On 10-11 May 2013, the first Worldwide Lyme Disease Protest was held in countries across the world. Why are patients protesting?

Lyme Disease is acquired by the bite of a tick infected with bacteria of the genus Borrelia (which also cause Relapsing Fever). Those who work (or play) outdoors among vegetation – forestry and park workers, groundsmen, gardeners, farmworkers, railworkers etc. – are particularly at risk. Forests and rural areas are especially dangerous, but the presence of Lyme-carrying ticks has been documented even in London parks.

Often painless, tickbites easily go unnoticed, especially as juvenile ticks are as tiny as a full stop. Weeks to months later, the victim may experience a bewildering array of symptoms, including severe fatigue, migrating joint pains, concentration, memory and co-ordination difficulties, psychiatric symptoms, Bells palsy, regression and autistic-like syndromes in children. The sheer breadth and often fluctuating nature of the symptom picture means misdiagnosis is rife. Many are told they have M.E. or psychosomatic disorders.

Early, adequate antibiotic treatment can cure, but few receive it. Job-acquired Lyme Disease is legally reportable under RIDDOR – but few reports are ever filed.

Worldwide, Lyme medicine is polarized into two distinct camps. Supported by the US and British public health establishment, the camp known to patients as  “Denialists”, insists Lyme is confined to a few hotspots geographically, is easily detected and just as easily cured. By contrast, the International Lyme and Associated Diseases Society camp, composed mainly of front-line treating physicians, claims the opposite, believing British Lyme incidence to be massively underestimated.

A large body of evidence supports the ILADS view.  Borrelia strain variation and its multiple immune-evasion mechanisms mean that current NHS tests (which rely on detecting antibodies to the test strains) are insensitive, missing most cases.

Misleadingly, GP’s are advised that Lyme is nearly always heralded by a bullseye-shaped rash. In fact, only 10% of Lyme rashes are bullseye-shaped, and many never notice a rash.

Standard short courses of antibiotics, as recommended by Public Health England, are often inadequate, especially in later stages, due to Borrelia’s immense armoury of antibiotic-resistance mechanisms.

With the dire state of diagnosis and inadequate treatment, many sufferers go on to develop chronic disability. Meanwhile doctors treating according to ILADS guidelines often find themselves threatened with license removal. There is no longer a single NHS consultant prepared to diagnose or treat Lyme outside of the Denialist guidelines.

A handful of private specialists offer treatment to those who can afford it and are well enough to travel. The rest are doomed.

Why is this occurring? The excellent documentary “Under Our Skin”  highlighted the conflicts of interest many leading Denialists have with vaccine, biotechnology and insurance corporations. The latter deplore paying for long-term treatment in chronic Lyme.

However, the roots of the problem are deeper and darker still. With its phenomenal immune and antibiotic-evading capabilities, Borrelia has been the subject of intense interest by bioweapons developers since the Second World War era. Most major players in Lyme Denialism are linked to the US/NATO biowarfare establishment. Last year all Lyme testing for England and Wales was transferred to Porton Down, our premier biowarfare research centre, where it is headed up by bioweapons expert Dr Tim Brooks.

With mounting evidence that Borrelia may be involved in a proportion of cases of MS, Motor Neurone Disease, and even Alzheimers, the final toll of this coverup may prove to be phenomenal.

For general info on how to protect yourself from ticks, see http://www.lymepa.org/Basics2009_rotated_landscape.pdf p13-14

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15 Comments

  1. Over 10,000 people have now signed the UK Lyme Petition, http://www.ipetitions.com/petition/uklymepetition/ demanding better diagnostic tests and long-term treatment. Patient charities and individuals have been lobbying the government since 2005, via MPs and Peers, and meetings with parliamentary health committees. After all these years the Department of Health has still not educated doctors, or the public, about the full implications of this dangerous vector-borne disease. Neither have they implemented the best possible tests and they carry on using an insensitive preliminary blood test, followe by more complex antibody marker tests which do not include all the possible strains of the bacteria present in the UK.
    Decades of scientific publications show that the infection persists after a few weeks of antibiotic treatment but all of this information is ignored. Surely it cannot be the cost of antibiotics even intravenous ones, that has led to such a callous disregard of pain and suffering? The consequences are costing the NHS more money in the long run
    This week I have heard of 2 people with a blatant Lyme rash, both workers in the countryside, being given no treatment by their GPs, because the blood tests came back negative. Yet every junior doctor should know that the rash itself, (if one is lucky enough to get it, and to notice it), is pathognomic for the infection, and should be treated immediately with antibiotics even before sending blood away to be tested.
    The incidence figures for Lyme in England and Wales are only a small number compared with the figures being seen in Europe – this is frightening because there are no climate or geographical reasons for such a discrepancy. For example, in Germany in 2011, a quarter of a million new cases of Lyme were diagnosed; in the UK that figure was under a thousand
    Where are all the missing cases?
    To see the catastrophic results of having kept this epidemic secret, and our doctors misinformed, please read some of the comments left by British and Irish Lyme victims who signed the petition. Some comments make harrowing reading – lives are being ruined for the want of proper government warnings and a few ££ worth of antibiotics.

  2. Robin says:

    Thanks for this article. It could be also be titled “Patients Buried While Facts Languish.”
    See http://www.lymememorial.org for the growing list of those who have died from Lyme and co-infections after having suffered miserably from these nonreported, underreported, misreported and need-to-be-reported infections!

    Everyone needs to be educated about safe practices. Here in California, our state/national organization educated 100s of workers last year in the San Francisco East Bay region, as they were getting Lyme disease from their outdoor work. Park rangers, including at Yosemite National Park, are also reporting they are getting Lyme disease. See park ranger Jordan Fisher Smith’s narrative in the Lyme documentary, “Under Our Skin.”

    Lyme doctors treat clinically, since not everyone gets the tell-tale rash nor tests positive. The sooner recognized and treatment started, the better. This is a worldwide plague situation and everyone needs to wake up to it and deal with it, re protection and treatment.

  3. Jennifer says:

    I tested CDC positive (both ELISA and Western Blot) here in Oregon in 2010. I had been bitten in 2006 but the info out in the media was that some people get sick and some don’t and I was going to be one of those who didn’t get sick. I saw my tick and had a large flame shaped rash on my leg. I waited for the arthritis symptoms to appear, they didn’t. My tick bite was on the left side of my body and I have had more left sided symptoms. I have had significant hearing loss, vision problems, vertigo, severe headaches, neuropathy and two years after my tick bite, my pituitary failed. I’ve had multiple MRI’s and the pituitary gland looks healthy but it does not work. My first point of medical contact was my G,P., he ordered the tests. When he called a local infectious disease doctor and former head of the Infectious Disease Society of America, that specialist told him that ‘there wasn’t any lyme disease in Oregon. and I had two faulty tests.’ After that, I was told to forget the diagnosis. I couldn’t, I was horribly sick and had no cortisol production among a few other hormones. I was headed for a marble slab. I have had some joint pain since, but no major arthritis. I had enough information from my G.P. before the consult with the I.D. doc, that I was able to find and treat with a lyme literate naturopath. I am feeling well now, but worry about the future. This is a smoldering infection and I do not know what may trigger a relapse in the future. My positive diagnosis was never reported by any doctors I have seen. I was bitten in my garden in the city, so it can happen anywhere– not just parks or nature areas. Beware.

    1. bbrita says:

      specialist told him that ‘there wasn’t any lyme disease in Oregon. and I had two faulty tests……..laughing with tears in my eyes……

  4. Mark Herridge says:

    I am suffering a slow and very painful death, and my GP seems powerless to help, I have finally after 14 plus years had a diagnosis of Lyme Disease, which I have had to pay for the tests myself, I am 45 and in real pain. Why are we allowed to suffer this much pain, if I were a Dog I would have been put out of my misery years ago. This is one of the biggest cover ups by the NHS and the British Government, and needs to get out there in the Public Domain. It is starting to look like all those poor people diagnosed with MS, Fibromyalgia and Chronic Fatigue have been lied to, I am no expert but I can smell a rat when I see one!

  5. HattieJ says:

    I have had Lyme disease since 1992. I finally was tested at my own expense in 2007 and saw a doctor who had had Lyme disease himself and was prepared to treat me privately. he is no longer treating Lyme patients due to harassment from the establishment. After 15 months of aggressive antibiotic therapy I was much improved although my symptoms are now worsening again. The NHS is not interested. I actually had the rash and the GP ignored it. I have chronic arthritis, mobility problems, peripheral neuropathies, crushing fatigue, joint and muscle pains, balance problems, cardiac abnormalities etc etc. This a major health scandal which no one wants to address. Many people are too ill with this to fight for more help. It is a disgrace. If treated properly the cost to the NHS would be less than it is spending now on unnecessary investigations and treating the symptoms rather than the cure.

  6. I believe that on my medical notes it must say
    ” NUT CASE…DO NOT TREAT OR BELIEVE A WORD HE SAYS”
    Every doctor including Infectious Diseases at ADDENBROOKES ,Cambridge…(teaching hospital) Lie about my condition, Asked if I had a stiff neck my answer was “yes it grates and grinds”….Their reply ” You DON’T look as if you have !” and the comment in the report ..No stiff neck.
    This is just one of a string of denials ,lies and mistreatment I have received from the NHS.
    I have also tested H for High (POSITIVE) on a Bartonella test at Addenbrookes and I received no treatment just “you live with a cat “…been.dead two years.!….
    BUT I am still infected with two deadly diseases!!!!
    They do not know ? hard to believe in this day of mass information so readily at hand.
    How do they all answer with one voice ” No such thing as Lyme here” !!

    I have been privately diagnosed after 29 years, bitten in Vermont,USA. Circular rash carried tick for two years in a cyst. and I have a POSITIVE Melissa test done in Germany…comment by ID dept..”not reliable”….but the one the NHS uses is only 30-50% accurate ???
    The government , it’s health advisers ,the NHS and many other departments (coroners, Blood bank, Transplants) ARE NEGLIGENT..in their handling of Zoonotic Diseases.
    It is
    Time to change.
    Time to listen to the patient.
    Time to save millions of Pounds and Lives and families lives.
    Time to be Truthful and teach the truth.

  7. Peter Kemp says:

    Thank you very much for this informative article. In all my years working as a groundsman/greenkeeper I never heard of Lyme disease even though I was a continual student. I did courses in management, health and safety and pest control. Never a mention of an infection from an insect bite that could, and did – end my working life.

  8. icedout577 says:

    Under the Eightball documentary says it all, people are suffering and dieing. Nothing is being done but a big time coverup, why because this disease is a biowarfare weapon. Operation paperclip and Dr. Erich Traub! I had a feeling all these World Wars would come back and bite us in the butt one of these days. And it’s happening now, Lyme and ticks are increasing each year and so far there is no combatant.

    We almost wiped ourselves out during the cuban missile crisis with nukes. But when good proof has been shown of this being biowarfare, it gets thrown under the rug and dismissed as conspiracy bs. I guess it’s good to live in a bubble where there’s no such thing as biowarfare weapons and nuclear weapons. That’s until you get the disease yourself and your world comes crashing down.

    Dr. Alan Steere and his chronies are still pushing this disease as easy to treat and easy to cure.

    Articles like this still make Dr. Steere look like the victim and the patient as the bully. http://www.bostonglobe.com/metro/2013/06/01/lyme-disease-rise-and-controversy-over-how-sick-makes-patients/OT4rCTy9qRYh25GsTocBhL/story.html

    But the truth is Dr. Steere knows more about the disease than he’s saying. Lives are being lost and the governments are just considering it collateral damage.

    There will be one day as the Park Ranger said in Under Our Skin, when enough people will be sick and something has to be done. It’s going to be who knew what and when. That day is getting closer, because millions are getting infected each year. The numbers are increasing 10 fold all around the globe.

    These doctors can’t keep handing out MS, Lupus, and ALS death warrants. The shits going to hit the fan, it’s just a matter of time.

  9. Clare Turner says:

    Excellent informative article, and comments, particularly first one by Denise Longman.
    Apart from the distress caused, how can it be cost effective to have so many people too ill to work, care for their families or contribute towards society (many in need of care themselves) having tests & treatments for multiple symptoms, which do nothing to cure the disease? As it is not cost effective the only conclusion is that it must still be of military importance. Military considerations always override any other human need.
    Although not commonly known, blood suckers other than ticks also have the potential to carry Lyme Disease. It’s almost inevitable that if another species fed on a Lyme infected bird or mammal they would in turn become carriers. Perhaps this is too much to admit for the powers that be.
    I’ve been too ill to work or lead a normal life since 1996; 10 years later I was able to see a photograph of Borrelia spirochetes in my blood. A specialist saw Bartonella Like co-infections, microfilarial worms, and Chlamydia Pneumonae in my blood. When I had treatments for these various pathogens my health definitely improved but since I can no longer afford the treatments I am deteriorating again and very worried about dependancy in the near future.

    1. BettyG, Iowa says:

      Elena,
      Thank you for taking the time to write a very informative, educational article above.

      I’ve had CHRONIC lyme 43.5 years; MISDIAGNOSED for 35 hellish years by 40-50 drs. UNACCEPTABLE. Ticks embedded with blood, lyme disease, bulls-eye rashs, or any other type of strange rash were NEVER mentioned once during those 35 yrs. I tried to find a correct diagnosis. WHY?

      I’m on a USA lyme board helping lyme/vector-borne patients FIND LYME LITERATE MDS who will will treat their lyme/co-infections longer than 1 month of antibiotics, supplements, or alternative therapies.

      Every day I get requests from UK patients trying to find LLMDS in THEIR country, UK! I’ve given them what I have but have recently learned the info is no longer accurate and they CAN’T find these LLMDS to treat their diseases.

      The worldwide lyme/co-infection rallies were a SUCCESS everywhere they took place.

      We’re sick and tired of BEING SICK AND TIRED! WE WANT QUALITY OF LIFE AGAIN.

      We sick patients didn’t ask to be in the middle of things of the LYME WAR between our llmds, ILADS, intl. and lyme associated disease society

      vs. IDSA, infectious disease society of america, who UNDERTREAT from 1 day to 3-4 wks. MAX ANTIBIOTICS, and you’re cured! HOGWASH; you develop CHRONIC lyme/co-infectinos which IDSA doesn’t believe in.

      BettyG, Iowa/USA

    2. sue says:

      I am fundraising for my friend so that she can have the 18 mth protocol..it equates to just over5, 000 pounds

  10. Elena Cook says:

    19 July 2019: The Lyme disease-biowarfare coverup is now all over the media – in Newsweek, CBS, Huff Post, The Guardian, GlobeandMail, Express etc. But everyone (even Guardian journalist Beaumont) seems to be duped by US biowarfare scientist Phil Baker posing as a “patients’ representative”. Baker’s “American Lyme Disease Foundation” is an astroturf group set up by biowarfaremen and corporations. There are NO patients backing it. Baker is the former Anthrax Officer at Nat Institutes of Health in USA – hardly an impartial source of comment!!!
    Please contact journalists and point them to the FACTS re biowarfare scientists like Baker and Osterholm. There are many sources on the Web – pls save hard copies too as the US Dept of Defense notoriously “disappears” documents from the internet.

    Elena Cook

    @ElenaCo84754439

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