well it turns out that after a few years of proper wierd health issues
that i have lyme. 🙁 F**@%~@ hell.

anyone on here got it? and how you doing?

i got the tick bite at the national marathon champs at margham park back in 08 but it stayed symptom free for about a year.
if you get bitten folks take seriously.

three months of antibiotics that may do nowt start today.

Lyme Disease – everything you wanted to know (and stuff you wish you didn’t)

cheers tj.

Sounds nasty. Never knew it could have a year incubation though.

*gets naked and checks self*

It’s one of the few things I really worry about. But then I usually get between 10 and 20 ticks per year.

at least you have it in mind druidh i think this is half the battle.
i dont blame my gp for missing it as it is rare thing.
something i can add to all the info that TJ added is that i am being looked after by a guy from cardiff who has worked with lymes sufferers for twenty years. top bloke.

well it turns out that after a few years of proper wierd health issues

For all the hypochondriacs out there, myself included, define weird.

druidh, for **** sake mate. If you get that many in a year wear tights.

Seriously. Dont **** about. Just hydrate more.

I really don’t think its worth the risk.

Come on. Seriously.

I’d suggest you get along to EuroLyme for advice, to register and add to the number of suffers. Plus it helps to meet with others if there’s a group in your area.

http://health.groups.yahoo.com/group/EuroLyme/

And dont name docs on the net.

jamie it started with a wierd groin injury that seeemed to have a life of it’s own then it progressed to a right side parathesia then all kind’s of weird head stuff pressure,tingling ,numbness etc. and the mother of all fatigues.

cheers slowoldgit i am on that already.

why the no doc names?

Thats how i found the guy.

@ nonk – suggest you ask on EL, long story. See if you can get checked for co-infections as well, the NHS is blind to them.

righto man thanks for the help.

@Jamie – weird is as good a term as any. It’s my understanding that the Lyme bacteria evades your immune system and moves around your body It may well find your own particular weak spots. It likes collagen, the protein that makes up tendon and cartilage, that’s two areas where it hit me, and your nails go funny. Your body attempts to fight it, hence the night-term sweats. I heard of a bloke who kept throwing up all the time. The lyme-produced toxins give you headaches, and cause all the brain-fog stuff. There’s lots more, listed on eurolyme.

Then there’s co-infections.

That’s an extremely good link that TJ has given you. Every mountain biker (and their Doctor) should read it. Lyme disease is massively under diagnosed in the UK. One problem is that the symptoms are vague, when your doctor examines you (unless they are lucky enough to catch the rash and, if they do, not misdiagnose it as a fungal skin infection) there is little to see. The biggest hurdle is actually thinking of Lyme and considering it in the differential diagnosis. Most Doctors will have been brought up thinking of Lyme as a predominantly American disease associated with deer. If you ask your GP to name a tick borne disease, spread by deer in the USA, they’ll come up with Lyme quick as a flash. However, if you tell your GP that you’re a mountain biker and you’ve had vague symptoms of fatigue and malaise for several months, they’ll (rightly) consider some of the more common causes, but most will not even consider Lyme as a viable diagnosis. This situation is changing, though. The medical community (and their educators) are beginning to realise that this condition may be much more widespread than had been previously recognised and I know that the guy in Cardiff has helped to make this so by raising awareness of the condition. As well as your Doctor, you also owe it to yourselves to be aware of this condition so that you can at least help your Doctor by giving a meaningful history and reminding them that you participate in a sport where tick bites are common.
By the way, I’d just like to pick up on one point mentioned, or alluded to, in the link above. Your Doctor doesn’t need to wait for a serological result before starting antibiotics. Taking antibiotics doesn’t preclude later testing.
I had a tick bite last year (and the characteristic rash). I couldn’t tolerate the Doxycycline prescribed for me and the nausea was unbearable by day 3 (couldn’t keep them down). If you are prescribed them, take them with food, because it makes it slightly better. The key to Lyme is early recognition and treatment. You can also help yourself by removing the ticks properly with a proper tick removal tool (a special tweezer). If you don’t know how to do this, make it your business to find out. We’re getting to the time of year when the blighters start hanging off the undergrowth waiting to latch on to your limbs folks!
As long as you know how to remove ticks and your Doctor recognises it and knows how to treat you, you have nothing to fear and don’t let it spoil your enjoyment of the sport.

name edited by mod as requested above.

how did you treat it tinners?

guys, there’s been a request to not name the doctors involved in treating Lyme’s to the mods, it seems reasonable after requesting an explanation, by all means keep the subject/discussion going but go off line for more detailed information such as doctor’s names ta 🙂

nice one i missed the chance to edit it out of my post.

I had several weeks of Amoxycillin. It’s a second choice antibiotic, and I was treated within 48 hours of the tick bite. Your Doctor will probably liase with an expert before treating you, but Doxycycline seems to be the preferred choice of many. If you have longstanding Lyme, it’s likely that you will be referred for specialist supervision (or that your GP will probably consult with an infectious diseases Doctor at the very least).
I couldn’t keep anything down (tablets included) on Doxycycline, so there was no option than to switch to something else in my case.

right thanks.
think i have had doxycycline before so i should be reet.

there’s been a request to not name the doctors involved in treating Lyme’s to the mods

I’ll second that. I only mentioned one person’s name because he has been involved in raising awareness. I’ll also add that you should not rely on what I or any website has said in terms of the detail of treatment. I’m only relaying my own experience of being treated and it could be a load of cobblers for all you know. You should make your GP your first port of call and if you’re looking elsewhere, bear in mind that anyone else may not be safe, qualified or reliable. The most important thing – and the reason for my contribution to this – is that you are aware of Lyme as a possibility and can remind your GP that you participate in a sport where Lyme is very much a possibility. It takes a face to face consultation with a properly qualified Doctor to properly deal with your own problem and to exclude other, equally plausible, diagnoses. Don’t rely on Internet diagnoses, other than to raise your awareness of it.

like Druidh I pick up 10-20 ticks a year. Come March/April, the Nymphs are about and the insect repellent goes on.

Its always at the forefront of my mind, given how poorly understood it is by GPs in the UK.

Hey, nonk sorry to hear that, road to recovery starts here and all that. 🙂

It’s covered in the links above but it’s always worthwhile re-stating that that your chances of contracting it are also greatly reduced if you remove the tick the right way and promptly.

http://www.lymediseaseaction.org.uk/information/tick_removal.htm

DON’T squeeze it, burn it, or use vaseline or any other ‘chemical’. It will die and disgorge it’s contents back into your blood stream. Remove them using the purpose made tool or tweezers, pulling firmly but gently with a twisting motion.

You can get ‘tick hooks’ from most vets, they work like little claw hammers. Easy-peasy, designed for the job, why use anything else.

I know 3 people who have had lyme – I was tested in 09 and was ‘negative’ after fighting tooth and nail for a test ( had ticks on me / dog had loads from q’tocs / exmoor / cheddar and wales – no obvious bite mark BUT that doesnt mean much – have had plenty of odd ‘ horsefly ‘ bites – and I have cycled across usa / canada in the past ) but I was completely and I mean completely floored by something for 5 mths – extreme tiredness / brain fog / aches and tiredness and ultimately a bout of depression.. I had medication / alternative therapy stuff / better diet / gave up work. I got better to about 80% of previous health – docs labelled me PVFS / CFS as ‘ couldnt be Lymes ‘…

I am not convinced what I had – now the slightest cold / man flu truely ruins me….

Take precautions – I ride / hike in leggings – use repellant and carry a tom o ‘twistet. I am evangelical in telling riding buddies re ticks – they think its all a big joke. ITS NOT

paul

Tick bites are unavoidable no matter how well you cover up. There’s always some that will find a way in. Like Druidh I get many in a year but I always find them quick. Often I actually feel them bite or I get an itchyness if they’re already attached. Always check yourself or get someone else to when you get home and put your clothes straight in the wash. I’ve been bitten by ticks in my house before that have just been hanging about on clothing or footwear.

Good luck with the medication nonk. It’s not always easy to get a diagnosis but at least now they know what you’ve got and can hopefully do something about it.

lyme testing is difficult see here but this is worth noting:

General practitioners and specialists frequently contact the LBU to discuss options for investigation of patients with difficult clinical presentations, or to discuss treatment options. The LBU has a range of tests that can be applied in cases of diagnostic uncertainty. Staff members have contacts with experienced physicians in a variety of specialties, including infectious diseases, neurology, rheumatology and paediatrics, based throughout the country, and they frequently recommend consultations with appropriate specialists from this network.

(and a bit controversial):

I was once at a talk by a US geezer who was head of the group that wrote a statement on chronic lyme disease (which they concluded – roughly – didn’t exist and/or wasn’t treatable)

He’d had threats made to his health & maybe life as a result, as well as a concerted effort to get him sanctioned by the US medical authorities

Can I just point out that the link I gave was written by slowoldgit of this parish. Its his misfortune to get the disease and have to do all the research but its our good luck that he has done so and given us such a good summary of info

Really sorry to hear that, nonk. I spotted this post via a google alert and I’m a bit disappointed in this statement “i dont blame my gp for missing it as it is rare thing.”
It isn’t really rare, it’s just constantly missed:-( If you’re honest, do you think your GP would recognise it in anyone else, or just think you were a one-off. I suspect the latter!

There is a lot of stuff being done to raise awareness, including in Parliament, but for some reason it’s always played down.

I have Lyme (from 2004) unable to get rid, but I’m one of the lucky ones who isn’t debilitated by it (yet anyway). My partner (regular mountain biker) wasn’t so lucky, was ill for several years before diagnosis and had 2 full years of antibiotics before any difference was noted. Thankfully he is now active.

I am helping on the BADA-UK http://www.bada-uk.org stand this weekend at the Outdoor Leisure Show NEC (stand 102) 25th – 27th Feb. If anyone is going, please make sure to visit, pick up some leaflets, buy some extra tick tweezers, etc. Help spread the word (I’m sounding like an evangelist too, that’s how it gets you!:-))

Take care, you are in good hands now, but be prepared for it to take quite a while and don’t give up.
Jan

I have two friends who have had Lyme Disease and would not wish it on anyone. It does seem that Avon Skin So Soft may act as a reasonably effective repellent. We use it against midges, but last year a friend of mine got about 12 ticks on one ride and I picked up 2 – my first ever. We’ve done the same ride 3-4 times since with SSS on and not picked up a single tick. Did plenty more rides through thick heather and bracken last year but always used SSS and didn’t pick up a single tick.

Not exactly hard evidence but SSS is cheap and harmless so worth a try

Very interesting thread.

Don’t often ride in areas where you get ticks but just bought a pair of tick removers for £5 from
http://www.bada-uk.org/products/tickremover.php
to add to my ride pack.

Hopefully the best £5 I’ll ever spend and never use.

GL with the recovery

That HPA link that scaredypants posted has this interesting sentence…

It is rare for patients to have negative antibody tests in longstanding infections. Laboratory diagnosis in this country follows an internationally recommended two-step approach, using commonly available antibody screening tests as a first stage, followed by immuno-blotting (western blotting) of samples that give reactive or equivocal results in the screening tests.

OK, I’ll freely admit that I’m way out of my depth here, and a little biased. If they define infection by positive antibody test results, isn’t that statement a teensy bit circular?

Just asking like, perhaps someone could explain to me, ta.

Hi Dave, forewarned is forearmed n all that. The little buggers aren’t just in forests, though, they can be in country parks, even your own garden, the side of the road, anywhere there’s a bit of long grass! It’s thought that quite a lot of different animals/birds help with the distribution:-(

And I’d just add that the immature ticks that mostly live in leaf litter bite too. The result is a tiny black speck on a raised red spot. It looks exactly like you pricked yourself on a thorn. Not that I want to worry anyone.

Hi slowoldgit. The bit that’s flawed is “internationally recommended”. It’s all political. The HPA follow the IDSA guidelines, which have had holes picked in them repeatedly. We need our HPA to follow ILADS guideines, that a whole different story.

The laboratory test manufacturers state in their own literature (and at the bottom of their test results, I believe) that their tests aren’t accurate and shouldn’t be used to prove or disprove Lyme Disease, diagnosis needs to be on a clinical basis. Despite that, what we often find is that practitioners are advised that if someone has a positive test it is likely to be a false positive, but if someone has a negative test it must be correct.

It’s all a bit stupid.