Lyme Disease – Any experience of it?

Looking for some advice from stw’ers as Lyme Disease is looking like a possible cause for the ailments I have been suffering undiagnosed for the last 3 years (arthritis, fatigue, dizziness, etc)

My question is whether anyone has had similar symptoms to these and a positive diagnosis, what were the stages you went through, treatment and so on.

Also, did you find a Lyme literate doctor/specialist who took on your case, I might be going private for this (benefit of having a partner working for a large medical insurer). If there are any recommendations in the South East I’d be happy to hear them as good Lyme literate docs appear very hard to come by.

Cheers, flip.

http://en.wikipedia.org/wiki/Lyme_disease

A couple of friends of Mrs M’s have had it relatively recently. Will ask her what the symptoms were and if they had any specific treatment

Flip – a friend of mine has had serious troubles with lyme – post your e mail and I’ll put you in touch with him.

Cheers Realman, read most of the info on Lyme now – particularly interested in anecdotal experiences and/or recommendations for docs in the South East.

Cheers all. Email is andrew_brough(at)hotmail.co.uk

http://www.bada-uk.org/

I had it last year. I told the Doc thats what I thought it was and was sent for specific blood tests and within a month was fine again. I think if they know what to look for its easy to cure with anti biotics.

Horribly horribly couple of months when I had zero energy and my legs were pretty much constant pain.

Email if you want any advice.

I had zero energy and my legs were pretty much constant pain.

Sounds like a normal ride actually

Another chance to show the tick we pulled off the dog last week?

Rich – have experienced a period very much like that 2+ years back.

I think the diagnosis was missed at the time, much better now thankfully, but have struggled to get back on the bike and have now developed arthritis in my knees at 28. Rheumatoid arthritis has already been ruled out, which I am partly thankful for 😉

Nice tick. Kind of reminds me of a raisin

I had one of those mystery rings so went to the doctors and they sent me to the hospital and they gave me a course of antibiotics. I would just ask the doctors to get referred to the correct department, Infectious diseases?, of the local hospital as they will be as good if not better than anything private.

Bad looking tick!! I caught Lymes two years ago, the report cases in Devon went up 3 fold, – after a ride on North Exmoor, they were tiny things (deer ticks apparently) that I did not notice for a day, then asked my wife to pull out what I thought was a thorn, she then found 13 of the little bug@**s! I had the start of the rings, got weak and wobbly etc I was put on a massive dose of some thing – icillin – almost did as much harm as the Lymes. All better after a month or so but as I understand it, it is like malaria and you never really get rid of it.

They have a straight fwd blood test for it but have to be looking for it. Good luck

snip to the correct department, Infectious diseases?, of the local hospital as they will be as good if not better than anything private.

If you’re fantastically lucky but I wouldn’t put money on it. Try here:
http://www.lymediseaseaction.org.uk/

or here:
Eurolyme (on Yahoo)

I had it when I was younger; it was apparently horrid (I can’t remember I was very young).

My Grandma has it very badly and has had for about 12 years. If you need any serious information I should be able to get it for you as my Grandad is a retired doctor and has dedicated the rest of life to curing his wife. He has huge amounts of research from Europe and the USA and has done a lot of stuff himself.

If you catch it in the first few months you can generally cure it with antibiotics, but if it takes over a year to identify it there are chances it will come back in your later life. It will attack the nervous system and is very hard to cure. They reckon a lot of people diagnosed with ME actually have Lymes.

If you want I can send you the e-mail of my Grandad and you can talk to him directly. He is very qualified (ex surgeon that also worked a lot with aids sufferers in Africa). He will probably be able to diagnose and then recommend further action.

Thanks for everyone’s thoughts and experiences. Cheers all, appreciate it.

Alwyn – that is very kind of you, thanks. I hope he wouldn’t mind me dropping him an email. I wish all the best to your Grandma.

My email address is andrew_brough(at)hotmail.co.uk

have a read of this…

http://www.songofthepaddle.co.uk/forum/showthread.php?t=8773&highlight=lymes

http://www.songofthepaddle.co.uk/forum/showthread.php?t=8773&highlight=lymes

Depressingly that pretty much sums up the usual scenario. Forewarned is fore-armed and all that..

I had it back in 2007. Luckily got treated reasonably early with antibiotics. Very unpleasant period of my life really, took the best part of a year to feel ‘right’ again.

I never got a positive result from the “Western Blot” test that is used to test for Lyme in the UK but it’s notoriously unreliable anyway. I was treated based on clinical diagnosis and had the classic Erythema Migrans rash around several of my bites.

Good luck with it!

spent most of yesterday in hospital, turns out I have fallen victim to the little bleeders ( no pun intended ) and as a result I have enough meds to make me rattle over the next week or so, Been advised to be on the look out for lumps, cold and flu symptoms and various other things, and sign of these and I have to report straight back to hospital. on the up side I do appear to have developed Chris Hoys thighs sadly only due to the swelling though 🙁

Bad news IrishAl, sorry to hear that.

A certain amount of paranoia has now descended upon me.

I have read the above (and especiall the song of the paddle link) with much interest, as I have suffered the exact same symptoms for the last 4 years or so.

I know a lot of the symptoms are common to other illnesses but I have never be given a satisfactory answer out of the Docs to this day.

Have been “tested” for Lymes twice but negative both times.

Thankfully I am still able to ride my bike (although some would dispute that :-)), although no where near the level I used to and have to be very careful not to overdo things otherwise the symptoms and primarily the swollen glands/sore throat & fatigue return.

Thught I already linked to this but I can’t see it now

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

TJ – I have been in contact with Bruce and his info has been really helpful – thanks for sorting that out.

Fieldmarshall – I have joined a group called Eurolyme, it is very informative, I would suggest joining and looking for information on a Lyme literate doc.

By all accounts the tests carried out by the NHS are very unreliable. Unfortunately they are the key to getting treated – unless you seek out a private Lyme specialist, which appears to be what a considerable number of patients end up doing.

Flipiddy, thanx for the lead.

I may follow it up, or though to be honest, until these recent posts had started cropping up, I was pretty much resigned to my fate and have just been trying to get on with a normal life as much as possible, as my GP seems somewhat disinterested.

My symptoms are nowhere near as bad as they were three years ago when I had 4 months off work and I am now better able to spot the signs and back off early. Although I sometimes still get caught out when the symptoms hit me out of the blue.

Hope you have success in finding a specialist and wish you a speedy recovery.

FM, Cheers

It’s a fairly normal pattern for the GP to run out of options and lose interest if nothing shows up on the radar (which is not uncommon). There are plenty of long-term Lyme sufferers who have had a Negative result with the Western Blot test that the NHS utilise whom have gone on to test Positive with more reliable US methods.

I don’t claim to be an expert by a long shot, but this is the feedback I’m getting after a good deal of research.

Hope I don’t sound patronising but it’s easy to resign oneself to a long-term illness but there are long term implications for not treating Lyme Disease so I reckon you owe it to yourself to take action when you can.

All the best mate..

This is all sounding very familiar. I’ve now known 2 people who have had undiagnosed Lymes really mess them up – one of them only diagnosed after 10 years of ME diagnosis left her in a wheelchair on oxygen. Huge courses of antibiotics have helped stop the decline but there has still been a lot of irreversible damage done. The standard UK test and the ignorance of much of the medical profession is another recurrent theme. The 10year+ case was eventually sorted through private specialist diagnosis.

this is the best i could do. looked for a lime, then an orange. didn’t find either.

Back a few years I brushed past some ferns on the Telegraph trail on the North Downs- result two Horse fly bites on my ankle that turned very nasty and the redness spread up my leg rapidly. Alot of combined antibiotics and even now I’ll ride in full length tights under my baggies. Just wont risk it.

All the best.

A friend of my folks, a Cellist and folk singer was bitten by a Tick and contracted Lymes disease whilst on holiday in Germany. She was unaware of how serious it was and failed to contact medical elp. Sadly by the time she did, it was too late and the known treatment had no effect. She died.

Hey all,
Lyme is a pretty common concern here ( I’m in Connecticut about 60 miles from the town of Lyme, here in the collonies). The most common indicator of the disease is the circle rash around the bite, and the high fever. Health department here will actually test the removed tick for Lyme if you send it to them. The test for the disease in people is only slightly better than useless because of the false results. My doctor only treats patients with symptoms. Some doctors here treat every one who’s been bitten with antibiotics, even without a positive test or any symptoms because the risks of over-medicating are so small compared to the complications of lyme going untreated. It’s generally accepted that a tick needs to be attached for at least 24 hours to transmit the disease, so a good scrubbing down after a ride followed by a good look over the next morning seems to be the best defense.

Isn’t Lyme’s Disease meant to be really rare.. I am getting worried by the number of people posting on here who seem to have contracted it…

I guess you are more at risk if you do more outdoors activities , but even so?