Presentation by Denise Longman 19th January, 2015
Ladies and Gentlemen:
I'm speaking today because it's my duty to the 12,000 plus signatories to the UK Lyme Petition, which demands more public awareness, reliable diagnoses and adequate treatment for Lyme disease. And also to explain why patients are dissatisfied with PHE's management of borreliosis in England.
We have families in this room and on our Facebook group who have found that their children are infected, most probably from birth.
There is documented evidence for placental transmission, which first dates back to 1985, and now amounts to 28 peer reviewed papers and 88 Medline links showing that this occurs. In summary, if antibiotics are used during pregnancy the outcome is favourable; but if not, 67% of pregnancies will have a bad outcome.
Borreliosis is damaging not just the generation who are infected
now, but the next generation as well.
The Alzheimer's Society estimates that there will soon be 850,000 people in Britain living with dementia, the majority of whom are wholly or partly due to Alzheimer's disease. The economic costs of this will rise to over £26 billion.
Borreliosis infections have been documented to produce states of dementia, and French researchers this year recommend screening for Borrelia in all dementia patients, as well as in the Alzheimer's type of neuro-degenerative cases.
In September 2014, and Jan 2015, researchers found " over a ten-fold increased occurrence of Alzheimer's Disease when there is detectable evidence of spirochaetal infection"
For more information on this topic and the DNA evidence from Dr MacDonald's work, see the Spirochaetal Alzheimer's Association web site. http://www.spirochaetalalzheimersassociation.org/index.html
Imagine if antibiotic therapy could halt or partially reverse the disease! The benefit to suffering humanity would go hand in hand with a huge benefit to the Exchequer. Will the Department of Health act on this information and screen Alzheimer's patients for borrelia?
Large numbers of ME/CFS or Fibromyalgia patients have been discovering that they have Lyme disease after private tests, the figures are 80 to 90% according to 3 prestigious ME doctors. Yet NHS doctors rarely consider Lyme disease as a differential diagnosis in suspected ME/CFS cases, despite a directive to do so in the NICE guidelines. But who can blame them, when PHE maintains that Lyme is such a rare disease, and if the tests miss so many cases?
In Germany the incidence is about a quarter of a million NEW cases
each year. http://www.hindawi.com/journals/jir/2012/595427/
It isn't logical that the UK has the lowest incidence in northern Europe, and only 1 8oth of the incidence of our nearest neighbours, not given our role as the Heathrow Airport of the bird world. Thus patients have no confidence whatsoever in the PHE figures.
The German statistics also show that twice as many women as men
The WHO stated in a 1993 workshop in Slovakia that birds are important
vectors of borreliosis
Our own tick expert the late Professor Klaus Kurtenbach stated
that pheasants and game birds all over the UK are harbouring the infection.
Also, we have hundreds of millions if not billions of migratory birds entering
and leaving Britain.
The UK was well aware of the emerging incidence of Lyme during
the 1980s. By 1989, the data that UK researchers gave to the WHO shows that
they found cases of Erythema Borreliosis Migrans all over Britain.
For example, in England, in 1993, NATO held an Advanced Workshop on Lyme disease in London with many European and US doctors and scientists attending.
Oxford tick scientist Dot Carey reported that over 60% of animals,
birds and ticks collected from many UK sites were infected with borrelia burgdorferi,
and the results were confirmed by DNA polymerase chain reaction tests.
1993 should have been the year when the whole of the British public
was educated about the danger of tick-borne diseases. But they were not warned.
We have asked repeatedly for PHE and the D of H to act with the
greatest speed to
a) Warn the public,
b) Educate doctors
c) Provide accurate diagnoses
d) Give adequate treatment
One government advert on TV could begin the awareness in Britain that would soon save thousands of lives from being ruined.
It is not the job of charities and patient groups to make leaflets and distribute them to raise awareness in doctors and the public - this is the responsibility of PHE and the Department of Health.
Why wait for the situation to get worse? Why not act now? In Eastern Europe victims of tick bites go immediately to their doctor and receive antibiotics whether they have had a rash or not. Why keep our UK citizens in the dark?
We are struggling to regain our health while our public servants seem to have washed their hands of us.
In a report on Lyme borreliosis submitted to the Health and Safety Executive, in 2012, PHE refer to us as "disaffected patients". Their policy is to "manage us". They propose to train our doctors in '"disengagement" strategies' - in other words, how to get rid of us. PHE's Professor Dryden recently addressed infectious disease doctors at a conference, calling Lyme a "fashionable disease" and portraying patients as living in a quote: "parallel universe".
Furthermore the same doctor has also lectured that the ELISA tests
are "too sensitive" and are likely to give false positives, with no
mention of the possibility of them missing 50% of cases by being falsely negative.
Most worrying of all he continues to write to GPs that if the ELISA test is
negative then the patient does not have Lyme disease. This is dangerous.
Everyone here amongst the patients has read about the fact that even in late Lyme disease, patients can be seronegative - there are no antibodies there for the test to pick up. Borrelia bacteria have special mechanisms for evading the immune system. Also it's been recently reported from studies in Cumbria that only patients with the arthritic symptoms are being diagnosed successfully, and that neuroborreliosis most often produces a seronegative result. How can PHE in all conscience carry on telling both doctors and patients that PHE tests are accurate? How many years has this gone on for? Thousands of false negatives will have been proclaimed, and thousands of patients left to suffer.
How can we rely on tests that have only been verified by the manufacturers in 54 patients, and then, only in a highly selective cohort, and in comparison to other kits relying on exactly the same methods? This is not validation by any scientific norm. The test kits used by the NHS have never been tested for their ability to detect an infection in hard to diagnose cases and who may even turn out to be the most ill due to an inadequate immune response.
PHE have acknowledged that they cannot detect borrelia miyamotoi, yet that strain is confirmed to occur in Britain.
We need a better detection system that will be geared towards
finding the infection and I hope that methods such as those perfected by Eva
Sapi and Advanced Laboratory Services in Pennsylvania, or the method using Molecular
Beacons as described by Dr MacDonald, or the FDA approved test of Dr Sin Lee
No longer should we rely on the detection of antibodies, but rather on the detection of the organism itself.
How can we have any confidence in PHE when more and more patients have made use of microscopy and seen the germs in their blood for themselves?
PCR/sequencing technology is the only test available at the moment
to detect the newly identified B. Miyamotoi pathogenic borrelia species. PHE
antibody screening tests for Lyme disease will not identify this pathogen. What
if it were found to be the cause of Lyme-like diseases in the UK?
We have seen how one particular patient, Demetrios Loukas, has
run the gauntlet of a system that is not working. Through serendipity, his own
persistence and the sheer good luck of finding knowledgeable doctors and scientists,
not forgetting the support from his MP the Minister of Justice, he is on the
road to recovery. He has spent all of his savings on treatment prescribed in
Germany. He is not alone, as many other patients have been forced to go abroad
for successful private diagnosis and treatment.
Pity those, who know that they are infected but cannot access private treatment. Pity even more, those who struggle with their incurable "syndromes" not knowing that they are infected and possibly infecting their children! This situation is shameful.
Health Ministers and Public Health scientists, we call on you
to give the British public a fighting chance to beat this epidemic. If necessary,
use the expertise already available in European and American commercial labs
and collaborate with as many of the knowledgeable scientists as you possibly