Sunday, 13 January 2013

UNCERTAINTIES IN NHS GUIDANCE ON TREATING LYME DISEASE

Uncertainties in Lyme Disease.

The Lyme Disease Action project with the James Lind Alliance has now officially

confirmed that there are uncertainties in Lyme disease diagnosis and

treatment. Doctors and patients have agreed on the top 10 priorities for

research at a workshop observed by the Department of Health and the Health

Protection Agency.

To read all about this visit Lyme disease Action website link here

UK Lyme Disease Priority Setting Partnership

The Top 10 Research Priorities

The following are the top 10 uncertainties in the diagnosis and treatment of Lyme

disease agreed by clinicians and patients.

 What is the best treatment for children and adults presenting with a) early Lyme

disease without neurological involvement and not including erythema migrans and

b) late Lyme disease of any manifestation? To include consideration of drug(s),

dose, duration.

 What key questions (clinical and epidemiological) should be considered to help

make a diagnosis of Lyme disease in children and adults in the UK and would a

weighting table be useful?

 How effective are the current UK tests in detecting infections due to the

genospecies and strains of B burgdorferi sl in the UK and which single test and

what combination of tests performs best in diagnosing or ruling out active Lyme

disease. Should stage of the disease and patient age be taken into account when

interpreting these tests?

 What are the outcomes of cases where long term treatment has been used?

 What is the optimal course of action if symptoms relapse after a treatment course

is finished?

 What is the optimal course of action if symptoms persist after initial treatment:

should antibiotic treatment be continued until all symptoms have resolved or

should a different dose or different antibiotic be used and what is the course of

action if treatment appears to fail completely?

 Are continuing symptoms following conventional recommended treatment due to

continued infection, or an immune response or other process?

 How common is relapse and treatment failure and is it related to disease stage,

gender, co-infections or any other factor?

 Are there long-term consequences if treatment is delayed?

 Can Lyme be transmitted via other means: person to person sexually,

transplacentally or by breast feeding; through organ donation; through blood

transfusion?

link here

There were certainties - including

Does EM provide an ‘accurate’ clinical diagnosis of LD?

Yes it does.

Stanek G, Fingerle V, Hunfeld K, Jaulhac B, Kaiser R, Krause A, et al. Lyme borreliosis: clinical case definitions for diagnosis and management in Europe. Clinical Microbiology and Infection. 2011 Jan;17(1):69–79.

Is EM a more or less ‘accurate’ sign of LD in children?

Yes. Reference as above

How is EM defined?

See Stanek et al 2011 as above for description of European manifestations.

Should tests to exclude LD be carried out in patients who have a tick

bite but don’t get EM?

In symptomatic patients, yes. EM is not always present

Stanek et al 2011

Tuerlinckx D, Glupczynski Y. Lyme neuroborreliosis in children. Expert review of anti-infective therapy. 2010 Apr;8(4):455–63.

Sadly many Doctors are unaware of these certainties and thus miss that early

indication of Lyme Disease for those of us who present with EM following tick

bite.

The above top ten uncertainties are logged on the

NHS Evidence – UK Database of Uncertainties about the Effects of Treatments (DUETs) here and hopefully will attract much needed research.

Meanwhile the above uncertainties need to be recognised among our doctors. I was pleased to hear that the Dept of Health and the Health Protection Agency were present during this process.

In correspondence from the Dept of Health, Earl Howe, 12.12.2011 via my MP Anne Milton .The Dept of Health says 'The Department is working with Lyme Disease Action (LDA) and I am aware that you as Health minister, have met with LDA representatives. We are supporting its initiative with the James Lind Alliance and await the findings of their review.'

I look forward to more information about these uncertainties being relayed to our treating doctors and consultants and changes to existing guidance from the Dept of Health via the Health Protection Agency reflecting that there are many uncertainties, instead of the current restrictive guidance based more on opinion than scientific data.

Lyme Life written in 2009

I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.

All my symptoms deteriorated significantly over a few weeks,4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.

I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. ( later note.- the X rays done some years into treatment showed my hands completely normal no signs of inflammation or RA confirming how they felt - normal) I have been retired early from the Civil Service having lost my job not to mention my earning potential. My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.

Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer when I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area. Thus started my very lengthy search about Lyme Disease leading me through Lyme Disease Action to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite of Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work. Life is such a joy. Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses. Look at UK charity Lyme Disease Action if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.

Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one. One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.

ME/CFS, Fibromyalgia, Poly Myalgia Rheumatica, Arthritis, Bell’s Palsy, MS,MN, ALS, Parkinson’s, Alzheimer’s, Heart Block, Stroke, Psychiatric, gastric problems the list is endless. Not all suffering from Lyme Borrelia but how many are even properly assessed for it.

UPDATE

UPDATE 10 January 2012