Both Sides Now

The second day of the conference dawned, sunny and early, and closed with an attitude of hopeful optimism. One of the most interesting experiences at the Lyme Disease Framework Conference today was listening to 4 experts in various fields shed light on progress and problems with Lyme disease testing and diagnosis. This is certainly the ‘hot-button’ topic of the conference, and of the controversy in general, but I came away with pride in the mostly respectful interactions that occurred. A few years ago, the polarizing climate of anger would have made these talk downright impossible. We’ve moved forward as a collective. And that’s encouraging to see. there was so much to digest today, but I feel like after so many years of hitting brick walls, we are finally on the road to change.

It was an extremely productive day but a draining one. Kindly walk past my absurd grammar mistakes and typos. Nothing to see there ;). I am so beyond exhausted, but wanted to throw down a few thoughts before getting up tomorrow to attend the final day, where we will be making extremely important suggestions for the framework.

The conference moderator Mr. Normandeau set the tone by encouraging us “to be hard on the issues and soft on the people”. His summation of the points patients and advocates raised last night when we briefly shared our stories was on point.

opening remarks from Mr. Normandeau

We as a community have every right to be angry, to be furious at the systemic problems and physicians that left so many patients untreated or reeling from misdiagnoses. The conference is not the time to vent that 27+ year anger, but channel those emotions into more productive areas. But today for the most part, we set aside our (surface) anger to focus on the task at hand. It got tense. At one point, Dr. Bowie said during the course of the afternoon that if a certain proposed clinical trial was done, he would “throw a fit”. Many Lyme patients would have had just justifiably thrown a fit over other issues πŸ˜‰ , but thankfully we mostly kept our collective cool. Dr Maloney responded with a quick comeback:

It was certainly eye-opening to hear “familiar” research cited as against the argument of the persistence of Lyme disease post-treatment, and to hear studies about which I’ve read many articles examining their shortcomings be presented as definitive. I was at first frustrated. The bias was palpable. And then I recalled one of the first lessons I learned in history class; that identifying bias is far from a negative thing; everyone has bias, and it tells us where the author is coming from, and neutrally acknowledging bias helps place their comments in context. When examining information from biased sources (and we’re all biased) it’s key to focus on what the differing points are. Once I reshuffled my thinking, I found I learned a great deal about what we might call the CDC/IDSA stance on Lyme disease.

Judging only from what I heard today, and trying to detach myself from my personal bias of 8+ years of background knowledge, I heard these doctors and researchers express their concerns over efficacy of long-term antibiotics [based on research they believed credible (even though many admitted short-comings in the research, which ranged from data collected at uneven times, small control group, and too small a ‘cohort’)], the side effects, the need for more research and the dangers of diagnosing someone with a disease they may not have. Okay, fair enough concerns. However, if you’re a Lyme patient, you feel a sense of urgency to do something, so you don’t get sicker. I recognize that this isn’t something you can understand until to feel the infection in your bones. I wish the issue of informed consent for treating patients longer had come up. I was confused because of the back-and-forth conflicting information on whether or not Lyme disease needs to be a ‘clinical diagnosis’ or not, and what the criteria would be. Arg.

Their were high points and low points in the day. The audience was rightfully outraged when Dr. Patrick of the BCCDC, in response to a question from an audience member said he didn’t want doctors making a hocus pocus 19th century-style clinical diagnosis. Whatevadafuck that’s supposed to mean. I found it quite shocking, personally.

Without commenting on the genuineness of their surprise, the CDC/IDSA-supportors seemed to be disbelieving that patients with an erythema migrans (or ‘bull’s eye rash’) wouldn’t be given treatment in a doctors office, or were required to do testing first (which all parties agree is very inaccurate in early stages). They seemed surprised when multiple patients shared similar experiences. And made it very very clear that the “guidelines were just guidelines” and even expressed confusion why the Lyme disease community was insinuating that doctors needed to treat them “like they were set in stone”? Is it possible they were unaware that there was at least one doctor in the crowd who’d been forced into retirement because they dared to treat ‘outside the guidelines’, or that there are a whole host of physicians who have closed their practice for similar reasons? Curious-er and curious-er.Β  It made it clear to me just how critical it is for all stakeholders to come together for this conference; so we can lay all our concerns on the table, and find common ground. Building suggestions for the framework begins tomorrow, and I expect that will be h.e.a.t.e.d.

I swear in the 7 hours I was there, we collectively agreed on things, most importantly that patients are suffering, and it needs to be addressed now. There’s no quick fix, and I came into this knowing and expecting that. We have work ahead of us. The hardest work begins after the Framework is release: getting the Provinces to implement it. But that’s a battle for the future. One bridge at a time.

Depending on my energy, I’ll be tweeting from the conference. You may have noticed my innate wordiness which I battle in every sentence, so you can imagine sticking to 140 characters was a challenge. I’m at @nbandlyme and in case you’reΒ  wanted to join the convo, the hashtag is #lymeconference.

See you all bright and early tomorrow for the culmination of almost 4 years of hard work bringing bill C442, Federal Framework on Lyme Disease Act, into law. Well done, team. Special shout-out to Elizabeth May for making this possible, and giving hope to so many. <3

The End & The Beginning of The End of The Beginning and the Beginning of the End etc.

Another long journey only leads to a longer one. That’s life. Right? That’s what they tell you. A long, long journey.

I have Lyme disease. It attacks virtually every organ in your body and makes you unable to walk, think, remember, and causes unbearable agony. If you don’t believe me… oh just go out in the woods and ask a tick to climb aboard and you won’t be the one laughing. Especially if you live in Canada.

Ahh Canada. Great country. Nice government (generally), internationally well-liked, free school and health care-> wait. I just hit on my greatest problem. The free health care system. I appreciate that everyone is treated equally and gets all the basic human rights ie) healthcare unlike our southern neighbors BUT. BUT. BUT. I went, on my last legs and on the end of my nerve to the US of A, hoping someone there would help me. Crazy, right? I mean we have GREAT healthcare at home? WRONG. Actually, dead wrong. If I had stayed in Canada, I would have gone down hill and died. I would have died undiagnosed. The doctors would still be standing there, scratching their heads, never able to read the bright green signs of Lyme.

You see, in my beautiful province of BC, there are under 10 cases of Lyme reported by doc’s every year. I will not be the 11th. And the dozens of people that I have met in the supermarkets, in the street, in my school and coffeehouse won’t become statistics either. Because Lyme does not *exist* in BC. It doesn’t even exist in Canada. I can’t walk, can’t remember words, faces, names and places, see terrifying things in hallucinations, I’m in mind-insane-driving pain, my joints ache unbearably and my lips crack, peel and burn (to make it brief) because of a disease I can’t possibly have ’cause I live in Canada. Still, with 28 out of the common 38 symptoms, seven doctors refused to test me. A test, which throws out false positives and negatives, making the results so inaccurate that only 34% get it right. It’s almost comical, in a sadistic way. Surely 75% of the common symptoms would classify me as having Lyme disease, but that’s not good enough for my numerous Canadian doctors. I was saved by two Canadian people, who had ears and hearts and guts: a Naturopath and retired Lyme doctor. My naturopath tested me for Lyme disease, not at a Canadian lab or by using the standard Canadian test, but at a lab in California called Igenix. My blood was screened using a test that up here in cozy Canada the doctors were ignorant to. And after months of suffering and weeks of anxious waiting for the results, I turned up positive. Previously though, retired Doctor Murakami of Hope, BC, listened over the phone to my growing list of bizarre symptoms and concluded by giving me a clinical diagnosis of Lyme. I’m lucky. I was diagnosed and I’m not lying in bed or taking the wrong meds because my doc said I had chronic fatigue, fibromyalgia, MS, arthritis, and even ALS.

Are you seeing the picture?

Are you seeing what we’re up against?
Cause I am. Cause I’m feeling it in my BONES.

Some scientists believe that if Lyme would be taken seriously, its victim count in the USA would be higher than AIDS. I mean this is serious stuff! And because I was so desperately ill and 7 different doctors including our GP, his walk-in clinic doctors,
3 ER docs, 2 pediatricians, and a pediatric rheumatologist couldn’t figure it out, I left. Walked out on the healthcare system and government I had previously believed to be so great.

To them, I would say BITE ME, but gosh something already did.