Wednesday, 23 December 2015

LYME DISEASE- BRITISH MEDICAL JOURNAL- TIME FOR A NEW APPROACH

Lyme disease: time for a new approach?

BMJ 2015; 351 doi: http://dx.doi.org/10.1136/bmj.h6520 (Published 03 December 2015)Cite this as: BMJ 2015;351:h6520

Many more questions than answers

Lyme disease is the most common vector borne disease in North America and Europe, with 300 000 new cases in the United States1 and an estimated 100 000 new cases in Europe each year.2 These numbers are likely to be underestimates because case reporting is inconsistent3 and many infections go undiagnosed.4 Climate change may have contributed to a rapid increase in tick borne diseases, with migratory birds disseminating infected ticks.5

Our common understanding of Lyme disease is that a tick bite is followed by the development of a classic rash pattern (erythema migrans). When treated early with a relatively short course of antibiotics, most patients have good outcomes.6 But the standard two tier testing for Lyme disease is inaccurate in the early----

Liesbeth Borgermans, professor,
Christian Perronne, professor,
Ran Balicer, professor ,
Ozren Polasek, professor ,
Valerie Obsomer, ecological and environmental risk expert
http://www.bmj.com/content/351/bmj.h6520
Unfortunately this is not open access but the heading and brief introduction says it all we need a new and open approach.
Sometimes it is the responses which are as enlightening as the initial publications these can be read
http://www.bmj.com/content/351/bmj.h6520/rapid-responses

From doctors who treat many patients and doctors who struggle to get family members treated and one that interested me from Dr Dryden

Consultant in infection and microbiology

Hampshire Hospitals NHS Foundation Trust & RIPL, PHE, Porton Royal Hampshire County Hospital, Winchester, SP11 6NU

'Much research is needed on this group, as outlined in the editorial, but most urgently there needs to be research on diagnosis to establish whether persisting infection is present in some of the patients with persisting chronic symptoms. This will allow the development of more appropriate treatments for this group. It will also save the anguish and confusion that many patients experience when forced to spend money on tests which have not been clinically validated.'
Do I sense a slight change in Dr Dryden's views?
What a pity Dr Dryden has recently closed his private clinic for treating Lyme patients which with the help of his doctor colleague was at last making in roads into helping a handful of the many patients, who had been dismissed by their NHS doctors with no medical help for their illness following tick bites.
Time PHE got their act together and opened specialty clinics to learn the best ways to treat these patients.
PHE empty promises could if put into practice save NHS valuable resources for this patient group as well as help alleviate suffering of many thousands of patients.
Prof Perronne has given his views many times at various conferences, published papers and press articles

Lyme and associated tick-borne diseases: global challenges in the context of a public health threat

Christian Perronne Infectious Diseases Unit, Hôpitaux Universitaires Paris-Ile de France-Ouest, Assistance Publique – Hôpitaux de Paris, University of Versailles – Saint Quentin en Yvelines, Garches, France

http://journal.frontiersin.org/article/10.3389/fcimb.2014.00074/full

Lyme disease antiscience.

Perronne C.

Lancet Infect Dis. 2012 May;12(5):361-2; author reply 362-3. doi: 10.1016/S1473-3099(12)70053-1. No abstract available.

http://www.ncbi.nlm.nih.gov/pubmed/22541624

Efficacy of a long-term antibiotic treatment in patients with a chronic Tick Associated Poly-organic Syndrome (TAPOS).

Clarissou J, Song A, Bernede C, Guillemot D, Dinh A, Ader F, Perronne C, Salomon J.

Med Mal Infect. 2009 Feb;39(2):108-15. doi: 10.1016/j.medmal.2008.11.012. Epub 2009 Jan 4.

http://www.ncbi.nlm.nih.gov/pubmed/19124209

And a Newspaper article Lyme Disease- you may never be rid of it.

http://lookingatlyme.blogspot.co.uk/2015/05/lyme-disease-you-may-never-be-rid-of-it.html

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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

LOOKING AT LYME DISEASE - MSIDS

Wednesday, 23 December 2015

LYME DISEASE- BRITISH MEDICAL JOURNAL- TIME FOR A NEW APPROACH

Lyme disease: time for a new approach?

Lyme and associated tick-borne diseases: global challenges in the context of a public health threat

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