UKH

HI Folks,

Just wanted to let you know about the Protest I am organising for Lyme Disease. I have had Lyme Disease since 2008, I used to be a keen climber, hillwalker and mountain biker. Now I can't do any of those things as I am too ill. As you probably know, hillwalkers are at risk of getting tick bites and thus catching Lyme Disease. Don't think there isn't any Lyme Disease near you- it's everywhere. I picked mine up on the Isle of Rhum, West coast of Scotland, but there is Lyme Disease in the central London parks, suburban areas, lots of woods and moors, basically where there are ticks. Birds are one of the main carriers and they are very mobile!

The NHS are pretty clueless when it comes to treating and diagnosing Lyme disease. There are a few clued up GP's but the vast majority are hopeless. It's not their fault, they are given misinformation by the Health Protection Agency. If you catch Lyme and manage to get diagnosed, it is likely that you will get up to 4 weeks antibiotics. If you are still ill after this, they usually won't give further treatment. They say further treatment won't work, as that is what they have been told. This is not what the scientific literature says, but most doctors don't have time to read this and so trust what they are told.

The result is thousands of patients are left to rot, basically, and only those who can afford private treatment can recover. This is a terrible situation and we are protesting to try and get things changed.

For more information, please see our website:

http://worldwide-lyme-protest.org.uk/

There is general information on there about Lyme and the links are relevant to the UK. Read up on the subject before the tick season starts!

Nicola S

In reply to Nicola S:

Good luck Nicola

In reply to Mikkel: HI Mikkel- Long time no see!!

In reply to Nicola S:

Thanks, Nicola. And best wishes for your recovery.

The prospect of contracting Lyme disease is something that worries me. I've lost count of the number of tick bites I've had over the past 5 years. (Prior to 2008 though, none. It does seem to be getting worse.)

Has anyone tried Permethrin-based repellants as a preventive measure?

In reply to Douglas Griffin: there are no good studies on ticks and permethrin impregnation, I think the US army uses it though. I do, at the beginning of the season, I soak my socks and base layer in permethrin/deltamethrin. Lifesystems do it, they sell it for treating bednets. I think it can't hurt (permethrin has v low mammalian toxicity, although poisonous to fish and cats).

It's possible to catch Lyme more than once as there are so many strains.

Repellent places at wrists, waistband, neck hands and ankles is a good idea though, ticks are good at crawling over clothing and into nooks and crannys

In reply to Nicola S:

Thanks again - I think I'll try coating my gear in the Lifesystems solution as soon as it gets milder.

In reply to Nicola S:


Defenetly is!
I nearly posted about you some weeks ago on the "worst abseil" thread

Do you think ticks might get repelled by me like midges? i dont recall ever finding a tick on me, and will count myself lucky if they dont like me either.

In reply to Nicola S:

Tell me about it - I got one in the depths of my belly button.
It was a right pain to try and extract

In reply to Martin Brown:

Armpits and behind the knees are also good places to look.

In reply to Nicola S: Good luck, I had it last year but thankfully the antibiotics did the trick. Think I got it in the Peak.

I felt ill last summer after removing a (potentially) week old tick (was a nymph so didnt even see it). Had awful flu type symptoms which build up over 3 weeks and felt like I was living in a bubble. Managed to get anti biotics eventually and it cleared up. They wouldnt do any blood tests etc so I have no idea if I did have it or not.

In reply to Nicola S: I use permethrin on my clothing as I have to sit around for up to 7 hours a day in one spot watching birds (tis a hard life!) in the middle of moorland and ticks are always present. I dont get bitten much but I dont know if its the permethrin or if its me. Ticks dont bite me much even when not protected, whereas midges love me! I have heard of good results from dermal patches which contain loads of B vitamins. All biting insects hate it, the only downside being you tend to smell like a twiglet. Anybody used these?

In reply to Nicola S: I'm a First Aid trainer and DofE Expedition supervisor. I spend a lot of time on ticks, where to find them and how to remove.

Dark, warm, moist areas is where I recommend looking as the skin is softer in those areas. This is quite interesting when you are working with a DofE expedition team. However they will attach anywhere.

I'll be continuing with that training and whatever else I can to help raise the knowledge levels around Ticks and Lyme.

One school that I work in has first hand knowledge of the dangers as one of the teachers has been seriously affected by Lyme Disease.

In reply to ring ouzel:
I've not heard any good evidence for high levels of Bvits being protective. Also from a personal perspective I used to test nutritional supplements and was frequently so full of Bvits that I was peeing flourescent green, I still got bitten by everything going. Midges, Mozzies, Horse flies, kittens, ticks...

In reply to Reach>Talent: Hmmm, maybe bvits just make you tastier?

In reply to Nicola S: it is important to remember with permethrin that it has to be re_applied after 5-6 washes. However I have had very good results with treated clothing. As I haven't been bitten for many years by ticks, mozzies and even midges seem to avoid it.

In reply to dunk5823: I had a mate who was top veteran long distance swimmer, he swam in the Liverpool Docks race and was given, and monitored for, lots of Lyme disease preventative injections etc. He won the race, but I often wonder about the little scallys that swimm in the docks every day in summer and there is never a big outcry about a plague of Lymes disease?

In reply to Al Evans: Do you mean Weils disease?

In reply to Nicola S:

I've possibly had Lyme- found the bullseye rash near where i'd had a tick bite the week before and was treated straight away with 2 weeks antibiotics. I never developed the flu like symptoms, and was never tested. Doc thinks we just caught it really quick and so I'm a big advocate of vigilance.

Theres a lot of rumour and misinformation out there about Lyme, and its hard to know what is true. I've heard "if you get bitten, take a short dose of doxycycline as a preventative measure" which goes against everything I understand about broad spectrum antibiotics and drug resistance, and another thing I've heard is that if you get it twice you are naturally immune- probably tosh too. There does seem to be a need for a lot more research, and perhaps with climate change and an increased prevalence of ticks/Lyme, plus protests like the one above, better information will be available and more research carried out.

In reply to Nicola S:

All the best with your recovery.

I used to get bitten quite a bit but have taken to wearing running tights whenever I run in areas that are likely to be tick infested (the combination of deer and bracken is sure fire, I think) and so far I've avoided getting any on me. And obviously, removing them (nb, don't leave mouthparts) asap after having them lodge can only help. There are special tweezers that do the job pretty well.

In reply to Nicola S: Vets are a good place to look for tick removal tools. I've heard that some give them away. Otherwise they should cost about a fiver.

I have some for sale. Send me a fiver and your address.

In reply to Nicola S: I'm sure there was a stalker in N Scotland who died from Lyme Disease last year.

Found a link. Dunno if it were ever proven though:

http://www.heraldscotland.com/news/home-news/probe-after-mans-death-is-link...

In reply to Solaris: I blame bracken, the stuff is everywhere now..and the powers that be in brussels have banned the spraying of it..

3 areas ive heard are rife with lymes are Jura, Rhum and the cowal peninsula.feel free to add any other areas folks

In reply to Erik B:

I think it is unhelpful for people to get the idea that particular areas are highly prevalent - it will likely to lead to complacency. I regard any activity which involves exposure to vegetation around the U.K. to be risky and always have a check for ticks afterward or get my lucky tick buddy to have a look. Better to be aware of signs and symptoms of Lymes and check for ticks than think you are safe because you are not in a 'high' risk area.

D

In reply to all: That stalker probably did die of Lyme, but it can't be proven, Lyme affects everyone differently and I doubt his organs were sampled on autospy. The pathologist would probably have not been aware of the multitude of ways Lyme can affect the body and so wouldn't really know what to look for..I have met two relatives/friends who are convinced their partner/friend died of Lyme. Both were from the UK. It is not usually recorded on the death certificate as Lyme patients can die from symptoms caused by the Lyme bacteria that the majority of medical professionals are not aware of, carditis, heart block, fatal seizures, breathing difficulties and often, suicide.

Al Evans, I think you are thinking about Weils disease which is different. That's from rats urine and is usually caught by people working/playing in water where rats live. There are some similarities since both are caused by spirochetes- a kind of bacteria.

tights- that is a good idea! never thought of that, I may copy that one....

yes, there is a lot of misinformation- a lot of from official sources unfortunately! I'm not saying all Lyme is as serious as mine, of course that is not the case. However, we have no good idea how many cases are the 'easily cleared up by short course of antibiotics' type and how many are the more serious 'only treatable with long courses of antibiotics' type- there are no records. I am in regular contact with many people who are unfortunately the latter type, and I can tell you, some of the stories are absolutely devastating.

In reply to Dauphin: I agree, I have been in contact with people from all over the Uk and abroad who have picked Lyme up from completely random places. Examples:
A second hand pair of trousers- a tick was in the pocket and the child wearing them got bitten, an adventure playground- a baby in a backpack carrier got bitten on the bum- under his clothes and nappy, middle aged women who have been bitten in their gardens, someone who was swarmed by mites when a birds nest dropped through their ceiling and subsequently tested positive when they became ill, bradgate park in leicestershire- woman got bitten there and had to go on hunger strike to get the authorities to take her seriously, someone who felt that they got infected by mites which she found crawling out of a feather duvet (I think from abroad). There is some evidence that it's not just ticks which are capable of transmitting Lyme (though I'm sure the vast majority of cases are tick-borne).
...and that's without even going into potential sexual transmission (no data but anecdotal reports), in utero transmission (does happen), potential for transmission from blood banks (no proven cases but no screening and it can survive a long time in donated blood)....

In reply to Nicola S:
>This is not what the scientific literature says, but most doctors don't have time to read this and so trust what they are told.


If you can link the peer reviewed evidence for the doctors, it would be quite helpful.

In reply to Nicola S: Ticks are common here in Sweden and I've seen reports that suggest eating garlic can help. In the tests people working in highrisk jobs were given four garlic capsules to eat every day for a year. This may be a bit excessive for the odd trip into the hills, but from my experience a good dose of garlic before a day out does seem to help. This is totally unscientific and unproven but won't do any harm.

I would recommend checking all over after a day out as they get everywhere. It takes a special sort of friend to do the "ring-check".

In reply to bentley's biceps: If you look on our website, that's exactly what we have done:
http://worldwide-lyme-protest.org.uk/

In reply to Nicola S:

Sorry, couldn't see much of relevance in the list re chronic Lymes.

In reply to bentley's biceps:

I haven't read anything on that site but there is a mountain of shite written about chronic lymes - total quackery, especially in the U.S. from people who should know better i.e. medical professionals. Truly scary.

D

In reply to bentley's biceps:
From my website:

The Infectious Diseases Society of American has produced guidelines for the diagnosis and Treatment of Lyme disease11. These IDSA guidelines are generally used worldwide as the standard to follow. However, these guidelines have been heavily criticised by Lyme-specialist doctors, Lyme researchers, the International Lyme and Associated Diseases Society (ILADS), patient groups and patients themselves 12,13,14,31. They advocate very restrictive diagnostic criteria and consider treatment-resistant or Chronic Lyme to be not caused by ongoing infection, but to be comprised of historical damage and auto-immune processes. There is a plethora of evidence that the Lyme bacteria can survive short courses of antibiotics (the treatment recommended by the IDSA)32 , but this evidence is largely ignored by the IDSA guidelines.

There is increasing evidence that longer courses of antibiotics may be beneficial in some patients 33,34,35,36,37, but this evidence is not considered by the IDSA. The Health Protection Agency, Health Protection Scotland and the Irish Health Service Executive all endorse and promote the use of the IDSA guidelines and similarly biased guidelines written by the EFNS (European Federation of Neurological Societies) and the BIA (British Infection Association) position statement. Lyme Disease Action has written a critique of the BIA position statement 38 and there have been a series of BMJ and lancet letters debating the issue.39,40. As in all areas of life, there are likely to be vested interests and a reluctance to back down from an entrenched position41. The idea that chronic Lyme is not a treatable illness is at odds with the patient experience. Chronic Lyme patients, when they do access long-term antibiotics, do usually improve, and some regain full health42.

11.http://cid.oxfordjournals.org/content/43/9/1089.full
12.http://www.lymenet.de/literatur/dbg_idsa_statement.pdf
13.http://www.lymediseaseaction.org.uk/wp-content/uploads/2011/06/isdaapr2009....
14.http://www.ilads.org/lyme_disease/lyme_testimony.html
31.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/
32.http://www.lymeinfo.net/medical/LDPersist.pdf
33.http://www.ncbi.nlm.nih.gov/pubmed/17928580
34.http://www.dovepress.com/benefit-of-intravenous-antibiotic-therapy-in-patie...
35.http://www.ncbi.nlm.nih.gov/pubmed/19124209
36.http://www.ncbi.nlm.nih.gov/pubmed/14586290
37.http://www.ncbi.nlm.nih.gov/pubmed/9233665
39.http://www.bmj.com/content/345/bmj.e4727?ijkey=GMTNpvrb6HnYGip&keytype=...
40.http://www.thelancet.com/journals/laninf/article/PIIS1473-3099%2812%2970052...
42.http://www.thelancet.com/journals/laninf/article/PIIS1473-3099%2812%2970052...

See also, my blog, for discussion of the evidence: that 'the drugs do work-the evidence'

www.lymeywifey.blogspot.co.uk

There need to be more clinical trials, admittedly, on Chronic Lyme. However, I think what is undeniable is that the 'evidence' that long term antibiotics DO NOT work is incredibly flimsy and does not agree with the experience of the patients who HAVE massively improved their quality of life or even regained full health through long term antibiotic use. The HPA, the BIA and the IDSA have massively and repeatedly overstated the rhetoric that long term antibiotics are ineffective and dangerous. They are simply not representing a balanced position.

In reply to Dauphin: It's actually called Lyme Disease, not Lymes

In reply to Nicola S:

Thank you for the links, which I have just been through. At best these are level III evidence, usually less than that.

The problem is that there is no validated and reliable test available for Lyme disease. You state that the evidence that antibiotics do not work is shaky. There is very little objective evidence to suggest that they do work either, and it is often easier to prove something exists/ works than it is to prove it doesn't exist/ work.

Your case isn't helped by people like Andrew Wright who came out with the same arguments and privately treated people for vague symptoms with combinations of long term antibiotics. His testing techniques were never demonstrated to work, but people felt better was his evidence. He stated CFS or ME were partly due to chronic borreliosis of a different subgroup, and stated this was evidence for chronic Lyme and Gulf War trials. http://www.theoneclickgroup.co.uk/documents/Borreliosis/Dr%20Andrew%20Wrigh... The uproar in the ME forums when he was struck of for misconduct remains today. The GMC are conspiring it would seem.

Others have claimed Chronic Systemic Candidiasis was involved. Again, no validated test, long term private treatment at great cost to the patient.

I am in no way saying chronic Lyme does not exist. The evidence is not there to support it, and certainly cannot support long term antibiotic treatment on the NHS without an evidence base.

As you say, more research is needed. However, until an accurate test comes along UK guidance is unlikely to change.

In reply to Nicola S:
So sorry to hear about this, Nicola and I hope you get well soon. I will certainly support you.

In reply to bentley's biceps:

I'm not sure if you are a Doctor, but if you are, you will be aware of the saying 'treat the patient, not the tests'. I think this is a wise statement. In the case of Lyme, you are correct, the tests used in the UK are currently unreliable.(However, There is a new test, just developed in America and only available there which claims to be much more reliable, it is a culture test rather than an indirect antibody test, and I think there is much merit in this approach- but I digress).

The test manufacturers all state that a negative test should not be used as evidence that the patient does not have Lyme and that clinical judgement should be used. The problem is that many of the symptoms of Lyme are vague and non-specific, and it mimics many other illnesses. In the UK, there are not enough cases of Lyme for regional Infection consultants to gain enough experience, they are spread too thinly, and so these consultants are not seeing the patterns. In addition, Lyme is extremely variable, no two patients are alike. However, that said, it is still possible to diagnose on clinical grounds alone if you have enough experience. I have been diagnosed with Lyme clinically by 5 lyme-specialist doctors (with later positive blood tests). All of these people are seeing several new Lyme patients each day, as opposed to one a month or so that an ID consultant might see. All of these doctors go to Lyme conferences, keep up to date with the literature, LISTEN CAREFULLY TO THEIR PATIENTS AND HAVE CONSULTATIONS THAT LAST BETWEEN 1 AND 3 HOURS, carefully monitor their patients when they are on long term antibiotics and importantly, they follow up their patients for long periods of time and see results. They see that skilled use of long term antibiotics can produce very good results- people are transformed from often having an exceedingly poor quality of life, sometimes bed bound, to leading fulfilling, productive lives again.

I would agree that there need to be more clinical trials on long term treatment of Chronic Lyme disease. One of the trials that I cited is actually a double-blind placebo controlled study (Fallon).There is a study in the Netherlands that is ongoing (double-blind placebo controlled).

One of the problems is that double-blind placebo controlled studies are ethically difficult, and also, as no two Lyme patients are alike, having a one-size fits all approach doesn't really make sense. Some patients require less than 4 weeks of antibiotics and they seem well again, some need years of antibiotics and may experience only partial recovery. There are so many factors- co-infections, duration of infection, hormonal, metabolic and immune dysfunction, and strain or genospecies of Lyme itself.

I have never met Andrew wright, and I do disagree with some things he has said, but I also think some of his approaches (especially the use of microscopy) had some merit and although he was skating on thin ice using this for diagnostic purposes, I think he was onto something. I have seen my spirochetes under a microscope (I used one for work), it wasn't that difficult and although I do not know what species they were, I'm pretty sure I don't have Syphilis or Leptospirosis. I do not think the GMC were conspiring, infact when they were called to investigate other Lyme specialist doctors in the UK, they decided it was not within their remit to arbitrate in a controversial area of medicine and decided not to pursue the case.

You say that there is no evidence that Chronic Lyme disease exists. I can find you upwards of 77 peer-reviewed studies which show that Borrelia burgdorferi can survive short (and sometimes several months) of antibiotics, and many papers showing that these spirochetes are viable, and can be cultured and when infected into uninfected animals, caused disease. So I think you are incorrect in saying there is no evidence to support the existence of Chronic Lyme.

In reply to Nicola S:

And I am sure you are aware of the over riding principle of "first do no harm". You are advocating 6-12months if treatment for an undiagnosable condition.

There is no point in trying to debate this: you have your formed opinion and interpret the evidence to support it, therefore discussion is fruitless.

Good luck. Let us hope a test will be along to support your cause.

In reply to bentley's biceps:

Indeed not to mention the added contribution of poor compliance and resultant antibiotic resistance which will result in lots more harm to others overall. There is no harm in raising awareness with GPS though, but in my and my wife's experience, both of us having had the characteristic rash post tick bite, we have been treated well by the GP. Also, my wife who works on the hill in the highlands had vague symptoms of sore joints and fatigue for six weeks or so having had numerous tick bites and the GP was straight onto the Lyme disease possibility treating empirically with antibiotics. We have an almost daily tick removal session for my wife during the seasons, and she is absolutely fine.

In reply to annieman:

Of course I do :-s

In reply to bentley's biceps:

Yes, I am aware of that. I also think withholding antibiotic treatment from a patient with a 'possible Lyme' diagnosis, when their health is greatly improved by those antibiotics, IS doing harm. Long term antibiotics are given for Acne, yet when it comes to Lyme Disease (which can be potentially fatal), antibiotics suddenly become incredibly dangerous.

I think doctors who are experienced in dealing with Lyme would strongly disagree with your assertion that this is an undiagnosable condition.


I have formed my opinion from nearly 5 years of reading the primary literature, speaking to a wide range of doctors and patients, giving talks to medics, climbers and walkers on Lyme and discussing Lyme with them, working with a leading Lyme Disease charity and keeping up with the latest developments in research. I have cited, not interpreted, evidence to support it.

Some GP's, especially those in areas of high incidence are excellent at picking up on early Lyme and prescribing promptly. I wish this happened more often, as it would most likely prevent many cases of Chronic Lyme.

In reply to Nicola S:


Precisely the point.

In reply to Nicola S: Apologies for late post, have only just found this discussion in my email heap !
First, I agree in sending best wishes to Nicola for her health and the protest in May.

Being something of a trail runner, I looked into this quite horrendous subject a few years ago, following on the Kirsty Waterson story:
http://www.dailymail.co.uk/news/article-391579/How-tick-bite-destroyed-care...
Kirsty was well known locally, you would often see her around the town, an excellent runner.

Nicola said < tights- that is a good idea! never thought of that, I may copy that one. >
For a long time now I have used standard polyester baselayer ‘tights’ whenever I am on a trail type run, they are strong enough take the vegetation, and the occasional falls. Yes, I did try soaking a trial piece of wrapped cloth in Permethrin, as Douglas Griffin wrote < I think I'll try coating my gear in the Lifesystems solution >. Maybe their solution is kinder to human skin but the 0.5 per cent strength stuff I used brought me out in a nasty red rash that took weeks to clear down ! More likely it is because base layers cling to the skin, unlike trousers.

I also found a research article by John Caroll: http://www.ars.usda.gov/research/publications/publications.htm?SEQ_NO_115=1...
which showed that ticks need 60C hot drying for an hour to kill them. It is obvious that these base layers will not tolerate that, and are going to be impossible to wash/dry enough to guarantee tick elimination. Washing will only spread them about in your clothes ! In answer I used to soak them before a wash in a Permethrin solution. This used to be readily found as a horse litter insecticide, but now appears quite unavailable. It was quite an expensive process too.

In reply to davidw3:
>ticks need 60C hot drying for an hour to kill them.

You could freeze them instead.