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The Situation of Human Rights Defenders of Lyme and Relapsing Fever Borreliosis Patients: Edition One March 6, 2018

Thanks to the tremendous effort of Jenna Luché-Thayer the report was presented at the United Nations in Geneva, Switzerland, in June 2018 by several of us on the The Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes representing many different countries affected by poor policy.

Authors: Jenna Luché-Thayer, Holly Ahern, Robert Bransfield, Joseph Burrascano, Anne Fierlafijn, Theresa Denham, Huib Kraaijeveld, Jennifer Kravis, Mualla McManus, Clement Meseko, Jack Lambert, Sin Hang Lee, Kenneth Liegner, Christian Perronne, Kenneth Sandström, Ursula Talib, Torben Thomsen, Jim Wilson.

Expert Reviewers: Gabriela Barrios, Barbaros Cetin, Joseph Jemsek, Jose Lapenta, Natasha Rudenko, Armin Schwarzbach. Advisors: Cees Hamelink, Astrid Stuckelberger.

The World Health Organization (WHO) received a submission from our Ad Hoc committee in March 2017 to upgrade the ICD codes to better reflect the science and clinical reality of patients. In June 2018 the WHO announced an improvement to the ICD 11 codes that somewhat better reflect some of the longer term treatable chronic symptoms of Lyme disease, but WHO is still not acknowledging the true seriousness and chronic disabling nature of Lyme borreliosis.

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One Comment


    I wrote this to make sense of it for my own self but then I figured it might help others to make sense of the good news from a common Lyme patient’s point of view.

    You got a tick bite, or you didn’t even know it.
    You got a bulls-eye rash or no rash at all.
    You got infected with the Lyme disease causing infectious disease bacteria – Borrelia.

    2-4 weeks antibiotics didn’t cure you, you are still sick. You might have positive tests.
    You might have non- reactive “non-diagnostic CDC for surveillance-puroposes-only” test results which are known to be flawed but promoted as fool proof.

    You didn’t know exactly why there was a controversy over Lyme treatment because there are so many pieces that make up this bleak pie. That said, one major reason is because all governments and healthcare institutions and health insurance corporations work under the authority of the World Health Organization (WHO) in a major way.

    The WHO classifies all diseases with their own unique code numbers. At the end of the line, when your doctor or specialist or insurance agent considers your health on the administrative side, all they see is a number alongside your name. That number is a code related to one of the WHO diagnostic codes – ICD code book. That’s how it works.

    Until now, up until the end of the WHO ICD-10 code book this year, Lyme disease was only recognized as Early-Cutaneous Lyme Borreliosis. Deemed to be a rather insignificant bacterial infection caused by a tick which is cured with 2-4 weeks of antibiotics.

    However, now the WHO has released the new ICD-11 diagnostic code manual.

    The WHO has announced to the world that it recognizes Chronic Lyme Disease – Disseminated Lyme Borreliosis – as well as having the old code for basic Early-Cutaneaus Lyme Borreliosis. It is now validated and finally has its own IDC-11 diagnostic code!
    1C1G.1 Disseminated Lyme borreliosis

    Not only is there the 1C1G.1 – Disseminated Lyme borreliosis,but there is:

    Bacterial encephalitis
    Bacterial meningitis
    Meningitis due to Haemophilus influenzae
    Other specified bacterial meningitis
    Bacterial meningitis, unspecified
    Infectious myocarditis
    Bell palsy
    Infections of the lacrimal gland
    Purulent endophthalmitis

    What does that mean?
    That means Disseminated Lyme disease can lead to complex health conditions that are so well recognized they already have their own ICD-11 code.

    The doctor who has formally provided you with a clinical diagnosis for 1C1G.1 Disseminated Lyme Borreliosis will then use additional WHO ICD-11 codes if they are applicable in order to identify any associated illness or condition that is caused by the Disseminated Lyme Borreliosis.

    As well, doctors who have given you the 1C1G.1 WHO ICD-11 clinical diagnosis for Disseminated Lyme Borreliosis can use additional ICD-11 codes to identify any sequelae. Furthermore, the ICD extension code, “cause of late effect” is used in addition to demonstrate the relationship between any causative condition of 1C1G.1 and the resulting sequelae.

    Any treatment or services prescribed to you by your doctor is then directly linked and associated to specific ICD-11 codes in the correct way. Your doctor is following protocol according to policies and procedure thus in accordance with the terms and conditions in place necessary to satisfy the medical administration aspect.

    Your doctor is not attacked for perceived irresponsible and reckless practices for treating your Chronic Lyme Disease as before. Your doctor can continue to be a professional without unnecessary molestation by the administrative authorities behind the scenes.

    You as a patient are provided with the treatment your doctor and you have agreed is the best to serve your healthcare related requirements, without being discriminated against.

    It sounds too good to be true. Isn’t that supposed to be how it works in the first place?

    In due time the truth will come out in the mainstream media. For now, follow all of the CanLyme reports related to Jenna Luche-Thayer and the Ad Hoc Committee in particular. Jim Wilson, president and founder of CanLyme is indeed part of the International Ad Hoc Committee whose collective efforts all lead to the recognition of human rights abuses against Lyme disease patients on a worldwide scale due in part to refusal to recognized Chronic Disseminated Lyme Disease and the many complex ill health complications caused by it.

    This is an historical time in Lyme disease history here in Canada and in the world. It does not mean it is time to sit back and enjoy the ride. In case you haven’t noticed, the media is not reporting this extraordinary victory for us Lyme disease patients who have been mistreated, misdiagnosed, dismissed, told it was all in our heads and treated with mind-altering antipsychotic pharmaceutical drugs. This won’t truly be a reality until everyone knows about it and agrees with it. This is only half the story – extraordinary corruption is the other half.

    Also, please don’t take what I am saying as Gospel Truth. Do your research. CanLyme has some great articles on this situation as a good point of departure. You can find Jenna in YouTube videos explaining the whole thing. This is history happening right before your eyes. Be a part of it! Make a difference. Get this into the media and ask them to interview someone important. Then politicians will eventually be compelled to comment.

    Let’s see some good things come out of this.

    It’s about time!

    *** Much thanks to all of the pioneers and Human Rights Defenders who got us this far ***

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