Sunday, May 11, 2014

Lyme Mothers

I can tell you I’m really angry today, again. Outraged in fact. It’s Mother’s Day today, but it’s also Lyme Disease Awareness Month 2014, and yesterday I did an event in Parksville, B.C. on Vancouver Island. A pretty spot on an idyllic beach facing mountains across vivid blue straits. But pretty Parksville hosts the same sinister danger that now haunts all of BC: potential, usually unwitting, exposure to Lyme disease, an inflammatory infection brought to people by ticks. 

Eighty people showed up on a sunny spring afternoon to hear myself, MLA Lana Popham and two Lymies talk about a disease that’s silently stalking our families. That level of attendance makes an advocate smile, even though it’s alarming to see so many touched by Lyme in a small place. But what makes my blood boil is the denial of basic medicine to people with a treatable illness that you hear about, over and over, at such gatherings. 

The story of Lyme disease victims in B.C. is distressingly repetitive. There are only two story lines, in the end quite similar – the medical professionals with the chance to diagnose and treat in the first instances are either certain that Lyme disease needn’t be considered in their differential diagnosis because ‘we’ don’t have it here, or they’re convinced it can be dropped as a possibility because ‘you’ couldn’t possibly have gotten it where you live. Neither certainty is real and warranted, but either way false confidence in these certainties governs fates and denies cure, and individuals and families pay enormous and needless prices.

Lyme disease is a terrifying disease if it’s undetected and goes untreated, because it rapidly turns a normally functioning body into a total, utter mess. Rescue becomes much more complicated when the infection disseminates. In short order you or a loved one become unrecognizable inside. The speed with which people descend into severe illness – disoriented, pain-wracked, inert, incapable of their family role – stands in stark contrast to how readily they’re spared all this if they get prompt diagnosis and a short course of cheap antibiotics. Fact is, due to improper medical certainties that erroneously rule out Lyme and bar treatment, people are placed on an escalator to hell every day in B.C.

How our medical system came to be governed by false certainties that lead to under-detection and refusal of treatment for a real infection is an interesting story, but not for now. What seizes me on mother’s day 2014, the day after the event, is the needless victimization occurring here, the total unfairness of it, and the sense of gross injustice this prompts in me. And just how often it is that mothers bear the full weight of the injustice because they are the true caregivers. Hence my outrage on Mother’s Day! 

Our two presenters yesterday were both moms, one dealing with Lyme stealing possibilities in her own body and preventing her being the mother her children deserve. If you can’t get up, recall how to make breakfast, lift your arms to wash hair, or stand the pain of physical contact with another person, you simply can’t be mom. The other presenter was a mother dealing with Lyme in a daughter who’s severely ill and still denied treatment by our public system. A mother who can’t offer succor to a child imprisoned by disease lives at her wits end and can’t be consoled or enjoy any aspect of her own life as an individual.

Yesterday, for a short while, I put myself in the shoes of a mom whose daughter was so ill she had no ‘normal’ life, a mom who spent years seeking diagnosis of any kind for a child she knew to be ill, with symptoms commonly associated with Lyme disease, but never considered from that angle by a succession of doctors. False possibilities were however constantly taken seriously in the minds of specialists, then ruled out by tests that were definitive. Obvious signs that should have led to Lyme being included were ignored by a system taught not to see it, and to believe we don’t have it, a tragedy that plays out daily across our province. After years of fruitless searching and a battery of doctors and tests unable to detect anything specific, during which the implication took root that it was in fact ‘all in her head’ (ie that her daughter was making it up!), a random visit to a chiropractor led to Lyme being finally considered, and the beginnings of a diagnosis and treatment plan eventually emerged.

It’s surely a relief after years of uncertainty to know what your child is infected with, but the descent into Lyme-hell is now compounded many times over and false certainties again make it worse. Seven years have passed, the little girl is now a teen who’s totally debilitated and denied any semblance of normal teenhood because of a failure to treat a detectable disease with a hundred bucks worth of antibiotics.  

So now the mom is seeking treatment for a disease-stage governed by equally cruel certainties: despite the spirochetes pervading her daughter’s heart, brain and joint tissues, the establishment believes there’s no such thing as a chronic form of the illness, so no active treatable infection. No active infection here, just ‘post-Lyme syndrome’, a nebulous term for the ravages of an acute infection that has now passed. If she has had Lyme, the system now says ‘too bad, so sad, there’s nothing more to be done for you’ turning its back on her for a second time. And so mom now finds herself facing the necessity of rescuing a sick child with no access to public healthcare whatsoever. No benefits, no knowledge, no help. Suddenly she finds herself in the land of self-help medicine, and by the way it’s self-pay, if you can find someone qualified to oversee the treatment. 

Walk in those shoes and you feel just how close desperation comes to despair, and that makes me angry. But moms refuse despair, and press on. Chronic Lyme is a bona fide condition and treatable. It may not be fully curable, but its treatable to the extent that a return to a fairly normal life is possible most of the time. That’s the treatment experience with patients who pursue it outside of establishment medicine. But the system says no treatment allowed – it’s too risky and the infection’s not active, so we won’t treat it, ever. The message is, learn to live with your disabilities, there’s nothing to be done. But moms have this incredible resilience and determination, born of deep attachment to their offspring. And they just don’t give up on their children, that’s not part of the program. And so they reach down deep, find the resolve, and against all odds invent a way back for us. But it shouldn’t be down to them to do it alone, and that makes me very angry.

The second mom who presented yesterday has Lyme herself, but long undetected, considered at some point in some doctor’s differential diagnosis, but ruled out by a negative test result from the flawed instrument BC relies on to not find Lyme. It almost never does. Another unwarranted certainty blocking diagnosis of a treatable infection, leaving each victim of its false negative results living with a disease that progressively debilitates them. I can abstractly comprehend a doctor’s choice to walk away from his medical training and the ethical commitment to do what’s in the patient’s best interest, because the medical establishment is sending the signal to rely on the test, in preference to diagnosing symptoms, and that establishment has the power to lift your medical licence. But the consequences of turning a blind eye to the implications of false test results, and allowing them to improperly rule out a disease possibility and refuse access to treatment based on that are dire. That willingness to roll over for an edict and abandon the patient interest stands in stark contrast to the refusal to give up on possibilities that’s characteristic of a mother’s love.

Putting myself in the shoes of a mother with Lyme, with children whose needs are pressing and whose care is ongoing, I can only imagine what it must feel like to know what needs doing and to be so sick that you’re prevented from doing it. Mothers, being the generous giving creatures they are, would be plunged into deep distress and depression at not being able to give what’s needed to their children.

I was moved by what I heard yesterday, even though I’ve been hearing versions of it for eight years now. I have deep sympathy for people who find themselves alone, within their family, fighting for rights they’re entitled to, for rights arbitrarily removed by committees of specialists with agendas, fighting for access to care that medicine is both ethically and legally obliged to provide them, fighting to see their children healthy again or to see themselves healthy enough to fulfil their roles in the rearing of their families. I’m enraged that we have not moved one inch forward in the eight years I’ve been advocating for better diagnosis and prompt treatment. It’s absolutely unconscionable, with the science and treatment experience we have in hand, that we endure induced, sustained medical ignorance and incompetence regarding a treatable infection that’s ravaging families across B.C.

So I’m angry this mother’s day and for good reason, but I’m also feeling inspired to put that energy to work, to renew my commitment to see change, and soon. The tools are sitting right there in front of us. We only need to stare down the public health bureaucrats and their pseudo-scientific rationales, have the doctors become doctors again, freeing them to use their craft skills and instincts for detection to clinically diagnose and treat Lyme disease when it appears in their offices. We do have to confront the false certainties circulated by the medical establishment in order to get there, but that’s a job that has to be tackled for the health and integrity of our public healthcare system. It’s our power tool to protect us from disease, and we need our doctors fully empowered to detect and treat vector-borne illness in families. Trust me, with climate change, a whole whack of it is coming our way, so we better get good at it fast.

Turning anger to inspiration flows from the determination and love that I saw embodied by mothers for their families yesterday. I saw that resolve in action in the most dire circumstances, and it moved me. Mothers don’t roll over, they press on, they forge hope, and they find ways to make it happen. That’s what we have to do in 2014, for the good of all our families, the way moms do. 

This is affectionately dedicated to Christine Lindberg, nurse-mother extraordinaire who refused to give up on hope.

This blog is about the rise of Lyme disease and other tick borne infections, in British Columbia and across Canada, and the failure of public health agencies to adequately warn and protect the public from this debilitating disease. Its purpose is to alert people to a danger that increasingly surrounds them, in the outdoors and in their backyards, and to pressure government, opinion leaders and public health officials to reform the medical framework for Lyme disease diagnosis and treatment. Today, due to faulty tests, lack of physician knowledge and inadequate treatment protocols, many patients are being forced to live with a devastating chronic illness rather than being given medically necessary care. Most have to travel to the United States to purchase healthcare they are entitled to under law in Canada, but currently denied. Many people are living in poverty as a result of personally financing antibiotics, which are the sole control and cure for chronic Lyme disease. This blog discusses issues and offers resources relating to Lyme disease diagnosis and cure. It aspires to be an instrument of change.