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.
Margie Davidson commented
I was lucky my doctor picked it up about 5 months after becoming infected but it recurred 5 years later - doctor had retired and new doctor had never seen Lymes- sent to specialist - he said Lymes could not recur and gave me a long involved explanation. When he finished he asked how I felt about what he had told me- I said I didn't believe him. He then said he would not need to see me again and took me off his list!
Another new doctor who had never seen Lymes before said you didn't get a rash with Lymes! Walked out and made another appointment next day with one of the doctors who had treated me at the start. He immediately said Lymes and prescribed more antibiotics.
Paula DArcy commented
Bitten 13 yrs ago & had a false negative western blot (HPA0 No treatment offered despite having Erythema Migrans. after 12 yrs 9now Chronic), sought a private test which was positive (Igenex). Given 6 weeks abx then refused further treatment. A further test 1 year later was also positive. Saw Infectious Disease consultant at UHL who offered me antidepressants! I am completely disabled by this infection & appeal to the Dept of Health to use recent research in order to influance the treatment for Lyme... both new & chronic.
Denise-Something wrong with site-will not let me share with facebook etc. Can you sort it?
Out of the quarter of a million patients with ME/CFS in the UK I wonder just how many have an underlying tick-borne infection? How will they ever know if testing is not picking up all the strains, if antibody testing can miss patients who do not emit an antibody response (lyme is known for evading the immune system) & even IF patients are clinically diagnosed (which is very rare) then can they expect adequate treatment (the answer in most cases is no!) Surely the benefits system are keen to get people back to work, so why do they turn a blind eye on thousands of sick patients who could be helped to get their lives back? Many doctors are afraid to treat long term or clinically diagnose due to the controversy surrounding lyme, but is that the patient's fault? So let's get down to respecting those docs willing to treat & respecting the voices of patients who only want what's right. Remember that ticks aren't fussy & children as well as adults are at risk - we need to do more to get them well & not allow them to fall into the awful trap of being told that 'it's all in their heads'. Come on NHS, you can do more!
Denise Longman commented
We now have 8,600 online signatures and 1000 on paper.on this topic, called The UK Lyme Petition but we need the help of 38 degrees!
That's nearly 10,000 signatures - so there really is a groundswell of people signing and a danger to public health from Lyme disease, There are thousands each year being told they have tested negative, and then left to suffer, and they get more ill as the years go by.
I've run out of votes but this is more important than anything I have voted on...
I have Lyme and no treatment. As do so many others in the UK and worldwide. It's time we had adequate testing, clinical diagnosis and treatment.