Tick bites!

[PMG]

As we frequently lie on the floor to photograph stuff it would be a red-letter day if we returned from anywhere without one or more ticks! Also they appear on the body a day or two after a day out. I assume they hide or hang onto clothing and work their way to your body over sev hours/days. I haven't as yet felt the need to wash my clothing after every trip out and it would be difficult on holiday - when every day is a continuous yomp and lie down in the grass with the camera! We take them off with tweezers and if the head breaks we tease it out with a needle, then put on whatever topical ointment available - Tea Tree is good. So far (fingers crossed) neither of us think we have had symptoms of Lymes Disease, tho with the state of my arthritis (due to serious road accident back in '92) I would be pushed to know whether the joint pains I have is Lymes or not! Personally I won't keep taking antibiotics as I think there are hidden bigger risks out in the world like TB and I wouldn't want to become resistant to treatment. Its a fine line judgement I know - but I accept the risks of my hobby!

Pauline

[senua]

Thank-you for the information and links.

Have sent link to my brother in Kent. He has rabbits, guineapigs, chickens and aviary birds as pets. No harm in being cautious.

I often go for walks in some fields near here. No farm animals but is a favourite dog walking area. And have been blackberry picking over there.

Not noticed any ticks but I shall from now on keep an eye out. I stick to the paths any way but no harm in checking.

It's not going to stop me going on walks just has made me aware.

[Chalk Downlanders]

Originally Posted by Zildjian

Hi.

They have put me on high dose antibiotics. It will probably be 3-6 months before I see any improvement, but I will probably be on them for up to a year.

I see you are also from Kent, that is where I actually got the disease.

J C. I have an allergy to antibiotics so what the hell will I do if I get this horrible disease?

[Hobjob]

>>>
And the fact that we have at least three lymes
disease suffers on this thread does tend to
point to it being somewhat more wide spread
than the "remote chance" aluded to above
>>>

That is a conclusion that can not be justified
by the evidence.

People with Lyme disease are likely to gravitate
to a list like this and are likely to be well
informed about this little understood illness.

There has been an increase in cases reported by the
Public Health Laboratory service which report
all blood confirmed cases centrally. BUT, increasing
awareness of the disease amongst patients and
health professionals, greater access to tests,
and more sensitive tests will all have effected
this.

Cases that are blood negative, but clinically fit
the disease profile, will not be included in the
"official" figures as there is no obligation
for doctors to report the illness.

We just do NOT know the real incidence of the infection,
but it is still very uncommon in UK

Incidence in population
UK (end of 98) 0.32 / 100,000
France 16
Sweden 80
Slovenia 160

There were 796 cases reported between 86 & 98 in UK

It is most common in the New Forest in UK, but also
reported more commonly from Dorset and Wiltshire
BUT
The information I have read does not say that those
counties are where the infection was picked up.
It May be that people in Wiltshire, Dorset and non-new
Forest parts of Hants picked it up in the New Forest.
We don't know.


>>>
A short course of prophylactic antibiotic treatment
is far better than long term untreated Lyme disease,
which is a multi-systemic and potentially disabling
condition.
>>>

All treatments carry risks, and for anti-biotics the
risks are higher than for many other medicines.
Therefore the possible benefit vs the possible risk
has to be weighed up and currently, in the UK, with a
low risk of Lyme disease, routine anti-biotics
are not yet recommended, at least in Suffolk where
I live.

The balance of risk / benefit may change with time.



>>>
Personally I won't keep taking antibiotics as I think there
are hidden bigger risks out in the world like TB and I
wouldn't want to become resistant to treatment
>>>

I am not quite clear what is meant here, but let me
assure all that taking antibiotics for any reason
will neither make it more likely that you get TB, or that
any TB that you may get will be resistant to the
usual antibiotics used for TB (which are not used for
other infections).

It is also the bugs that are resistant, not the person
being treated.

>>>
J C. I have an allergy to antibiotics so what
the hell will I do if I get this horrible disease?
>>>

Some people do become allergic to several
antibiotics, but almost never to them all, and currently
Lyme disease is sensitive to a wide range of
different anti-biotics, so if you are unlucky enough
to get the infection there is bound to be something
that can be used

I hope this adds some clarity and does not further confuse

[celiar]

Originally Posted by Hobjob

People with Lyme disease are likely to gravitate to a list like this and are likely to be well informed about this little understood illness.

Why do you say that people with Lyme disease are 'likely to gravitate' to a board like this? I, personally, have many interests. I'm interested in music, poetry, gardening, cooking, photography, etc., etc. I belong to many different forums. I'm a qualified Masseuse and Reflexologist. I even do 'belly dancing' as a form of exercise, since I can't do anything aerobic. As I said I also have an avid interest in wildlife and the countryside, but being a Lyme disease sufferer, I feel compelled to warn people of the dangers of tick bites if the subject arises, as it has here (and I did not start the thread). Many Lyme disease sufferers have had to become well informed about their conditions simply because of a lack of knowledge/interest by the medical profession.

There has been an increase in cases reported by the Public Health Laboratory service which reportall blood confirmed cases centrally. BUT, increasing awareness of the disease amongst patients and health professionals, greater access to tests, and more sensitive tests will all have effected this.

I would respectfully ask you to give examples of exactly how “increasing awareness of the disease amongst patients and health professionals” has occurred. There is no annual national media campaign to warn of ticks, there are no Department of Health leaflets on display in GP’s surgeries. To my knowledge the NHS to date have held two ‘workshops’ on the disease and one symposium. There are no warning posters displayed around the various national parks and areas of outstanding natural beauty (AONB). Nor are they displayed in forested areas, such as the New Forest, so prey tell, just how are patients and doctors being informed?

Cases that are blood negative, but clinically fit the disease profile, will not be included in the "official" figures as there is no obligation for doctors to report the illness.

It is also the case that patients that are blood negative, but clinically fit the disease profile, will more often than not fail to receive any treatment at all, let alone be included in the published figures for what is after all only a ‘voluntary’ enhanced monitoring scheme, unlike Scotland, where it is deemed an officially notifiable condition. The reason for patients being refused medical treatment is down to diagnostic criteria as laid down by EUCALB (European Union Concerted Action on Lyme Borreliosis), in which it states:

'As a rule, microbiological findings are a major criterion for the clinical diagnosis of Lyme borreliosis. Serological examination is indicated in all cases of clinically suspected Lyme disease, i.e. when symptoms possibly associated with Lyme borreliosis are present.'

As I am sure you will be able to appreciate better than most, it is a contradiction in terms to define a clinical judgement on serological evidence, but that’s just one example of the lunacy that is accepted as “appropriate medical attention” here in the UK.

We just do NOT know the real incidence of the infection, but it is still very uncommon in UK

It is hardly surprising that the condition is still considered rare by our medical establishment given that there is only a voluntary monitoring scheme in place, and for all those that do not receive a positive blood test result, who then go on to be misdiagnosed as suffering from ME/CFS/FM or some other idiopathic illness presided over by NHS specialists. Currently in the UK there is accepted to be approximately 250,000 people diagnosed with ME/CFS, Scotland has the highest percentage per head of population of Multiple Sclerosis sufferers in the entire civilised world, and Lyme disease is known to be able to mimic both these conditions, yet still some doctors remain blissfully unaware of infected ticks within their local area, and of the possible implications for their patients health.

It is also hardly surprising that the disease is still considered rare by our medical establishment given its reliance on a two-tier blood testing procedure which was initially designed for the epidemiological study of Lyme disease, and was never intended for use as a diagnostic test of individuals. Yet to be officially recorded and accounted for, a patient must receive consecutive and increasing antibody titre levels for what is recognised to be a ‘stealth pathogen’, able to evade detection by our own immune systems by a number of methods.

Below is a list of reasons why a seronegative result might occur

1. Recent infection before immune response
2. Antibodies are in immune complexes
3. Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls)
4. Spirochete are deep in host tissue
5. Blebs in body fluid, no whole organisms needed for PCR
6. No spirochetes in body fluid on day of test
7. Genetic heterogeneity (over 300 strains of Bb alone with at least four additional species commonly found throughout the UK.)
8. Antigenic variability
9. Surface antigens change with temperature
10. Utilization of host protease instead of microbial protease
11. Spirochete in dormancy phase
12. Recent antibiotic treatment
13. Recent anti-inflammatory treatment
14. Concomitant infection with Babesia may cause immunosuppression
15. Other causes of immunosuppression
16. Lab with poor technical capability for Lyme disease
17. Lab tests not standardized for late stage disease

It is for reasons such as these, along with the disastrous results of the Lymerix vaccination trials carried out in America, that the Lyme support community of America were finally successful in taking the Centres for Disease Control and Prevention to court and in having Public Law 107-116 entered onto the statute books and signed by President Bush. One small excerpt from the final draft of the new legislation reads:

>>“The Committee recognizes that the current state of laboratory testing for Lyme disease is very poor. The situation has led many people to be misdiagnosed and delayed proper treatment. The vaccine clinical trial has documented that more that one third (36 percent) of the people with Lyme disease did not test positive on the most sophisticated tests available. The ramifications of this deficit in terms of unnecessary pain, suffering and cost is staggering. The Committee directs CDC to work closely with the Food and Drug Administration to develop an unequivocal test for Lyme disease.
The Committee is distressed in hearing of the widespread misuse of the current Lyme disease surveillance case definition. While the CDC does state that `this surveillance case definition was developed for national reporting of Lyme disease: it is NOT appropriate for clinical diagnosis,' the definition is reportedly misused as a standard of care for healthcare reimbursement, product (test) development, medical licensing hearings, and other legal cases.”<<

Borrelia is recognised to be one of the most complicated bacterial forms known to mankind and it is suffice to say that there is more unknown as to its true abilities than there is known. It is also true to say that currently in the UK ticks are known to be able to carry more than just Borrelia burgdorferi alone, but also Babesia, Bartonella and Ehrlichia to name but some of the recognised co-infections. Yet as far as I am aware, if a doctor does deign to offer their patient a Lyme disease test, given how incredibly rare it is, they are never forthcoming with offering additional testing for co-infections. So how many may have failed a Borrelia test, yet never been offered any form of testing for the other co-infections.

As I have tried to explain at length in previous postings, I do not wish to appear alarmist or alarming about the topic of ticks and tick-borne disease, but given the increasing tick population, lack of any reliable diagnostic testing procedure, or of any guaranteed course of medical treatment able to eradicate chronic late stage Lyme disease, I would most certainly rather be more aware than complacent.

[nightshade]

Celiar I for one appreciate your input on a subject that clearly needed
to be better publisized I never liked Ticks and like them less now
(thanks for the original question Rich) There could be hundreds of people
feeling unwell and not really knowing why,is there a leaflet that I could
give to the GP's at my local surgery?

[eeyore]

Originally Posted by celiar

Why do you say that people with Lyme disease are 'likely to gravitate' to a board like this?

To be fair to hobjob I think you will find that he mean that lymes disease sufferers would gravitate to this thread , rather than to the boards as a whole , which is fair comment as sufferes are likely to gravitate to discussions of their illness.

That said I agree with you about the general ignorance of the disease of some in the medical profession, and thus the lack of treatment provided.

in answer to nightshade point this http://scholar.google.com/scholar?q=...GB&oi=scholart is a list of scholarly articles on lymes which you could point your GP towards if he is not already aware of the condition.

[celiar]

Originally Posted by nightshade

Celiar I for one appreciate your input on a subject that clearly needed
to be better publisized I never liked Ticks and like them less now (thanks for the original question Rich)

Thanks Nightshade. This is definitely a subject that needs to be better publicised especially here in the UK.

This is a quote from Pest Control News (August 2006):

"........if we look at data from the Communicable Disease Surveillance Centre (CDSC), stretching back to 1986 for the UK. In combination with the Eurosurveillance data, it shows that incidence in England and Wales has not doubled or even trebled but has increased 18-fold from 1986 to 2005!”

Yet still Lyme disease is considered by many health professionals to be rare.

There could be hundreds of people feeling unwell and not really knowing why,is there a leaflet that I could give to the GP's at my local surgery?

There could indeed! However it is a sad fact that efforts to enlighten GP's are more often than not met with strong resistance, and in many cases direct opposition. They somehow see it as an affront, and most are unwilling to read literature on the subject or even discuss it. There are one or two more enlightened doctors in the UK but they are sadly few and far between. The experience of many people is that GP’s generally like to think they know best, even when the weight of evidence is to the contrary. I've known people who have turned up at their GP's surgery who have had a known tick bite, have the typical Erythema Migrans rash that can accompany Lyme disease (although it's absent in over 50% of cases), and have common symptoms of early Lyme disease infection, i.e., flu-like, headaches, sore throats, fatigue etc., yet the GP has said categorically that they can't possibly have Lyme and offered no treatment. Lyme disease can then lay dormant in the system for weeks, months and even years and be triggered later by another illness, pregnancy or a trauma. So instead of it being dealt with early by a short course of antibiotic treatment this person can then go on to develop a multi-systemic illness which is much harder to deal with. GP's also have a habit of dismissing information that comes from the internet. It’s an uphill struggle!

There are leaflets and posters available for download free on www.bada-uk.org, as I’ve suggested previously. I can’t stress how important and informative these leaflets are. Although they are aimed at ‘at risk’ groups they do contain information about the threat to the UK, the various tick-borne diseases, as well as advice on how to prevent them in the first place. I understand that some GP’s have been willing to display them though this is not always the case unfortunately.

Tick awareness and the danger ticks represent in the transmission of these horrendous infections is really best done amongst the people who are in the 'front line'. 1 in 3 ticks is infected, so anyone who goes out into the great outdoors needs to be aware of the risk so that hopefully we can prevent it happening to them in the first place, or to enlighten them as to what the cause may be if they do become ill. Early treatment is essential.

The best thing you, and others, could do, is to download the free leaflets available that BADA-UK have on their website, for yourself, but also make them available to the groups you belong to. There are posters free for download too. Those groups could include, golfers, ramblers, horse riders, anglers, mountaineers, campers, wildlife photographers, the list is endless. Also use the links on the FAQ's and FACTS pages for more in depth information that can be printed off.

BADA-UK also offers a dedicated discussion forum on their site, of which I am a member. The forum is called ‘Tick Talk’ so is very pertinent to this topic. All are welcome to participate and it would be good if we could find a way to improve community awareness too. They offer a selection of ideas on how individuals can raise awareness amongst their local community, and of course they are always open to new suggestions and ideas.

For some who may already have been infected with this devastating infection, like me, the motivation and passion to prevent others from experiencing a similar fate is strong. BADA-UK is a group of patients all affected by Lyme borreliosis along with a cocktail of other known tick-borne diseases. They also happen to be the only charity in the UK actively promoting and offering improved understanding and awareness of ticks and the diseases they can pass on. It is only through the efforts of groups such as BADA-UK, and individuals such as you, that the powers that be will finally wake up to the ‘ticking time-bomb’ we have in our midst.

[senua]

This might be of interest:

Scientists Identify Immune System Trigger For Fighting Lyme Disease

Researchers at the La Jolla Institute for Allergy & Immunology (LIAI) has announced an important finding on Lyme disease that could eventually lead to the development of a new vaccine to prevent this tick-borne disorder.

http://www.sciencedaily.com/releases...0822150046.htm

[celiar]

Originally Posted by senua

This might be of interest:

Scientists Identify Immune System Trigger For Fighting Lyme Disease

Researchers at the La Jolla Institute for Allergy & Immunology (LIAI) has announced an important finding on Lyme disease that could eventually lead to the development of a new vaccine to prevent this tick-borne disorder.

http://www.sciencedaily.com/releases...0822150046.htm

It remains to be seen whether it's any better than the Lymerix vaccine against Lyme disease that actually made people ill with, yes you've got it, Lyme disease!

I'll be watching this space.