“Just because you didn’t put a name to something, it did not mean it wasn’t there.” Jodi Picoult
Why recognition is so important
Recognition embodies several things at once for Lyme patients and their advocacy groups. It's useful to make a distinction between the different meanings. Otherwise an abstract word as such will mean nothing at all.
First and foremost, recognition would imply that if you’re ill, you are ill.
Huh? Yes, mysteriously and probably for the first time in history, with Lyme you are magically declared ‘cured’ after a few weeks of ineffective treatment - regardless of the fact that you are still blind, paralyzed, in pain and so on.
Now suddenly this is called 'MUS' (Medically Unexplained Symptoms) or 'PTLSD' (Post Treatment Lyme Disease Syndrome). Can you imagine having cancer for two weeks, but suddenly declared 'cured', while still having the same tumor? Yet now it's called ‘Post Treatment Cancer Syndrome'.
So, you end up being just as ill, having a meaningless diagnosis and three more problems.
Two of them are that you are now (legally as well as medically) regarded as a psychiatric patient. Thirdly, your insurance company will stop paying for any treatment that will do something about the original cause of your health issues: Lyme.
So far, we only covered the health, legal and financial aspects of recognition. Now we get to the social one. If your doctor cannot give you some serious-sounding name for a disease, but declares you 'mental' instead, be sure your social environment will be tempted to adopt that attitude. Doctors are still regarded as authorities in our society.
So apart from not being treated properly, being stuffed with antidepressants and going bankrupt because of bills you need to pay for Lyme treatment in private clinics - by doctors brave enough to face retribution by their peers and character assassination by the media for actually upholding their Oath - you also need to fight stereotypes of ‘being lazy’, 'looking too good to be ill’ and deal with the fact you might even be suggested to become a whore.
Combined, the lack of these different meanings of recognition lead to an alarming number of suicides among Lyme patients. Just because of missing codes.
Did you know that if you walk into your doctor’s office with - let’s say - a heart attack, sudden blindness, searing pains, paralysis or something equally severe, your doctor can access a worldwide body of knowledge about all existing diseases, their conditions, causes and possible treatments?
This impressive system uses codes, International Classification of Diseases (ICD) codes, for every illness and condition imaginable. Every ten years the World Health Organization revises them to improve the information your doctor has, based on the latest scientific research.
Wouldn’t you expect that if that heart condition can be related to Lyme, it would be in there? Nope, sorry. At least not until recently.
My friend Jenna Luché-Thayer is a former Senior Advisor to the United Nations, with over 30 years of global experience supporting the rights of the marginalized. She is the Founder of the Global Network on Institutional Discrimination and she determined that these missing codes were a source of much unnecessary suffering.
She then reached out to her global network and the Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes was formed. It included renowned scientists and doctors such as Dr. Horowitz, Dr. Liegner, Dr. Leona Gilbert, Dr. Judith Miklossy, Professor Perronne and many other internationally established experts from four continents.
The Ad Hoc Committee for ICD11 Health Equity
The goal of the Ad Hoc Committee is to help WHO update their codes, synchronized to the latest scientific references of Lyme infections, stages and its many conditions. The international group then undertook intensive research to inform the revisions of the codes.
Our research extended beyond medical and scientific concerns – we demonstrated how the missing or incomplete codes were a form institutional discrimination that contributed to a worldwide situation of preventable human misery.
I was honored to be able to contribute to this extra-ordinary project as a social researcher, highlighting the Human Rights side of the report. I provided Dutch cases regarding how parents who go to extraordinary measures to provide their sick children treatment are having their children taken from them and another case where a 29 year man suffering from late stage Lyme was told his insurance company would not cover his medical treatments but would cover his euthanasia.
The report 'Updating ICD11 Borreliosis Diagnostic Codes'
The Ad Hoc Committee has provided WHO our comprehensive report to inform and shape the new diagnostic codes. WHO has thanked us for our research, and recognized our efforts and contributions.
Prior to our efforts the digital draft (Beta version) only included four of the hundreds of possible conditions caused by Lyme. They focused on the acute and early infection and did not acknowledge latent or chronic Lyme. Furthermore the ICD11 Beta version did not include transmission via flees and human pregnancy. Neither did it provide a structure that would not allow doctors to find the needed connections nor allow stakeholders to enter relevant information.
The current revision phase for the WHO’s ICD codes ended on March 31,2017. On March 29th, we submitted a 103-page final report with over 260 references to A-status peer-reviewed scientific articles. We also entered all our proposals onto the digital Beta platform prior to March 30.
These proposals were supported by multiple peer reviewed publications and the conditions included:
- Congenital Lyme infection
- Persistent infection
- Latent infection
- Possible fatal conditions of the kidneys, liver, heart, lungs
- Strokes and other vascular diseases
- Dementia and other possibly fatal neurological condition
We also included a list of urgent suggestions for research into areas, which have not been properly investigated yet, such as transmission via blood transfusion, donor organs and sexual intercourse.
From hell to hello
Therefore doctors were actually - technically - right so far, when they told you that ‘Lyme does not exist’.
Why patients were sent home without hope or were simply locked up in psychiatric or MUS institutions, based on very biased research.
Why ill children are being taken away from their caring parents.
Or why doctors, who do care for their patients and who are willing to treat people longer than outdated guidelines indicate, for forms of Lyme that are complicated and persistent, are attacked by their governments and medical boards.
It is also why this will not happen anymore, once the WHO had updated their codes.
The word ‘hell’ is only one letter apart from ‘hello’. Any programmer will tell you that if the code for the letter ‘o’ is not written in your computer's software, tapping it into the keyboard will not produce it on your screen.
We are confident that the WHO welcomes this stakeholder input to provide state of the art information to doctors all around the globe. As is their standard procedure with any other serious disease.
With properly updated ICD codes there will more accurate statistics of the Lyme epidemic. Based on these new statistics, new policies will be developed. With new policy, priority will be given to funding. With funding, international cooperation will be stimulated and proper research will be done into valid tests and effective treatment.
Because of new research, public health information will be accurate. Based on this information, legislation will be adjusted. With new legislation, insurance companies will be forced to cover your health costs. With coverage, better treatment is possible, regardless of income. With treatment, you will get your life back.
With medical and legal acknowledgement of Lyme as a serious worldwide epidemic with multiple conditions and multiple ways of transmission, finally proper measures can be taken to preserve public health. And to end the current institutionalized violation of basic human rights of far too many people.
In short: a paradigm shift that will change the current ‘hell’ for millions of people into ‘hello, Lyme’ on the computer screen in your doctor’s office.
Author of 'Shifting the Lyme Paradigm', chairman of the On Lyme Foundation and member of the Global RBCC, an international consortium of nonprofit organisations, medical practitioners and science innovators dedicated to helping institutions recognize and respond to the pandemic of Borreliosis diseases, such as Lyme Disease.
P.S. within a few months, our report will be available to the public, so you can show it to your doctor or use it in court, if needed. Some portions of the report may be released sooner. Sign up to my Newsletter to get a heads up.