from the Lyme Disease website of Elena Cook
by Elena Cook
On 9 May 2012, British Lyme disease patients protested outside the Department of Health, handing a petition into the Prime Minister's house at No. 10 Downing Street.
Some had travelled hundreds of miles; some were in wheelchairs. All were cheered, despite the pouring rain, to be among fellow sufferers, feeling a little less alone in this uniquely isolating disease.
The rally was the initiative of Darren Smith, whose wife Sonia had, (in common with petition organiser Denise Longman and so many others present) been abandoned by an uncomprehending, Lyme-ignorant medical profession. He set up the 'Ask the Department of Health Why' group on Facebook when the Smiths found themselves alone without medical help, grappling with this frightening disease.
Sonia's nightmare began as a bolt from the blue. Relaxing in front of the TV with her little girl, she was suddenly overcome with an excruciating headache, which later progressed to a terrifying state where she could hear people speaking to her, but could neither move or speak.
Sonia was rushed to hospital with a suspected brain haemorrhage. However, as a series of brain scans and other tests came back negative, doctors began to suspect psychosomatic illness, sneering at her as a 'weekend wonder'.
At home she progressed on to the bizarre, fluctuating and shifting battery of symptoms so characteristic of neurological Lyme:
'Some days I would look like I had Parkinsons, sometimes my symptoms fitted MS, sometimes M.E. or motor neurone, or sometimes a stroke or simply the flu....'
By now Sonia had learned of Lyme and recalling an EM rash (which is itself diagnostic of Lyme Disease), requested tests. The NHS test was negative, but a concurrent test at Igenex labs in California proved positive. Her doctors refused to accept the US test, sneering:
'Americans are all mental, they blame every symptom they have on Lyme'.
Sonia was forced to start a fundraising drive to pay for private treatment which finally gave her some relief from her symptoms. The Lyme-literate doctor she saw noted a positive Babinksi response (incontrovertible evidence of brain or spinal cord disease).
Sonia's story is not untypical. Twenty-five years ago, Denise Longman succumbed to overwhelming fatigue, pain and brain fog after being bitten by ticks in the Scottish Highlands (a known hotspot). Nevertheless doctor after doctor assured her they could find nothing wrong. Eventually she was given a diagnosis of M.E. - Chronic Fatigue Syndrome.
No help was offered other than psychological therapies. Denise was in her thirties, but as with Sonia, her life appeared, to to all intents and purposes, to be over. Whole days were spent lying in bed in pain.
And, as with Sonia, the door only opened to admit a chink of light the day Denise learned about Lyme disease. She tested positive on a blood test designed to detect the antigen, rather than antibodies, which may not be detectable in Lyme for a variety of reasons.
Once again, mainstream doctors, guided by the Lyme Reference Unit, refused to accept the validity of the test. As a result, the only relief Denise has had over the years has come from treatments recommended by Lyme-literate doctors prepared to 'think outside the box'. Affording this treatment has been difficult for Denise and sadly, with the rising persecution against these doctors, they grow fewer in number every day.
Denise battled through her exhaustion to collect the 2000- plus signatures for her petition, forcing herself, no matter how tired she felt, to conduct interviews with local radio stations and press in the run-up to the event.
On the day, we waited with bated breath for Denise to be interviewed live on BBC Radio Four outside the Department of Health. (The interview would have been broadcast nationally.) Sadly this was cancelled at the last minute when the journalist suddenly came down with food poisoning.
Three Members of Parliament - Lady Margaret Mar (the Countess of Mar) from the House of Lords,and Mark Lancaster (Milton Keynes) and Stephen Brine (Winchester) came to show their support for the demonstration.
The petition demands, amongst other things, that Lyme be made a notifiable disease across the whole of the UK; that purpose-built clinics be established, staffed by doctors with the expertise to accurately recognise Lyme in all its stages; and that treatment for chronic Lyme be continued for 'as long as necessary'. It also calls on the government to launch a major public awareness campaign to warn of the dangers of tick-borne disease, and for the results of research breakthroughs to be made available to doctors.
A case in point could be the evidence linking Lyme with Alzheimer's, autism and M.E. (aka Chronic Fatigue Syndrome), for example.
Most doctors want to relieve suffering, to diagnose accurately and cure their patients. Why does Lyme elicit such scepticism and even contempt for their patients?
Certainly the bulk of the blame lies with the government-backed Steere camp of Lyme 'experts', who have convinced doctors that Lyme is rare, and that chronic neurological Lyme, in particular, is unknown. Doctors are told that current tests are infallible in late Lyme and that even those testing positive are easily cured with a short standard course of antibiotics.
All this has been proven wrong time and time again, but the voice of researchers presenting that evidence is drowned out by the government-backed experts who insist that all doctors follow 'accepted criteria' (ie their own.)
To many Lyme patients it is apparent that there is a deliberate denial going on. But why?
This spring the government's chief public health agency quietly announced that the Lyme Reference Unit, which conducts all Lyme blood testing for England and Wales, would be moving to Porton Down, Britain's biological warfare research centre.
Lyme will now be tested for in the same lab as horrors such as bubonic plague and anthrax.
It is not only the misinformation handed down from on high that makes doctors sceptical about neuro-Lyme. The disease presents in bizarre ways, seemingly incongruous with some of the maxims doctors have been taught for decades. Its fluctuating pattern, shifting symptoms, its frequent ability to turn up nothing on what are assumed to be very sensitive neurological tests, baffles and confuses medical staff.
Is it possible that the seemingly 'unnatural' presentation of Lyme is because it is unnatural, due to unnatural tampering with the bacteria itself?
Scientists sequencing the genome of the Borrelia bacteria associated with Lyme have commented on the many unusual, and indeed, in some cases, exceptional characteristics of its DNA.
British Lyme patients have rallied before. But the 9 May 2012 rally will go down in history as the first rally at which the question of Lyme as a biowarfare issue was specifically raised, in a very upfront and open manner. (See photos)
By transferring responsibility for Lyme testing to the biowarfaremen of Porton Down, the UK government has allowed us a glimpse of what is really going on. The US, in contrast, clings to a full denial, dismissing documents referring to Lyme research at Fort Detrick and other American biowarfare labs as 'printing mistakes' or misunderstandings.
We must demand a full disclosure of the truth. We must no longer tolerate the deliberate neglect of Lyme patients as the forgotten 'collateral damage' of a biowarfare research effort which, far from defending, is causing mass suffering by putting military goals before the welfare of its own afflicted citizens.
(The paragraph below was accidentally omitted from the original publication of this article.A sincere apology to the MPs concerned-EC)
'Three Members of Parliament - Lady Margaret Mar (the Countess of Mar) from the House of Lords,and Mark Lancaster (Milton Keynes) and Stephen Brine (Winchester) came to show their support for the demonstration.'
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