Friday, 15 May 2015


London Lyme Disease Protest 13 May 2015 as part of a Worldwide Lyme Disease Protest during May.

What do we protest for :-

More Awareness
Better tests
Better Diagnosis
Better treatment

In the news BBC Scotland - 
European Space Agency backs work mapping Scottish tick hotspots

'ESA has awarded the mapping effort a grant of almost £180,000.'
'Roger Evans, of NHS Highland, said: "Unfortunately, health organisations have limited effective tools at their disposal to reduce the incidence of Lyme disease.
"Resident and visiting populations need an approach that will help them prevent getting Lyme disease and manage exposure to ticks."
He added: "We believe that by using the latest technology and what's commonly called citizen science we can create an interactive and accurate Lyme disease identification and risk management system."
'Organisers plan to protest outside the Department of Health in London where they will call for doctors to be made more aware of the latest research, diagnosis and treatment techniques.
They also want current UK tests for the disease to be re-examined.'
The Bristol University project is also mentioned - (details posted previously

The National -
Lyme Disease: Space agency funds new app to track tick hotspots

'The European Space Agency (ESA) has given £180,000 of financial backing to a project run by NHS Highland, the University of the Highlands and Islands and Scotland’s Rural College to test the new LymeMap app.'

Also in this article Nicola Seal talks about her struggles to get treated for Lyme Disease here in the UK.

Recently Aeon Ideas - Pam Weintraub posed the Question 

Why do doctors keep fighting about Lyme disease?

There are some excellent answers found -

My viewpoint was Because of Beliefs -unfounded in science

‘I am a doctor I don’t believe you’ - to quote one doctor on route from Downing St to Dept of Health building passing the London Lyme Disease protest on Wednesday May 13 2015. She had been offered a leaflet based on science already published about Lyme disease, she refused and that was what she said.

Such tragic consequences when basic science is ignored in place of beliefs -
All doctors are trained that antibody tests can miss cases - it depends on the immune state of patients and antibodies used to test for ( maybe a different strain or species) so why suddenly would Lyme Disease be different?
Since antibiotics were first introduced in USA and after the war eventually manufactured in UK , it has been recognised that antibiotics rarely eradicate infection, they reduce the burden of infection with the hope that the immune system can deal with what infection remains. So as in other infections if the immune system does not deal with what remains, further courses of antibiotics are usually required. This is antibiotic persistence which lately is being lumped in with antibiotic resistance, quite a different process.
A spirochetal disease that is capable of penetrating every organ and tissue - well documented in the scientific literature, why then would it magically be cured after only a short course of antibiotics if the patient remained with the same symptoms after the antibiotics as they had before the antibiotic treatment - especially when further courses of antibiotics continue to improve health and quality of life? This is often observed as visual signs by doctors prepared to treat longer.
As science moves forward much of it supporting the patients’ lived experience those with entrenched 'beliefs’ dig in deeper and produce paper after paper using opinionated hubris, tests that in their patent applications they acknowledge as unreliable ( when better tests are available in a research setting) and treatment regimes already shown not to eradicate the bacteria by the numerous scientific papers on seronegativity and persistent infection. We have Dr Barthold who says in 100% of animals the infection persists after a course of antibiotics and 12 months later the level of infection circulating is the same as before the antibiotic treatment. We have Johns Hopkins researchers struggling to find antibiotics to eradicate all persister cells in vitro, and the tri therapy combination of antibiotics that managed to do this, two of them are not widely available for doctors to prescribe.
So as long as doctors ignore science and rely on opinions the patients are abused and neglected.


  1. It completely boggles the mind of any sane human that educated doctors can be so blind and insensitive to the the expense of their

  2. Brilliant writing - many thanks Joanne. How long can this denial of our suffering go on?