Lyme disease infographic

Lyme disease infographic by Daniel Cameron, M.D. & Associates

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Episode 56: Heavy metals, SIBO, or how I feel so cheated…

Episode 54: Operation Sanity Preservation (OSP) in progress

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.

Episode 52: Just keep swimming…

Episode 42: Time to get out of bed!

Episode 38: “You’re just biochemically wired wrong”

Episode 36: Where do I go from here?

Episode 27: Weekly pills, pills, pills

Episode 18: Doctor-love and metronidazole

I know you’re dying to know how I made it to the bathroom the second time so let me kill the suspense: Jan kindly wheeled me where I needed to go. I’d predicted this could be an issue so we’d brought the transport chair with us to the Mount Royal.

Under Our Skin, the documentary

Under Our Skin is a must watch documentary about chronic lyme disease. It took me 6 sittings to finish it as I cried my eyes and heart out. These people’s stories are my story, their pain is my pain, their revolt is my revolt. You will find the movie it its entirety below.

Please note, that this documentary is about the United States. In Canada, the situation is even more fucked up. First of all, there is denial by medical authorities of the existence in certain regions and prevalence of Borrelia burgdorferi (and associated co-infections) carrying ticks. Canada’s public health agency denies the existence of chronic Lyme disease and medical associations have cracked down on doctors who prescribe the necessary long term multiple antibiotic treatment. Doctors usually don’t know how to recognize it or how to test for it, preferring to make the assumption that the patient needs psychiatric help, or diagnosing him with fibromyalgia, chronic fatigue syndrome, multiple sclerosis, etc. Doctors refuse to treat patients who know they have Lyme disease, who pay their taxes (if able to work) and yet have to pay out of pocket to get treated in the States. And if that wasn’t enough, well the two-tiered testing method used in Canada is grossly inaccurate, it is known to miss many lyme cases as it does not detect the infection immediately after the bite and also completely misses chronic lyme disease. This is a very short summary and only scratches the surface. Lyme disease is an extremely complex and multifaceted issue.

Oh, did I mention that all this was some seriously fucked up shit, tabarnac?! Pardon my French.

Synopsis: In the 1970s, a mysterious and deadly illness began infecting children in a small town in Connecticut. Today it’s a global epidemic. A real-life thriller, this shocking festival hit exposes the controversy surrounding chronic Lyme disease. Following the stories of individuals fighting for their lives, director Andy Abrahams Wilson reveals with beauty and horror a natural world out of balance and a human nature all too willing to put profits before patients. The film follows six individuals including major league ball player Ben Petrick who report chronic symptoms, which they attribute to persistent Lyme infection. The majority of the film is devoted to the storyline of these patients and their reported recovery. The film also focuses on state medical board investigations of Joseph Jemsek and Ray Jones, two physicians who prescribe long-term antibiotics for chronic Lyme disease.
Year: 2009
Duration: 1h44

Under Our Skin 2: Emergence is a sequel set to come out this summer and is said to “take the viewer on a journey from horror to hope”. I’m looking forward to it. As I mentioned before, hope is an incredibly important element in this type of healing journey, as without it you are as good as dead.

What Is Chronic Lyme Disease?

I woke up feeling slightly more rested today, my shoulders and neck even hurting a bit less and allowing me to undertake this written blog post. The one particularly shitty thing so far is that I also woke up quite anxious. In the last few days I had been feeling that internal physical shakiness that accompanies anxiety and today it seems to have finally gotten to my head, so to speak. This, too, is part of the cycle of my illness and I have had to learn to deal with the motions. Feeling anxious and uncomfortable in my own skin (atop the physical discomfort) often quickly makes way for feeling depressed about my situation and I sometimes end up with some delusions.

On days like these, I can easily feel that I am very alone, that all my efforts are not good enough, that I am useless (here at home doing nothing), that I will always be this sick or even that I somehow deserve to be sick. Luckily I have some practice with these impostor thoughts and do my absolute best to stare them in the face and laugh at their expense.  I’ve got bigger and better things to do, like this little introduction to what chronic Lyme disease is. The one advantage of anxiety is that it makes my brain sharper and more focussed than other days, so it’s the perfect opportunity to spend some time writing. 🙂