Definitions and semantics of terms like "chronic Lyme disease"

[X-member]

Corruption and Human Rights Violations Against Lyme Doctors, Scientists and Parents Now on United Nations Record

https://canlyme.com/2018/06/14/corrupti ... ns-record/

Two quotes from the link above:

This resulted in a meeting between United Nations Human Rights Council Special Rapporteur Forst and medical professionals, scientists, human rights experts and advocates on June 5, 2018 in Geneva, Switzerland.

Jenna Luché-Thayer, a human rights expert with 33 years of experience in 42 nations reported how the case definition of Lyme borreliosis (LB) was changed by colluding US State Actors and certain members of the Infectious Disease Society of America (IDSA) and that the timing of these changes concurred with the launch of a failed Lyme vaccine, promotion of an unreliable, yet profitable diagnostic test system and the unwillingness of US insurers to cover the chronic or persistent form of the disease as they moved into the 'managed care' model.

Now I wonder if the definition of "chronic Lyme" that this US woman use, really is the same definition that used in Switzerland, and this is because Judith Miklossy, who actually is from Switzerland give us the following information:

Chronic or Late Lyme Neuroborreliosis: Analysis of Evidence Compared to Chronic or Late Neurosyphilis

Judith Miklossy*

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3551238/

A quote:

Importantly, the existence of late Lyme disease is approved by all official guidelines in the U.S., Canada and Europe. The terms “late” and “chronic” Lyme disease, as in syphilis, are synonymous and define tertiary Lyme disease [20, 125]. The use of “chronic” Lyme disease as a different entity is inaccurate and confusing.

[X-member]

A quote from the link in the first post in this thread:

To note, the WHO's ICD codes for Lyme borreliosis are still inadequate and outdated. When Ad Hoc member Stuckelberger contacted WHO to set a meeting to discuss the LB codes, she received written communications stating that "WHO has no person for Lyme borreliosis" -- one of the fastest growing vector borne diseases in the world and officially ranked by the European Union as one of the top public health threats in Europe. These inadequate codes may be why in West Africa many persons misdiagnosed with 'debilitating drug resistant malaria' were eventually found to be suffering from borreliosis infection.

I don't understand this. Does this person claim that they don't use the diagnostic code below in West Africa, and therefore people are (mis-) diagnosed with something else?

A69.2 Lyme disease

https://www.icd10data.com/ICD10CM/Codes ... 69-/A69.20

Edit to add: Lyme disease = (Lyme) borreliosis

[X-member]

I have now seen on facebook that the US woman that is mentioned in the first post in this thread do not use the original definition of chronic Lyme borreliosis.

So maybe she don't even know that European LLMD's actually use the originial definition?

Diagnosis and Treatment of Lyme borreliosis
Deutsche Borreliose-Gesellschaft e. V.

http://www.borreliose-gesellschaft.de/T ... elines.pdf

Some quotes:

Disease manifestations of Lyme borreliosis which occur more than 6 months after the start of infection are designated in this Guideline as late manifestations or as chronic.

In this classification, the early stage is equivalent to Stages I / II and the late stage is equivalent to Stage III. The term “chronic Lyme borreliosis” is equivalent to Stage III.

Chronic Lyme borreliosis
(late stage)

The definition of chronic Lyme borreliosis that is mentioned above is also used in Sweden, Denmark, Norway, Finland and in many other countries.

Edit to add:

There are actually also US physicians that use the original definition of chronic Lyme disease.

Lyme Disease Clinical Presentation

https://emedicine.medscape.com/article/330178-clinical

A quote:

Late or chronic Lyme disease refers to manifestations that occur months to years after the initial infection, sometimes after a period of latency. Signs and symptoms of chronic Lyme disease are primarily rheumatologic and neurologic. Acrodermatitis chronica atrophicans, the cutaneous feature of late-stage Lyme disease, is found almost exclusively in European patients.

[X-member]

The US woman that is mentioned in the first post in this thread claimed this today on facebook:

....IDSA—a group that DOES NOT BELIEVE IN CHRONIC INFECTION.

Perhaps Dr Halperin, IDSA can help her?

Chronic Lyme disease: misconceptions and challenges for patient management

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4440423/

A quote:

Untreated infection, particularly with joint involvement, can be chronic, lasting years.

[X-member]

The US woman that is mentioned in the first post in this thread claimed this today on facebook:

In France, the US, everywhere! The same $lymey games on global scale chronic Lyme/PTLDS are hypocondria $lyme fraud = no medical care.

I guess that this woman has never, ever heard of the original definition of chronic (Lyme) borreliosis.

The original definition of chronic (Lyme) borreliosis

viewtopic.php?f=11&t=6080

[X-member]

Question to Richard Horowitz: Why are You Trading Post Treatment Lyme Disease Syndrome for the Reality of Persistent Infection?

Jenna Luché-Thayer. November 11, 2018

https://www.linkedin.com/pulse/question ... he-thayer/

I don't really know what to say. But I am glad that I am not Dr Horowitz.

[X-member]

Perhaps this belong in this thread?

Tick-Borne Disease Working Group

2018 Report to Congress

https://www.hhs.gov/sites/default/files ... _final.pdf

A quote:

Recommendations: Ensure the rights of those dealing with Lyme disease and tick-borne
diseases and conditions by reducing the burden of the processes under which patients
are currently diagnosed and treated and by which they access care. Basic protections
must include, but not necessarily be limited to, those that:

Recommendation 7.3: Protect patients from employment discrimination.

Recommendation 7.4: Protect students of all ages from discrimination.

Recommendation 7.5: Protect patients from health care and disability
insurance coverage and reimbursement policies that are unduly
burdensome.

Recommendation 7.6: Protect the rights of licensed and qualified clinicians
to use individual clinical judgment, as well as recognized guidelines, to
diagnose and treat patients in accordance with the needs and goals of
each individual patient.

[X-member]

The US woman that is mentioned in the first post in this thread posted this (and much more) today on facebook:

Q3 to Tick Borne Diseases Working Group:

Did you know over 32 millon dollars in NIH grants have sponsored articles that falsely accuse persons suffering from persistent Lyme of hypocondria, including articles on Post Treatment Lyme Disease Syndrome (PTLDS) - a fake condition that requires no medical treatment?

Well, now you know!

So, stop using PTLDS for a disease proven to show persistent infection and immunosuppression -

UNLESS YOUR INTENT IS TO DENY MEDICAL CARE!

My comment: Does people in Europe (or anywhere else for that matter) really need this US woman's "help"?

Edit to add:

The US woman has today (November 18, 2018) held a speech in London.

[X-member]

What the US woman says and that I have posted in the previous post in this thread makes me really annoyed.

It is (what I know of) still allowed to call unexplained symptoms that remain after treatment for borreliosis, PTLDS.

And I have really hard to believe that the Tick-Borne Disease Working Group also call a proven persistent, active borreliosis after treatment, PTLDS.

[admin]

The previous 9 posts have been moved away from topic Corruption and Human Rights Violations Against Lyme Doctors, Scientists and Parents Now on United Nations Record.
Reason: the posts were off-topic.