Improving the testing, diagnosis and treatment of Lyme disease in line with current research not biased American guidelines
Lyme disease is frequently misdiagnosed, in the early stages as flu, cellulitis, rash, fevers; in the late stages as chronic fatigue syndrome (ME), fibromyalgia, multiple sclerosis, motor neurone disease (ALS), lupus, glandular fever etc. Despite many of these latter syndromes having no diagnostic test or treatment, a diagnosis is made due to the lyme test being negative in many cases. Yet a paper by the former head of the lyme borreliosis unit showed 14% of screening tests do not pick up a borrelia infection (http://www.ncbi.nlm.nih.gov/pubmed/21117376 ), without a positive screening test the NHS will not pursue further testing or diagnosis of lyme disease. In glandular fever, 3 negative tests aren't sufficient to rule out a diagnosis, yet in lyme the NHS/HPA refuse to accept the possibility that their current tests are inadequate.
In the lucky early cases identified by the erythema migrans rash or those detected by blood test between 7 and 28 days of antibiotics are prescribed. This is also insufficient (http://cid.oxfordjournals.org/content/43/6/704.full and http://www.ncbi.nlm.nih.gov/pubmed/21117376) with documented cases of active infection continuing post treatment - these cases will not be treated any further by the NHS. Other cases may relapse many years after the original infection, this is not treated by the NHS either.
Lyme disease can be complicated by a number of co-infections including bartonella and babesia - non-classical presentations of these infections due to altered immune response from multiple infections are not accepted by the NHS either.
Testing, diagnosis and treatment of Lyme disease and its co-infections are completely inadequate in the UK. NHS guidelines are based on flawed American guidelines, which suffered heavily from conflicts of interest by panel members, and are based on the American, not European strain of the bacteria; they need to be updated to reflect current research, European presentations and the interests of patients who have to leave the country to get proper treatment.
This cause has already gained 10,000 UK signatories at http://www.ipetitions.com/petition/uklymepetition/ but now needs the help of 38 degrees to make the NHS and Department of Health take notice.
Pauline Whiteley commented
My son has been ill for 21 years with this with not much help at all
I'm seropositive for borrelia (Lyme disease) yet I'm still denied treatment by the same organisation (NHS)which ordered the tests at my request after 15years of misdiagnosis.
it is terrible that the Nhs will not help with this terrible disease and sufferers just cannot afford to pay what it costs for private drugs
Daniel Christie commented
Off the wall more shocking nhs conduct. Really revealing as I had only heard of it in a vague manor unsurprisingly not any details. Surely this cannot go on. Awful.
How can the NHS ignore such evidence from the Bristol University , & experts on the BBC with them devoting time on several different programmes.
It is a serious problem, wake up NHS.
Please release my daughter from this mental torture & pain........
Clare Roullier commented
Something must change. The current system is appalling. I had a 2 year fight to get a course of antibiotics. Have been left with bad joint pain, swelling and cracking but can't get any help. The NHS and NICE information is outdated and wrong; Doctors are ignorant and defensive and the patient is left to deteriorate with no help or support.
I have been supporting this campaign for 15 years with affected friends in several countries...and find National Parks, Royal Partks woefully inadequate at informing their public about the risks, procedures to check ones body and support for seriously worried patients.
Sandi Beaches commented
My dear sister Jane Shuffrey comitted suicide in March after 50 years of hell and they still say it was in her mind....She didnt want to die, she wanted to be free of painand endless suffering...she wanted to tend her garden andcook for friends...by the time she found a diagnosis privately she had spent probably £3-400000 yes thats not a mistake on private medical help. She was dismissed....invalidated...she just had enough of her grief. Please insist that your GP delves into this and doesnt dismiss you. I will live my life carrying her anger and trying to live the life she couldnt. Good luck and God bless to you all. I BELIEVE IN YOU
Joy birdsey commented
There are so many people including children who are most likely given the wrong diagnosis of ME when the possibility it could be lyme.
When I was at my most fragile, I put my faith in the hands of the NHS who after a year told me there was nothing else they could do for me.... I now have a private diagnosis of Lyme, but at a cost of both my life and bank account. They now refuse to accept my American test results and the battle continues... We need to spread awareness and knowledge of treatment that works long term. This disease exits, ruins lives, and runs havoc in our bodies. A small tick causes a big problem and its time this country accepts it and begins to help the thousands who are suffering.
26yrs of disbelief I was ill by the NHS doctors. Now disabled with Lyme arthritis!
We need to get good LLMD s to the UK to educate our medical profession...this is bigger than the aids epidemic by far...it will wipe out millions of people worldwide if we don't raise awareness and treatment protocols...the American have already gone through their Lyme wars...we need to begin the same war with our NHS
I was insured with Bupa..even their doctors knew very little about Lymes and its co-infections..I was able to educate the doctor.. Unfortunately this is what we are all faced with..teaching the doctors about our illness..and that it needs a multi treatment approach all at the same time to have any chance ...trouble is most doctors only think in terms of treating one thing at a time...
Nina Maggs commented
Something should definitely be done, the UK are being ignored by their own medical profession!
joel langton commented
I have Lyme. Found out in the last few months. It has held me back all my adult life without me knowing what was going on. I went to my GP with symptoms 10 years ago and many times since. Only when I insisted I be tested two years ago did they reluctantly run a test, which then came up negative.
I had to go to Belgium to see someone who could test me for all species of Borrelia that cause Lyme Disease and have been found positive. I am bed bound much of the time so a trip to Belgium, as well as being very expensive, is not a minor undertaking. I am now on treatment but should have been a long long time ago, and on the NHS - I still pay me taxes today, but get no help from the NHS for my illness even now, as they wont recognize my treatment needs for Late Stage Lyme Disease. The current situation is an outrage.
I support this. It took five months for the NHS or rather my incompetent GP In Midhurst West Sussex to diagnose me . They even ignored a positive result. West Sussex Health Care are the worst with the so called specialist there diagnosing first a brain tumour and then " imaginary illness". On discovery, after receiving treatment in Europe, they admitted to " making a mistake" and not knowing about the disease
Mavis Thornton commented
We do not need to read all the notes here we would agree with it having been fighting the nhs for8 years My daughter has had every test and so on.We have had it all tested in Bremmen and California as positive.Not so here because we couldnt afford it as a country.My MP has put 10 questions n the House of commons for me.He is the MP for shrewsbury shropshire.All my daughter needs is there in the hospital every time she is taken in.What a waste.Antibiotics taken orally have really caused trouble now.Why doesnt this country try preventative medicine rather than curitive?We are lagging so far behind .
All patients in this country are denied proper diagnosis and treatment by the NHS . The way Lyme patients are treated is inhumane. All Lyme patients deserve to be diagnosed and medically treated along with care and respect just like any other patients who are ill.
clare turner commented
Misdiagnosed as ME/CFS by NHS for 10 years Private tests positive for Lyme Borreliosis plus 3 co-infections, causing even more damage. A mix of antibiotics was getting me better but I can no longer afford them. Now I am getting worse fast. Soon I won't be able to cope independantly. Dreading a future of total disability, total dependance for several years or suicide while I'm still able.
Jeannine Comtois Bennett commented
Lyme Disease is the most prevalent vector borne illness in the world, as well as the fastest growing. More attention needs to be paid to the diagnosis and quick treatment in order to avoid years and years of chronic Lyme.
I was diagnosed in 2005 with Lyme and have been on and off treatment ever since. I don't recall a tick bite, or ever had a rash. I had symptoms for many years before I was properly diagnosed.
This needs to STOP