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 ❤

Help us protest the inadequate draft federal framework!

Supporters and friends! I need your assistance. Elizabeth May, the Green party leader and great champion of the fight for adequate Lyme disease recognition in Canada, has created an official e-petition that can be defended in parliament following the very disappointing draft federal framework published earlier in February. The petition on change.org that is going around gathered almost 35 000 signatures, which is amazing, but it was not “official”. This is where it really counts!

I just ended a conference call with high ranking Public Health Agency of Canada officials and medical representatives and it is abundantly clear that they are not acting in the patients’ and public’s best interest. Please stand with me for justice and humane treatment for all: sign, share share share, and give Lyme patients a voice.

The official parliamentary petition: https://petitions.parl.gc.ca/en/Petition/Sign/e-903

La pétition en français : https://petitions.parl.gc.ca/fr/Petition/Sign/e-903

On a personal note… believe me when I say that I wish I didn’t have to be a Lyme activist. I wish I could move on from this cause, focus on my healing entirely and be a positive creative force in the world outside of the fight for recognition of Lyme disease. But the truth is, there is so much work left to do and we face roadblocks at every step. This infectious illness, the opportunistic infections that often accompany it and the plethora of health issues that are brought on by its destruction of a person’s immunity (and its action on all bodily systems) can have an absolutely devastating effect on those who are afflicted by it, especially if it is not caught and treated early. Don’t think “big flu” so much, think syphilis, AIDS, illnesses like MS and ALS. Thousands of Canadians are suffering from its consequences, without proper recognition of their health statuses, with loss of income and no access to financial aid, paying tens of thousands of dollars to try to regain their health, and with no real help and often contempt from the medical community. This is my situation and I do not wish it upon anyone. And I am one of the lucky ones: I have a loving and supportive spouse, a fighting spirit, a resilient mind and body (despite it all), and I firmly refuse to internalize the shame and stigma thrown at me from numerous sources. Living with this unrecognized illness and its consequences in Canada is nothing short of hell for so many. Just a few days ago we learned of a member of the Lyme community in Quebec taking his life: http://www.tvanouvelles.ca/2017/02/26/maladie-de-lyme–encore-plus-de-regions-touchees (in French).

Please help make us heard! Much love and health to you all. ❤

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 62: Yes, there is healing


ps. I may need to review my definitions of sympathy and empathy, as looking into them now I realize what I said in the video doesn’t make perfect sense. The issue was this: I had to learn to be empathetic with my Lyme friends and be able to listen to them and truly care about what they are going through and try to help as I can, but all this without having it destroy me mentally and without identifying too much with their pain, simply because I know that pain too well and it could kill me if I let it. And because I don’t think it’s fair that I feel better and they don’t all. I created separate buckets in my mind, a bucket for my experience and my pain, one for my Lyme friends, one for how messed up the medical world is, etc., and I work daily at not mixing up all the buckets, as it could come at a great cost for my mental health. Voilà.

Canadian Lyme disease bill: when the doctors don’t want you to heal

[I shared this article on Facebook with this accompanying text. It turned out much longer than I expected, and so I have decided to share it here as well.

The article in question: Lyme disease bill to be challenged by infectious disease experts in Senate]

I need to share this news article, even if the simple idea of writing a text for it has me shaking like a leaf.

As I have said before, the state of affairs is horrible for Canadian chronic Lyme disease sufferers like me. I am extremely lucky to have access to Lyme disease treatment and a doctor who does not rely on old and false information concerning Lyme disease, and medicine in general. Elizabeth May, the Green Party leader, currently has a Lyme disease bill in Parliament (full text here: http://goo.gl/qmyg04) and it is definitely a step in the right direction to insure that more doctors get access to correct information and patients get access to much needed care. And sadly, but expectedly, infectious disease doctors are now taking offense.

To quote the article: “The bill appears to support the notion that significant numbers of people in Canada are suffering from a condition they believe to be chronic Lyme disease and that these individuals are being failed by a medical system that refuses to accept that diagnosis. Further, [it] suggests Canadian medical guidance on how to spot Lyme disease relies on U.S. guidelines it terms “so restrictive” that they severely limit the diagnosis, leaving sick people to suffer.”

Yes, and that’s a really good thing, unlike what these “experts” say.

As many of you know by now, I have spent the last 13 years of my life very ill with chronic Lyme disease. My health got progressively worse; I suffered tremendously, all the while trying to go on about having a normal life in my twenties because no tests showed anything wrong with me. The dozens of doctors I saw did not know to look for Lyme disease, and often times did not believe my symptoms because they affected my entire body, and this includes infectious disease specialists (more on how my visit with an infectiologist went back in 2010 here: http://wp.me/p4A0Id-7g)

Over the last few months, I have become so ill with my multi-systemic infections that I hardly get out of the house anymore, I cannot cook for myself, I shower (when I have the energy to) using a chair as I cannot stand longer than a few seconds, walking anywhere is either impossible or very hard, I spend my entire days lying down on the couch, too pained to move, too tired to read longer than a minute or do anything that requires mental concentration, I have debilitating chronic and at times acute pain all over my entire body (constant, unrelenting pain in all muscles, joints, nerves, bones, all over my face, head, neck, my entire back, my legs, my poor knees, my feet, my toes, my arms, my hands, even my skin), horrendous nausea, chronic cystitis, numbness and temporary paralysis in my limbs, spasms and tremors, daily horrible headaches and migraines and severe gastrointestinal issues (and no, I don’t feel these any less despite the fact that they’ve been around for 13 years), and by the time most people sit down for dinner after a fulfilling day I am so drained that I can hardly muster the energy to give Jan a few hugs and kisses before he carries me into bed and helps me change because I can no longer move at all. It’s really messed up to be that dependant on others for your survival. I wake up every night repeatedly drenched in sweats, obviously fighting a very active infection, and feeling exactly as I would if I’d ran a marathon yesterday while on a hangover while fighting a flu mixed with malaria with high fever along with horrible stomach poisoning.

I fight for my life every single day, every single minute. The fact that I am not constantly hooked up to machines is simply a testament to how strong my body and mind are still fighting not to let the infections take over. Every day I work hard at maintaining the conviction that I can get through this, and I manage to do so only because I now actually know what is wrong with me. My entire body is riddled with laboratory test confirmed infections, including a minimum of 4 different pathogens, and it’s a frank miracle that I have made it this far.

You think this all seems impossible? I do too, and I wish it were. But please believe me when I say that although chronic Lyme disease seems absolutely incredible, it sadly is very real, and there are thousands of sufferers like me. The good news is there are treatment options, and I’m sure we all agree that all sick people, regardless of their illness, deserve to receive help to have their health restored. Personally, I expect to make a full recovery, even though my healing will take a very long time because I have been sick for so long. In the meantime, I get to find myself totally invincible and I get to appreciate love and laughter in my life like never before. It may be all I have right now, but I have it good. Being chronically ill makes for some really hilarious comedy, and Jan and I have the best possible time with it. 🙂

But why has my health gotten so bad? Precisely because of the denial of the medical system at large and the infectious disease “experts” specifically. To say that I am very angry would be a gross understatement. These are probably the same kind of close-minded “experts” that were labelling AIDS “gay-related immune deficiency” or “gay compromise syndrome” (http://goo.gl/lxBl3P). They are scared of the unknown and simply repeat what they have been taught, refuse to review their understanding and knowledge of disease and hold back medical advancement. There is much sound research out there supporting chronic Lyme disease and the many coinfections that come with it, along with a lot of research-based treatment methods. These doctors unfortunately define “anti-science” and it’s really twisted and doublespeaky that they are considered the “experts”.

And as a parting note, I have to say that reading about those fighting for Lyme justice being called “anti-science” or pejoratively dismissed as just a “vocal Lyme lobby” is like a knife straight to my heart and makes me want to go on a rampage. I have met many people vocal about Lyme disease in recent months and they are all the most courageous, strong, medically aware and, sadly, sick people you will ever meet. We have no choice but to know our own health. All Lyme warriors fight so that others don’t have to suffer as much and as long as we have, we have nothing else to gain, but mostly, we just have very little to lose.

Without exaggerating, writing this text just depleted 90% of the energy that I had for today. But it was worth it, definitely worth it.