LOOKING AT LYME DISEASE - MSIDS: LYME DISEASE PROTEST LONDON 2015

Friday 15 May 2015

LYME DISEASE PROTEST LONDON 2015 - SCIENCE NOT BELIEF.

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

http://lookingatlyme.blogspot.co.uk/2015/04/the-big-tick-project-thank-you-chris.html )

http://www.bbc.co.uk/news/uk-scotland-highlands-islands-32692519?

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.
http://www.thenational.scot/news/lyme-disease-space-agency-funds-new-app-to-track-tick-hotspots.2922

Recently Aeon Ideas - Pam Weintraub posed the Question

Why do doctors keep fighting about Lyme disease?

There are some excellent answers found -
http://ideas.aeon.co/questions/why-do-doctors-keep-fighting-about-lyme-disease

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.

http://ideas.aeon.co/viewpoints/joanne-drayson-on-why-do-doctors-keep-fighting-about-lyme-disease?recently_published=true

2 comments:

Gpopuk15 May 2015 at 18:44
It completely boggles the mind of any sane human that educated doctors can be so blind and insensitive to the science...at the expense of their
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Replies
twicebitten15 May 2015 at 21:39
Brilliant writing - many thanks Joanne. How long can this denial of our suffering go on?
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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