UKH

I’ve just completed another course of doxycycline and 4 weeks later am still having issues with headaches and ear pain. This is 10 years after infection, done all the tests and no antibodies detected… consultant reckons next step is a lumbar puncture to take samples of spinal fluid to see if residing there, anyone else had experience of this? Had mri ct all sorts of tests to rule out anything else

'Anything else'?

Why do your symptoms make you think it's Lyme? Rather than anything else? What musculoskeletal investigation have you had?

The bullseye rash was a bit of a giveaway 

That means you had Lyme, ten years ago. It doesn't necessarily mean that these symptoms are the result of Lyme.

I thought chronic Lyme required a more prolonged treatment; how long was the course of Doxycycline?

Hope you can find a resolution to your problem.

ps dislike is not mine.

You're very fortunate if you have an NHS consultant/Gp who believes in chronic lyme, have had "mri ct all sorts of tests"  and is prepared to do a lumbar puncture. The usual response in my experience is that having had the initial course of doxycyline  any subsequent problems can't be lyme and you probably have fybromyalgia, or a functional neurological disorder. In other words they don't know and fob you off ! 

Yes I’m fortunate with my current consultant but it’s been a long journey to get someone who understands the nature of Lyme. I wasn’t really wanting to enter a discussion of symptoms treatment etc but was asking if anyone had the lumbar puncture and what it was like

I went to the hospital with a bulls eye rash round a clear bite mark. The consultant said it was just a bruise from a bite and would do nothing else. I asked if another could check it. He left and came back with another guy who looked pissed off. He took my arm and looked, said "it's a bruise" and quickly left the room. I left the hospital very worried. A stalker mate said its definitely a bulls eye rash and if the hospital wouldn't help I need to try other means. I booked an appointment with the local surgery. I showed it to the GP. She looked at it without me saying anything. She asked "Do you know what this is" I replied yes but more importantly I hoped she did. To my relief she did and gave me the prescription I badly needed to get.

Apologies for misreading your post. I'm certainly not a 'Lyme denier'; I know it can have long term serious complications, mostly through reading accounts on UKC, including the stories of ignorance and poor treatment within the NHS.

Hope the lumbar puncture goes well.

I take two tablets, one for gout and the other a blood thinner, since being on these ticks drill into me and die, no sucking just stuck in dead I walk a lot through bracken and long grass with our two dogs which we treat with frontline spoton it doesn't deter all ticks but we find an occasional one that has  fallen off, dead but gorged, so why do ticks die on me?

Being on warfarin ("rat poison") myself I've long wondered if it causes issues for anything that bites me.  I do hope so. 

Still never had a tick despite doing some walking this weekend through some very brackeny areas.

I too have never had a tick bite - and don't understand why - in fact I've never even seen a tick in the UK.

I'm on apixiban (another anti-coag) but that's only the last 2-3 years. I have been careful going through bracken for many years now, but there were many more years before then that I wasn't aware of tick problems so just plowed through regardless of what I was wearing.

I still get bitten by other stuff ☹

You would get better tick protection for the dogs using a more modern POM-V ectoparasiticide. Also there are growing concerns about fipronil (and imidocloprid) getting into the environment, not just from agricultural use, but also from pets with many tons of product estimated in the environment from dogs and cats, so there are other good reasons for considering alternatives

This. Dogs simply do get ticks, it is part of their job description. Just remove them mechanically after a walk. Poisoning the environment to keep your pets happy is rather perverse.

CB

I notice you are in Germany. A couple of friends that have gone back to Germany due to Brexit report that vets are despairing of the abandonment of parasite treatments by large numbers of pet owners, with huge problems with scabies, demodex, fleas and tick based disease. Problems that are now relatively uncommon in the United Kingdom. There is a balance to be struck. Ticks do carry some horrible diseases for dogs. We do however need adequate environmental impact assessments for these drugs and this should not be found out retrospectively! 

I got bitten last September, remote GP appointment so I sent him a photo of the textbook rash and he was insistent that I had COVID. I pointed out that I'd been in an area with lots of ticks (found 30 on my jacket/ trousers one day, not the day I got bitten though!) and asked what the great big bullseye shaped rash was from if it wasn't from a tick bite. He duly looked up the symptoms and told me to go and get a course of anti biotics...

When I got back from the hospital I did a lot of google work and you tube and it scared the sh#t out of me. There was one woman that had Lyme disease and the doctor asked "have you been to the highlands" when she answered no he told her there was no chance it was Lyme disease. Yes it was. I think there is still a learning curve how big this is going to become or has arrived already.

BADA have been trying to educate GPs for some time. I'm glad to say that my GP seemed to be aware of the threat when I had some neuro problems after getting tick bites; did bloods and prescribed ABs immediately. No bullseye, but that has a very high false negative rate. Did second bloods some time later, as that also has a pretty high false negative rate.