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

There have been some posts lately about tick bites and the risk of Lyme disease. This is what Lyme has done to me…
For the last 18 months I’ve been too sick to work, doing too much would wipe me out for two days, and at my lowest ebb, walking fifty metres uphill was doing too much. I had a diagnosis of chronic fatigue syndrome (or ME if you prefer) which was, I thought, the end of an active lifestyle. At this point one finds that Incapacity Benefit pays £63 per week, and mortgage insurance covers the premiums for two years. Lucky for me, my mortgage had just that long to run. Then reading by chance about Lyme Disease made me look into it further

I don’t actually know when I caught Lyme Disease, but it was a long time ago. I believe I had the first symptoms in 1979 but couldn’t get my GP at the time to take them seriously. Being so much younger then, I was into rock climbing and hill walking, which made me high risk, though I didn’t know it.

Then about ten years ago it began to get worse, but again my GP couldn’t help. I just decided that I had to live with it. Symptoms then were swollen & sensitive neck glands, headaches, night sweats, odd fevers, bad throat and generally not firing on all cylinders. I still enjoyed riding, but would suffer two days later, and never gained much in fitness despite trying to build up gradually.

When I started to deteriorate, about ’98 or ’99, my GP got interested and started running tests. I’d worked abroad quite a lot, and so had he, so he was interested and willing to follow leads. By this time I had the belief that some malaise was hiding in some dark corner within me, coming out and attacking me whenever I was sick or overtired. Of course, by the time I actually got to see my doctor, it was over, nothing to see. Then in 2000 I came home from working in the Far East, bringing with me a virus that promptly put me into hospital. I think that was a turning point, the Lyme infection becoming progressively more serious from then on, until it reached the point where working for a living was no longer an option.

Some things you need to know about Lyme disease…

It’s an infection by bacteria of the Borrelia genus, and is properly called Borreliosis. There are 3 or 4 species in the UK, with different symptoms (and differing from the North American species), possibly 300 worldwide. Co-infections can make it worse.
The bacteria are spread by tick bites, in the UK by sheep ticks. But only 32% of victims in one study reported noticing a tick bite (see first reference below). It’s possibly spread by mosquitos, fleas, etc also. Adult ticks climb up vegetation and sit on the tips of grasses, etc, waiting to grab onto some passing warm blooded animal. Avoid brushing against greenery overhanging the trail. Ticks will climb up your leg to bite you where the sun doesn’t shine, or may be stopped by the elastic of your shorts, so insect repellant could be a help.
Juvenile ticks bite too, and spread the disease, and being much smaller are harder to see. They feed on small mammals and birds, they tend to be found in leaf-litter.
The classic sympton is a large red bulls-eye rash called Erythema migrans, but only 41% of sufferers reported this (again, see first reference below). If you get it, take a photo, or no-one will believe you later, and seek medical attention urgently.
Your GP may require a blood sample tested to confirm Lyme before prescribing antibiotics. The first test is called ELISA (enzyme linked something-or-other) which has a 50% false negative rate. If you’re lucky enough to test positive then an equally unreliable Western Blot test is done to confirm… so why the ELISA? There are questions about both these tests in one or two of the URLs below.
The treatment offered to you will be two to four weeks of antibiotics. If you’ve had Lyme for a long time this will not be enough, but your GP may not accept this. It’s then you have to start to look out for yourself, beginning with the URLs below. I’m being treated outside of the NHS, and expect to be on antibiotics for at least six months, probably more like a year.
REMEMBER, THE SOONER YOU SEEK ATTENTION AND START TREATMENT, THE SOONER AND MORE EFFECTIVELY YOU WILL RECOVER.

Some websites…

http://www.cdc.gov/ncidod/eid/vol6no4/smith.htm
(a review of Lyme in England & Wales)

http://www.bada-uk.org/
(a UK site to begin with)

http://www.lymediseaseaction.org.uk/
(the UK Lyme Disease charity)

http://health.groups.yahoo.com/group/EuroLyme/
(the UK based Lyme sufferers’ support group)

http://www.ilads.org
(the International Lyme and Associated Diseases Society)

http://bmj.bmjjournals.com/cgi/content/full/319/7210/649)
(one victim’s story, actually a Doctor, read some of the comments too)

http://www.anapsid.org/lyme/
(‘an exercise in nailing jello to the wall’, a US perspective)

http://www.drmyhill.co.uk/article.cfm?id=361
(an account of late-stage Lyme from a sufferer who’s a healthcare professional)

http://www.wildernetwork.org/accurate_test.html (updated link –
http://www.lymemed.nl/discussie/grier.pdf)
(questions the accuracy of ELISA and Western Blot tests)

Now some edited comments from our original posting of the story a few years ago.

Antibiotics for a year!!!
Oh the dream prescription from any health professional; did they have dollar signs in their eyes as they told you this? The reason I ask is that once you have done with the antibiotics, they will have you for another few years as you try and kick your candida problem. Trust me, I was on antibiotics for a bit longer than you but 10 years later I am still paying for it, to the extent that it has wiped out my cycling this year entirely. If you do this, take ‘good’ bacteria and extra fibre to keep cleansing the gut (benecol do a good combined one), avoid all refined carbs – white rice, white bread/flour and white sugar and avoid too much fruit. Natural yog is ok, but the bacteria only lives about 25 mins in humans. Good luck kicking Lymes, but take care not to give yourself other problems. Antibiotics are pretty nasty. Great article tho and useful links. cheers. Marke
And in your next installment

Lyme disease …….. take your pick
Interesting to see how confusing some of these uncommon ailments are and how little understanding there is from the majority of GPs. I’ve been suffering from something similar since mid 2002. I’ve had brain scans, blood tests etc etc since then and nobody seems to be any the wiser about what’s wrong with me. Lyme disease was one of the first things I thought of but was told , ‘it couldn’t possibly be that’ as no bullseye appeared – if the current medication for fungal infections doesn’t come up with any improvements I may have to follow up the Lyme route again. Ho hum

Vaccination?
NHS website states a vaccination is available for at risk workers (e.g forestry). Anybody know anymore about this??

Why ELISA?
The reason they do an ELISA test before a Western blot, is that a Western blot takes an experienced member of staff about ten hours to do.

RE:Vaccination?
nospringchicken –
If I understand right, there was one in the US, it was withdrawn. Class action, perhaps?

RE:Why ELISA?
nospringchicken –
Thanks, Will, I didn’t know that. Obviously. And I’ve only been ill about five years.

RE:Lyme disease …….. take your pick
nospringchicken –
Follow the first link, only 41 percent of victims showed the bullseye rash (Erythema migrans). That’s from the official UK lab.

natural immunity?….
kenny –
As kid’s growing up in deepest darkest Argyll we used to collect ticks on our arms to see who could gather the most and argue over whose tick collection was the largest. I must have been bit hundreds; hundreds of times at least and i’m none the worse for it so far, is there such a thing as natural immunity against lyme’s disease?. We also used to paddle in the pond next to the “white witch’s” house and see how many leeches we could pick up on our legs but that was very messy and bloody as we used to wait untill the leeches had all filled up then we whacked them. We were strange kids i admit.

RE:natural immunity?….
nospringchicken –
Or maybe it had already gotten into your heads? Sorry, I don’t know about immunity. Once again Scotland leads the rest of the UK, it’s a Notifiable Disease in Scotland, but not in England and Wales.

Lucky escape
Ruthie –
My 70 year old dad got it last year and due to his age went tot the docs straight away on discovering the rash, doc told him he was a veeery lucky man and was tip top again within a month! Much sympathy for those who have suffered though :o/

RE:Why ELISA?
Rev_Will
My ex does Westerns and ELISA’s as part of her PhD. Apparently, it takes most people two days to do them. She’s special, it only takes her 10 hours. And she only knows if it has worked in the last minute. You don’t want to be around when she pulls the paper out of the developing machine, and it looks just the same as when it went in…

Weird, isn’t it?
ormondroyd – not@real.co.uk
I swam in rivers every summer as a kid. We’d occasionally get the sh1ts and blame it on the rats, but I never even heard of weil’s disease until I was a grown-up. Lucky escape I guess.

Glandular fever ?
Shibden –
Hello nospringchicken I am off work with Glandular Fever, have been for about 14 weeks and not ridden since I was admitted to the hospital – going a bit mad due to it as well. The effects of Lymes sounds very similar to Glandular Fever, I am due to pick up the results from yet more blood test today. Before I came down with this rubbish I was in New Zealand and was bitten with alsorts of flying insects, so far the blood test are showing postive for the Glandular Fever but nothing else. I am lucky in that I have a very good Doctor but he has not mentioned Lyme do you think that on the whole Doctors aware of the extent Lymes ? were you thought to have Glandular Fever after your visit to the Doctors ? Can Lymes run at the same time as Glandular Fever ? All the best and thanks for the info / links

RE:Vaccination?
scorcher_seb
The US vaccination was found to be just as bad as the disease!

RE:Glandular fever ?
nospringchicken –
Sorry, I don’t really know much about GF. It was a suspected cause of chronic fatigue syndrome (a label which is officially pinned on me). CFS (or ME if you prefer), Lyme and a few others have overlapping symptoms and may be related. Researchers are finding changes in cfs sufferers that may point to infections, but I can’t understand the stuff they write. The good part of this is it may serve to rescue cfs patients from the headology specialists. I was tested for E-B virus as part of the cfs stuff, but I’m too old and anyway I had a proper childhood of muddy puddles and general dirt so I came up pos., which was no surprise. If you want to know more about GF, do a post on the forum, there’s at least another who might help. I believe that medical college teaches would-be doctors something like ‘well, there’s Lyme disease, but it’s so rare you’ll probably never see a case’. So they just don’t expect to see it. Mostly they need help from the patient, hence the links above. One GP told me I could only have caught it in the New Forest, when it’s a notifiable disease in Scotland.

RE:Weird, isn’t it?
nospringchicken –
If my generation ever fell in the river, they’d have been rushed to hospital and stomach-pumped. I guess it depended of your river.

TBE – another nasty to watch out for …
ginger_yeti –
If you’re off to Europe this year, here’s a nice little bug found in forests and meadows of Austria, Switzerland, etc. You can have a vaccine for Tick-Borne Encephalitis, though you have to have it a few of weeks before you go. Not disimilar to Lymes’ Disease. Have a look at this ‘un: http://www.nathnac.org/travel/factsheets/tick_borne.htm

Lyme disease.
Ramon
I’m not sure if I’ve missed it in reading the article, have you tested positive for the disease, or have you/they come to the conclusion from the array of symptoms? I wondered with the tests not always showing positives or non-negatives.

RE:Lyme disease.
nospringchicken –
Somewhere in my medical record is a negative ELISA test, which led to lots of other NHS testing (I could list it, it cost the NHS a bundle) and a final CFS diagnosis. By chance I followed up the Lyme possibility and was introduced to a GP who actually knew something about it, who diagnosed from symptoms. Outdoors lifestyle turns up the risk factor, too. This Doc said ‘there is no test to prove you have Lyme, and none to prove you’ve got rid of it’. Just to take another dig at the NHS, according to them it’s OK for me to donate blood, I have a letter saying so. I have in the past, but won’t ever again.

Some more points
AlunEvans
An excellent article, nospringchicken, I really enjoyed reading it, and it’s good to see some sensible information distilled from the web. I did quite a bit of research on Lyme’s recently, as a friend of mine was suspected of having caught it, so there are a couple of points I would like to add. The first, and most important, is that actually catching Lyme Disease in this country is incredibly incredibly rare. I remember finding some stats and doing some rough calculations to the effect that if you get bitten by a tick in this country, you’d have a 0.02% chance of catching the disease (though I must admit I’ve forgotten the stats and the calculation now). On the continent, even just across the channel in France, it is a different matter and Lyme’s is much more prevalent, and the guess is that many Lyme sufferers in the UK actually caught the disease while abroad. Trouble is, if you can remember being bitten, you don’t know when or where you caught it. The other point is that the bacteria is usually passed from the tick to humans when the tick spews up its waste product into the bite. They usually do this either a) when they’re threatened/disturbed or b) when they’re full. The two points two remember here are that if you do see a tick on you, remove it as soon as possible; and when you do remove it, twist if off carefully and quickle using tweezers clamped at the base. Don’t burn it or try to rip it of cack-handedly, as this might disturb it enough to spew up. You can find most of this info in the links under the article, but I though it was worth highlighting.

RE:Some more points
nospringchicken
OK, but: The first quote gives 0.32 cases / 100 000 in the UK per year. Using their figures & the 2001 census (the ’91 data just isn’t user friendly) I get 1.5 / 100 000 in Hants, similar in Wilts & Dorset. Now that’s those lucky people who.. Have a GP who – sees a bullseye rash and – sends off for a test – where the ELISA is pos – and the Western Blot is pos. So many links in the chain. There’s some new research, which goes right over my head, about the Borellia bug mimicking tick saliva in some way. Surface proteins, perhaps? If it’s like a mossie, then the tick has to inject anaesthetic & anticoagulant. Do you see what I’m thinking? If it stays only in the gut, why does it mimic saliva? Don’t forget there’s a risk from the bites of juvenile ticks, much harder to see. In the US there’s speculation that Lyme is under-reported by a factor of ten. Who’s to say what the UK rate is.

(Grimly) Facinating
rkk01 –
Many thanks for posting this article……my concern is that I couldn’t have expressed the way that I have been feeling for the last 3 years any better 🙁

RE:(Grimly) Facinating
nospringchicken
Get yourself along to EuroLyme (4th web thingy above) right away.

RE:Some more points
nospringchicken
I’ve been hoping you would get back with some more information and perhaps some hard numbers. While you’re entitled to your viewpoint that catching Lyme is ‘incredibly incredibly rare’, if you follow some of the links you’ll find getting a positive test result is rare, too. So how can you distill any kind of stats out of the mess. Meanwhile to quote 0.02% may leave potential victims with the impression that they need not bother being concerned as the risk is so low. The US is just waking up to their undetected and untreated levels of Lyme. Canada is behind and the UK hasn’t started to look. Well, except for a few concerned and motivated individuals, acting outside of the NHS. British Army doctors, meanwhile, treat Lyme promptly on symptoms alone, without tests. But then they have the German experience to guide them.

RE:Some more points
Zildjian –
I know this is quite old, but I need to reply to this comment. 0.02% of catching Lyme disease if you are bitten? Where on earth did you get these figures from? A recent study showed 30% of ticks are infected in Wales, not 0.02%. This figure is probably simular else where. And before you say the tick needs to be attached for more than 72 hours, this is completely untrue. Recent research has showen the disease can be passed in a matter of hours. It is not ‘rare’ in this country at all, you can’t tell me it is rare in the U.K, but it is endemic in the rest of Europe? Lyme disease can spread by migrating birds, and animals coming into this country. I expect Britain has tick borne diseases just as bad as France and Germany, but it is always misdiagnosed or undetected.

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