[Closed] Lyme disease - some new research shows treatment resistance.

Worrying report, but…….This is my tempting fate comment…. I seem to pick up ticks like a …well loads. Over spring summer at least one a ride. One occasion i fell into heather and had 20 that night. I kid you not, they like me. A lot.
So over a year, dozens and dozens. Over my riding life, who knows.
I do make a point of checking and removing post ride, but I’m not OTT about it. And still here, never had lymes that I know of.

So yeah check yourself out and remove them but I don’t buy the OTT worries some folk seem to have about ticks (not saying that’s you OP, but some folk seem to be completely paranoid about even one tick bite).

I do make a point of checking and removing post ride, but I’m not OTT about it. And still here, never had lymes that I know of.

Do you live in an area with a high occurrence of Lyme disease?

I'm not sure if I do Kerley, I'll need to find out. Similarly to bri, I stopped counting at 12 on Sunday, after venturing into the heather in shorts briefly.

For the record, of about 100 outdoor instuctors and 5 years across the Highlands, we had 4 cases of Lyme's, one of which is affecting the individual 10 years later.

It is a very real thing to be aware of, particularly in some areas.

Obviously instuctors were out all day every day, further increasing the likelihood.

I’m not sure if I do Kerley, I’ll need to find out.

Yes, it obviously has a big bearing on risk of getting it!. I live in New Forest which has a high rate but I don't ride or walk through high growth. Pulled one of the dog a few days ago though.

Interesting wasn’t aware of areas of greater prevalence. Such a thing as a map or stats showing higher risk areas?

Bloody hell, was just reading about Matt Dawson, I never knew that.

I'm also a tick magnet. 22 after one particular bivvy.

I've also had Lyme twice.

I wear Smidge now.

+1 on Smidge - we put on ankles and hands as well as head...

Another for Smidge - prevention rather than cure..

Worrying report, but…….This is my tempting fate comment…. I seem to pick up ticks like a …well loads. Over spring summer at least one a ride. One occasion i fell into heather and had 20 that night. I kid you not, they like me. A lot.
So over a year, dozens and dozens. Over my riding life, who knows.
I do make a point of checking and removing post ride, but I’m not OTT about it. And still here, never had lymes that I know of.

So yeah check yourself out and remove them but I don’t buy the OTT worries some folk seem to have about ticks (not saying that’s you OP, but some folk seem to be completely paranoid about even one tick bite).

would it be reasonable to make an STD analogy? Some people are unlucky and pick up disease on their first occasion and others have been wildly sowing their oats seemingly without ever getting infected.
- if you take precautions you reduce the risk (in the case of ticks quick removal reduces risk substantially)
- lots of people go out but not everyone is as "lucky" at picking up potential vectors.
- depends on the prevalence in the area
- you may have got infected without knowing
- you *may* have some natural immunity
- the infection vector may be more effective at some times of lifecycle
- you may have just got lucky

I have used smidge and anecdotally that probably reduces my 'collection' rate compared to others in the same group/area/activity. But in general, being a pasty white scot who's complexion is properly described as "blue" I tend to keep my body covered more than most.

Data is often aggregated at quite high levels - so e.g. "the highlands" is often all modelled as being similar risk - this is probably too simple: https://royalsocietypublishing.org/doi/full/10.1098/rsif.2016.0140

Went bikepacking round Corrour / Loch Rannoch a few weeks back. My riding pal found a tick, which 2 weeks later looks like this.

View this post on Instagram

Docs, anti-biotics.

Has anyone managed to get a private test for Lymes disease? I'm very keen to do this, no idea how.

Pedant mode;

Lyme[s]s[/s] Disease

Thank you for posting this CZ. Do realise that folk on here will be sick of me banging on about Lyme disease so will try to keep it brief.

With a bite from an infected tick you basically have a short window in which to treat. The NICE guidelines are here:

https://caudwelllyme.com/lyme-disease-info/what-does-the-nice-guideline-for-lyme-disease-say

If you miss that window then it can become extremely difficult to treat and there is no one size fits all. People will experience vastly different symptoms and it should be mentioned that co-infections often appear and really becomes a multi-systemic infectious disease. At this point you will need to seek private treatment or DIY, the NHS can not help you.

It does become interesting when one compares symptoms with Covid. Recently there was an article in the Sunday Times about long Covid and included a list of symptoms. Well, I could identify with around half of those. In the support group I belong to, there is a fair number of folk with autoimmune conditions.

There used to be a Public Health England document that showed areas with high numbers, unfortunately am unable to locate.

Private testing, testing is problematic as there are no accurate tests so Lyme disease should be diagnosed clinically. Not everyone has an EM rash, not everyone actually sees a tick or knows they've been bitten.

I would suggest that @jimmy reads the link I provided. Do shout out if you need more info or links.

Perhaps not a major concern to most parts of the UK at the moment but, a couple of years ago, I came across this article in the Guardian reporting encephalitis being spread by ticks in some parts of S and SE England. I haven't looked into this any further detail but it appears one to watch.

Guardian article

@bonni that had been happening to people before the authorities acknowledged it.

The NICE guidelines, published in 2018, acknowledge that they're lacking for late-stage Lyme and that more research is needed. Nothing has happened.

I agree that it is an under researched and under actioned risk.

A colleague has been incapacitated by undiagnosed Lyme disease. NHS was a waste of time and they have had to go private, I think they got a test through Lyme Disease UK.

Such a thing as a map or stats showing higher risk areas?

I'd be interested in this too as AFAIK I've never had one in my life, completely the opposite experience of bri-72. I'm north west England based and rarely venture out of the region. Are they just not very prevalent here?

I did a Google search for uk borelia map, quite a few maps found, some in scientific papers. A fairly useful one here; https://www.kaysmedical.com/uk-people-are-at-risk-of-lyme-disease/

Interactive tick map relating to dogs:

https://www.msd-animal-health-hub.co.uk/KBPH/pet-advice/parasites/map-of-tick-risk

I think they got a test through Lyme Disease UK.

They don't offer testing but can signpost to the NICE guidelines and explanation of the different tests.

There will likely be a way to beat it even of it is bacterial perhaps not right now but in the future!

Before antibiotics existed there were viruses that killed bacteria (and still are) these are Bacteriophages (phages).

Phages fell out of favour because of antibiotics, they will be what saves us (I hope).

Wish I was a scientist!

I’d be interested in this too as AFAIK I’ve never had one in my life, completely the opposite experience of bri-72. I’m north west England based and rarely venture out of the region. Are they just not very prevalent here?

I've asked friends who've ridden the Peak, Cheshire all their lives (including some mega mile merchants) and they've rarely if ever got a tick round here. I mean you could get one tomorrow, so need to be aware, but I think it's pretty low incidence in this area. You'd get them in the Lakes, though.

Deer are a major carrier and I don't think I've ever seen a Manc deer.

I have found several ticks on me, one from aviemore gave me most Lyme symptoms but i tested negative (coincidence maybe i had a virus at same time) however a good riding mate had it from one in Mugdock and was on full antibiotics for some time.

Nasty little buggers no mattet what. Carry tweezers in car and riding bag plus smidge

There will likely be a way to beat it even of it is bacterial perhaps not right now but in the future!
Before antibiotics existed there were viruses that killed bacteria (and still are) these are Bacteriophages (phages).
Phages fell out of favour because of antibiotics, they will be what saves us (I hope).
Wish I was a scientist!

You'd likely have a brain injury from banging your head on the desk - getting any sort of permission to use phages on humans in the UK is somewhere close to impossible. Take a trip to, say, Georgia (or Poland) though and it seems every bugger is at it

(oh, and tick-borne encephalitis is not neuroborreliosis - though both are very real)

however I liked the analogy with STIs and would suggest extending it to include "some people seem never to have had an STI until they start to show tertiary neurosyphilis - and that's a bastard"

(Few years ago they did tests on New Forest forestry workers - all of them tested +ve for Lyme exposure (except their boss); virtually none had reported any symptoms and if I remember right, none of them had been treated)

I tend not to go walking in areas of heavy undergrowth, and I haven’t ridden for years, but I’ll get some Smidge, just in case. The interactive map was instructive too, I see the whole of the South-west is listed as high, so I think it might be advisable to take some sensible precautions.
I have to say, Lyme Disease is something I don’t really think about too much, but reading that article, it occurred to me that it never hurts to raise awareness of it every so often, especially now more people are starting to get away from home and getting out into the countryside.

tthew- there’s plenty of deer about near us in Darwen/Bolton and you’re not too far away I don’t think? I found a tick in the crook of my elbow recently after a run in the Lake District. I was a bit surprised as I had a long sleeved top on! Our dogs are getting loads of ticks at the mo. Luckily they have regular flea and tick treatment so are better protected than we are.

Today I received an alert via TheyWorkForYou.

Lord McCrea of Magherafelt & Cookstown: "to ask Her Majesty's Government what recent (1) research they have commissioned, and (2) investment they have made, relating to a cure for Lyme disease".

Lord Bethell The Parliamentary Under-Secretary for Health and Social Care: "the Department funds research through the National Institute for Health Research (NIHR). The NIHR has no current active projects into Lyme disease. The NIHR Health Protection Research Unit on Emerging and Zoonotic Infections has undertaken work on the understanding of and treatments for Lyme disease, including looking at incidence of the disease in England and Wales".

So there you have it, naff all being done.

In September 2019, SLDTRL, together with nine other beneficiaries from six other European countries, embarked on a 3.5 year European Interreg project ‘Tick-Borne Infections in the North Sea Region’: https://northsearegion.eu/northtick/ .  This will include: developing, optimising and implementing new microbial diagnostic tools for the common and emerging new tick-borne diseases; improving awareness of tick-borne diseases; encouraging more targeted antibiotic treatment and better application of diagnostic tests, all through a multi-disciplinary and capacity-building approach.

SLDTRL is the Scottish Lyme Disease and Tick-borne Infections Reference Laboratory. Based in Inverness, it's where they carry out LD tests for patients in Scotland.

Partly off the back of this thread, I've just spoken to my GP about certain symptoms I've had since a trip round the Highlands last month - notably a swollen lymph node right next to where I had a bite. Wasn't confirmed a tick bite and is in a hard-to-see area with no residual signs, i.e. no rash. But based on where I've been, symptoms and my pal's experience, have been prescribed anti-biotics and getting a Lyme blood test next week. Pretty happy with the GP's response, pretty much a "lets not take a chance" attitude.

@jimmy please take a look at this link concerning testing. It's not simply a case of 'positive' or 'negative'. Good that your GP is listening and being pro-active.

https://caudwelllyme.com/lyme-disease-testing

@cinammon_girl thanks. The doc recommended a follow up test in 8 weeks time and was quite specific that he'll be clear on the purpose for testing. Fingers crossed. He seemed switched on to it.

It's not just deer territory you need to worry about, but sheep fields as well. In parts of West Sussex there are hot spots. I picked up a tick in a sheep field while running in shorts. I didn't know about the tick, but i did get the tell-tale bullseye rash which is a cardinal sign for early Lyme infection:

I got a couple of courses of antibiotics to ensure got no symptoms.

Will be getting me some Smidge.

Also worth making sure your dog is on a tick specific antibug med if you are regularly out in the fields.

@jimmy - I was lucky with my first infection as my GP was a keen hill runner and so had a taken a personal interest in Lyme. Second time was up here in Aviemore where the GPs are similarly switched on.

Please be aware that Exmoor has areas of high concentrations of ticks. If you stick to main trails you will be fine. Any trails where you will brush against the bracken will be a danger. Oh and pick your pee spots with care.

@jimmy guessing your GP will carry out the ELISA test. Do bear in mind that testing can not show if an infection has cleared but the guideline is clear that further antibiotics can be given.

This link gives info on taking doxy and definitely take a probiotic. Bio-Kult Advanced Multi-Strain is an option and available from the mighty 'A'.

https://caudwelllyme.com/lyme-disease-info/tips-on-taking-doxycycline

Best of luck and do keep us updated.

@scotroutes thanks for that which I'd totally forgotten about!

The Lyme Resource Centre in Scotland and specifically Dr Lambert, a Scottish Infectious Diseases doctor who works out of Ireland, has produced a series of vids called "Small bites for GPs". There's plenty of other vids too.

https://www.youtube.com/channel/UC4lLRqrdD5sAi1xt0EIZdbQ/videos

Just spotted this on UKC.

Some good news on Lyme disease vaccines. Two in the making and hopefully getting offered out in 2023/2024.

https://www.google.com/amp/s/www.timesunion.com/hudsonvalley/news/amp/new-shot-vaccine-lyme-disease-in-development-16139259.php 35

https://www.biopharma-reporter.com/Article/2021/03/08/Valneva-and-Pfizer-start-new-Phase-2-study-for-Lyme-disease-vaccine-candidate 32