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 19th 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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