MORE QUESTIONS IN THE HOUSE OF LORDS ABOUT LYME DISEASE

Wednesday 16 May 2012

MORE QUESTIONS IN THE HOUSE OF LORDS ABOUT LYME DISEASE

HOUSE OF LORDS

Questions on Lyme Disease from the Countess of Mar details can be found here

The Countess of Mar to ask Her Majesty’s Government what epidemiology data exists for the historic and current population densities of Ixodes ricinus ticks in England and Wales; whether it shows an increase in tick numbers; what proportion of ticks carry Borrelia burgdorferi sensu lato; and what measures are in place for future monitoring. [DH] HL138

The Countess of Mar to ask Her Majesty’s Government, with regard to the freedom of household pets to travel in Europe, what surveillance measures exist to detect the arrival of tick-borne encephalitis and other tick-borne diseases that are not currently endemic in the United Kingdom; and what measures exist to inform United Kingdom residents of the risks of those diseases when they travel to Europe and the United States and the need for vaccination for tick-borne encephalitis. [DH] HL139

The Countess of Mar to ask Her Majesty’s Government what testing is carried out in addition to Borrelia burgdorferi sensu stricto and Borrelia afzelii for tick-borne diseases including Bartonellosis, Ehrlichiosis, Borrelia garinii, Babesiosis, Louping ill and Q-fever, that occur in the United Kingdom, and for other zoonoses such as tick-borne encephalitis, Boutonneuse fever, Tularemia and Rocky Mountain spotted fever to which United Kingdom residents can be exposed when travelling to Europe and the United States. [DH] HL140

The Countess of Mar to ask Her Majesty’s Government, with reference to the "new test" to be used by the Health Protection Agency (HPA) Lyme Unit at Porton Down for Lyme borreliosis, what data they hold for the sensitivity and specificity of the test kits for the local genospecies of Borrelia in England and Wales; what testing has been carried out by the HPA or other body to confirm the sensitivity and specificity of the test kits for the local genospecies in England and Wales; and, if testing was carried out, what were the sensitivity and specificity results. [DH] HL141

The Countess of Mar to ask Her Majesty’s Government what plans they have to enhance the current regulations defined by European Union Directive 98/79 to ensure proactive verification and certification of medical devices; and what data they possess for the performance characteristics and limitations of the ELISA and Western blot serology tests, including the test to be used at the Porton Down laboratory that is required from the manufacturers in accordance with Annex III of Directive 98/79. [DH] HL142

The Countess of Mar to ask Her Majesty’s Government when the transfer of the Lyme Reference Laboratory to the Rare and Imported Pathogens Laboratory at Porton Down is expected to be complete and whether the Health Protection Agency will include Lyme on its list of Reference Services published on its website. [DH] HL143

It is good to see the Countess of Mar asking very pertinent questions of our Government and it is beholden of the Government to seek accurate and informative answers from the Department of Health not the fobbing off that has been the pattern so far, as evidenced by the 30ish letters to me from MP Anne Milton on the subject of Lyme Disease, although Anne says she has many concerns about this puzzling disease.

2 comments:

Camp Other17 May 2012 at 20:11
I love this. The Countess of Mar is asking very basic questions which are not controversial and need to be answered - yet establishing the answers as fact will expose whatever problems there are with the diagnosis of Lyme disease and other tickborne infections in the UK.

I wish more politicians would get involved in this way. It would provide those who are more uncomfortable with the Lyme disease controversy or unsure of what they think to help form their own opinion, to get answers to these kinds of questions. They go to the heart of finding how big of a problem these illnesses are.
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Joanne18 May 2012 at 19:08
She has been working very hard for patients with Lyme Disease and talking to others in both houses of Parliament. However I can guess the sort of evasive replies she will receive. Still 2012 is proving to be the year of tiny baby steps in the right direction.
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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