Silent but not dormant

peru-hamac
Pondering life and all its beauty on a recent enriching and uplifting trip to Peru.

I’ve been a little silent here for a while.

The truth is, I’ve had increasingly less to share about my personal journey with Lyme disease specifically, and have been really busy working on my physical, psychological, emotional and spiritual health. When I feel called to share more on my whole healing journey, I will certainly do it; for now, however, I am very busy going inward and working out all the things. There is still much to do, many symptoms to work out, but I am happier, more present and more connected than ever before in my life.

At the same time, I was asked to step into the position of president of the Quebec Lyme Disease Association (AQML) in mid-2017 and have put my advocacy work to use in that context. Our current major action is a political one, namely we have an official petition at the National Assembly of Quebec which will be deposited in 2 weeks (the translated petition text and instructions can be found here). There are more and more impactful stories out in the media about those afflicted with Lyme disease, more backing from various spheres of society and political support is certainly growing. It feels like things are shifting and that soon, the medical authorities will no longer be able to sit back and deny the issues we face while pointing their fingers at us for being anti-science (speaking of science, have you seen this latest research: Lyme bacteria survive 28-day course of antibiotics months after infection)?

With love,

Marge ❤

La Presse+, 3 juillet 2016 : La guerre des tiques

“La maladie de Lyme gagne du terrain au Québec. Et avec les tiques qui la transmettent débarque une intense controverse sur la façon de la diagnostiquer et de la traiter. Patients qui se disent abandonnés, médecins qui crient à l’antiscience, chercheurs dissidents qui se rangent du côté des malades : le point sur cette guerre des tiques qui divise.

diagnocontro
Juillet 2016

UN DOSSIER DE PHILIPPE MERCURE”
– tiré de La guerre des tiques, dossier en 3 sections dans La Presse+, édition du dimanche 3 juillet 2016 (Google translation: Tick wars) :

  1. Des diagnostics controversés
    (Google translation: Controversial diagnoses)
  2. Le débat en trois points
    (Google translation: The debate in three points)
  3. Que faire contre la maladie
    (Google translation: How to stay protected from the illness)

Le nouveau bastion de l’antiscience (Google translation: The new bastion of antiscience), article d’opinion publié le 20 mai 2016 dans La Presse+, écrit par 4 médecins québecois, qui a suscité l’intérêt du journaliste par rapport à la controverse et dont il est question dans le dossier (, crisse).  😉

marge-2014
Mai 2014 (photo tirée du dossier La Presse+)

Ajout: La réponse du père d’une personne atteinte par la maladie, Claude Martin, dans la section débats de La Presse du 10 juillet: L’incroyable incurie du monde médical (Google translation: The incredible negligence of the medical world). “Traiter les autres comme ils le font d’« antiscientifiques » est proprement révoltant. Est-ce que le déni constant constitue la véritable « science » de la communauté médicale du Québec ? Cette communauté fait-elle de la recherche dans ce domaine ? Où est donc votre « science » et comment fonctionne-t-elle ?” – Claude Martin

My Canadian Lyme disease conference public forum testimonial

meatconfMy name is Marguerite Glazer, I’m from Montreal and I am a Lyme survivor. My health nightmare began 15 years ago, when I was 19 years old. Suddenly, I started feeling sick every single day.

I remember at first naïvely thinking: I’ll go to the doctor and the doctor will help get me well. But in the span of 12 years I saw over 30 doctors, generalists and specialists of all sorts, who all very quickly dismissed me with completely bogus diagnoses. Slowly but surely my symptoms worsened, they multiplied, affecting my entire body, making me increasingly incapacitated: unable to work, get out of the house much, take care of my basic needs. Extremely ill and repeatedly told there was nothing actually wrong with me, I considered suicide on numerous occasions. It felt like I was dying on the inside, and I had nowhere to turn.

After years of pain, exhaustion and relentless research, I finally did proper testing 2 years ago and was diagnosed with Lyme disease. For the record, I tested unequivocally CDC positive. With a mix of long-term antibiotics and other complementary methods, I gained my life back within a year and felt better than in my entire adult life.

After being diagnosed with Lyme disease I became involved in the Lyme community in Quebec, only to realize the extent of this devastating systemic issue. Je représente aujourd’hui tous les Québecois au prise avec cette maladie qui les empêche de vivre et pour laquelle ils n’ont aucune aide dans la province: déni de l’ampleur du problème, pas de soutien médical, pas d’aide financière ou gouvernementale, et une santé qui dégringole… c’est l’abandon total. On parle de centaines ou même de milliers de vies affectées et le nombre de cas d’infections augmente à un rythme faramineux. La situation est abbérante, ne fait qu’empirer, le problème est endémique et les patients ont depuis longtemps compris que ce n’est pas chez leurs médecins qu’ils vont trouver de l’aide.

Lyme disease sufferers desperately want to get to the root cause of their issues. Sadly, we are faced with MDs who show great contempt towards chronically ill patients, showing savage disregard for our suffering. We are told to stop looking into potential solutions and just accept that our problems are not real, that they are psychosomatic, of unknown origin, they label us with numerous misdiagnoses and of course push for us to take inappropriate medication. Patients are ridiculed and insulted. They are called attention-seeking hypochondriacs. They are told they have OCD because they focus so much on their health and symptoms. They are told that depression causes their seizures, that their anxiety causes their vision problems and that overall, they are just lazy people who don’t want to deal with life.

It is staggering how often we hear this nonsense being told to patients. On what evidence are these doctors basing their diagnoses? In a world of evidence-based medicine, it appears that doctors, and specifically infectious disease doctors, are often relying on their own magical thinking when it comes to Lyme patients. They freely throw around terms like placebo and psychosomatic, unwilling or maybe simply unable to do their actual job properly.

We are taken for fools, seen as gullible people drawn to a quacky diagnosis of chronic Lyme disease that we stumbled upon on the Internet. I have spoken to hundreds of Lyme patients and let me be clear: nobody, absolutely nobody wants to be part of this club. We fight strong and stick together because we have to, for survival. When the medical system is against you then much of society follows, and the isolation of the Lyme predicament is truly a gut wrenching and horribly difficult human experience. We fight because we don’t want anyone else to go through what we’ve been through. We fight so that people know about Lyme disease and other root causes of illness, and so they know how widespread it is. We fight so that others know that it can get better, that with the right help they can recover, that there is hope in hell. 

Medical arrogance, a profound disconnect from the reality of chronic illness and over-reliance on outdated and flawed science and testing… those are the real diseases du jour.

Most doctors would rather believe that thousands are having the same mental and physical delusions than to question the mantras they have been taught to repeat. The rare compassionate doctors who are up to date with their scientific knowledge and who truly care about helping their patients heal are prosecuted by the medical police. It seems that we’ve gotten seriously off track when it comes to our idea of health care.

Let’s not forget that the primary goal of medicine is to make people well. We should all be concerned first and foremost by the reality of the Canadian Lyme disease patients. The present medical system in Canada is relying on outdated and flawed information, masqueraded as science, causing thousands undue suffering. We need to do better because the current standards are failing us miserably. And we need to do it now.

Lyme patients and their expert doctors have so much to teach: it’s up to everyone to listen. Being sick is not a crime, I hope this conference helps put a stop to the war that is being waged on Lyme disease patients.

Episode 32: A chat in the park

Not to confused anyone, when I say 100% of my thoughts and feelings are guided by the illness right now, I mean to say that I blame Lyme disease and treatment for essentially all of the anxiety and the depression that I have been going through in recent weeks. This is an important distinction I wish to make because it is very much a physical issue, even though it happens in the brain area. I have been anxious and depressed in my life because of negative thought patterns and other issues, and this is not what is happening right now. It’s a hard sell, I know: what I am going through is hard and depressing, so I should be depressed, right?

I have to strongly disagree. Throughout a lot of this, I have mostly been in high spirits. Of course I have moments where I get sad and upset about my circumstances (daily), but that is not the same. Life truly is beautiful. I have experienced lots of joys and human connections throughout the last few months and I am grateful. I’m also quite content with myself and proud of how I am holding up. Again, a hard sell, but the truth nonetheless.

Of course, when in a depressed state, I have lots to cry about because my life is objectively kinda crummy right now. But my brain chemistry is simply messed up because of my treatment, more specifically due to the effects of Doxycycline killing off pathogens in the brain. It makes me have anxious and depressed feelings and thoughts, and I fight all day not to buy into them. No, I do not mean to feel this way and I do not think myself into feeling this way. And no, this is not a question of will power. Depression and anxiety themselves are not a question of will power, either. But it’s also very important to differentiate Lyme-induced mental issues from psychological issues.