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

Episode 64: Busy spreading the good Lyme word

Note: the Canadian conference to develop a framework for Lyme disease will be held on May 15-17, 2016, in Ottawa. The planning committee is composed of many stakeholder groups including representatives from the Public Health Agency of Canada, medical associations and patient groups.

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.

Photo-onycholisis, or just another way to say doxy sucks

All 3 are mildly affected, with the ring finger being worst (typical, apparently)
All 3 are affected, the ring finger the worst (typical, I read)

In the last week, I started noticing the nails on my right hand were slowly but progressively unsticking from the nail bed. Nothing dramatic was happening, and my nails didn’t feel soft or brittle, but this was getting painful and made me wonder if I should brace myself for my nails falling off. After everything I have been through over the years, this did not seem over the top or paranoid, but I was obviously coming at it from a firm place of “oh heeeeeell no” and hoping it wouldn’t be something I’d have to deal with. Given the fact that I am on many antibiotics, I am also always on the look out for potential issues brought on by that, notwithstanding giving my body all the support that I can (daily varied probiotics and probiotic foods, real food diet, supplements, rest and relaxation, etc.).

Jan and I started devising theories to make sense of it, knowing that nails are dead and can be a way for the body to rid itself of impurities, so we hypothesized that this was just part of the shedding of all the byproducts of pathogens and/or toxicity in my body. This is probably not entirely false, probably not entirely true, but I don’t think it was such a bad hypothesis at all (albeit extremely reductive).

Continue reading “Photo-onycholisis, or just another way to say doxy sucks”