Getting treated for Lymes, confections etc... and treatment
|Justin O'Keeffe||Aug 23 2021, 1:38pm||Was not going to post this, but here goes!|
Its great to see that there has been an increased awareness around Lymes but there is still a gap in the knowledge around what to next, rash vs no rash, ill-equipped GPs, the treatments available, timing, cost etc..
In my own case, I’ve been out of IMRA for the last 18 months with Lymes and getting treated with antibiotics for the last 12months. It looks like I’ve had the same specialist as John Mollohan, but that treatment is itself just one part of the jigsaw. My own symptoms started about 2.5 years ago with extreme fatigue and its only in the last few weeks that things have started to turn around
The support in the health system in Ireland is very poor, it is ill diagnosed by GPs and it feels a bit like a maze where you have to figure out a way to get better when you are perhaps not in the right place to do that. It something that I feel is far more prevalent that we generally think & the implications are relatively serious. Myself, I should be back running this winter fingers crossed in some capacity.
Thought it would be worth passing on my own experience in the hope that it would help others. There is a lot of dreadful information out these, 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
|Anne-Marie Flaherty||Aug 25 2021, 2:39pm||Glad to hear you're on the road to recovery, Justin.|
The snake oil and bad information is of serious concern and I think a lot of us have been naïve about the prevalence of Lyme and other tick borne illnesses.
The fact that symptoms are often not immediate and any rash (if there is one) may have faded, or been in an area that is not easily seen.
I'd been a little blasé about it myself. It's only through work that I've become, I suppose, hyper-aware of how much ticks are involved in co-infection and how widespread they are.
Hopefully see you back on the hills soon.
|Ken Cowley||Aug 26 2021, 11:22am||Great post, Justin, and well done on your comprehensive work not just to find a solution for yourself, but especially for offering to share your information with others and offer support. I hope your recovery from Lymes continues to go well and we see you back running with IMRA soon, you always brought a lot to the mountain-running scene - including dragging me around the Art O'Neil route back in the day!|
|Jeff Swords||Aug 31 2021, 9:47am||Interesting story today about a new vaccine under trial at the moment, and the reasons as to why a previous Lyme vaccine was pulled from the market.|
|Niamh O'Ceallaigh||Aug 31 2021, 3:25pm||So sorry to hear that you have been through such a prolonged illness Justin. It is definitely something that IMRA runners need to be aware of. I know of one IMRA marshal at a race this year who had to remove 10 ticks after the race! |
I didn't realise how teeny tiny ticks (deer ticks) are and could only identify ticks on our family by taking a photo of the black dot and zooming right in.
|Justin O'Keeffe||Sep 2 2021, 12:08pm||Thank you all for the messages, its much appreciated. |
My frustration with Lymes ( & the coinfections) has been the journey from the feeling that something is wrong ( being tired all the time etc..) through to starting to feel better.
Over the course of 18 months I had numerous Irish GP tick tests and passed, everything appeared normal was suggested that it was just one of these things, maybe diet related etc..The professional advice I got was generally very poor.
Finally when I embarked on the correct treatment path for me then the progression to getting better has brilliant . By way of background, it took 18 months of searching to get on the right treatment path which has been 12 months now - this is a long time to dealing with an unknown. These timings are pretty similar for many patients, some people even feel sub-par for up to a decade before treatment.
So the first step is to raise awareness of not getting bitten & the next step is for folks like us to know what to do when you have been or even suspect something is not quite right.
|Alastair Higgins||Sep 2 2021, 8:56pm||Hi Justin,|
Your story is a familiar one and unfortunately there will likely be others who will go through the same ordeal. it's so frustrating that there is still some ignorance and denial about Lyme within the medical profession.
I had the classic bullseye rash a few years back and went straight to my GP. She had to Google it and went on to give me the wrong antibiotics.
To her credit she booked me up with consultant Jack Lambert and thanks to a cancellation I got seen and treated properly.
My bother hasn't quite been so lucky and has been a chronic sufferer for 15 years. Like you, he had a few years of battling with different GPs and trying to convince them that he wasn't well.
The problem is that it's a hard disease to test for, and the only reliable method is to send samples over to Germany for a Western blot test. Most GPs won't carry out that test which means a lot of the cases go undiagnosed.
|Justin O'Keeffe||Sep 4 2021, 11:28am||Been speaking to a few people over the last weeks by phone and thought it a good idea to summarise my thoughts & experience, which sounds very similar Alastairs & others. A top 11 of suggestions / observations / myth busting:|
1. Most people do not get a bulls eye rash, you can get Lymes without it
2. Most people do not ever remember being bitten, you can get Lymes without it knowing you’ve been bitten
3. Common misdiagnosis by irish GPs ( who are usually our first port of call) range from depression, getting old, poor diet, flu, arthritis and back pain. You must mention you spend time in the moutains.
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 high.
5. Somewhere around 10% of ticks if Ireland has Lymes in them ( along with all the nasty coinfections). Lymes is not just one type of disease, there is a cocktail of bugs that get injected into your system when bitten.
6. Standard best practice treatment for a suspected or potential infection is a 3 week course of doxycycline . This is the link to the UK NICE guidelines and you may have to be rather firm in asking for this from a GP - there will be ignorance around point (4) above: https://www.nice.org.uk/guidance/ng95/chapter/Recommendations
7. Most Lymes sufferers will have perfect blood profiles and nothing medically will appear wrong
8. There is one consultant AFAIK in the country who deals with Lymes , Dr Jack Lambert in the Mater. He is only available to see privately, waiting list 3-6 months. You can self refer in with the right blood test. https://www.iddoctor.eu
9. Before taking you on as a patient, his practice requires a 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, about €700 and send Dr Lambert the results. He will then admit you as a patient or not. These tests are easy to order and very high tech.
10. 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 treatment regime, reduced stress, improved diet, herbal remedies etc are part of an overall treatment plan which you have to generate yourself. These work well.
|Justin O'Keeffe||Mar 18 2023, 2:20pm||I know this post is 18 months old, but it has taken me that long to start to turn the corner from Lymes and am now back jogging & hope to get back to Imra runs this year|
So, if anyone has or even thinks they have Lymes, my offer to just listen or maybe talk through the recovery process still stands. It's been a slow & little frustrating process for me , and there is so little help available out there. Please let me know if I can help.