LOOKING AT LYME DISEASE - MSIDS: COUNTESS OF MAR QUESTIONS IN THE HOUSE OF LORDS

Thursday, 2 February 2012

COUNTESS OF MAR QUESTIONS IN THE HOUSE OF LORDS - LYME DISEASE

The Countess of Mar who has for some time represented and supported the ME/CFS patients has recently taken an interest in helping patients with Lyme Disease.

Questions in the House of Lords.
Q. To ask Her Majesty's Government whether the Lyme Unit at the Health Protection Agency has always been fully compliant with all aspects of the Data Protection Act 1998, particularly with respect to retention of patient information, using patient information for purposes for which it was not originally intended and passing patient information to third parties without consent from the patient.[HL13893]

A. The Parliamentary Under-Secretary of State, Department of Health (Earl Howe): I am informed that the Health Protection Agency and its Lyme Borreliosis Reference Laboratory complies with all aspects of the Data Protection Act 1998.

Asked by The Countess of Mar

To ask Her Majesty's Government whether, in view of the statement on the Medicines and Healthcare products Regulatory Agency website that their decisions

7 Dec 2011 : Column WA173

will be "based on robust science" and "fact-based judgments to ensure that the benefits to patients and the public justify the risks" of new scientific research, they have conducted a recent risk assessment of the ELISA test for Lyme disease.[HL13895]

A.Earl Howe: We are advised by the Medicines and Healthcare products Regulatory Agency (MHRA) that manufacturers of in vitro diagnostic devices such as the enzyme-linked immunosorbent assay test should ensure they conform to the safety, quality and performance requirements of the European Commission In Vitro Diagnostic Devices Directive before they CE mark their products and place them on the European Union and United Kingdom market. This involves setting out their performance characteristics for the test and being able to demonstrate that it performs to the accuracy level claimed for it. The MHRA has a mainly post-market surveillance and enforcement role under the directive and would investigate any problems with the use of such a test that comes to its attention. Depending upon the results of any such investigation, the MHRA has a range of legal powers open to it that include removing the device from the UK market.

Q. To ask Her Majesty's Government why the Lyme Unit of the Health Protection Agency does not publish full details of its in-house immunoblots including the name, origin and specificity data of the antigens used and the criteria used to determine whether a result is positive, together with all the evidence from the peer-reviewed literature validating those criteria.

A. Earl Howe (Parliamentary Under Secretary of State (Quality), Health; Conservative)

The Lyme Unit of the Health Protection Agency (HPA) does not use in-house produced immunoblots in the investigation of Lyme and has not done so since 2005. The HPA's Lyme borreliosis unit currently uses commercially produced and CE-marked Trinity Biotech EU Lyme western blots as supplementary (second stage) tests in the investigation of suspected Lyme borreliosis.

House of Lords: Health: Lyme Disease (25 January 2012)

Q. The Countess of Mar: To ask Her Majesty's Government whether the Lyme Unit of the Health Protection Agency regard the 41 internal antigen on the Mikrogen immunoblot as highly specific or non-specific for the detection of Lyme disease.

A. Earl Howe (Parliamentary Under Secretary of State (Quality), Health; Conservative)

The Lyme Unit of the health protection agency (HPA) does not use Mikrogen immunoblots. The HPA currently uses commercially produced and CE-marked Trinity Biotech European Union Lyme western blots as supplementary (second stage) tests in the investigation of suspected Lyme borreliosis..

House of Lords: Health: Lyme Disease (25 January 2012)

Q. The Countess of Mar: To ask Her Majesty's Government whether Lyme disease is still being studied at Porton Down for its potential as a biological weapon.

A. Lord Astor of Hever (Parliamentary Under Secretary of State, Defence; Conservative)

Dstl (or its predecessor organisations) has not looked at the potential for Lyme disease to be used as a biological weapon and has never had a programme of research to evaluate either the causative bacteria or its potential as a weapon.

Details can be found in 'They work for you' here

2 comments:

Anonymous2 February 2012 at 18:04
She has a Facebook page where Lymies can thank her, if they want, for her interest and involvement in Lyme
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Replies
Anonymous2 February 2012 at 18:06
Should have added the link to Lady Mar !

https://www.facebook.com/?ref=logo#!/pages/Lady-Mar/120584914700574
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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