collecte section Bourgogne

https://www.helloasso.com/associations/association-france-lyme/collectes/section-bourgogne

"We need more awareness to the fact that Lyme tests are not accurate and often presents as a false negative therefore thousands of us have it long term as we have been given the wrong diagnosis for our symptoms



"We need more awareness to the fact that Lyme tests are not accurate and often presents as a false negative therefore thousands of us have it long term as we have been given the wrong diagnosis for our symptoms. Also it is not just passed by ticks it is on many insects and also can be passed mother to child and sexually but this countries medical community deny that. We have our head in the sand about Lyme in this country and it has become a ridiculous situation where so many of us are suffering terrible consequences and many members in one family, mine included. I wish I could get someone on tv to do a follow up documentary as so many of us want to get more info out into the open. That is why we are having a worldwide Lyme protest on May 10th and taking our protest to the department of health in Whitehall. Thousands of us are very sick and need help on the NHS as we have spent everything we have and more to get private healthcare abroad. Doctors are not allowed to treat us long term over in the UK and we are just left to suffer terrible consequences. This is like an Aids story all over again. It needs bringing out into the open."



Conditions

Lyme Disease

Lyme disease can be passed on to humans by tick bites. Ticks are small parasites, often found in woodland, which feed off the blood of mammals. They are normally red-brown colour, but become paler as they feed. The most common symptom of Lyme disease is a red circular rash that looks like a bull’s eye which develops around the bite mark. Other symptoms include tiredness, fever and blurred vision.
When the infected tick bites it usually releases the bacteria after a period of 36 hours, though, in some cases, transmission can occur prior to 24 hours. Though tick bites are hard to notice because the bite does not cause pain, remove a tick as soon as you spot it to prevent infection. This is relatively easy to do with a pair of tweezers: steadily pull the tick away from the skin avoiding squeezing or twisting the tick. It is best to remove all of the tick, but if the mouth parts remain in the skin, don’t be alarmed. Though this can cause local infection, you are not at risk of Lyme disease when the tick’s body is not attached to the mouth part. For a detailed description of the best method to remove ticks, universally accepted by all disease prevention authorities, visit: BADA-UK. It is important to remove ticks correctly, as incorrect tick-removal techniques can increase the risks of disease transmission at any time by inducing regurgitation of the tick’s saliva and gut contents.
If Lyme disease is diagnosed in its early stages, within the first 30 days, it can be treated successfully with 2 – 3 week course of antibiotics. Diagnosis is made through two blood tests which look for antibodies fighting the bacteria in the blood. If the disease is left untreated for many months it can lead to arthritis, nervous system problems and meningitis. So it is very important to see a GP if you suspect you have been bitten.
The most common symptom of Lyme disease is the Erythema Migrans (Bull’s-eye rash), but not all patients present with this. In fact, of the last available figures for laboratory-confirmed cases, only 32% presented with the rash. As sometimes rashes can be hidden under body hair or hair on the scalp, it is important that anyone who develops flu-like symptoms or sudden ill health following a tick bite should visit their doctor for advice.
You can reduce the risk of being bitten by wearing long sleeved clothing, tucking trousers into socks, and wearing hats during any activity in woodland or heathland areas. Insect repellent can also be used as a deterrent, and make sure to check children thoroughly for any ticks after any countryside activity.
For more information on Lyme disease, visit the following sites:
BADA-UK
Lyme Disease Action
British Lyme Disease Foundation
What the Men in White Coats Say

Comments and Questions

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It is terrific to see Lyme disease be aired on TV as more people need to know about it to widen the level of prevention. Sadly testing can be hit or miss & it may take 4-6 weeks to develop antibodies, also the strength of immune response, type of strain (of borrelia)& antibiotic therapy can affect the results so waiting for a positive can delay diagnosis. Using a 2 tier system also has its flaws & yet consultants are unwilling to accept any other form of testing even when a patient offers to pay for it. I am sure (because of this) that there are many being misdiagnosed as ME or MS & are left untreated & therefore under reported. I hope more improvements can be made to help patients get diagnosed more quickly piecing together symptoms & history of tick bites & not solely relying on testing. Early diagnosis is key to prevent further complications which may became chronic in nature..
Thanks for raising Lyme Disease on the programme. However, only about 50% of people get the bulls eye rash. I did. I had antiobiotics (four weeks) however it was doxycycline (the generally recommended one by nhs) which doesn't pass the blood -brain barrier to my knowledge. And the problem with this is that when lyme bacteria enter the body some immediately (esp. European variants) head upthe cns and encyst and lie dormant. So if going to your doctor you want to really inform yourself on the type of antiobiotics to take. And Lyme is thought to be massively underdiagnosed. In germany alone last year insurance companies said there were one MILLION cases. Even the iceman had it thousands of years ago. It's a disgusting illness that affects all systems - and yes antiobiotics will relieve some symptoms but as everyone else says GPS will try to run a mile, go by the 'advice' on their computers or refuse to believe you have it. Even when there's documented clinical signs and you have been bitten. Personally I wouldn't be functioning without all the private help I have had - particularly by my acupuncturist, herbal medicinalist and everything else I have and continue to do. It is pernicious and pervasive. What is the nhs and the hpa up to?????
I live in the Highlands of Scotland and got ill in May 2011. I was diagnosed by blood tests in July 2011 after two locum GPs explored all sorts of other possibilites (including neuroses - a common Lyme sufferer experience). In the end it was me suggesting to my regular GP that my weird symptoms of cramp, muscle twitching, exhaustion, brain 'fog' etc might be Lyme. I had no erythema migrans (bullseye) rash. Unusually, I have had brilliant support from my GP and progressively larger, longer, courses of antibiotics. I am getting better, slowly, but it cost me my job, almost cost me my marriage, and I had to struggle hard to get effective treatment at first. If I had to go abroad for testing and treatment, and pay for the drugs, like many others are forced to do I would probably be bed ridden by now.
Thank you Embarrassing Bodies for sharing information on Lyme Disease there is still so little awareness among the general public and lots of ignorance among doctors- not their fault they have been mislead by narrow guidance and cherry picked science. At last Dept of Health say that HPA are working with the charities to find better testing - so they should as research shows tests can miss up to 50% of cases. Antibiotics or steroids can skew the test but also there are many other reasons why tests are not reliable. Sadly doctors think they are 100% and patients are refused treatment unaware of the limitations of the tests. Also Dept of Health and HPA supported research done by James Lind Alliance for charity Lyme Disease Action - the findings can be seen on LDA website and NHS Duets Database - there are many uncertainties over treatment. As we go live with Public Health England website we can expect changes to information reflecting these uncertainties although it can take years for science to be reflected in medical practice. It took 5 doctors and 3 Rheumatologists 4 years to diagnose me with Lyme Disease after a chance course of antibiotics significantly improved my symptoms. I had seen a doctor with bites, bulls eye rashes summer flu and migrating arthralgias before a chronic arthritis and muscle weakness developed. Over time my diagnosis were Fibromyalgia, ME/CFS, Muscuol skeletal Disease, Polymyalgia Rheumatica ( 20 months steroids) but once on antibiotics my symptoms gradually improved and I was able to gradually come off the steroids for PMR diagnosis. It took many months to recover at my worst I struggled to raise from a chair and walk across a room, I was unable to walk up or down stairs properly for 3 1/2 years and was retired early from the Civil Service on the grounds of ill health. Now I have no pain , no arthritis, no muscle weakness and can garden and cycle again all that on just antibiotics. One has to question how many other people will suffer like me unaware that they have actually got a bacterial infection that can be treated. There are a growing number of doctors and consultants in the UK who now support Lyme Disease Action charity because they themselves or their family member have sufferred Lyme Disease and failed the short duration of treatment that NHS has up to now advocated.
Same old story I'm afraid. My wife fell ill back in 08. Excrutiating neuro pain, bone pain she calls it. Chronic fatigue, insomnia, creeping flesh, brain fog, hallucinations, joint pain and many other symptoms all came on in the space of a couple of months. Waited months and months for NHS tests then had to be re-tested when they lost the 1st set of results only to be told nothing wrong, all in the mind. Paid for private MRI's and bloods to be tested in the states at world renowned testing centre. Surprise surprise highly positive for Lyme Disease. Still no help from NHS. Our private clinician said this would be the case and as we could not afford the private treatment he said the best he could do was to make a working diagnosis of fibromyalgia which the NHS would recognise and treat with medication that may help the neurological symptoms. To this day we are in debt, in pain and at the mercy of a health service that is totally inept and ignorant of this dibilitating illness.
All this has got me wondering. I have all of these symptoms, severe joint pain, back pain, sleep dissorders,night mares/terrors waking gasping for breath, severe fatigue, confusion, headaches, depression,feeling sick countless times throughout the day.This has all been happening since the birth of my last son (7 years ago) since all my problems started I have been diagnosed with irritable bladder (had a bladder infection that was undetectable from urine samples and only found after a systoscopy),inflamtion, bursitus of the hip, tennis and golfers elbows and also i have been on prostap injections for twenty months to stop my periods as the severe pmt i used to suffer from has become worse and had changed from anger and mood swings to terrible anxiety, which also means i am now waiting to have overies removed/hysterectomy. I was also very aneamic due to menorrhagia which i am aware could have caused my joint pain and i also know that prostap can cause joint pain too but the chronic pain i have had in my joints had been going on much longer. I have finally been able to see a rheumotologist who is running various tests for fybro, psoriatic arthritis, hypermobility syndrome and sjurgrens syndrome (yes i have dry eyes, mouth too!)but after reading lots of info on the net regarding lymes i think this may be whats going on with me. I was always an outdoor person, camping, hyking, cycling in the great outdoors ignoring any insect bites that didn't seem to bother me too much! until i became too weak to do it anymore im 41 and used to be very active!! i will wait and see what comes from my next test results but will definately be asking doc about lyme disease. thank you EB x
I was bitten by a tick in 2007. GP had no clue about Lyme Disease. Since 2011 I've suffered from Pericarditis, Pleurisy, Liver Failure, Fatigue, Noise Sensitivity, crippling neuropathic pain.. The NHS have no clue how to diagnose or treat Lyme and the Department of Health do NOTHING to change the situation, even though they're well aware of it. Don't let your life be ruined - prevention and knowledge is key here.
I have had Lyme disease for the past 3 years, suddenly fell very ill overnight in 2010 with full blown neurological symptoms, Gps and specialists fobbed me off with all kinds of diagnosis's from depression to MS and Fibromyalgia. Nobody took me seriously, I continued to deteriorate to the point of being completely bed bound and in extreme pain. I finally stumbled across Lyme Disease and tested positive from 3 different labs overseas, my NHS test was negative. I now have to see a specialist in the US and pay for all my own treatment as the NHS have just left me to rot. I have been on treatment now for over 2 years and am starting to slowly get better. Lyme is an extremely serious condition with the most horrendous symptoms and consequence's and our health system is failing us, we need better testing and treatment, and GPs need to be brought up to speed, as this disease is now pandemic.
We need more awareness to the fact that Lyme tests are not accurate and often presents as a false negative therefore thousands of us have it long term as we have been given the wrong diagnosis for our symptoms. Also it is not just passed by ticks it is on many insects and also can be passed mother to child and sexually but this countries medical community deny that. We have our head in the sand about Lyme in this country and it has become a ridiculous situation where so many of us are suffering terrible consequences and many members in one family, mine included. I wish I could get someone on tv to do a follow up documentary as so many of us want to get more info out into the open. That is why we are having a worldwide Lyme protest on May 10th and taking our protest to the department of health in Whitehall. Thousands of us are very sick and need help on the NHS as we have spent everything we have and more to get private healthcare abroad. Doctors are not allowed to treat us long term over in the UK and we are just left to suffer terrible consequences. This is like an Aids story all over again. It needs bringing out into the open.
Priority attention - Health hazard broadcast on Channel 4 Just watched Embarrassing Bodies. You have just broadcast that Ticks should be removed by slicing off with a credit card or pulled up with a pair of tweezers. Removing a tick in this way will result in the tick's head being separated from the tick. This allows the tick's head to continue to burrow into the skin, and will cause the infection that can lead to blindness, etc, etc. It is imperative that the tick is removed by twisting it and ensuring that the head is still on the tick after removal. You never mentioned that on the program. Search the web for O'Tom tick removal tool and read more at http://www.dorsetdog.com/health-care-tips-and-tick-removal#tick
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