A PATIENT VOICE AT PHE MEETING ON LYME DISEASE

Saturday, 4 April 2015

A PATIENT VOICE AT PHE MEETING ON LYME DISEASE

A patient speaking at the Public Health Meeting about Lyme Disease held on 29th March 2015 with kind permission to post.

The earlier report of the meeting is posted - http://lookingatlyme.blogspot.co.uk/2015/03/dr-fallon-presenting-at-lyme-disease.html

Good afternoon everyone.

I am Demetrios Loukas.

Together with my local MP and Minister of Justice, The Rt. Hon. Simon Hughes, I, with the help of Denise Longman who is too ill to be here today, organised the first patient-led parliamentary conference which took place on the 19^th January earlier on this year.

The Rt. Hon. Simon Hughes has been following my struggle to obtain adequate treatment for Lyme disease for the past 4 years. After he attended the Worldwide Lyme protest in London last May, he was moved by the plight of so many desperate patients who have been let down by the NHS. He learned that it’s not just the diagnostics that are failing patients but that the treatment offered to those who are lucky enough to test positive is in many cases, failing to eradicate this infection. The consequence of this failure to reliably detect and treat this disease is leaving an untold number of patients like me undiagnosed with chronic debilitating symptoms.

An earlier diagnosis would have saved me a lot of money as well as the Department of Work and Pensions and the NHS. I, like many others, tested negative on the NHS only to find out through a private laboratory in Germany that I that was in fact infected with Lyme Borreliosis and several co-infections. After receiving several long courses of antimicrobial therapy, I am now on the road to recovery; otherwise I would not be here today.

Our patient-led initiative which has been championed by The Rt. Hon. Simon Hughes has procured 1092 signatures approving Dr. Armin Schwarzbach and Dr. Chris Newton as their scientists of choice to work with Dr. Tim Brooks and his team at Porton Down.

For those of you who do not know, Dr. Schwarzbach is both a scientist and a physician, renowned throughout Europe for his expertise in Lyme diagnostics and treatment. Dr. Newton is a research and development scientist with experience in both academia and industry. Furthermore, he is an expert in drug development for the treatment of cancer and chronic disease.

I have come here today to whole-heartedly thank Dr. Tim Brooks for attending the parliamentary conference and for communicating so openly and without hesitation with the Rt. Hon. Simon Hughes and the patient-led initiative’s scientific and medical delegates.

I would like to take this opportunity to commend Dr. Brooks for personally engaging with the patient-led initiative and for inviting Dr. Schwarzbach and Dr. Newton to Porton Down in June to discuss how the current diagnostics used to detect Lyme Borreliosis can be improved.

I would like close my speech by sending out a message of hope to everyone afflicted by this disease: if we really listen to each other, many good things can be achieved for the greater good of all.

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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

Saturday, 4 April 2015

A PATIENT VOICE AT PHE MEETING ON LYME DISEASE

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