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Nelly
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Très bon article du Daily Telegraph (enfin!)

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http://www.telegraph.co.uk/health/85119 ... doors.html

Deadly Lyme disease on increase as more of us spend time outdoors

Why a tick bite could ruin your summer if you develop Lyme Disease

Michael Palin calls it “one of the most unpleasant illnesses to which travellers can be exposed”, a rather stoical description for a disease that can cause blindness, deafness, facial palsy and excruciating pain – and can be caught at this time of year in your own back garden.

Cases of Lyme disease have tripled in the past 10 years as more and more people take up outdoor pursuits. It comes from the bite of an infected tick and can attack the central nervous system in unpredictable ways. Although no bigger than a poppy seed, the insect inflicts a disproportionate amount of damage when it decides to leave its animal host – typically a deer – in search of human blood. A cunning operator, it abseils down from long grass and hooks on to unprotected skin, anaesthetising as it bites so that its victim has no warning sting, no reason to seek critical early treatment.

The symptoms that develop over the next few days and weeks are so complex and so easily confused with those of other conditions that they are frequently misdiagnosed. Although antibiotics are commonly prescribed when a blood test has proved positive for Lyme, according to specialists there is no good evidence about which type of antibiotic is most effective.

Stella Huyshe-Shires, 60, waited three increasingly desperate years for confirmation that she had Lyme disease. In that time, she suffered intense pain, fatigue, loss of hearing, stiffness in her joints, panic attacks and a general inability to function normally. Eventually, she had to take early retirement on grounds of ill health.

She was bitten, unawares, while working in her garden at Sidbury, east Devon, in 1999, and developed an irregular circular rash on her thigh. “It didn’t hurt and it didn’t sting, but it went on expanding,” she says. “When it started to encroach on my groin, I went to the doctor. He gave me some steroid cream. The rash faded, and I thought no more of it.”

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Then she started to have other symptoms. She became hypersensitive to other people’s voices and lost 20 per cent of her hearing. Two months on, she had pains behind the knee, under her feet, between her shoulder blades and, most severely, down her spine. She woke with palpitations in the middle of the night. For the next three years, this bizarre set of symptoms alternated, receded, returned.

Her husband, Stephen, came across Lyme while researching a rheumatological condition, and his suspicions were aroused. “Do you remember that rash you had?” he asked her. It was the characteristic “bull’s-eye” rash of Lyme.

A blood test proved positive. Huyshe-Shires was put on low-dose antibiotics for two weeks – standard treatment for Lyme. “It made absolutely no difference,” she says. “New symptoms, such as numb hands and a sensation of walking on glass, were happening all the time, as well as the old stuff. It was frightening. I asked to be referred to a neurologist in Exeter.”

After another “very positive” blood test, she went to hospital for two weeks of intravenous antibiotics. “I thought I was going to get better. I got worse. From then on, it’s been a fight to get anyone to pay any attention.”

But Huyshe-Shires is not your average crushed and disappointed patient. She has a useful degree in agricultural botany and worked as a plant pathologist before joining the IT department of the NHS in Exeter. She joined the charity Lyme Disease Action in 2007 and is now its chair, lobbying MPs to change the rules governing the use of antibiotics.

Doctors in Britain follow the advice of the Health Protection Agency, which adheres to guidelines set by the Infectious Diseases Society of America. The guidelines state that patients should not take antibiotics for longer than 28 days.

“Scientists have found that Lyme can survive a short course of antibiotics,” she says, citing a recent paper form the London School of Hygiene and Tropical Medicine, as well as other sources. “That is why we are urging the Department of Health to establish clinical trials into the effect of long-term antibiotic treatment for the condition.”

The charity also takes issue with the department’s claim that blood tests are 99 per cent sensitive to Lyme (some people with Lyme do not produce enough of the right sort of antibodies to achieve a positive blood test) and its assertion that “there is no biological evidence of symptomatic chronic Lyme disease among those who have received the recommended treatment”.

The overriding problem, she says, is doctors’ lack of awareness and knowledge of tick-borne diseases. “Many people with typical symptoms will not be tested for the disease. They remain undiagnosed or misdiagnosed.”

A fellow Lyme-sufferer, Sue Ockwell, a director of Travel PR, says: “It is terrifying how little recognised Lyme is. The worst is that you cannot get anyone to take you seriously. You are made to feel a loony, on top of feeling desperately ill. Lyme is so complicated that you end up almost being your own physician.”

Ockwell was struck down with arthritis-like symptoms in 2007 but not diagnosed with Lyme until a year later. In her case, Lyme led to the autoimmune muscle disease dermatomyositis, which in turn may have triggered Hodgkin’s lymphoma, for which she has just finished treatment.

“With Lyme,” she says, “you learn to expect anything. It manifests itself in many strange ways. No one knows whether Lyme has gone or whether it has been kicked into a corner by all the other drugs I have had.”

Huyshe-Shires is still in its grip, awaiting a decision about the next stage of treatment: probably more and different antibiotics but with a maximum course of 28 days, she believes the treatment will not be long enough.

“The most extreme of my symptoms now is back pain, which can make me cry out in the night. The pain goes down the back of my legs, making it uncomfortable to sit, and I cannot drive for long because my hands hurt. The itching across my waist is sometimes so intense that it’s like standing in a nest of ants and being bitten.”

She believes that she and others can recover with the right treatment, but are disadvantaged by a lack of research into appropriate diagnosis and treatment. As the Netherlands Journal of Medicine reported recently: “The randomised studies that have been performed have been of questionable quality and were heavily underpowered to detect potential effects.” The report went on to underline the unreliability of blood tests alone to diagnose Lyme, its exasperated authors asking: “Why do doctors do their best to argue that patients consulting us about Lyme disease are over-demanding and should not be taken seriously?”

As Huyshe-Shires points out: “Doctors are hampered both by the Department of Health and by lack of evidence about what course of treatment is most effective. We do not know enough about the microbiology of this bacteria. It is not enough to say that because you have had ‘adequate treatment’, you can’t have Lyme any more.”


For more details, visit www.lymediseaseaction.org.uk
Léa
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Re: Très bon article du Daily Telegraph (enfin!)

Message par Léa »

Merci Nelly

Documentation claire sans équivoque et surtout parlant "vrai" des vrais problèmes!!!
A quand un tel article de par chez nous?? :joker
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Re: Très bon article du Daily Telegraph (enfin!)

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Merci beaucoup Nelly.
il faudrait le faire aussi dans les médias à grosse audience en France, il y a tellement de gens et de médecins qui ignorent...hélas. :?
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suite article du daily telegraph

Message par annie »

http://www.telegraph.co.uk/health/healt ... -bite.html

Lifecoach: I'm worried about my tick bite
Our experts answer your questions on tick bites and repetitive strain injury

Wear long sleeves and trousers if there is a high chance of ticks Photo: ALAMY

Q While walking in the hills recently I got a tick bite. Should I be worried about catching an infection from this?
A DR DAN RUTHERFORD WRITES:
Sheep and deer ticks can harbour the bug that causes Lyme disease (Borrelia burgdorferi).
Although much more common in the United States and mainland Europe, we are seeing Lyme disease more often in Britain but are still a long way from needing to worry about every tick bite.
Look out for a rash at the bite site appearing anything up to a month later. Eighty per cent of people who get Lyme disease have this rash. A flu-like illness is a common feature also in this time scale.

Blood tests can help make the diagnosis more certain if there is reasonable suspicion of Lyme disease.Over-diagnosis and over-treatment are problems that we need to work on as there is a fair bit of unnecessary worry going around about Lyme.
Prevention is better than cure, so one should wear long sleeves and trousers if walking in moorland or wooded areas where deer may roam. One should also check carefully for ticks at the end of the day.
If removed within 24 hours, the likelihood of an infected tick passing the organism to the host is much less. You can buy a small tick hook from outdoor shops and pharmacies that make complete tick removal much easier.

Q Should people with repetitive strain injury avoid using weights?
A TONY GALLAGHER WRITES:
Repetitive strain injury (RPI) is a term similar to “sports injury”, since it says more about how the injury was sustained than what it actually is. “Musculo-skeletal disorder” is probably more accurate and is used to describe conditions such as tendonitis, tenosynovitis (inflammation of the lining of the sheath that surrounds a tendon) and carpal tunnel (pressure on the nerve in the wrist).
Common symptoms are numbness, tingling, throbbing, tightness and/or hypersensitivity to touch. In these cases your body will tell you very quickly that having to struggle against weight is not what it wants.
Weight training for those without RPI is useful as a preventative measure but, once you have it, pain will alert you to potential worsening of the situation.
More likely to work for you is a combination of stopping the task that caused the problem, if possible (or you risk it turning it into a chronic condition), physiotherapy, painkillers, massage and improving the work environment.
Having said that, it is not clear why some people develop RSI and others, who do the same repetitive tasks, do not. It may be that stress increases muscle tension, and/or affects how the body feels pain. For more information see: www.rsi.org.uk.

SECOND OPINION Dr James Le Fanu
Repairing the survival statistics
Some time ago in this column I described how a Devon farmer owed his life to a nasty attack of belly ache. Retiring to bed, he was rubbing his stomach in the usual fashion when he noticed a curious pulsation just under the rib cage – like a balloon thumping away in time to his heart beat.
He dithered for a few months before consulting his family doctor, who organised for him to have an ultrasound scan. This revealed his pulsating balloon to be an aneurysm of the major artery, the aorta, running the length of the abdomen.
It was, by all accounts, a whopper, and while the operation to repair it with a Teflon graft was not pleasant, it was, he observed, “much preferable to the alternative”.
That “alternative” could have struck at any time – when his ballooning aneurysm would have burst with predictably dire consequences. Indeed there is a memorable simplicity about the relevant statistics: 95 per cent of those with a leaking aortic aneurysm succumb, while 95 per cent of those in whom it is repaired in time will survive.
That case was almost 10 years ago. Since then, things have moved on in a couple of ways directly relevant to my Devon farmer’s experience. First, and self evidently, it is sensible to catch an aneurysm – if at all possible – before it bursts, and here it now appears it is advisable for all men over the age of 65 (women are, for the most part, exempt) to have a single “screening” ultrasound test in anticipation of detecting an aneurysm early enough for effective treatment.
Next, the treatment itself has become vastly less traumatic thanks to a new technique that allows the aneurysm to be repaired from the inside, without the need for a major operation. This procedure has increased the chances of surviving this potentially lethal condition to a staggering 99 per cent.



lovemytelegraph
Yesterday 11:46 PM

Two years ago on a lovely sunny day I went on a picnic to a lake, sitting in a lightly wooded area with a nice view, where one was allowed a small campfire.
I was wearing capris, a t-shirt, short tennis socks & running shoes as the temperature was quite warm. It was a great outing & I was hoping to go to the same lake again that summer.

About 10 days later during the night my ankle was itchy so I scratched it. When it felt odd, I turned the light on, had a look & saw blood with a bit of a darker spot at the edge of it.
Thnking I had scratched off part of a dried scab, I pulled on what I thought was the remaining bit of scab.

That simple step resulted in my ankle bleeding profusely, it took over an hour to get it stopped with the help of a compression bandage & I spent the rest of the night with my leg elevated on pillows.
In the morning when I got up & checked, more bleeding began so it was time to go the doctor.

That led to a trip to emergency for a incision to remove what the doctor thought looked suspiciously like part of a tick embedded in my ankle & several stitches later I returned home.
It took a long time to heal properly as the tick had burrowed in quite deep.
When I pulled at what I thought to be the rest of a dried up scab, I had unknowingly pulled off part of the tick's body with the rest of it remaining in my ankle.

When there is so much bleeding you try to get that stopped first & may not notice anything but a hole with a dark centre which is exactly what I had & began thinking I may have gotten a puncture wound of some sort. I did not remember bumping into/getting hit by anything or experiencing pain at all, so it was a mystery.

When the doctor told me it was a tick it was shocking because I had never noticed a thing until the itching started.
The reason I described what I was wearing is that I now know to wear long lightweight trousers, a long sleeved summer top & sturdy runners with higher socks that go well above my ankles.

No more tick bites for me!
There is medical research that Lyme Disease in some people may lead to Fibromyalgia & Chronic Fatigue as well as other illnesses.
It was in the past few years that I learned about that research even though I have lived with the challenge of both of those chronic illnesses since 1987.



Jan Davies
05/07/2011 10:37 PM


I find the comment ' ...a fair bit of unnecessary worry going around about Lyme.' rather arrogant. I wish someone had 'worried' me about it when I was bitten in 2004. I didn't know anything about Lyme or ticks, the more 'worrying' people do about it the less likely it will be missed (by themselves or medical people), as it was in my case for 3 years. Also, it would have been good to see the correct figures. Shame to see this on the Telegraph just weeks after Tick Bite Prevention Week did so much for awareness in this country. I'm very disappointed.


Joanne Drayson
05/07/2011 09:18 PM
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Dr Dan it is clear from your comments that you follow the HPA advice on Lyme Disease, which says the IDSA Guidelines are authoritative.
There is a considerable body of evidence that supports alternative guidelines those of the International Lyme and Associated Diseases Society.

Reseach shows that about 40% of patients don't get the typical bulls eye rash, even when we do doctors are often not able to recognise it because they are taught Lyme is rare in the UK.

HPA suggest the annual figure in UK to be about 3000 but it may well be nearer 10000 based on Dr Ho Yen's interpretations (HPA Scotland)

Research shows that the blood tests can miss upto 50% of cases even Trinity Biotech who make the test kits used by the NHS say a negative test does not rule out Lyme.

If the opportunity to treat adequately in the initial stages of the infection is missed then patients can suffer years of chronic ill health.

It took 5 doctors and 3 Rheumatologists 4 years to diagnose me I had chronic symptoms of arthritis and muscle weakness and it was a chance course of antibiotics which significantly improved my symptoms that led my GP to suspect Lyme Disease.

It has taken many months of antibiotics to regain my health.

Sadly most doctors can not be bothered to read the considerable body of research which shows the complexity of this formidable bug. On a par with TB and Leprosy, a spirochete similar but more complex than syphillis. Who ever would treat any of those illnesses with a couple of weeks antibiotics and then say your remaining symptoms are in your head.

The recent workshop at the Institute of Medicine on the State of the Science on Lyme Disease and other tickborne illnesses leaves the listener in no doubt as to the complexity of Lyme Disease and other tickborne illnesses. Still available here


It is a sorry state that so many doctors and consultants are happy to be spoonfed restricted information by the HPA without doing their own thorough research or having an open mind.

Medicine is still evolving no one has all the answers and if the patient responds well to treatment as I did then doctors should be allowed to treat without HPA dictating how long.

It is interesting that many of the doctors I have met involved with treating patients for Lyme Disease have themselves or a family member been infected with Lyme Disease and found like so many others that the standard couple of weeks antibiotics failed them.

Further information can be found through
www.lymediseaseaction.org.uk

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frenchsusie
04/28/2011 07:26 AM
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I was bitten by a tick and nothing showed for some time. Then I had a small red spot on my tummy which over the months got larger and larger. I had two blood test - neither which were positive for Lyme Disease. In the meantime the rash was getting larger and larger - completely covering my tummy and going round my back. My doctor was totally baffled as I didn't feel ill or have any other symptoms. After 6 months my doctor suggested I saw a Dermatologist - who when I saw her immediately diagnose that I had Cutaneous Lyme Disease. A course of antibiotics completely cleared up the problem.
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lymediseaseaction
04/27/2011 11:32 PM
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It is true that most tick bites will not result in illness. However, confirmed case numbers have been growing rapidly over the last few years. We need to work on under-diagnosis and under-treatment, as doctors are not being given the up-to-date and accurate information they need to make well-informed and impartial decisions. Much of the official information is based on weak or inappropriately generalised evidence, and is contradicted by recent research.

Figures from the Health Protection Agency and other sources suggest that only about 40% of cases see the expanding ring shaped rash that is characteristic of Lyme disease.

Lyme Disease Action is a registered charity - for more information, see www.lymediseaseaction.org.uk
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