, so no smoking gun for Lyme. A 1-week course of Flucloxacillin was prescribed for what was determined at that time to be acute cellulitis. The rash cleared up entirely within a few days and bloods analysed in Ireland returned negative. Happy days, I thought. About six weeks later I was in again with my GP, unrelated to Lyme, but while there my GP thought it prudent to take further bloods, especially given the high incidence of false negatives in tests for Lyme. These second bloods were sent to Salisbury for testing and returned positive. The timeframe from onset of rash to confirmed diagnosis was about ten weeks. My GP referred me to Prof. Colm Bergin in SJH. Considering my history of travel and outdoor activities in the couple of weeks before the rash developed and a lack of recent and extensive sampling of tick populations in Ireland to confirm the presence of Lyme, the case was recorded as being of German rather than Irish origin. Of course, that is not to say that it wasn't picked up here in Ireland, but the lack of study and a body of evidence to support such a diagnosis made it impossible to say so conclusively. I consider myself to be very fortunate that Lyme hasn't impacted heavily on my enjoyment of the outdoors to date and I am mindful that one more tick bite could change this. For me, prevention and management of the condition involves covering up (sometimes difficult, especially on warmer days!) and carrying out a full-body check for ticks or bites immediately after coming off the mountains. If I find I've been bitten any more than a few hours after the fact then I'm facing a repeat course of antibiotics and being mindful of antibiotic resistance I'd like to avoid taking Doxycycline too often. Wishing you well Justin and hopefully see you out in the hills soon! |
