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
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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