Lyme Disease

[Rich R]

We are pretty much the highest risk group from this disease that there is and since contracting this disease myself have found a higher proportion of orienteers have had it than I expected.

I had big problems convincing Doctors I may have it and even after two positive results my Dr (an infectious diseases specialist) was still not convinced I had it. Anyhow, to cut a very long story short I have finished 2 month antibiotics, which seems to have shifted the disease but I am still struggling with fatigue 5 weeks since finishing the antibiotics.

So, with the font of knowledge and experience that is Nopesport I wondered what experiences there is with this disease and how long others may have struggled with fatigue after treatment?

FYI I probably had the disease for ~15 weeks before treatment.

[mikey]

Did you catch in the UK or overseas?

Isn't there some sort of vaccine you can have before travelling to disease carrying tick-prone areas?

[Sunlit Forres]

Rich - I've had more tick bites than Oliver Reed's had shots of scotch. A few years ago I was really suffering from fatigue when one of the guys in the local running club suggested I got a lime disease test done. The doctor said she almost fell off her chair when thumbing through a pile of negative lab reports and coming to mine which was the first time she'd seen a lime disease test come up positive.

A 3-week dose of antibiotics seemed to do the trick. It took a while to feel 100% (and my spelling still hasn't improved) but please PM me if you want to know anything else (not that there's much else to say).

[gaw]

Did you catch in the UK or overseas?

Isn't there some sort of vaccine you can have before travelling to disease carrying tick-prone areas?

Lyme disease comes from ticks in the UK, and presumably other countries, is treated with antibiotics and there is no vaccine as far as I know. I recall a Fellrunner magazine article which suggested that some people who believe they have chronic arthritis may actually have Lyme desease which could be treated but unless they raise the possibility with their GP it won't get recognised - and even then it might take some persuading. I suspect in Cumbria most GPs are well aware of Lyme desease.

The vaccine you may have heard about would be for Tick Borne Encephalitis which is more serious but not present in the UK. Some orienteers who orienteer in Europe will have had it but it is expensive and administered in 3 injections several weeks apart. It is present in many european countries and in some it is given as a childhood standard inocculation.

[CrawfordL]

I had it a few years ago, catching it after an event at Tentsmuir South. I had the classic ring that appears around the bite site, 8 days after the tick attached itself (the tick was there for a week as I couldn't see it). My doctor was really into unusual diseases and I got an appointment instantly and was on double antibiotics for a week. I was wiped out for about 2 weeks but fine after that. I suspect the short recovery period was down to recognition that I had the disease soon after contracting it.

[DeerTick]

Is it not the case that tests for Lyme disease are notorious for false positives and false negatives? And the early symptoms are extremely vague and variable?

I understand that doctors in this part of the world (West Highlands) routinely administer antibiotics with or without blood testing.

Like Sunlit I have many tick bites over the years with no evidence of Lyme symptoms (my sore joints are age related, I'm sure). One waist level bite (cough, cough) produced an overnight beer belly (and I'm a red wine man) which responded rapidly to antibiotics, but this was probably some other infection.

AP

[Rich R]

Did you catch in the UK or overseas?

Isn't there some sort of vaccine you can have before travelling to disease carrying tick-prone areas?

To be honest I'm not sure. Symptoms started at the end of April and can't recall exactly when I was bitten prior to this. Bites are so frequent for me I don't really remember them but it would have been either the JK (Scotland) or Interland (Belgium). I have also read people carrying Lyme for many years before the disease reared its head, which is what I wonder has happen with me as I have had bites turn red and look infected a couple of times previously, 2+ years ago, but not had any symptoms afterwards. What has become clear is that Lyme is far less understood in the UK by medical professionals than I originally thought (orienteers would certainly make a good group for any research on the subject).

[ifititches]

Rich, if you start from
http://www.hpa.org.uk/Topics/Infectious ... formation/
you'll find links to all kinds of information and figures on numbers of infections/cases of Lyme disease (named after the place in Connecticut where it was first described).
It's currently suggested that suspicious rashes after tick bite should be treated as though they are Borrelia infection,without taking blood samples, as tests may be negative early in the disease. The apparent lack of knowledge in some GP surgeries is probably due to the rarity of the disease outside the most affected areas. Large amounts of educational material have been generated in recent years, but only so much "sticks" if a surgery rarely sees it. All GPs also have access to advice from the specialist Lyme serology testing unit if they are unsure of test and symptom interpretation (you can see the details on the HPA pages)
At a recent HPA meeting there was some discussion about the possibility of being able to use epidemiological data/habitat data and GIS to pinpoint even more exactly which areas of land/forest are most likely to currently harbour infected ticks. This could be very valuable information for recreational users if it comes to fruition, but I've no idea of a likely timescale.

[Becks]

Finally a post I can be a bit useful for. As I discovered when I moved here, Lyme is pretty much a rite of passage for the US orienteer. It was discovered right here in Connecticut, about half an hour's drive from my house, named after the town of Lyme where the first case was acknowledged. It's from a bacteria called borrelia something or other, The kind we get over here in the States is a different something or other to the European bug (still borrelia though). They work in the same manner and are notoriously difficult to culture. So there's no direct positive test - taking a blood sample and culturing the bacteria in a dish. You can test for the presence by PCR (amplifying bacterial DNA from blood), but if the lab has even slightly sloppy technique it's easy to get false positives or negatives from this. You can also look for your body's antibodies against the disease, but although these tell you you've been exposed, they can't really tell you how long you may have had the disease for or anything else like that. A lowish positive antibody result and a few weeks or fatigue was sufficient for them to diagnose me here. It probably takes more to convince a GP in the UK, where the disease is not yet endemic in the tick population (here 11 out of 12 ticks carry it, or something insane). The only almost definitive diagnosis is the rash, and of course not everybody gets that.

There IS a vaccine for Lyme disease. It was discontinued for human use here after an MMR like scandal that likely wasn't real. Experts here at Yale suggest it was actually not making the firms any profit, so that's why they stopped making it. If you're a brave soul and have a friendly veterinarian, you can get yourself jabbed with the version they still give out to dogs over here. (But your health insurance might not cover the tiny chance of resulting complications - thanks stupid US healthcare system!). So yes, there is a vaccine, but I doubt it can be obtained in the UK.

The experts in bacteriology here at Yale say there is absolutely no way a long term condition exists once Lyme has been thoroughly wiped out with antibiotics. Many people on the interwebs will disagree with that, and talk about a long chronic fatigue like illness, ongoing problems with arthritis etc. Experts argue two things - that your body has been under attack for a while (April to November in Rich's case), and general inflammation etc will take a while to calm down. These bacteria get everywhere and most of your organs will have suffered some minor form of inflammatory damage - nothing to worry about, but it will take time to get over. Secondarily, Lyme isn't the only nasty bacteria that ticks carry - and while the doxycycline (I presume you got Dox Rich, let me know) does the job with most bacteria, it might not get everything the tick gave you. For this reason, if you're still feeling crappy (and it might take a couple of months to get back to normal/sprightly, though you should be managing some exercise and not sleeping all day now) in a couple of months, you should seek out a specialist who can look for signs of other infections.

Finally, if it was dox you're on, it's a really horrible antibiotic, dehydrating and strong, and may well result in some of the fatigue itself. I doubt you'd still be feeling it five weeks out though.

I would give yourself another 3-4 weeks of taking it easy (I know, it's annoying as hell) before worrying too much. Are you at least feeling minor improvements?

If there's any more questions you have, just ask! I am only half a Doctor though, but could probably find you one here who would e mail you if you liked. They're way more used to dealing with Lyme than at home.

(Ifititches beat me to some stuff while I was essaying, but I will keep it all there for continuity).

[Karen]

Once someone has had Lyme Disease, are they then immune, or can you be infected again?

[Kitch]

there was a report on the Fellrunner forum from a runner who contracted Lyme at the RAB MM held this year in the Cheviots.
EC at Wooler, overnight camp in the College Valley

[ifititches]

Re-infection certainly can occur. This bug has a complex life cycle, has many variants and is good at evading the immune system. Although there was a vaccine available in the past I suspect it was one that had to be repeated over the years to maintain some level of protection, and that the protection was not absolute anyway. There's clearly much more work being done on this, and if you're prepared to read scientific papers, there's a very good one at
http://cid.oxfordjournals.org/content/45/8/1032.long
which also raises the possibility that the early treatment of the rash (which is a good thing to stop you getting the full-blown disease) may limit your exposure to the elements of the bug which would give more lasting protection against re-infection. It also documents that bites from uninfected ticks may offer some protection, either because previous bites sensitise you so greatly to a tick's presence that you itch and discover/remove any tick, including an infected one much earlier, or that an immune response to tick saliva in some way inhibits transmission of the Borrelia.
From Rich's point of view I'd say it was a good thing that you're being cared for by an ID specialist, as they're usually much more alert to other infections/conditions which could cause your symptoms than a GP in a non-endemic area would be.

[Kitch]

Reading through the HPA site it appears the best thing we can do is to ensure early removal of ticks
within 24 hours they say.
checking yourself over immediately after a run, before bed and again next morning would seem sensible

[Rich R]

Yes it was doxycycline. It made a huge difference and the fatigue had almost completely gone at the end of the 8 weeks treatment but as it slowly left my system in the following 7-10 days my fatigue returned (although have not felt unwell again) and had to totally stop running again after building up to ~5 hours per week. I'm now very up and down with fatigue levels. My main frustration is that I want to get back to full training (10+ hours per week) but I'm still miles away and have had no indication from drs as to how long this may be.

I never had the rash, which I have read only ~40% of people do, which the drs seam to rely on for diagnosis over here but my other symptoms have also been fairly classic Lyme (headaches, tiredness, dizzyness, arthritis, swollen glands, aching muscles, cognitive problem and now had tinitis none stop for ~18 weeks) although as I keep being told are none specific. I have had two positive Western Blot results (they didn't believe the first one) and had testing for many other tick borne infections which came back clear.

I have done alot of back ground reading as I have learnt that the drs probably don't have a clue. Lyme disease action (http://www.lymediseaseaction.org.uk/) is a very good British based website and I have also got to known this useful diagnosis and treatment guideline document quite well (http://www.ilads.org/lyme_disease/B_gui ... _17_08.pdf).

I did find a BBC snipet (may have been country file but can't remember) with a report Lyme Disease which indicated approximately 50% of ticks in the UK carry the disease.

[Rich R]

Reading through the HPA site it appears the best thing we can do is to ensure early removal of ticks
within 24 hours they say.
checking yourself over immediately after a run, before bed and again next morning would seem sensible

Or even wearing insect repellant to try and avoid getting them in the first place.