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.
clark ellis commented
this is important. needless suffering of people who pay their taxes for a protective healthy system which is not delivering any care for these people.
We must try try and try again to get the proper diagnosis for this disease.
I still find it astonishing that in a country with one of the most advanced health systems in the world, doctors here (and I'm in Germany which is seen by other countries as being more enlightened about lyme borreliosis) are incredibly ignorant about this disease. Two doctors mentioned to me I had borrelia in my blood but the laboratory said it wasn't significant so the doctors were also casual about it. Thus, it went five years untreated: five years of mysterious symptoms and wrong and damaging treatments. At the end I was falling into a horror coma. I had severe neuroborreliosis, ie a bacterial brain infection. It was a dramatic fight to get treatment. A very courageous doctor began treatment with IV antibiotics and antibiotic combination therapy. It took another 5 years to be able to come off them. I'm left with residual symptoms. Why was I not told how dangerous borrelia is? Why was I not believed? Why, when I was believed, did doctors have no idea how to treat it. Why must I live with the fear of it coming back?
Jane Shuffrey commented
I have had lyme for possibly 50 years and have been through a and continue to go through hell. I was diagnosed last year privately as i have had to do for the last 40years,.the medical profession have called it just about everything including their favourite with peolple really sick 'conversion syndrome'".i feel really angry and despairing that my whole life has been agonising and miserable. It is time the medical profession listened to us lyme sufferers and stopped dismissing us as this disease is truly terrible.
Iain Lowson commented
After 6 months of symptoms stopping me working my GP told me I had I had "Viral Shock", and was finally discovered to have Lyme disease only after visiting Cardiff to see and paying for clinical specialist who stated that I was showing sever signs of Lyme disease but the signs would not be shown by tests as I had been treated with short term doses of unsuitable antibiotic. 6 months of Antibiotic tablets prescribed by him and I started to feel better, but I have been left with depression and Arthritis due to the damage done by this terrible disease. My daughter had photographed the rash that came up on my leg which was the classic Bull's-eye but I was told when I showed this to my GP that this was a Bruise! I have been Medically retired due to sever depression from when I was 58 and have suffered great financial loss due to this!
Karen Smith commented
Worldwide Lyme patients are calling for further research and equal rights to health care.. surely that is not too much too ask?? Please help stop the suffering of thousands of patients - fund research for proper testing and adequate treatment. PLEASE.
It's a complete disgrace, nothing short of scandalous!
This should not be happening to people.
An enquiry needs to be held,
for those deemed responsible: to be held accountable!
This is a disgrace:
I have suffered many years in agonising pain, spent far too long bedridden. Treated by GP's and "so-called" specialists with derision and ignored.
Sick people can't fight back!
But; if they do manage to even begin to heal themselves (using private dr's etc). You can guarantee, that this injustice will be found out!
Joanne Drayson commented
I was one of the few whose GP was open minded so although my tests were negative she realised that as I responded well to antibiotics and had a clinical indication of having been infected then she was prepared to treat me. I recovered but sadly many thousands go undiagnosed and without treatment that could help them because our Dept of Health have cherry picked what science research they will read and followed IDSA restricted and outdated flawed guidelines. The reality is that giving inexpensive antibiotics not only helps people improve their health and lives but could make significant savings in NHS expenses and benefits as well as lost incomes in our economy.
Jan Davies commented
i would like to use all 7 votes for this campaign
i was dismissed by a gp when i went to him with the erythema migrans rash... over the next couple of years i learnt more about lyme disease and also became progrssively more unwell, and persuaded another gp to test for lyme borrellisis. the test showed positive, and the gp surgery had to ask for advice as to what to do next. so little awareness of the illness. following appropriate referral and further testing for the disease, about three years after getting the infection i recieved 28days iv antibiotic treatment - the 'standard'/maximum within the hospital/team. i experienced some improvement, but far from a full recovery, and continue to live with significant symptoms. i'm told i now have 'post lyme syndrome' and CFS, and there's nothing more i can access treatment-wise. i'm frustrated that had it been recognised and treated initially i might have avoided becoming so ill and also made a better, possibly full, recovery. and frustrated that there is little apparently known/recognised about long term lyme disease, and few treatment options. i don't necessarily think further antibiotic treatment would have helped (tho it was only after three weeks i began to notice a shift and would have liked to've had the option to continue for another couple weeks/so to see if there'd be any further shifts), but i would have liked there to be more options and flexibility wrt treatment. instead i was told that more than four weeks wouldn't make any difference, and they stick to their protocol, and that i now don't have lyme disease but have post lyme disease - the symptoms persist and they change the name because they've treated it within their protocol so that's that. it leaves me with a lot of questions as a person/patient. it's difficult having a poorly understood illness, for doctors as well as patients. but it's also difficult when there are different approaches and protocols in different countries, and to feel maybe in the uk that you're not actually getting appropriate/adequate treatment.
This is super important, not only in the UK, but GPs AND consultants seem to be particularly ignorant here. I was diagnosed and first treated in Germany, but still relapsed later, and got 3 weeks intravenous antibiotics, after which I recovered completely. Since then I have been relapsing every so often again, and recovered again with antibiotics, yet the medical profession here either just say they know nothing about the disease (learning something new seems to much to ask too!), or that there is no chronic/relapsing form of the disease, and if there is antibiotics don't help. This after 15 experience with this disease, remission after antibiotics, and getting progressively worse without antibiotics when I get a flare-up. How can they think they know better and deny treatment? And leave me to buying antibiotics from abroad, potentially risking my life by doing so. Great help indeed!
We need specialist clinics and experts with long-term experience in treating the acute and chronic forms in this country. It is a disgrace people have to either suffer all their lives as they never get diagnosed, or having to spend their life savings on treatment abroad!
Basic information about the early signs of the disease and how to protect against it should be given out at every GP surgery. I've talked to several doctors here who did not even know what a tick was, never mind borrelia......!!
Diane Morgan commented
I had a rash and then some months later, a positive lyme test with meningitis and facial palsy, I had to fight to get 5wks iv and 7 months oral antibiotics which has got rid of it, I have been well for a year now. I am lucky that as a nurse in a medical family, I could fight and understand the medical jargon that was used to try and flummox me. I was told by the neurology consultant that it was only the HPA at Southampton that was blocking my treatment!!! I cannot believe that this appalling treatment of very sick people is being allowed to continue in this or any other country!!
An ex Lyme sufferer! commented
Despite being fortunate to ave had successful diagnosis & treatment on the NHS after 5 months false diagnosis privately I do realise that many are not as fortunate under other NHS doctors and will support anything that brings about changes which will make ALL medical practitioners Lyme aware.
Brigitte Nicholson commented
No diagnosis after 12 months under the NHS. I felt I was not taken seriously and dismissed as neurotic. The cardiologist did very little in the hope that the problem would go away. It didn't. I had to consult a doctor abroad who diagnosed Lyme within 2 weeks. I had to pay for this myself. After a long delay I was given 4 weeks antibiotic treatment under the NHS but it was ineffective and I felt much worse than before treatment. I had learnt that no adequate treatment was available under the NHS and I had to go abroad again. Ifound a GP abroad who agreed to treat me - at considerable expense.
Linda Sibbald commented
I was bitten in May 2011 and despite having the rash at the time, I tested negative on the NHS test in October 2012 and was told I could not possibly have Lyme Disease because the NHS tests were so sensitive (this was by a consultant at the National Hospital in London) and that I had ALS and I should prepare for my death within 3 years. He refused to look at my positive Lyme test results which I had had to have done privately at great expense and wrote in his report after the consultation that I had only been clinically diagnosed and then proceeded to rubbish the private clinic. I cannot begin to tell you how this attitude made me feel.I would think animals are treated better than this.
I was infected 9 years before diagnosis. We need Doctors to have better understanding of the subtle presentations of the disease - only 30-50% will ever see a rash and symptoms come and go. Doctors need to look in order to find.
25yrs of being treated with disbelief by the NHS medical profession! At last we are beginning to get doctors to recognise Lyme disease
I contracted Lyme Disease, was treated with initial antibiotics, but GP very ignorant of it, has recurred at least twice.